Thursday, March 26, 2009
Thursday 26th - Sleep
Had a great sleep last night. Even had quite entertaining and fun dreams. That aspiration must have really helped. It's meant that I feel quite good and relaxed today. My brain actually feels like it's almost working to full capacity. Also relieved that all the tests for this week are over.
Thursday 26th - Boney
Today was my bone scan. I met D at Roma St bus station (platform 1, escalator 2) and we went up to the hospital together for the first part of my bone scan. The bone scan is to check if the cancer has progressed at all to my bones. We haven't been given any indication that this may be the case, but I think it's a routine pre-chemo procedure. I hope so!
I had the same guy do the needle, but my veins must have been behaving themselves today because he got it in all right. After that, D and I went back to the city, where we had a lovely breakfast/brunch... perhaps lunch by that stage as it would have been close on midday. We wandered through Myer to have a look at computers (D) and hats (me) and to a wig shop just to feel like what it was like in there. We also went to a super-nerdy comic book games shop and then moseyed back up to the hospital for the actual scan.
That involved lying on another narrow bed thing (they should really invent lumbar support rolls for those things) with the tops of my feet taped together, heels apart. My arms were in a kind of blue sack, which kept them at my side but my shoulders hunched forwards a bit, making it not so comfortable to relax or breathe because my head was a bit bent forward.
I had to lie still for 20 minutes or so. That was hard. You know when you have to lie still and you want to twitch your toe or scratch your ear...? But I managed to do it satisfactorily, or at least, they didn't ask me to repeat the exercise.
The big flat camera thing came very very close to me this time (as I'd been warned). It was so close that I felt that if I tipped my head, my nose would touch it. I kept my eyes closed most of the time because it was just too close. When I opened them after about 10 minutes, I was really surprised to see that I'd moved, well, the bed had moved, away from the doughnut and the camera was photographing my body further down. I hadn't even felt like I was moving at all.
As I was moved outwards, I could see the screen with the photographs being taken. There was a really vivid white spot in my pelvis that had me worried but the assistant explained that it was just the radioactive stuff that they'd given me, which gets expelled through the urine.
I was nicely wrapped up in a blanket the whole time, and D was allowed to stay in the room and keep tapping away on his computer creating his game. It was actually really reassuring to hear the tippety tap of him typing, as we couldn't really talk due to my immobility and the low camera.
Once that was over with, we had another photo session, this time with my elbows up. That only took about 5 minutes, so wasn't too bad at all. We came home by bus. Had contemplated walking but the sun was quite low and hot by then so decided bus was best. Stopped off for a spot of supermarket shopping on the way home and then both of us talked to Mum on skype to catch up. I'll hopefully talk to Dad tomorrow morning before we go in. D offered to come with us tomorrow, which was nice. I think we'll just go on our own for this time. There will be plenty of other times.
I had the same guy do the needle, but my veins must have been behaving themselves today because he got it in all right. After that, D and I went back to the city, where we had a lovely breakfast/brunch... perhaps lunch by that stage as it would have been close on midday. We wandered through Myer to have a look at computers (D) and hats (me) and to a wig shop just to feel like what it was like in there. We also went to a super-nerdy comic book games shop and then moseyed back up to the hospital for the actual scan.
That involved lying on another narrow bed thing (they should really invent lumbar support rolls for those things) with the tops of my feet taped together, heels apart. My arms were in a kind of blue sack, which kept them at my side but my shoulders hunched forwards a bit, making it not so comfortable to relax or breathe because my head was a bit bent forward.
I had to lie still for 20 minutes or so. That was hard. You know when you have to lie still and you want to twitch your toe or scratch your ear...? But I managed to do it satisfactorily, or at least, they didn't ask me to repeat the exercise.
The big flat camera thing came very very close to me this time (as I'd been warned). It was so close that I felt that if I tipped my head, my nose would touch it. I kept my eyes closed most of the time because it was just too close. When I opened them after about 10 minutes, I was really surprised to see that I'd moved, well, the bed had moved, away from the doughnut and the camera was photographing my body further down. I hadn't even felt like I was moving at all.
As I was moved outwards, I could see the screen with the photographs being taken. There was a really vivid white spot in my pelvis that had me worried but the assistant explained that it was just the radioactive stuff that they'd given me, which gets expelled through the urine.
I was nicely wrapped up in a blanket the whole time, and D was allowed to stay in the room and keep tapping away on his computer creating his game. It was actually really reassuring to hear the tippety tap of him typing, as we couldn't really talk due to my immobility and the low camera.
Once that was over with, we had another photo session, this time with my elbows up. That only took about 5 minutes, so wasn't too bad at all. We came home by bus. Had contemplated walking but the sun was quite low and hot by then so decided bus was best. Stopped off for a spot of supermarket shopping on the way home and then both of us talked to Mum on skype to catch up. I'll hopefully talk to Dad tomorrow morning before we go in. D offered to come with us tomorrow, which was nice. I think we'll just go on our own for this time. There will be plenty of other times.
Wednesday 25th - Cancer buddy
On Wednesday morning I was able to video-skype with a friend of mine who lives in the US and is two cycles through his chemotherapy. It was really great to be able to talk to someone who can understand more what it's like, learning this new language of cancer. He lives there with his wife (they are both kiwis) and their cat, so we can share cat stories too. Our cats are even friends on Facebook.
Wednesday 25th - Pizza!
Wednesday night we were so bushed that we ordered pizza in and ate it with neighbour J. I'm afraid we weren't much company for her because we were so tired, but we had a lovely night watching Spicks and Specks and The Gruen Transfer. J is probably horrified about the amount of TV we watch. She also has a sewing machine which I can borrow if I want to - yay! The CCQ gave me a booklet about managing hair loss and it included a pattern to make your own 'turban'. A turban is basically a little hat made of stretchy teeshirt material that you wear on your head (duh) under a hat, or just around the hous or while sleeping. KA has also volunteered to make me some in NZ too. I just have to scan and email her the pattern.
Wednesday 25th - Wigging out
After the hospital, I caught the bus back to town for a nice lunch with TW and LL. I got there quite early and had a good catch up with K before I went out with the other two. Lunch was lovely and then LL and I headed up to Gregory Terrace to find the Cancer Council to have a look at their "wig library". It turned out that the CCQ was at FIVE HUNDRED and fifty three, not fifty three as I'd written down. At least we got a little bit of exercise!
The wig library was a bit smaller than I'd envisioned, just a room with a dressing table/mirror and a cupboard full of wigs. I liked the first one I tried on and then I got to choose a turban and another hat to take away with me. It was quite fun and the best thing is that the items are all on loan, so they didn't cost a thing. L wants to try the wig on but I'm sure with his hair it will stretch. At the moment it still looks a bit bouffy on me because my own hair underneath adds bulk.
Afterwards, LL and I had a very quiet and relaxing beer at a nearby hotel, old style on the verandah under the shade. We were the only people there and it was fabulous. We had a lovely time just chatting about this and that and 'talking shit'.
The wig library was a bit smaller than I'd envisioned, just a room with a dressing table/mirror and a cupboard full of wigs. I liked the first one I tried on and then I got to choose a turban and another hat to take away with me. It was quite fun and the best thing is that the items are all on loan, so they didn't cost a thing. L wants to try the wig on but I'm sure with his hair it will stretch. At the moment it still looks a bit bouffy on me because my own hair underneath adds bulk.
Afterwards, LL and I had a very quiet and relaxing beer at a nearby hotel, old style on the verandah under the shade. We were the only people there and it was fabulous. We had a lovely time just chatting about this and that and 'talking shit'.
Wednesday 25th - Talk
I talked to another patient today. This was the first time I'd talked to another person at the Breast Care clinic. I was in the bathroom by the waiting room and there was a lady there holding two drain bags and I commented to her 'I recognise those bags.' She looked like she was trying to do something so I offered to help. She wanted to squeeze as much of the fluid out of the holding container into the bags as possible. I always had L do mine, so I did hers for her.
She said her husband wouldn't do it in public. I squeezed as much as I could but she'd already done a good job. She'd had them in for several days, poor thing. We talked about the inconvenience of them a bit and I felt a bit hopeless because I couldn't squeeze more out of them, but I think they were done to the end. I wished her luck getting them out that day. It was really nice to talk to someone else. Usually because I have my whanau support group with me so I talk with them.
She said her husband wouldn't do it in public. I squeezed as much as I could but she'd already done a good job. She'd had them in for several days, poor thing. We talked about the inconvenience of them a bit and I felt a bit hopeless because I couldn't squeeze more out of them, but I think they were done to the end. I wished her luck getting them out that day. It was really nice to talk to someone else. Usually because I have my whanau support group with me so I talk with them.
Wednesday 25th - Surprise
The appointment for the draining session ("aspiration") was at 10.30 upstairs on level 3 where they do the scans. I had just enough time to get to the cafe to grab a cheese and cracker pack and a coffee before heading up. I foolishly hadn't had any breakfast (because I wasn't hungry and was expecting to meet a friend for coffee mid-morning, not have more things poked in me), but knew I'd need some blood sugar to get me through the next bit.
I waited in the waiting room for a good 40 minutes before I had my session, as I'd been slotted in at the last minute. The scan-nurse was really nice as was the other nurse and the doctor. They scanned my breast and could see a wide, flat pool of liquid which was 6x6x1 cm. The doctor came in and gave me some local anaesthetic in my breast. That wasn't too bad because I still didn't have a lot of sensation in that area anyway. When they asked me, I lied a little bit and said I did, so that they'd be more gentle! I'm sure they would have been the same anyway.
I didn't look, but they put a large-ish needle attached to a syringe in. Apparently it was even bigger than the needle used for the biopsy. Yikes. I could feel them using gauze to stem any leakage and suddenly developed a strong fascination with the sprinkler valve on the roof above me and to the right.
The doctor and the nurse sucked the fluid out. I could hear the sucking in the tube a bit, which wasn't pleasant to think about, back to concentrating on the sprinkler valve. They had to change the vial at one stage, but I couldn't feel a thin, could only hear them talking about it. At the end, they really wanted to squeeze the last remaining fluid out, and squeeze they did! I felt like a lemon being squeezed of its last juice. They got out another mil or two, removed the needle, and then out a waterproof gauze thing over the hole.
They got 57 ml out. It was clear, not murky, which was a good sign of no infection. They advised me to keep going with the antibiotics anyway.
Apparently people can have 100s of ml removed, and several sessions. I hope I don't have to go back there.
My breast definitely looked 'flatter' on the top afterwards. I hadn't really thought about it before then because my breasts are quite round and firm anyways and the blood which had pooled just made my left one look more 'normal' to me. The nurse said it would be more comfortable for me. It hadn't been particularly uncomfortable, but on Wednesday night I slept so well and even had nice normal dreams, so it must have made a difference. It's definitely more of a match for size with the right one now.
I waited in the waiting room for a good 40 minutes before I had my session, as I'd been slotted in at the last minute. The scan-nurse was really nice as was the other nurse and the doctor. They scanned my breast and could see a wide, flat pool of liquid which was 6x6x1 cm. The doctor came in and gave me some local anaesthetic in my breast. That wasn't too bad because I still didn't have a lot of sensation in that area anyway. When they asked me, I lied a little bit and said I did, so that they'd be more gentle! I'm sure they would have been the same anyway.
I didn't look, but they put a large-ish needle attached to a syringe in. Apparently it was even bigger than the needle used for the biopsy. Yikes. I could feel them using gauze to stem any leakage and suddenly developed a strong fascination with the sprinkler valve on the roof above me and to the right.
The doctor and the nurse sucked the fluid out. I could hear the sucking in the tube a bit, which wasn't pleasant to think about, back to concentrating on the sprinkler valve. They had to change the vial at one stage, but I couldn't feel a thin, could only hear them talking about it. At the end, they really wanted to squeeze the last remaining fluid out, and squeeze they did! I felt like a lemon being squeezed of its last juice. They got out another mil or two, removed the needle, and then out a waterproof gauze thing over the hole.
They got 57 ml out. It was clear, not murky, which was a good sign of no infection. They advised me to keep going with the antibiotics anyway.
Apparently people can have 100s of ml removed, and several sessions. I hope I don't have to go back there.
My breast definitely looked 'flatter' on the top afterwards. I hadn't really thought about it before then because my breasts are quite round and firm anyways and the blood which had pooled just made my left one look more 'normal' to me. The nurse said it would be more comfortable for me. It hadn't been particularly uncomfortable, but on Wednesday night I slept so well and even had nice normal dreams, so it must have made a difference. It's definitely more of a match for size with the right one now.
Wednesday 25th - Post-op check up
I waited about 40 minutes for my post-op check up. It was with Dr Ben again, plus resident. It was funny because when I got in there, they'd just brought in some more chairs in preparation for my whanau support group. They were very surprised that it was just me.
Ben asked me about the red patch and had a look as well. He pressed on it (gently) and remarked to the resident how it goes white and then red again, which indicated a seroma, a pocket of fluid in the cavity. It's very common after breast surgery. The doctor who'd seen me briefly on Monday also had a quick look and confirmed that it was a seroma and that I've have to have it drained. Not what I was wanting to hear! I asked if it could be done on Thursday but efficient Patsy organised it for that very morning, because they wouldn't have the resources on Thursday. In a way it was good, because I didn't have time to get worried about it. Aside from that, the post-op check up was good and over with fairly quickly.
Ben asked me about the red patch and had a look as well. He pressed on it (gently) and remarked to the resident how it goes white and then red again, which indicated a seroma, a pocket of fluid in the cavity. It's very common after breast surgery. The doctor who'd seen me briefly on Monday also had a quick look and confirmed that it was a seroma and that I've have to have it drained. Not what I was wanting to hear! I asked if it could be done on Thursday but efficient Patsy organised it for that very morning, because they wouldn't have the resources on Thursday. In a way it was good, because I didn't have time to get worried about it. Aside from that, the post-op check up was good and over with fairly quickly.
Wednesday 25th - Physio
I thought that on Wednesday I was going to have a straightforward day with just a check up with Hildegard, but I was wrong! When I signed in at the front desk, they told me that I was seeing the doctor as well. I vaguely remember making this post-op appointment...
I did see Hildegard after seeing the doctor and she was pleased with my progress. The massaging she'd shown me really did work, even though I didn't enjoy doing it because the sensation of the massage wasn't so pleasant. But it produced the desired result, which was good.
I did see Hildegard after seeing the doctor and she was pleased with my progress. The massaging she'd shown me really did work, even though I didn't enjoy doing it because the sensation of the massage wasn't so pleasant. But it produced the desired result, which was good.
Tuesday 24th - CT Scan
C and I took a bus one stop down to the Mater to QScan. We were about 20 minutes early but they had us wait in the waiting room until someone brought me about 600ml of liquid which I had to drink every 15 minutes. That was at about 3.20pm and we asked if it was OK to leave the building while I drank it. It was fine and I set the alarm on my phone to go every 15 minutes as a reminder. We walked down to the coffee shop on the corner. I realised that T worked at the Mater and gave her a call to see if she was able to join us. She did, and the three of us had a coffee and a chat. It was the best waiting time ever. L was finishing work at around 4, so when he called I suggested he join us. He walked over from his work and got there just in time for us to head back up for the scan.
I went in on my own and had to put a gown on. They did end up putting a needle thingie in me, but they were very skilled. I lay down on a bed thing, which moved through the doughnut. They gave me an injection of something, which as they'd warned me, made me feel very warm and gave me a metallic taste in my mouth. It was a very strange sensation, especially as the further the warmth travelled down my torso, the warmer it became and made me feel like I'd wet my pants. They told me I'd feel like that, and they were right. It only lasted about 30 seconds though, thankfully.
I lay still, breathed in, held it, breathed normally, as the machine instructed. It was over in a matter of minutes and I was able to get dressed and join L out in the waiting area. C and M gave us a lift back to L's car and we went home for a well-deserved rest.
I went in on my own and had to put a gown on. They did end up putting a needle thingie in me, but they were very skilled. I lay down on a bed thing, which moved through the doughnut. They gave me an injection of something, which as they'd warned me, made me feel very warm and gave me a metallic taste in my mouth. It was a very strange sensation, especially as the further the warmth travelled down my torso, the warmer it became and made me feel like I'd wet my pants. They told me I'd feel like that, and they were right. It only lasted about 30 seconds though, thankfully.
I lay still, breathed in, held it, breathed normally, as the machine instructed. It was over in a matter of minutes and I was able to get dressed and join L out in the waiting area. C and M gave us a lift back to L's car and we went home for a well-deserved rest.
Tuesday 24th - A wee break & more drugs
We left the hospital and made our way to the bus stop, caught a bus to Cultural Centre, and strolled leisurely through the park at South Bank. Stopped off for a lovely leisurely lunch at one of the cafes down there and then wandered over to nearby Eve Health.
Dr Yazdani was happy to see me (he always is so jovial; it's nice), and was glad that I'd made an appointment to see him before chemo starts. He gave me some more scripts and told me to stop the Femara, but continue with the Synarel. The first script he gave me was for
which will stop me from getting my period within the next 2 weeks. The rough plan (as I had understood it) was for me to get my period and then start chemo, but as I'm starting chemo first, he doesn't want me to get my period until later in the first cycle. He also gave me the script for the injections I'll be taking in place of the synarel. I have been given specific instructions not to lose that one as it has a special code attached to it. He very much knows what he's doing.
I had a quick talk to the nurse afterwards and she wished me well with everything. She was very pleased that we'd got seven embryos successfully frozen.
Dr Yazdani was happy to see me (he always is so jovial; it's nice), and was glad that I'd made an appointment to see him before chemo starts. He gave me some more scripts and told me to stop the Femara, but continue with the Synarel. The first script he gave me was for
which will stop me from getting my period within the next 2 weeks. The rough plan (as I had understood it) was for me to get my period and then start chemo, but as I'm starting chemo first, he doesn't want me to get my period until later in the first cycle. He also gave me the script for the injections I'll be taking in place of the synarel. I have been given specific instructions not to lose that one as it has a special code attached to it. He very much knows what he's doing.
I had a quick talk to the nurse afterwards and she wished me well with everything. She was very pleased that we'd got seven embryos successfully frozen.
Tuesday 24th - Heart
After C arrived, we made our way up to Nuclear Meds. That is not my favourite part of the hospital, after what they did to me last time. But we got there OK and waited about half an hour or so before being invited through to the room where you sit in a big fat armchair thing and they stick needles in. I warned the tech guy that I was a bit of a fainter and he duly made the chair do a lay-z-boy thing and had me as flat as possible. My veins on my right arm are not as good as the ones on the left for the crook-of-the-elbow needles. I didn't look, but he struggled to get it the thingie and after 2 attempts he got a nurse over to do it instead. She got it in in no time. C said afterwards that she was glad he didn't do it because his hands were shaking a bit.
They then gave me an injection of "tin" and washed it up with saline. It was a very strange sensation as I could feel it whooshing up my arm. It wasn't unpleasant or painful, just odd. Then we had to wait 20 minutes and they took me through to the imaging room where I had to lie on the bed thing under the flat plates of the camera. They injected something radioactive and something again (not 100% sure what) and washed that up too. Then I had to lie still for 30 minutes while they took photographs of my heart. I wasn't really able to talk so C did her reading. It worked out well.
After that we were free to go. I wanted them to leave the thingie in my arm because I guessed that I'd need it again later in the day for the CT scan. But they weren't allowed to let me leave the hospital with it in and they also said that if I did have an injection with the CT scan, that it would be a bigger needle. Great.
They then gave me an injection of "tin" and washed it up with saline. It was a very strange sensation as I could feel it whooshing up my arm. It wasn't unpleasant or painful, just odd. Then we had to wait 20 minutes and they took me through to the imaging room where I had to lie on the bed thing under the flat plates of the camera. They injected something radioactive and something again (not 100% sure what) and washed that up too. Then I had to lie still for 30 minutes while they took photographs of my heart. I wasn't really able to talk so C did her reading. It worked out well.
After that we were free to go. I wanted them to leave the thingie in my arm because I guessed that I'd need it again later in the day for the CT scan. But they weren't allowed to let me leave the hospital with it in and they also said that if I did have an injection with the CT scan, that it would be a bigger needle. Great.
Tuesday 24th -
Tuesday was a massive day. I knew that I had to go up to the hospital for my heart test thing. I'm writing this on Thursday and I can hardly remember what I did on Tuesday, it's been that kind of a week. I was a bit nervous/scared/anxious about going on my own. Chatting on Facebook to C, she offered to come up with me to hold my hand. As soon as she'd agreed to come, my whole outlook improved. I felt so much better about everything.
We met at the hospital. I was a little bit early, so I had a coffee and made some appointments for later that day: Dr Yazdani at 1.45pm and QScan at the Mater (CT scan) at 3pm. I wanted to keep Wednesday as free as possible for a bit of a normal day.
We met at the hospital. I was a little bit early, so I had a coffee and made some appointments for later that day: Dr Yazdani at 1.45pm and QScan at the Mater (CT scan) at 3pm. I wanted to keep Wednesday as free as possible for a bit of a normal day.
Tuesday, March 24, 2009
Tuesday 24th - Cuddles
Well, after writing all that, L woke up and came into the study, saw that I was upset and gave me lots of cuddles and said that it'll be OK and that we're in this together and we'll get through it together. He also offered to take the day off work, but I said not to, save those days for later on. All good.
Tuesday 24th - Useless
I feel so useless at the moment. Frustrated, upset, scared, sad. I wish I could do more to work and contribute to the income situation. This week's going to be a busy week and L has already stressed how important it is for him to be back at work and working as much as he can, so I'm going to do it on my own. It will be the first time I've been to the hospital on my own and I'm not looking forward to it. He also said that he won't be able to come to every chemotherapy appointment because he'll have to work. Surely one day (and a Friday at that) every three weeks is manageable? I don't know if I'll be able to do it on my own but hopefully it will become 'routine'...? I guess we'll see.
I've been crying on and off non-stop since we got home from the hospital on Monday evening. I guess it's finally sinking in and I'm scared about the unknown. I also wish L wouldn't panic so much about money. It's going to be tough and we'll have to budget but surely he can start making his lunches or something? I know that I'm not contributing financially, but I can't, so stop panicking about it, suck it up and say yes it's difficult but don't worry, we can get through it. Instead, I feel like I'm purposefully holding back and perceived to be not working because I don't feel up to it. Perhaps he's just panicking about the responsibility he has to take on. I do feel like a burden at times. Holding him back from buying his dream home because we've only got one income. Bloody useless.
I've been crying on and off non-stop since we got home from the hospital on Monday evening. I guess it's finally sinking in and I'm scared about the unknown. I also wish L wouldn't panic so much about money. It's going to be tough and we'll have to budget but surely he can start making his lunches or something? I know that I'm not contributing financially, but I can't, so stop panicking about it, suck it up and say yes it's difficult but don't worry, we can get through it. Instead, I feel like I'm purposefully holding back and perceived to be not working because I don't feel up to it. Perhaps he's just panicking about the responsibility he has to take on. I do feel like a burden at times. Holding him back from buying his dream home because we've only got one income. Bloody useless.
Monday 23rd - Oncologist
After waiting for an hour, we saw the oncologist's registrar, had a rather rushed appointment with the oncologist herself, and then had a chat to the nurse afterwards.
The short version is that they want me to start chemo on FRIDAY. This is a lot sooner than expected. This week I'll be rushing around getting all sorts of tests in preparation for it.
I'm going to be on 9 x 3-week cycles. That means that I'll go in once every 3 weeks to have the drugs administered to me. That is a long time, 18 weeks, 5 months. We asked about working during that time and they said 'most people take the time off work'.
Which isn't exactly reassuring because not only do we have to move (with all those expenses) but also we're going to be on one income. L had a panic about that when we got home. Well, there's nothing I can do about it. I'm not going to put myself under undue stress because I have to get back to work as soon as possible or try to work during the treatment if I'm not up to it. We have some savings, and they might just have to go towards supporting us at this time instead of towards our future house deposit. We'll see how we go.
The short version is that they want me to start chemo on FRIDAY. This is a lot sooner than expected. This week I'll be rushing around getting all sorts of tests in preparation for it.
I'm going to be on 9 x 3-week cycles. That means that I'll go in once every 3 weeks to have the drugs administered to me. That is a long time, 18 weeks, 5 months. We asked about working during that time and they said 'most people take the time off work'.
Which isn't exactly reassuring because not only do we have to move (with all those expenses) but also we're going to be on one income. L had a panic about that when we got home. Well, there's nothing I can do about it. I'm not going to put myself under undue stress because I have to get back to work as soon as possible or try to work during the treatment if I'm not up to it. We have some savings, and they might just have to go towards supporting us at this time instead of towards our future house deposit. We'll see how we go.
Monday 23rd - Nurse & Physio
It was a long day at the hospital today, lots of waiting and anticipating.
At the beginning, it was great because I got to see Patsy and Hildegard right away. First Patsy for a chat and then Hildegard for a check. My swelling that I had at the weekend seems to have gone down, which is good.
Hildegard was worried about a red patch on my breast, which they think might be an infection under the skin, so she and Patsy got a doctor to prescribe me some antibiotics. I hadn't even really noticed it.
At the beginning, it was great because I got to see Patsy and Hildegard right away. First Patsy for a chat and then Hildegard for a check. My swelling that I had at the weekend seems to have gone down, which is good.
Hildegard was worried about a red patch on my breast, which they think might be an infection under the skin, so she and Patsy got a doctor to prescribe me some antibiotics. I hadn't even really noticed it.
Tuesday 24th - Busy week
I've got a very busy week lined up this week.
Tuesday - Gated Heart Pool Scan, 9.30am
Wednesday - Physio, 8.50am
Thursday - Bone Scan, 10.15am injection then 1.30pm scan
Friday - First day of Chemotherapy, 11.40am educational chat then 12.30pm drugs
Somewhere in there I also have to fit in a CT scan and look for a place to live. Urg.
Tuesday - Gated Heart Pool Scan, 9.30am
Wednesday - Physio, 8.50am
Thursday - Bone Scan, 10.15am injection then 1.30pm scan
Friday - First day of Chemotherapy, 11.40am educational chat then 12.30pm drugs
Somewhere in there I also have to fit in a CT scan and look for a place to live. Urg.
Tuesday 24th - 3am
Can't sleep. Woke up and felt down about the whole thing. The most frustrating thing is having to move. We did find the perfect place to move into but unfortunately our application wasn't selected, despite being told by the real estate agent that they'd look out for us, etc etc.
The place was just across the road, which would have been an easy move. And it was gorgeous and very reasonably priced. We even offered higher than the advertised rate to help secure it. Not that it worked! I really want somewhere that's going to be 'nice', preferably with some outdoor space, as after yesterday's appointments and discussion, it looks like I'll be home-bound for much of the upcoming 5 months.
We are really disappointed in the real estate agents. I guess they are too 'young' to really understand the impact this is having on us (in addition to all the other crap). Or perhaps the landlord was put off by the thought of a cancer patient? Not that the landlord should know about it (although we did tell the real estate agent). Perhaps the landlord thinks all cancer is terminal and doesn't want the tenants dying on him! Who knows? I shouldn't beat myself up about it but it's just so frustrating and depressing.
I feel like we've had enough of a run of bad luck ('cursed' as L calls it, but I don't believe in that stuff) and could really do with a change here.
The place was just across the road, which would have been an easy move. And it was gorgeous and very reasonably priced. We even offered higher than the advertised rate to help secure it. Not that it worked! I really want somewhere that's going to be 'nice', preferably with some outdoor space, as after yesterday's appointments and discussion, it looks like I'll be home-bound for much of the upcoming 5 months.
We are really disappointed in the real estate agents. I guess they are too 'young' to really understand the impact this is having on us (in addition to all the other crap). Or perhaps the landlord was put off by the thought of a cancer patient? Not that the landlord should know about it (although we did tell the real estate agent). Perhaps the landlord thinks all cancer is terminal and doesn't want the tenants dying on him! Who knows? I shouldn't beat myself up about it but it's just so frustrating and depressing.
I feel like we've had enough of a run of bad luck ('cursed' as L calls it, but I don't believe in that stuff) and could really do with a change here.
Monday, March 23, 2009
Monday 23rd - Other Blogs
Last night I did a search online for some other breast cancer blogs, and I found a wonderful one called "Alright Tit". That is going to be some of my core reading during chemo. It's brilliant!
Monday 23rd - Deep Freeze 7
Had a call from Dr Yazdani. All seven fertilised eggs got put in the deep freeze. Yay!
I also told him about the inappropriate pornography (to help the guys) at the QFG clinic. I was really nervous telling him for some reason, but he appreciated me doing so and also said it was inappropriate. I was going to tell the QFG people directly but I think he'll have a bit more clobber, being one of the Directors.
I also told him about the inappropriate pornography (to help the guys) at the QFG clinic. I was really nervous telling him for some reason, but he appreciated me doing so and also said it was inappropriate. I was going to tell the QFG people directly but I think he'll have a bit more clobber, being one of the Directors.
Monday 23rd - Poo
This is funny and so accurate. Bristol Stool Chart.
And this one is just funny. And also accurate! Poo List.
And this one is just funny. And also accurate! Poo List.
Sunday, March 22, 2009
Sunday 22nd - Wonderful
L cooked a wonderful meal tonight, light and healthy but also high in protein. Just what I felt like and just what's needed.
Sunday 22nd - Pink Pilates
Mum had mentioned to me about 'Pink Pilates', which is a pilates class started in NZ especially for women recovering from breast cancer. I thought it sounded great! It's even subsidised in NZ.
It sounded perfect because I've started looking for something 'social' to do, which is also good for my body, gets me interacting with people, and out of the house. My study (by distance) keeps my mind ticking over and definitely gives me something to do, but it isn't exactly interactive (except in the virtual Discussion Board online), and certainly isn't physically active.
I thought I'd contact the Cancer Council Queensland to ask if there is anything similar here, and as I was looking it up online, I discovered that there are indeed classes here in Brisbane... and only a stone's throw from where we live! I rang them to enquire and left a message for them to call me back.
However, on closer investigation of their site, unfortunately the Pink Pilates is not subsidised like it is in NZ. Sadly, I don't know if I will be able to afford it. I'll enquire anyways and try to find out if there is any possibility of outside funding.
It sounded perfect because I've started looking for something 'social' to do, which is also good for my body, gets me interacting with people, and out of the house. My study (by distance) keeps my mind ticking over and definitely gives me something to do, but it isn't exactly interactive (except in the virtual Discussion Board online), and certainly isn't physically active.
I thought I'd contact the Cancer Council Queensland to ask if there is anything similar here, and as I was looking it up online, I discovered that there are indeed classes here in Brisbane... and only a stone's throw from where we live! I rang them to enquire and left a message for them to call me back.
However, on closer investigation of their site, unfortunately the Pink Pilates is not subsidised like it is in NZ. Sadly, I don't know if I will be able to afford it. I'll enquire anyways and try to find out if there is any possibility of outside funding.
Sunday 22nd - Swelling subsided
My swelling seems to have subsided a bit as well, which I've very happy about. The tummy is a little bit less bloated, and my upper arm and side of my breast, which had felt very tight and swollen yesterday, have gone down and almost feel normal. I still have limited sensation on my upper arm, a little bit on the shoulder, and under my arm towards the elbow, but it feels 'normal' as long as there is nothing touching it.
I've also noticed that when I go from a warm area into a cool area, for example from outside into the supermarket, or into the cool section of the supermarket, that that area goes prickly with the cold. My whole body does when it changes temperature quickly (hairs raising up on arms), but it's a stronger feeling in that particular area. Must be more sensitive.
I've got to remember to keep patting the back of my arm, to help regain sensation. I've also been doing my exercises. Mum said that the 6-week mark is key. Until then the tissue is healing and easier to stretch. After then, it's scar-tissue and much more difficult to stretch. This news has certainly spurred me on to get my full range of motion back. I'm getting there, but the upwards salute is still the most difficult.
I've also noticed that when I go from a warm area into a cool area, for example from outside into the supermarket, or into the cool section of the supermarket, that that area goes prickly with the cold. My whole body does when it changes temperature quickly (hairs raising up on arms), but it's a stronger feeling in that particular area. Must be more sensitive.
I've got to remember to keep patting the back of my arm, to help regain sensation. I've also been doing my exercises. Mum said that the 6-week mark is key. Until then the tissue is healing and easier to stretch. After then, it's scar-tissue and much more difficult to stretch. This news has certainly spurred me on to get my full range of motion back. I'm getting there, but the upwards salute is still the most difficult.
Sunday 22nd - Better than yesterday
Feeling much better than yesterday. I didn't sleep so well again, but this time it wasn't the getting up to pee...
I took something called Senakot, which is a laxative... and, yes, it worked! I don't think I've ever taken a laxative before. Certainly not experienced anything like this except with food poisoning. The packed said 2 - 4 tablets, so I took 2 in the afternoon, which had a little bit of an effect. So then I took 2 more in the evening and... definitely there was an effect.
I woke in the night with some severe cramping and then 'result'. Result several times in the night. I think I can understand how people have accidents in their beds now. It was so hard to drag myself up and to the toilet. But I did it and then even cleaned the toilet later on in the morning, luckily for Mike.
Things settled down a bit by mid morning, thankfully.
One thing I discovered while researching bowel movements (and their causes) online was the 'Bristol Stool Chart'. Have a look. It is very descriptive and so accurate!
I took something called Senakot, which is a laxative... and, yes, it worked! I don't think I've ever taken a laxative before. Certainly not experienced anything like this except with food poisoning. The packed said 2 - 4 tablets, so I took 2 in the afternoon, which had a little bit of an effect. So then I took 2 more in the evening and... definitely there was an effect.
I woke in the night with some severe cramping and then 'result'. Result several times in the night. I think I can understand how people have accidents in their beds now. It was so hard to drag myself up and to the toilet. But I did it and then even cleaned the toilet later on in the morning, luckily for Mike.
Things settled down a bit by mid morning, thankfully.
One thing I discovered while researching bowel movements (and their causes) online was the 'Bristol Stool Chart'. Have a look. It is very descriptive and so accurate!
Saturday, March 21, 2009
Saturday 21st - Frustration & Elvis
Had a few moments of frustration and misery today, no doubt brought on by the discomfort from the bloating and constipation. A few tears this morning - frustration and a tiny bit of despair. But I felt better after a little while with some cuddles from Mike and a chat (including a funny story about a dog) with Mum online. Chatting is great because you can type and not worry about your voice breaking. Later on I watched some 'Funniest Home Videos' which was good for a bit of laughter too. Silly, but funny.
I feel like I've had enough of my body misbehaving itself. We went to the supermarket and the chemist and I got some poo-inducing foods. I forgot to get the kiwifruit though! I know it's going to be bad during chemo too... not looking forward to that side of things. I did make a little progress today in that I managed a little poo. It sure took its time coming though! I felt like Elvis Presley, but had read on the internet (while researching constipation) not to 'strain' like he did, so I just did a lot of pacing, deep breathing and sitting. I was pleased that there was a little result but I know there's more to come.
Had a snooze this afternoon on the bed, with my arm propped up on a pillow. We were worried about it swelling up, which it has a tiny bit at the upper arm, but will wait until Monday when we have appointments with the breast nurse and the physio prior to seeing the oncologist. I was a lot more tired than I thought I was and even slept properly during my little doze. I guess my body is still telling me that it's working overtime. Probably still recovering from getting up so many times in the night for a pee. Hopefully systems will be back to normal soon before the next stage starts.
I feel like I've had enough of my body misbehaving itself. We went to the supermarket and the chemist and I got some poo-inducing foods. I forgot to get the kiwifruit though! I know it's going to be bad during chemo too... not looking forward to that side of things. I did make a little progress today in that I managed a little poo. It sure took its time coming though! I felt like Elvis Presley, but had read on the internet (while researching constipation) not to 'strain' like he did, so I just did a lot of pacing, deep breathing and sitting. I was pleased that there was a little result but I know there's more to come.
Had a snooze this afternoon on the bed, with my arm propped up on a pillow. We were worried about it swelling up, which it has a tiny bit at the upper arm, but will wait until Monday when we have appointments with the breast nurse and the physio prior to seeing the oncologist. I was a lot more tired than I thought I was and even slept properly during my little doze. I guess my body is still telling me that it's working overtime. Probably still recovering from getting up so many times in the night for a pee. Hopefully systems will be back to normal soon before the next stage starts.
Saturday 21st - Tummy
Yesterday my tummy was very swollen and sticking out a lot. It still is today, but not quite so much. It's uncomfortable and sore. I've been drinking lots and lots of water as recommended to prevent OHSS. I had to get up about 7 times in the night for a pee. I also realise that I have only done one little poo since the operation on Wednesday. I think the drugs they give me make me constipated, as I was severely constipated after the second operation. I hope I don't get that constipated again! I also hope there is nothing else wrong with my bowel. The day I went in with the dimple on my breast, I also had abdominal bloating took 'movocol' for it, as recommended by the doctor. It worked eventually.
Recently my diet hasn't changed a lot except for drinking a lot more water and drinking some protein drinks to prevent the OHSS. I've been drinking/adding metamucil to my diet on an occasional basis, although in the last few days I have added more to try to help me to poo. I eat plenty of vegetables and legumes every day. I was taking 'elevit' until the EPU, but haven't taken it much lately. I've stopped the FSH of course, but am still on the synarel and femara. They didn't seem to have any effect on my bowel movements anyway. It's very frustrating.
Recently my diet hasn't changed a lot except for drinking a lot more water and drinking some protein drinks to prevent the OHSS. I've been drinking/adding metamucil to my diet on an occasional basis, although in the last few days I have added more to try to help me to poo. I eat plenty of vegetables and legumes every day. I was taking 'elevit' until the EPU, but haven't taken it much lately. I've stopped the FSH of course, but am still on the synarel and femara. They didn't seem to have any effect on my bowel movements anyway. It's very frustrating.
Friday, March 20, 2009
Friday 20th - Great communication
I had a call from the Oncology people at the RBWH this morning to confirm my appointment for Monday (and to arrive haf an hour beforehand). They are so great like that - ringing to check. Then I had a call from Patsy (the breast nurse) who asked me if I wanted to make an appointment to see her and the physio, Hildegard, just prior to the oncology appointment. I said, yes please. They are so good to ring and follow up and confirm. I really appreciate that and I feel lucky to have such a great team with me.
Friday 20th - IVF: What next?
The remaining embryos will be frozen today, where they will remain until we need them. All very exciting. I am still recovering from the operation. The nurse from QFG rang me yesterday morning to ask how I was doing. I was doing fine then! But now it's got a bit sorer. I was warned that this would happen, so I just have to monitor myself and keep my fluids and protein up. I've been given a list of symptoms of mild OHSS and instructions on what to do if it gets worse. So far, things are 'normal'.
I can expect to get my period in about 2 weeks. That will be my last period for a long time. I'm still on the synarel and the femara drugs which keep my hormones at an absolute minimum. I'll get my period because of the injection which I gave myself on Monday night, which got my body ready to 'release' the eggs for the doctors to catch when they did the EPU. My body now thinks that I've ovulated (well, I have) and will act as normal, and shed the lining of the uterus. I must be very careful now to use protection if we have sex, as the last thing we want right now is to get pregnant! Not that it's likely to happen, as that's the last thing on my mind!
I also will see Dr Yazdani in about 2 weeks, for a check up and to see how everything is going. Hopefully that will be the end of that little adventure for the time being (as nice as Dr Yazdani is), because the new adventure of chemotherapy will be starting, which I think will be more than enough to keep us occupied.
I can expect to get my period in about 2 weeks. That will be my last period for a long time. I'm still on the synarel and the femara drugs which keep my hormones at an absolute minimum. I'll get my period because of the injection which I gave myself on Monday night, which got my body ready to 'release' the eggs for the doctors to catch when they did the EPU. My body now thinks that I've ovulated (well, I have) and will act as normal, and shed the lining of the uterus. I must be very careful now to use protection if we have sex, as the last thing we want right now is to get pregnant! Not that it's likely to happen, as that's the last thing on my mind!
I also will see Dr Yazdani in about 2 weeks, for a check up and to see how everything is going. Hopefully that will be the end of that little adventure for the time being (as nice as Dr Yazdani is), because the new adventure of chemotherapy will be starting, which I think will be more than enough to keep us occupied.
Friday 20th - Strange dreams
I had very strange dreams last night/this morning. I wonder if it's the protein? Normally, if I eat too much cheese before I go to bed, I get strange dreams. But these ones were even stranger! I guess it's my brain processing things. I think the whole embryo/baby/fertility thing is affecting me more than I thought it would. I actually felt a little bit sad for the 4 which didn't make it. Hmm, it's also possible that the drugs are making me a bit more highly strung than usual! Normally, I'd be very rational about that kind of thing (I'd like to think).
Friday 20th - Sick of being sick
Yesterday I thought to myself, for the first time, I'm sick of being sick. Ugh. I guess I must be feeling better if I feel that way. I do feel kind of restless at the moment. But then I realised, I will have to get used to this feeling (of not being 100%). There's still a long road ahead. I think the main thing for me is to keep thinking far ahead, into that part when I'm well again and completely back on my feet. I'm looking forward to that!
Friday 20th - A better sleep
I slept a bit better last night, although I woke up with pain in my ovaries (well, somewhere in there) and had to get up and take some paracetamol. It was quite bad and my tummy remains fairly swollen. This is all normal though and is a mild form of OHSS, ovarian hyperstimulation syndrome. I have to drink 3 litres of water per day (which is a struggle) and also eat plenty of protein. I do feel a bit queasy this morning, but nothing more than how I've felt in the last few weeks.
I did manage to sleep from about 10.30pm until 7.30am, except for the getting up. Much better than the night before when I didn't get to sleep until after 3am and then was awake and up at 6am. I can't believe I stayed awake all day yesterday. I think maybe my brain is starting to get back to it's full capacity now and I've got time to let things sink in a bit. Not sure if this is a good thing or not. Probably is, because it can help me process things, whether I want to or not.
I did manage to sleep from about 10.30pm until 7.30am, except for the getting up. Much better than the night before when I didn't get to sleep until after 3am and then was awake and up at 6am. I can't believe I stayed awake all day yesterday. I think maybe my brain is starting to get back to it's full capacity now and I've got time to let things sink in a bit. Not sure if this is a good thing or not. Probably is, because it can help me process things, whether I want to or not.
Thursday, March 19, 2009
Thursday 19th - Netball team
Had a call from Dr Yazdani tonight and we've gone from a football team to a netball team. I asked why the 4 didn't get fertilised, and he said that there is a normal success rate of 75% for fertilisation. We're a bit below that, but it's OK because we had a fairly high number of eggs. Apparently, the eggs just aren't ready to be fertilised. It sounds good to me because it means it's the strong ones which will be the survivors! They'll grow a little bit more tonight and then get put in the deep freeze on Friday.
Thursday 19th - Little sleep
L was up with the birds this morning, and I couldn't sleep in much myself. I was up by about 6.00am. In bed last night by 3am. That is a very late night for me. I do feel tired today but not enough to have a nap. Here's hoping an early night tonight will do the trick. I'm awake enough to do basic tasks but have some study to catch up on yet. I don't think I could do that right now. L rang me at about 7am to make sure I was all right. I think he was worried about leaving me post-GA. I was fine though :-)
Thursday 19th - Sorer
I'm a bit sorer in the tum today that I was last night. It peaked at about midday, but then I had something to eat (had realised that I hadn't eaten anything all day until then) and upped my fluid intake as well. I am really trying to drink those 3 litres of water per day, but it's a struggle! I think I can manage 2. It means I'm going to the bathroom every 20 minutes! Feels like it, anyways.
I had some metamucil yesterday and I'm glad I did, because I think the painkillers they gave me when I was sleeping yesterday must have made me constipated again. Nowhere nearly as bad as before though. I forgot the check with them what they'd given me. I'm sure they told me, but I can't remember. Seems to be better now, although there was a little bit of blood. Had to make sure that wasn't from the vagina, and luckily (I think?) it wasn't.
I've had a few cramps and a few stronger twinges but it's no worse (as yet) than any heavy period pain I've had. I had one little moment of bending double, but who knows, that could have been the constipation!
I had some metamucil yesterday and I'm glad I did, because I think the painkillers they gave me when I was sleeping yesterday must have made me constipated again. Nowhere nearly as bad as before though. I forgot the check with them what they'd given me. I'm sure they told me, but I can't remember. Seems to be better now, although there was a little bit of blood. Had to make sure that wasn't from the vagina, and luckily (I think?) it wasn't.
I've had a few cramps and a few stronger twinges but it's no worse (as yet) than any heavy period pain I've had. I had one little moment of bending double, but who knows, that could have been the constipation!
Thursday 19th - Bravery
People have told me that I'm brave, but I'm not really. In the words of a family friend who went through much worse than I have, we don't actually have a choice. I just get on with it and follow the doctors' advice and read the instructions and find out as much as I can and receive wonderful support from friends and family and get better ASAP.
Some of it's not particularly pleasant. But neither is getting wisdom teeth out or cervical smears or fixing broken bones, but we all get on and do it and before we know it, the yucky bits are a distant memory.
Some of it's not particularly pleasant. But neither is getting wisdom teeth out or cervical smears or fixing broken bones, but we all get on and do it and before we know it, the yucky bits are a distant memory.
Thursday 19th - Choppy
Did you know that the 'predictive text' for the word 'biopsy' comes up as 'choppy'? Apt, I thought.
I did (and do) worry more about having bits lopped off me than the fear of losing my 'womanliness' because it happens to be a breast. I think I'd feel the same way if it was my ear or my finger. It's just not nice to have bits removed. I experienced that the first time I had some moles removed in that I felt like a little piece of me had gone and was never coming back. Interestingly, I never felt that way about tooth removal, although I have managed to keep all my teeth for the tooth fairy.
I've always had a big fear of anything happening to my breasts in general (or anyone's breasts for that matter). I can't bear the thought of slicing or cutting or hurting any part of the body, but in particular such sensitive and soft items as those. I can't watch nip and tuck type shows which broadcast the procedures (even the edited bits), or CSI/SVU type shows where they show or even discuss horrible things that have happened to female victims, especially involving bodily (breast) mutilation. So, the thought of having one of mine taken to with a knife rather freaked me out.
It was the general idea of chopping that worried me more than the (not true) thought that through losing a breast I'd lose a part of who I am as a (female) person.
I did (and do) worry more about having bits lopped off me than the fear of losing my 'womanliness' because it happens to be a breast. I think I'd feel the same way if it was my ear or my finger. It's just not nice to have bits removed. I experienced that the first time I had some moles removed in that I felt like a little piece of me had gone and was never coming back. Interestingly, I never felt that way about tooth removal, although I have managed to keep all my teeth for the tooth fairy.
I've always had a big fear of anything happening to my breasts in general (or anyone's breasts for that matter). I can't bear the thought of slicing or cutting or hurting any part of the body, but in particular such sensitive and soft items as those. I can't watch nip and tuck type shows which broadcast the procedures (even the edited bits), or CSI/SVU type shows where they show or even discuss horrible things that have happened to female victims, especially involving bodily (breast) mutilation. So, the thought of having one of mine taken to with a knife rather freaked me out.
It was the general idea of chopping that worried me more than the (not true) thought that through losing a breast I'd lose a part of who I am as a (female) person.
Tursday 19th - It's not the size that counts
I wasn't ever worried about a simple reduction in size of my breast(s), and I'm still not. I don't see (the size of) my breasts as an essential part of my femininity, nor do I feel that they make me feel sexy or 'womanly' or female. They are just there and sometimes more than a hassle than they are worth (eg breast cancer, heaviness, tenderness, gropingness, not being able to find comfortable bras, which I am very fussy about).
I went through my whole teens with naught bigger than an A cup (predominantly AA) and early 20s a B-cup, so I got very used to the idea that I would never get any bigger in size than that, and accepted that I was beautiful the way I was. Yes, I was envious of larger busted women, coveting a C or D cup, but I'll never feel that way again even if I'm reduced back to less than an A.
After the second operation, I was more worried that I was severly lopsided than anything else, and had even thought about reduction of the right one to match the smaller left. The synarel (menopause-inducing) drug has helped me out in that area already. At the moment, the right one is definitely smaller (but not too flappy!) and left one is still a bit swollen which makes it bigger. I have a feeling that it's retaining a bit of fluid, but not excess, and will go back down eventually on its own or with some assistance from a draining session. Time will tell.
Basically, all I want is a simple matching pair. Size does not even enter into it.
I went through my whole teens with naught bigger than an A cup (predominantly AA) and early 20s a B-cup, so I got very used to the idea that I would never get any bigger in size than that, and accepted that I was beautiful the way I was. Yes, I was envious of larger busted women, coveting a C or D cup, but I'll never feel that way again even if I'm reduced back to less than an A.
After the second operation, I was more worried that I was severly lopsided than anything else, and had even thought about reduction of the right one to match the smaller left. The synarel (menopause-inducing) drug has helped me out in that area already. At the moment, the right one is definitely smaller (but not too flappy!) and left one is still a bit swollen which makes it bigger. I have a feeling that it's retaining a bit of fluid, but not excess, and will go back down eventually on its own or with some assistance from a draining session. Time will tell.
Basically, all I want is a simple matching pair. Size does not even enter into it.
Wednesday 18th - Whiffy
I wonder if I am a bit more 'whiffy' than usual or if I just have a more sensitive nose? Is it the menopause inducing drugs? The heat? The washing powder? (L HAS been in charge of washing... although in my experience they tend to put in too much, not too little.) Maybe I'm simply imagining it.
I admit that I'm not wearing deodorant as often as I did before. Am worried about it stinging the scar plus I can't lift that arm so well (but I'm working on it!). Sometimes I put deodorant under the right arm, but then I think, what's the point? I noticed that even after a shower and a good lather (and have tried 2 different shower gels), I can still smell myself if I sniff closely under my arm (well, I do have to check! Dont say you haven't done it).
L says he hasn't noticed anything. I'm sure he'd tell me if he had. My teeshirts seem to get whiffier more quickly too. Definitely noticeable if I wear one teeshirt all day. Previously, I never had a problem with that. Perhaps it's the current humidity? It is hot. I hope I'm not imagining that either!
I admit that I'm not wearing deodorant as often as I did before. Am worried about it stinging the scar plus I can't lift that arm so well (but I'm working on it!). Sometimes I put deodorant under the right arm, but then I think, what's the point? I noticed that even after a shower and a good lather (and have tried 2 different shower gels), I can still smell myself if I sniff closely under my arm (well, I do have to check! Dont say you haven't done it).
L says he hasn't noticed anything. I'm sure he'd tell me if he had. My teeshirts seem to get whiffier more quickly too. Definitely noticeable if I wear one teeshirt all day. Previously, I never had a problem with that. Perhaps it's the current humidity? It is hot. I hope I'm not imagining that either!
Wednesday, March 18, 2009
Wednesday 18th - How they did it
Transvaginal Egg Pick Up"The procedure is carried out in an operating theatre. The doctor has a small needle (much smaller than it looks in this rather scary diagram) attached to an internal ultrasound probe. The device is inserted into the vagina and when in position, the needle is advanced so that it passes gently through the top wall of the vagina."
(Image & text from here. Not sure about the name of the clinic but it had the best diagram.)
We went through Eve Health and the surgery was at the Queensland Fertility Group Day Theatre.
I was under a "quick general" the whole time and didn't feel a thing. Fifteen hours later I only have a couple of slight twinges. Nothing worse than minor period twangs and nothing like after the CIN2.
Wednesday 18th - L's adventures in fertility-land
When we saw the nurse prior to the EPU, she asked L if he'd bring his contribution in or if he'd do it there. He's under the policy that "fresh is best", so had decided to do it there. There was quite a long set of instructions on how to get to the prescribed room. And apparently a queue as well! It sounded like Alice through the rabbit hole, but luckily the directions were also printed on the back of the DVD cover.
Yes, a DVD and apparently magazines are provided. (But would you want to touch them? I remember moving into a flat once and finding left over magazines from the rooms previous inhabitant... and the pages were STUCK together. Eww.) I asked the nurse what the DVD was (naievely thinking it was instructions on how to get it into the jar or something!) and she said she didn't know, didn't want to know, and that I should ask Mike when we got home. Ha ha.
So, naturally, I did ask! And would you believe it was pornography. OK, I'd figured it out by then. But the funniest part is what KIND or pornography it was. In pornographic movies, they have a 'scene', like beach scene, or office, or motel, or plumber/pool cleaner (builder?) plus client, etc. You get the drift. But can you imagine what this one was? L tried to get me to guess, saying I'd "been there" recently. WTF? I had no clue! Apparently it was a gynocologist/patient scenario!!! Can you believe it? Wouldn't that put you OFF? I can understand if it was woman in stirrups on the bed with the gyno, the gyno nips out and the partner walks in to take over certain business, but with the gyno!!??! He said he had to fast forward that one (and if you can imagine pornography in fast forward, that must be quite funny).
But then the rest of them (he claimed) were "doctors and nurses" scenarios. Almost as bad! You don't want to think that your health professionals are getting up to that kind of thing. Even if it is "fantasy" and even if they really do (it must happen...), well afterwards when you're having to listen to their advice as professionals, it must be a bit off-putting! I wonder if the nurses acutally know what is on the DVD... and I wonder who supplied it?!?! Surely not my gyno; he's as camp as a row of tents (thank goodness!).
Yes, a DVD and apparently magazines are provided. (But would you want to touch them? I remember moving into a flat once and finding left over magazines from the rooms previous inhabitant... and the pages were STUCK together. Eww.) I asked the nurse what the DVD was (naievely thinking it was instructions on how to get it into the jar or something!) and she said she didn't know, didn't want to know, and that I should ask Mike when we got home. Ha ha.
So, naturally, I did ask! And would you believe it was pornography. OK, I'd figured it out by then. But the funniest part is what KIND or pornography it was. In pornographic movies, they have a 'scene', like beach scene, or office, or motel, or plumber/pool cleaner (builder?) plus client, etc. You get the drift. But can you imagine what this one was? L tried to get me to guess, saying I'd "been there" recently. WTF? I had no clue! Apparently it was a gynocologist/patient scenario!!! Can you believe it? Wouldn't that put you OFF? I can understand if it was woman in stirrups on the bed with the gyno, the gyno nips out and the partner walks in to take over certain business, but with the gyno!!??! He said he had to fast forward that one (and if you can imagine pornography in fast forward, that must be quite funny).
But then the rest of them (he claimed) were "doctors and nurses" scenarios. Almost as bad! You don't want to think that your health professionals are getting up to that kind of thing. Even if it is "fantasy" and even if they really do (it must happen...), well afterwards when you're having to listen to their advice as professionals, it must be a bit off-putting! I wonder if the nurses acutally know what is on the DVD... and I wonder who supplied it?!?! Surely not my gyno; he's as camp as a row of tents (thank goodness!).
Wednesday 18th - Soccer Mom
C calls me "Soccer Mom" because of the 11 eggs. We also discussed the prospect of a cricket team, with L being the 12th man. Lou says she'll help train them! And when I told Dad how many there were, he said "one more than expected", and I said to him, "you know what THAT feels like". All will be revealed tomorrow when we ring to find out how the fertilisation went. Some might not take. I wonder if they're likely to be the same sex as it was one "go" and I understand that temperature and other conditions can affect the sex of the embryo. I guess we will find out in due course.
Wednesday 18th - Insomniac
Wow, I actually can't get to sleep. This is the fist time this has properly happened since this whole caper started. It's possible the anaesthetics have finally worn off and my brain has whirred into normal action again. Or, more likely, I'm genuinely unfathomably unbelievably excited about the prospect of embryos waiting for us. I didn't think I'd feel too over-excited about the mere procedure, but it's definitely a step forwards (one small step; one giant leap) in many aspects.
Tuesday, March 17, 2009
Tuesday 17th - Backscratch
One thing I would say to anyone who is going to go through this: buy a back scratcher. Mine has been invaluable for scratching parts of my body that I can usually reach but can't due to limited mobility. And it was great in hospital when I was coming out of the anaesthetic because I'd get itchy on my legs etc which at the time I couldn't reach.
Or if you know someone who is going to have this done, buy them one as a get-well gift. It's been GREAT. Also useful for poking things like the cat.
Or if you know someone who is going to have this done, buy them one as a get-well gift. It's been GREAT. Also useful for poking things like the cat.
Tuesday 17th - Heavy breast
As for the breast, it looks OK but feels 'heavy' when compared to the other one. I got L to help me decide if the left was definitely heavier than the right. He was very happy to oblige.
I can't see any 'waterbed' effect that Patsy told us to look out for (fluid moving under the skin like water in the bladder of the waterbed), nor is there any excess swelling which Hildegard said to look out for.
I haven't seen anyone since to operation to take a look at the breast or the area yet. I guess that will come in time. They did say to ring or contact them if I had ANY questions or concerns. At the moment I don't.
I didn't wear a bra today because it digs in a bit at the left side under the arm. Bigger red marks than usual. When I do wear one, I have to get L to undo it for me. Again, he is happy to oblige, and to practice his expert-one-handed-bra-removal technique. He's very good at it.
I can't see any 'waterbed' effect that Patsy told us to look out for (fluid moving under the skin like water in the bladder of the waterbed), nor is there any excess swelling which Hildegard said to look out for.
I haven't seen anyone since to operation to take a look at the breast or the area yet. I guess that will come in time. They did say to ring or contact them if I had ANY questions or concerns. At the moment I don't.
I didn't wear a bra today because it digs in a bit at the left side under the arm. Bigger red marks than usual. When I do wear one, I have to get L to undo it for me. Again, he is happy to oblige, and to practice his expert-one-handed-bra-removal technique. He's very good at it.
Tuesday 17th - Cluck cluck!
I'm looking forward to tomorrow being over with. I've had enough GA's for now. I hope it's not too sore afterwards. After having laser surgery for CINII in 2003, I reckon it won't be so bad... Here's hoping!
I've decided to make all the eggs into embryos. There is a much higher chance of getting babies from embryos than there is from eggs only. Eggs only is about 2 - 3% per egg, whereas embryos are 30 - 40% per embryo. If we have 10 embryos, and say 2 don't survive freezing, and 2 don't survive defrosting, then that leaves us with 6 embryos. If there's a 33% chance per embryo, then statistically that's 2 children. Hopefully the statistics might work in our favour, seeing as there doesn't seem to be any issue with the fertility side of things at the moment. You never know though.
L is being a super-awesome-great guy and letting us change the wording on the consent form so that instead of the embryos being discarded if we break up (unlikely) or if he dies (also unlikely so soon!), then they will pass into my 'possession'. We haven't fully investigated donation yet (to a couple or to research), but will look into it later on if there are any 'spares'. Don't worry, I'm not going to implant 8 unused embryos at once! Goodness knows how that woman ended up with 8 in the first place. My doc has controlled my limit to 10. Any more than that and I could get really sick, which is the last thing we want before chemo.
I've decided to make all the eggs into embryos. There is a much higher chance of getting babies from embryos than there is from eggs only. Eggs only is about 2 - 3% per egg, whereas embryos are 30 - 40% per embryo. If we have 10 embryos, and say 2 don't survive freezing, and 2 don't survive defrosting, then that leaves us with 6 embryos. If there's a 33% chance per embryo, then statistically that's 2 children. Hopefully the statistics might work in our favour, seeing as there doesn't seem to be any issue with the fertility side of things at the moment. You never know though.
L is being a super-awesome-great guy and letting us change the wording on the consent form so that instead of the embryos being discarded if we break up (unlikely) or if he dies (also unlikely so soon!), then they will pass into my 'possession'. We haven't fully investigated donation yet (to a couple or to research), but will look into it later on if there are any 'spares'. Don't worry, I'm not going to implant 8 unused embryos at once! Goodness knows how that woman ended up with 8 in the first place. My doc has controlled my limit to 10. Any more than that and I could get really sick, which is the last thing we want before chemo.
Monday, March 16, 2009
Monday 16th - All go
Saw Dr Yazdani this morning. Things are all go for the EPU on Wedensday 18th. I'm glad, because I'm getting sore. I've now got 4 big follicles on one ovary and 6 big ones on the other (can't remember which is which, 4R and 6L I think). It's all looking hunky dory so I'm booked in for surgery at 8.30am on Wednesday 18th March. L will have to come with me to do his business too!
We've got forms to sign etc, which is good. I spoke to Dr Yazdani about lawyers etc, if we need them, but he said don't worry it's all on the consent form (which it is), and if we want to make any changes to the standard consent, then we just write it in by hand and sign the form. Probably a good idea to initial the handwritten stuff too. It's a bit like having a joint bank account.
Dr Yazdani is still advocating the freezing of embryos rather than eggs, as there is a much much higher chance of getting a baby from a frozen embryo than from a frozen egg. I asked about half/half and they still think that with 10 potential eggs, it's still better to make them all into embryos. L and I will have to make that decision tonight and sign the forms ASAP. Lots of things to think about, but then again, fairly straightforward. I've been asked if I am going to 'put all my eggs in one basket' and I think I will.
I'm not particularly looking forward to another general anaesthetic, but once this is over with, I hope that's all for a while. I had another discussion with the QFG nurse about the fees, and she showed me yet another fees list, which seemed to be the updated one of the one I'd received in mid Feb when we first went to Eve Health. It now said $800 and something for the Day Theatre fee. I asked her to double check and she did, thankfully, it is $500 flat rate as I'd been told on the phone. She also suggested that I tell the anaesthetist my situation myself, when s/he comes in for the pre-surgery chat. Then they might lower their fees if we're lucky too. She asked what kind of fertilisation it would be (needle assisted or not) and I said I didn't know. I guess not needle assisted as, as far as we know, there isn't any problem with the little swimmers.
I didn't have to have another blood test today, so that was good. Apparently my hormone levels are nice and low, so that means the Femara (hormone suppressant) is working well. I now have to stop femara, synarel and puregon (FSH) immediately (my last dose of each was this morning), and then I have to do another injection of something else this evening at 8.30pm on the dot. That one is very strict because it is related to the time of my surgery. It takes 36 hours to activate, and then I'll be all ready for the EPU.
My arm is getting better too. I did more exercises yesterday and also today while waiting on the bed for my scan. I've definitely got more movement, which is great. The pain seems to be subsiding a bit as well. For the last few days it felt like my tee shirt was lined with gorse, but that's getting less so. Definitely still stiff. I find that when I do the stretches, at first it's a little bit uncomfortable to hold the stretch, but within a couple of seconds I can't feel any pain at all, it feels normal. I'm still paranoid about getting lymphoedema.
We've got forms to sign etc, which is good. I spoke to Dr Yazdani about lawyers etc, if we need them, but he said don't worry it's all on the consent form (which it is), and if we want to make any changes to the standard consent, then we just write it in by hand and sign the form. Probably a good idea to initial the handwritten stuff too. It's a bit like having a joint bank account.
Dr Yazdani is still advocating the freezing of embryos rather than eggs, as there is a much much higher chance of getting a baby from a frozen embryo than from a frozen egg. I asked about half/half and they still think that with 10 potential eggs, it's still better to make them all into embryos. L and I will have to make that decision tonight and sign the forms ASAP. Lots of things to think about, but then again, fairly straightforward. I've been asked if I am going to 'put all my eggs in one basket' and I think I will.
I'm not particularly looking forward to another general anaesthetic, but once this is over with, I hope that's all for a while. I had another discussion with the QFG nurse about the fees, and she showed me yet another fees list, which seemed to be the updated one of the one I'd received in mid Feb when we first went to Eve Health. It now said $800 and something for the Day Theatre fee. I asked her to double check and she did, thankfully, it is $500 flat rate as I'd been told on the phone. She also suggested that I tell the anaesthetist my situation myself, when s/he comes in for the pre-surgery chat. Then they might lower their fees if we're lucky too. She asked what kind of fertilisation it would be (needle assisted or not) and I said I didn't know. I guess not needle assisted as, as far as we know, there isn't any problem with the little swimmers.
I didn't have to have another blood test today, so that was good. Apparently my hormone levels are nice and low, so that means the Femara (hormone suppressant) is working well. I now have to stop femara, synarel and puregon (FSH) immediately (my last dose of each was this morning), and then I have to do another injection of something else this evening at 8.30pm on the dot. That one is very strict because it is related to the time of my surgery. It takes 36 hours to activate, and then I'll be all ready for the EPU.
My arm is getting better too. I did more exercises yesterday and also today while waiting on the bed for my scan. I've definitely got more movement, which is great. The pain seems to be subsiding a bit as well. For the last few days it felt like my tee shirt was lined with gorse, but that's getting less so. Definitely still stiff. I find that when I do the stretches, at first it's a little bit uncomfortable to hold the stretch, but within a couple of seconds I can't feel any pain at all, it feels normal. I'm still paranoid about getting lymphoedema.
Saturday, March 14, 2009
Saturday 14th - Tender
Getting more and more tender in my ovaries and surrounding area. Like before I get my period. Not particularly pleasant, unfortunately. No massive swelling as yet or my stomach distended or anything like that. I have lost about 2 kg since the beginning of all of this (if the scales are right!), so maybe I'm not noticing any particular water-retention or swelling.
My trousers all seem to fit for the time being anyways. Here's hoping they stay that way, although the amount of chocolate I have comsumed in the past few days may tell a different tale. Interestingly, I haven't been getting headaches/migraines from the chocolate. D suggested it was because Whittaker's chocolate is far superior to any other kind, which is true. I guess it will only be a few more days of discomfort and then I'll have the EPU (egg pick up) on Tuesday or Wednesday next week. Looking forward to getting that over and done with.
My trousers all seem to fit for the time being anyways. Here's hoping they stay that way, although the amount of chocolate I have comsumed in the past few days may tell a different tale. Interestingly, I haven't been getting headaches/migraines from the chocolate. D suggested it was because Whittaker's chocolate is far superior to any other kind, which is true. I guess it will only be a few more days of discomfort and then I'll have the EPU (egg pick up) on Tuesday or Wednesday next week. Looking forward to getting that over and done with.
Saturday 14th - Picture: Breast scar
You can see that there is still some swelling to the side and where the main scar is across the top of my breast. You can also see the ANC scar just poking out from under my arm. Still some bruising just above the cut. You can't see it on this pic, but the lower part of my breast is still blue from the blue dye they put in a month ago. It'll come out eventually (and is the least of my worries).
Saturday 14th - Still sore
My jolly arm is still sore. It seems to be taking a long time to heal. Feels a bit like a deep graze now, on the back of the shoulder, close to my arm. Still sore underneath too. Feels tight but not as 'heavy' as before. I guess I'm getting more feeling back but unfortunately that feeling isn't exactly comfortable.
Saturday 14th - Picture: ANC scar
You can see the scar there from the ANC (axillary node clearance) and the red dot underneath was the hole for the drain. The more faded red dot underneath, not sure what that was, possibly from the first operation, something to do with the SNB (sentinel node biopsy). Small blacky/grey smudge towards my back is just some sticky residue from the tape. It's hard to scrub off and also I can't reach there very easily.
Friday, March 13, 2009
Friday 13th - Eggies
Saw Dr Yazdani this morning for a blood test and to check on my follicles. The blood test was so-so, the nurse took a while to get a vein up and then apparently the vein collapsed. Never had that happen before but apparently it's normal. I think my left arm is better for taking blood but can't use that one any more! I suspect the nurse was fairly new at it as well. She was nice though and let me sit down with my feet up and got me a glass of water.
She also confirmed that I was probably sick on Wednesday because of not drinking enough fluids and not eating enough protein. The protein I eat in the form of the occasional power-bar or something like that, but have also just found a coffee flavoured protein drink (like Zap) in the supermarket and that wasn't too bad.
Dr Yazdani did the scan, and ouch! It was rather tender up in there. It had been a little tiny bit sore-ish on the right side, like mini preiod pain, but when he used that scanner, I could definitely feel it and it wasn't pleasant. He said that was normal because my ovaries are bigger than normal thanks to all the follicles. The follicles are growing nicely. I've got 5 on one side and 6 on the other (on Wednesday I had 4 one one side and 5 on the other). He thinks that will be about 10 eggs, which is the right amount they want.
I picked up some more FSH, had to get yet another cool-container thing from them as I hadn't thought to bring one we already have. I hadn't been told specifically to bring it, but when I think about it now, of course I needed it to bring more of the FSH home. Funny that I couldn't plan for that, as I'm normally good at that kind of thing. Another example of brain still not functioning on all cylinders.
One intresting thing I talked about with the nurse was the legal side of the embryos. I asked what happens if one of us dies or if we split up and if Queensland Fertility Group (QFG) will help with the paperwork in preparing for that. She said that QFG doesn't help with the paperwork (not surprising but it was worth asking). If one of us dies, we have to have an affidavit saying the other person can use the embryos. And if we split up, we can't use the embryos at all. I asked about an affidavit for that (using them if we split up) and she said we'd have to talk to our lawyer about it. Very interesting. Unlikely that that will be the case, but still would be good to have all bases covered.
Next appointment is this coming Monday, when all will be revealed about the date for the EPU. More bloods then too, joy.
She also confirmed that I was probably sick on Wednesday because of not drinking enough fluids and not eating enough protein. The protein I eat in the form of the occasional power-bar or something like that, but have also just found a coffee flavoured protein drink (like Zap) in the supermarket and that wasn't too bad.
Dr Yazdani did the scan, and ouch! It was rather tender up in there. It had been a little tiny bit sore-ish on the right side, like mini preiod pain, but when he used that scanner, I could definitely feel it and it wasn't pleasant. He said that was normal because my ovaries are bigger than normal thanks to all the follicles. The follicles are growing nicely. I've got 5 on one side and 6 on the other (on Wednesday I had 4 one one side and 5 on the other). He thinks that will be about 10 eggs, which is the right amount they want.
I picked up some more FSH, had to get yet another cool-container thing from them as I hadn't thought to bring one we already have. I hadn't been told specifically to bring it, but when I think about it now, of course I needed it to bring more of the FSH home. Funny that I couldn't plan for that, as I'm normally good at that kind of thing. Another example of brain still not functioning on all cylinders.
One intresting thing I talked about with the nurse was the legal side of the embryos. I asked what happens if one of us dies or if we split up and if Queensland Fertility Group (QFG) will help with the paperwork in preparing for that. She said that QFG doesn't help with the paperwork (not surprising but it was worth asking). If one of us dies, we have to have an affidavit saying the other person can use the embryos. And if we split up, we can't use the embryos at all. I asked about an affidavit for that (using them if we split up) and she said we'd have to talk to our lawyer about it. Very interesting. Unlikely that that will be the case, but still would be good to have all bases covered.
Next appointment is this coming Monday, when all will be revealed about the date for the EPU. More bloods then too, joy.
Friday 13th - A month ago
Hard to believe that 28 days ago I was on my way to hospital for the first operation. In some ways, the time has gone by so fast. I didn't think I'd be back in for another op, in fact I don't think I had any proper concept of time except for a couple of weeks after the operation for recovery.
Got my letter from the oncology department yesterday with 2 pre-treatment appointments. One is on Monday 23rd March and the other on Thursday 2nd April. This is a bit of a bugger because I thought I'd have those 2 weeks (23 Mar - 3 Apr) 'free' to do some work or get stuck into something. Oh well! Will see how things pan out as it is.
Got my letter from the oncology department yesterday with 2 pre-treatment appointments. One is on Monday 23rd March and the other on Thursday 2nd April. This is a bit of a bugger because I thought I'd have those 2 weeks (23 Mar - 3 Apr) 'free' to do some work or get stuck into something. Oh well! Will see how things pan out as it is.
Friday 13th - Arm
My arm continues to be sore. Started doing more exercises last night, but it seems that the more exercises I do, the stiffer it feels! And I haven't been overdoing them. The discomfort is definitely now centralised to right under my arm pit and a little bit down the side/back of my body, close to there. Ouch. It still feels heavy, but not as heavy as before, and tight. Like a really badly pulled muscle, just in an odd spot, in my armpit. I find that I have a fairly good range of movement if I take it really really slowly. The hardest one is still the creeping my fingers up the wall. I know it will take time and I have to keep at it to get results.
Thursday, March 12, 2009
Thursday 12th - Getting there
Was very very tired this morning and slept through until 8.30am, which is a big sleep in for me. Did a few emaily type things and then arranged to meet Dad at Roma St station for a day out in Robina. That was really good, but despite sitting on the train for over an hour, then sitting in a cafe for a couple of hours, then sitting on a couch for another 20 minutes with a cup of tea, I still felt absolutely exhausted by the time we were on the train back home again. Brought a sickie bag (left over from the hospital) with me in case I felt nauseous again, but I didn't feel that way at all. I wonder if it was because perhaps I didn't drink as much yesterday, with it being a cooler day? I made sure I drank plenty today just in case that was the trigger.
D and T brought around a gorgeous meal of spaghetti bolognaise which D had prepared ahead of time at home. We'd provisionally planned to go out this evening but there was no way I could have handled a busy restaurant with the noise and the people. It was great to eat at home and not have to have prepared the meal. Dishes are minimal too, just the ones we used to eat off, yay. They left and took Dad with them before 9pm, so we have been relaxing on the couch and watched another episode of our favourite show. We love it.
Feeling good now but still tired. I'm finding it hard, generally, to think. Especially think and plan and have to make decisions about things. I hope that will get better in time. There is no way I could do maths at the moment or work anything out that involved more than one factor. The brain thinks it's too hard.
D and T brought around a gorgeous meal of spaghetti bolognaise which D had prepared ahead of time at home. We'd provisionally planned to go out this evening but there was no way I could have handled a busy restaurant with the noise and the people. It was great to eat at home and not have to have prepared the meal. Dishes are minimal too, just the ones we used to eat off, yay. They left and took Dad with them before 9pm, so we have been relaxing on the couch and watched another episode of our favourite show. We love it.
Feeling good now but still tired. I'm finding it hard, generally, to think. Especially think and plan and have to make decisions about things. I hope that will get better in time. There is no way I could do maths at the moment or work anything out that involved more than one factor. The brain thinks it's too hard.
Wednesday, March 11, 2009
Wedneday 11th - Not so good stuff
Felt a little bit queasy coming home from the hospital and didn't go for a drive with L and Dad because feeling a tiny bit off colour. Told Dr Yazdani later on that day how I hadn't been getting many side effects from the FSH etc and was feeling pretty good. He said, it is early days yet. I think I spoke too soon because that afternoon when we got home I started feeling a bit more queasy and had to lie down on the couch for about half an hour.
Then I started to feel really not good and threw up in the toilet at about 5pm. Chunky thick stuff that was hard to bring up. Still felt a bit off colour and had another, bigger, spew in the toilet again at about 6.20pm. We ordered pizza for tea and I managed to eat a few pieces of garlic pizza base and felt a bit ill throughout but kept it down and feel better now (9.40pm).
I had felt queasy before, just very quickly in passing and quite mild. Only once did I feel very ill but didn't throw up and recovered from it almost immediately. I really hope today's pattern doesn't last for the rest of the time on the FSH etc. That would not be pleasant at all.
Then I started to feel really not good and threw up in the toilet at about 5pm. Chunky thick stuff that was hard to bring up. Still felt a bit off colour and had another, bigger, spew in the toilet again at about 6.20pm. We ordered pizza for tea and I managed to eat a few pieces of garlic pizza base and felt a bit ill throughout but kept it down and feel better now (9.40pm).
I had felt queasy before, just very quickly in passing and quite mild. Only once did I feel very ill but didn't throw up and recovered from it almost immediately. I really hope today's pattern doesn't last for the rest of the time on the FSH etc. That would not be pleasant at all.
Wednesday 11th - Good stuff
Up to the hospital to see Dr Ben this morning at 8.40am. He told us the GREAT news that I don't need any more surgery. Uhamdel'allah. Very happy about that. We also talked a bit more about further treatment (chemo/radiation) and he answered our questions and told us some anecdotes. He's such a nice guy. Very personable and open but professional too.
After Ben, we saw Patsy, who touched base to make sure everything was ok. She's definitely the person in charge of a lot of things and she really makes you feel like she whips the others into shape but she's also on the side of the patient.
After Patsy, we saw Hildegard, who showed me some more exercises and further things to do with dates when I can start doing them. She was pleased with my progress so far.
Back home briefly. L and Dad went for a tiki-tour to drop some papers off to L's accountant and I made some phone calls. Firstly to QFG about the fees schedule they'd sent in a letter to me. It ended out that they'd sent the usual letter for public patients but they didn't know it was related to oncology. They said they'd sort it out. They said it was because I hadn't indicated 'oncology' on the pre-admission form. But from what I can remember, there wasn't a space to write that and as fas as I knew the nurse we'd spoken to at Eve Health a few weeks ago knew it was oncology related so I didn't think I had to raise it again. But all sorted (they said).
The second call was about a referral letter. Eve Health wanted a referral letter from my GP, even though earlier I'd told them that I'd been referred by the RBWH (but I wasn't sure who exactly because that day was such a whirlwind of interviews and events). I rang my GP's clinic to ask about a letter, but they said I would need a consult to get the letter. I thought, blow that I'm not spending $55 on a consult especially when my GP hasn't been involved at all except for the very first ultrasound scan and mammogram.
So I rang trusty Patsy and she put me right by telling me that the referral letter is in my notes and has been all along, signed by Professor Ung and dated 9th February. I told them that at the clinic later that day and gave them Patsy's number if they wanted to follow that up. So that was good. Especially knowing I had the support from Patsy and the RWBH team. Eve Health have been great as well, but I think perhaps because they are new they are still working their systems out that they haven't had an oncology patient through yet whose referral etc is a bit different to the usual patient.
We went for a celebratory lunch at Fundies in Paddington and then down to Eve Health in South Brisbane (near Southbank) for my check up and scan with Dr Yazdani. That all went well and I could see how my follicles have swelled in size thanks to the FSH. Got some more Puregon (FSH) and will see him again on Friday morning for bloods and another scan. I really like the way Dr Yasdani asks what medication I'm on. Rather than say, you're on xyz, aren't you, he gets me to say exactly what I take, how much, and when. Good concept checking questions! Home again after that to wait for the power to come back on.
After Ben, we saw Patsy, who touched base to make sure everything was ok. She's definitely the person in charge of a lot of things and she really makes you feel like she whips the others into shape but she's also on the side of the patient.
After Patsy, we saw Hildegard, who showed me some more exercises and further things to do with dates when I can start doing them. She was pleased with my progress so far.
Back home briefly. L and Dad went for a tiki-tour to drop some papers off to L's accountant and I made some phone calls. Firstly to QFG about the fees schedule they'd sent in a letter to me. It ended out that they'd sent the usual letter for public patients but they didn't know it was related to oncology. They said they'd sort it out. They said it was because I hadn't indicated 'oncology' on the pre-admission form. But from what I can remember, there wasn't a space to write that and as fas as I knew the nurse we'd spoken to at Eve Health a few weeks ago knew it was oncology related so I didn't think I had to raise it again. But all sorted (they said).
The second call was about a referral letter. Eve Health wanted a referral letter from my GP, even though earlier I'd told them that I'd been referred by the RBWH (but I wasn't sure who exactly because that day was such a whirlwind of interviews and events). I rang my GP's clinic to ask about a letter, but they said I would need a consult to get the letter. I thought, blow that I'm not spending $55 on a consult especially when my GP hasn't been involved at all except for the very first ultrasound scan and mammogram.
So I rang trusty Patsy and she put me right by telling me that the referral letter is in my notes and has been all along, signed by Professor Ung and dated 9th February. I told them that at the clinic later that day and gave them Patsy's number if they wanted to follow that up. So that was good. Especially knowing I had the support from Patsy and the RWBH team. Eve Health have been great as well, but I think perhaps because they are new they are still working their systems out that they haven't had an oncology patient through yet whose referral etc is a bit different to the usual patient.
We went for a celebratory lunch at Fundies in Paddington and then down to Eve Health in South Brisbane (near Southbank) for my check up and scan with Dr Yazdani. That all went well and I could see how my follicles have swelled in size thanks to the FSH. Got some more Puregon (FSH) and will see him again on Friday morning for bloods and another scan. I really like the way Dr Yasdani asks what medication I'm on. Rather than say, you're on xyz, aren't you, he gets me to say exactly what I take, how much, and when. Good concept checking questions! Home again after that to wait for the power to come back on.
Wednesday 11th - No More Surgery!
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY. NO MORE SURGERY. NO MORE SURGERY.
NO MORE SURGERY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Tuesday, March 10, 2009
Tuesday 10th - Quiet day
Was feeling a bit more tired today. Struggled to get out of bed this morning when my alarm went off for the synarel at 7.30am. L had made me a cup of tea even, which unfortunately went cold as I snoozed away. Might have had something to do with the fact that we were up a little bit late (11pm) because we couldn't resist and watched the first episode of OF series 4 last night. Dad had brought it over from NZ. Yippee!
Managed a gentle 20 minute pedal on the bike and even managed to hang some washing out (that was a feat indeed, slow and steady), and do some dishes. Met up with Dad and D at a nearby cinema but it took me longer than anticipated to get there, firstly because it took me longer to get ready, then the bus was late and then I had to walk (slowly) a fair distance. I'm trying to track if I feel queasy/tired after the injection and if so, then how many hours later.
The movie was good in that it was a nice sit-down for 2.5 hours, although towards the end my bladder was suffering a bit! Afterwards we ambled up to Paddington for a light lunch and then Dad came up to ours and D headed home to do some more work on his game project. Dad and I stopped in at Vinnie's (charity shop) on the way for a look at the old building as much as at the wares, and when we stepped out, who should be pulling up to give us a ride the rest of the way home but L. Talk about good timing. I was feeling better by this stage. Still a bit tired but good enough to maintain a conversation (I think). We skyped with step-mother when we got home and L went to the supermarket to buy groceries and then cooked us a delicious meal. Had a lovely quiet evening in and then dropped Dad off back at D's. Busy day tomorrow with appointments. I'd better go... OF calls!
Managed a gentle 20 minute pedal on the bike and even managed to hang some washing out (that was a feat indeed, slow and steady), and do some dishes. Met up with Dad and D at a nearby cinema but it took me longer than anticipated to get there, firstly because it took me longer to get ready, then the bus was late and then I had to walk (slowly) a fair distance. I'm trying to track if I feel queasy/tired after the injection and if so, then how many hours later.
The movie was good in that it was a nice sit-down for 2.5 hours, although towards the end my bladder was suffering a bit! Afterwards we ambled up to Paddington for a light lunch and then Dad came up to ours and D headed home to do some more work on his game project. Dad and I stopped in at Vinnie's (charity shop) on the way for a look at the old building as much as at the wares, and when we stepped out, who should be pulling up to give us a ride the rest of the way home but L. Talk about good timing. I was feeling better by this stage. Still a bit tired but good enough to maintain a conversation (I think). We skyped with step-mother when we got home and L went to the supermarket to buy groceries and then cooked us a delicious meal. Had a lovely quiet evening in and then dropped Dad off back at D's. Busy day tomorrow with appointments. I'd better go... OF calls!
Monday, March 9, 2009
Monday 9th - Long day, good day
Today was another good day, even though I was awake at 4.30am. Dad arrived at about 10.30am and we hung out for the day together, which was great. Both a bit on the tired side, Dad with a very early start from PN to Wellington and then the flight from there to Brisbane. I think I'm looking more well than he'd expected. But I am on the mend today for sure. Even my arm stretches are getting easier and easier. I can stretch my arm quite a long way upwards if I do it slowly, and it doesn't even hurt, it's just slow and steady. Hopefully the physio will be impressed. I'm still paranoid about getting lymphoedema.
Dad brought gifts of Whittakers Almond Gold (my favourite) and Outrageous Fortune Series 4. Wahooo! I'm half tempted to write to the producers of OF to tell them how their show has really helped us get through this. We've watched it on recovery days, when we're too tired to do anything else, and it's been a wonderful diversion away from what's happening in real life.
Almost 9pm now. We took takeaway Chinese food from Sing's to D's where we ate dinner together and dropped Dad off. Had a great conversation about D's gaming ideas and had a few ourselves about applications for his iPhone/iPod. Dad's been giving me a hard time (jokingly) because I told him not to bring his raincoat and it's rained almost all day today and is predicted to for the rest of the week. Whoops. It's even cooled off to mid 20s.
Dad brought gifts of Whittakers Almond Gold (my favourite) and Outrageous Fortune Series 4. Wahooo! I'm half tempted to write to the producers of OF to tell them how their show has really helped us get through this. We've watched it on recovery days, when we're too tired to do anything else, and it's been a wonderful diversion away from what's happening in real life.
Almost 9pm now. We took takeaway Chinese food from Sing's to D's where we ate dinner together and dropped Dad off. Had a great conversation about D's gaming ideas and had a few ourselves about applications for his iPhone/iPod. Dad's been giving me a hard time (jokingly) because I told him not to bring his raincoat and it's rained almost all day today and is predicted to for the rest of the week. Whoops. It's even cooled off to mid 20s.
Monday 9th - Bra
I put a bra on for the first time today since the surgery on the 27th. It was hard to put on because of the restricted movement I still have with the left arm. I did manage though and it feels weird. But good, I think. I chose an older one whose cups have kind of shrunk in the wash, seeing as my breasts are smaller due to the synarel. But the left beast was a challenge to get into the cup. I don't know if it's the surgery or the swelling of the fact that I haven't worn a bra in a long time but there seems to be more breast at the side, under my arm, than there used to be. Probably from the swelling too, but the breast definitely fits the cup. In fact, I'd be tempted to wear one of my bigger cup sized bras except that then the right side one would be loose.
The strap around the left shoulder feels restrictive, but that's probably because I haven't worn one in so long. Was pleased to note that all cutting holes (under the arm and on the breast) are covered by the bra. I do wear very plain comfortable supportive covering bras anyways, so that's good.
My left breast has always been a little bit bigger than my right one. It did seem to be even bigger than usual about 6 months ago, I do recall. I was trying on bras to wear with my dress to JR & SR's wedding and the bra fitter even commented. I dismissed it and told her that the left had always been a bit bigger. At the time I just thought I was putting on/losing weight or it was hormonal, but when I think about it now, it was possibly a little bit bigger than usual. Hard to know if that had anything to do with the cancer at all, or it's just stuck in my mind because bra-shopping can be such an ordeal!
The strap around the left shoulder feels restrictive, but that's probably because I haven't worn one in so long. Was pleased to note that all cutting holes (under the arm and on the breast) are covered by the bra. I do wear very plain comfortable supportive covering bras anyways, so that's good.
My left breast has always been a little bit bigger than my right one. It did seem to be even bigger than usual about 6 months ago, I do recall. I was trying on bras to wear with my dress to JR & SR's wedding and the bra fitter even commented. I dismissed it and told her that the left had always been a bit bigger. At the time I just thought I was putting on/losing weight or it was hormonal, but when I think about it now, it was possibly a little bit bigger than usual. Hard to know if that had anything to do with the cancer at all, or it's just stuck in my mind because bra-shopping can be such an ordeal!
Monday 9th - Beating Our Breasts
Mum and J lent me a book called 'Beating Our Breasts', which is about the breast cancer experiences of some well-known women in NZ. I read a couple of the stories and skimmed through the rest. Some of them were really good but others I couldn't relate much to. They were events which happened about 10 years ago or longer, and it seems like the technology has changed quite a bit (thankfully for me!), or perhaps the way it's treated in Australia is different. The women were also almost all over 50 when they were diagnosed and the fertility issue wasn't so important for them (none of them mentioned it). I'll go back to the book later when I have chemotherapy. It's great that it's there though, and that people can be open about sharing their experiences. One thing it does highlight is that everyone's experiences are different.
Monday 9th - Early Morning
Had a headache last night and felt tired so went to bed at about 9.30pm, but then lay awake for a long time unable to sleep. Wasn't particularly worried about anything, just was awake for a while. It was pretty hot though. Before settling in to sleep I read my book for a bit and was running my fingers through my hair and it seemed that more hair than usual came out as I combed it with my fingers. Not a significant amount but enough to be noticeable. Haven't noticed any more than usual coming out in the shower. Not sure why this is, maybe it's just normal for me but I'm sensitive to it at the moment.
Am up now at 4.30am, unable to get back to sleep. The possums are having a field day on the roof, but that's not too bad.
Was able to sleep with my arm by my side and no pillow to rest it on when on my back. I am getting sick of sleeping on my back! So I managed a bit lying on my right side too, with my left arm half hugging a pillow, half lying on it. That was ok too.
L noticed yesterday that when relaxed and standing that I hold my left arm with the palm facing backwards, not facing my body as usual. I hadn't noticed this at all. Perhaps it's because with the palm facing backwards I can feel more of my inner arm touching the side of my body and it feels more normal. I'm pretty certain that I can feel more now under my arm and surrounding that area than I could before. Still can't lift my arm up to shave under it though, and I would very much like to. That's a motivation to to the exercises to get my mobility back as anything is!
Am up now at 4.30am, unable to get back to sleep. The possums are having a field day on the roof, but that's not too bad.
Was able to sleep with my arm by my side and no pillow to rest it on when on my back. I am getting sick of sleeping on my back! So I managed a bit lying on my right side too, with my left arm half hugging a pillow, half lying on it. That was ok too.
L noticed yesterday that when relaxed and standing that I hold my left arm with the palm facing backwards, not facing my body as usual. I hadn't noticed this at all. Perhaps it's because with the palm facing backwards I can feel more of my inner arm touching the side of my body and it feels more normal. I'm pretty certain that I can feel more now under my arm and surrounding that area than I could before. Still can't lift my arm up to shave under it though, and I would very much like to. That's a motivation to to the exercises to get my mobility back as anything is!
Sunday, March 8, 2009
Sunday 8th - Mixed
Got up at about 7.30am in order to take the Synarel and later took the injection and even later the tablet (forgot about that one). Felt fairly energetic so I put on a load of washing and then did a gentle 20 minute ride of the exercise bike. I did some reading for my course and Mike played his game for about 3 hours... we found some headphones which had a long enough extension to plug into the TV and reach the couch, which was fantastic. No more noise from the game.
We did a bit of housework, with L doing the majority of it, but the chemical chlorine smell from the new bathroom cleaner drove me outside as it was giving me a headache. I often get headaches from smells like that, but I think I might be a bit more sensitive to it this time because of the drugs/hormones/generally being a bit run down. While sitting outside I felt a bit light headed and then my body felt like it was sinking/melting into the chair - I could hardly move. I just closed my eyes and felt my head loll back. I could hardly hold onto the glass of water L'd brought me.
He lit some incense inside to help get rid of the toxic smell and I moved inside onto the couch to do some more reading. When that got too much, I lay down for a snooze on the couch. I have a vague recollection of being woken up by being asked if I was sleeping and after that I dozed for a bit. I must have slpet/dozed for about 2 - 3 hours, woke up thirsty, and then made the effort to get up and we went for a 15 minute stroll just before dark. Still got the headache from the cleaner and feel nauseous when I go into the bathroom. The door is kept closed to try to keep the smell out from the rest of the flat.
I've definitely had more headaches lately, since starting on the injections. Still feeling very tired, despite the nap and the walk. Have been doing my exercises but these are hard today too. I can feel more sensation in my arm, but unfortunately the sensation is often related to discomfort or even pain!
We did a bit of housework, with L doing the majority of it, but the chemical chlorine smell from the new bathroom cleaner drove me outside as it was giving me a headache. I often get headaches from smells like that, but I think I might be a bit more sensitive to it this time because of the drugs/hormones/generally being a bit run down. While sitting outside I felt a bit light headed and then my body felt like it was sinking/melting into the chair - I could hardly move. I just closed my eyes and felt my head loll back. I could hardly hold onto the glass of water L'd brought me.
He lit some incense inside to help get rid of the toxic smell and I moved inside onto the couch to do some more reading. When that got too much, I lay down for a snooze on the couch. I have a vague recollection of being woken up by being asked if I was sleeping and after that I dozed for a bit. I must have slpet/dozed for about 2 - 3 hours, woke up thirsty, and then made the effort to get up and we went for a 15 minute stroll just before dark. Still got the headache from the cleaner and feel nauseous when I go into the bathroom. The door is kept closed to try to keep the smell out from the rest of the flat.
I've definitely had more headaches lately, since starting on the injections. Still feeling very tired, despite the nap and the walk. Have been doing my exercises but these are hard today too. I can feel more sensation in my arm, but unfortunately the sensation is often related to discomfort or even pain!
Saturday, March 7, 2009
Saturday 7th - Better and better
Definitely feeling more human today. We both slept in until well after 7am, then I got up to have my synarel and do my hormone shots. Felt a bit queasy afterwards and fell back asleep on the couch for what must have been a good hour. L went to the shops to get dishwashing liquid. I didn't even know that we were out/running low, which shows you how much I've done the dishes lately (zilch). He even bought two bottles AND the right brand of washing powder. What a star. He's also been washing AND drying/putting away dishes in one lot. I'm very happy with him for that.
I cooked up eggs florentine for a big late breakfast and then sat on the couch and continued with my book. We had a bit of a tiff when he wanted to play his game (apparently it's getting better now, the game that is), and I wanted some peace and quiet. He tried to set up headphones but with no luck. I retreated to the bedroom because I can't stand the noise of it.
I wasn't happy about that. The living room was so peaceful and the fan was on perfectly and the cushions and the couch supported my back and my arm just right. It was airy and breezy and lovely. Even when Mum was visiting, the noise of the game drove her to the study where she sat and read her book, cramped in with the clothes hanger, desk, boxes and suitcase. The game is just so dominating - even when you turn it down low all you hear is guns shooting and people making unpleasant dying-in-pain noises.
However, not so many minutes later, he came back into the bedroom and said he'd stop playing his game so I could sit in the living room. That was nice. It was so nice not to have the TV on either.
L soon got bored with no TV and no game so he ran a couple of errands, including going to Bunnings for a nail gun and a shovel. While he was gone I swept up all the leaves on the brick patio (which was a big job because there were a lot of leaves, but I figured the sweeping was a good gentle stretch for my arm), and when he came back he shovelled all the leaves into the big wheelie bin. The yard looks so much nicer now, and Suki is back to lounging on the bricks like she owns the place.
L later went out again to play some golf with M and I tidied the study, throwing away a lot of unnecessary papers. That was great. Had two lovely phone calls while L was out both times. The first was from a family friend of L's parents. I first met her at the wedding we went to in NZ late last year. She was the mother of the groom and she went through this in her 30s, 30 years ago. It was really nice to talk to her and hear that there is the 'other side' of this. I wasn't sure how much we could share, with different treatments available now, but no doubt the anxiety and the worries and the fears are the same.
The second was from L's Uncle C, who lives in Canberra/Blue Mountains. I've never met him, but he rang to make contact and wish me well and invited us to visit them when we would like to. He asked if there was anything he could do to help and offered us their assistance too, which was lovely. I told him how great the medical staff had been and how fortunate we are to be in Australia under medicare. We're definitely looking forward to visiting C and his partner when we have the opportunity! And thinking of visits, L's mum confimed that she and his dad will be visiting us at the beginning of June, which will be lovely too. Lots of really great things to look forward to.
I've been thinking more and more about chemotherapy and hair loss. The 'World's Greatest Shave' is coming up soon and people are being sponsored to cut/shave/colour their hair to fundraise for leukemia. In some ways it will be good because I won't be the only badly about (although if I do lose my hair it will probably be an a couple of months, not when the 'shave' event is on). I wonder if the drugs they will give me will indeed cause hair loss and if so, how much? Will my eyebrows go? What about my eyelashes? I guess these will all be answered in time. I've been advised to cut my hair short if it is going to fall out, because apparently it's a lot less stressful losing short hair than losing big clumps of long hair. I don't know how I am going to cope with the hair loss side of things. I had short hair once, but I didn't like it because my ears got cold at night. I suppose that's not so much of an issue in this climate!
Generally though, today was good. I'm not so tired and not so sore, although I am still sore. The numbness is very odd. Where I do have sensation, it kind of feels like a cross between sunburn and when you hit your funny-bone or sometimes like when you get pins and needles plus like pulled muscle where it's healing up. I can sometimes feel the air, it feels like a trickle of water or like the cat's tail has brushed against me. And it still feels heavy under my arm and as if I am carrying a squashy balloon under there - I can't quite feel the skin touching itself. I've been patting and stroking my numb bits though, to teach the brain and the nerves to make contact there. And I've been doing my exercises. The hardest ones are when I have to creep my fingers up the wall. Here's hoping tomorrow is a good day too. The good days are getting more frequent.
I cooked up eggs florentine for a big late breakfast and then sat on the couch and continued with my book. We had a bit of a tiff when he wanted to play his game (apparently it's getting better now, the game that is), and I wanted some peace and quiet. He tried to set up headphones but with no luck. I retreated to the bedroom because I can't stand the noise of it.
I wasn't happy about that. The living room was so peaceful and the fan was on perfectly and the cushions and the couch supported my back and my arm just right. It was airy and breezy and lovely. Even when Mum was visiting, the noise of the game drove her to the study where she sat and read her book, cramped in with the clothes hanger, desk, boxes and suitcase. The game is just so dominating - even when you turn it down low all you hear is guns shooting and people making unpleasant dying-in-pain noises.
However, not so many minutes later, he came back into the bedroom and said he'd stop playing his game so I could sit in the living room. That was nice. It was so nice not to have the TV on either.
L soon got bored with no TV and no game so he ran a couple of errands, including going to Bunnings for a nail gun and a shovel. While he was gone I swept up all the leaves on the brick patio (which was a big job because there were a lot of leaves, but I figured the sweeping was a good gentle stretch for my arm), and when he came back he shovelled all the leaves into the big wheelie bin. The yard looks so much nicer now, and Suki is back to lounging on the bricks like she owns the place.
L later went out again to play some golf with M and I tidied the study, throwing away a lot of unnecessary papers. That was great. Had two lovely phone calls while L was out both times. The first was from a family friend of L's parents. I first met her at the wedding we went to in NZ late last year. She was the mother of the groom and she went through this in her 30s, 30 years ago. It was really nice to talk to her and hear that there is the 'other side' of this. I wasn't sure how much we could share, with different treatments available now, but no doubt the anxiety and the worries and the fears are the same.
The second was from L's Uncle C, who lives in Canberra/Blue Mountains. I've never met him, but he rang to make contact and wish me well and invited us to visit them when we would like to. He asked if there was anything he could do to help and offered us their assistance too, which was lovely. I told him how great the medical staff had been and how fortunate we are to be in Australia under medicare. We're definitely looking forward to visiting C and his partner when we have the opportunity! And thinking of visits, L's mum confimed that she and his dad will be visiting us at the beginning of June, which will be lovely too. Lots of really great things to look forward to.
I've been thinking more and more about chemotherapy and hair loss. The 'World's Greatest Shave' is coming up soon and people are being sponsored to cut/shave/colour their hair to fundraise for leukemia. In some ways it will be good because I won't be the only badly about (although if I do lose my hair it will probably be an a couple of months, not when the 'shave' event is on). I wonder if the drugs they will give me will indeed cause hair loss and if so, how much? Will my eyebrows go? What about my eyelashes? I guess these will all be answered in time. I've been advised to cut my hair short if it is going to fall out, because apparently it's a lot less stressful losing short hair than losing big clumps of long hair. I don't know how I am going to cope with the hair loss side of things. I had short hair once, but I didn't like it because my ears got cold at night. I suppose that's not so much of an issue in this climate!
Generally though, today was good. I'm not so tired and not so sore, although I am still sore. The numbness is very odd. Where I do have sensation, it kind of feels like a cross between sunburn and when you hit your funny-bone or sometimes like when you get pins and needles plus like pulled muscle where it's healing up. I can sometimes feel the air, it feels like a trickle of water or like the cat's tail has brushed against me. And it still feels heavy under my arm and as if I am carrying a squashy balloon under there - I can't quite feel the skin touching itself. I've been patting and stroking my numb bits though, to teach the brain and the nerves to make contact there. And I've been doing my exercises. The hardest ones are when I have to creep my fingers up the wall. Here's hoping tomorrow is a good day too. The good days are getting more frequent.
Friday, March 6, 2009
Friday 6th - A good day on the whole
I actually feel somewhat normal right now. The morning didn't start so great, as I had a headache lingering from the night before. Not a big painful headache, but a slow fuzzy headache. I felt like I was swimming in it much of the day.
Took my second hormone injection and remembered to take the tablet at the same time. L went into the city to work on his course and then I went in after he'd come home to meet up with LL for lunch. L and I had a few 'words' on the phone when I was on the bus. He was stressed about his course and taking out his frustration on me, and I was feeling like rubbish anyways, so it wasn't a great combination. But we patched it up via text when we'd both calmed down a bit.
Was still feeling light headed and fuzzy headed by the time I got to Langports to meet LL. I couldn't really keep up with any conversations happening. It was like I was a child listening to adults talking - I could make out the words but I couldn't understand the meanings. It was lovely to see familiar faces though.
C joined LL and I for lunch, which was nice too. It worked out really well because I don't think I would have been a very good conversation partner on my own. I was very content to let the two of them do most of the talking and interject from time to time. Again, not sure if my interjections were coherent or related to the topic but the company was great and it was good to get out and about, even though at first it was hard.
Came home for the afternoon and pottered about. Had a little rest on the couch. Chatted to Mum on skype and Dad on google chat. Made a light dinner for L and I, then had a go at making a cheesecake from a packet. Improvisations like a lot of lemon juice helped. No dishes as yet because we've run out of dishwashing liquid!
Still got some pain in the arm and the strange sensation of no feeling combined with patches of super-sensitivity around my upper arm. Often I get tingles in my elbow or the feeling in my upper arm which is like a spider on it or a hair stuck to it (you know that tickly feeling). Also get some shooting pains in my chest, behind the breast, and some sharp pains in the back of my arm. But none lasts for a particularly long time or are so painful that I think something is really wrong. My fingers got a little bit swollen on my left hand, but that happens when I'm dehydrated, so I think it was normal.
I've been doing my exercises often. The hardest one is the crawling the fingers up the wall to try to put my hand above my head. It was hilarious when the physio was showing me the exercises and how much movement I can expect. She had her arm straight out in front of her and raised it at about a 90 - 130 degree angle to show me how much movement I should have. She's German... I didn't say a word.
Took my second hormone injection and remembered to take the tablet at the same time. L went into the city to work on his course and then I went in after he'd come home to meet up with LL for lunch. L and I had a few 'words' on the phone when I was on the bus. He was stressed about his course and taking out his frustration on me, and I was feeling like rubbish anyways, so it wasn't a great combination. But we patched it up via text when we'd both calmed down a bit.
Was still feeling light headed and fuzzy headed by the time I got to Langports to meet LL. I couldn't really keep up with any conversations happening. It was like I was a child listening to adults talking - I could make out the words but I couldn't understand the meanings. It was lovely to see familiar faces though.
C joined LL and I for lunch, which was nice too. It worked out really well because I don't think I would have been a very good conversation partner on my own. I was very content to let the two of them do most of the talking and interject from time to time. Again, not sure if my interjections were coherent or related to the topic but the company was great and it was good to get out and about, even though at first it was hard.
Came home for the afternoon and pottered about. Had a little rest on the couch. Chatted to Mum on skype and Dad on google chat. Made a light dinner for L and I, then had a go at making a cheesecake from a packet. Improvisations like a lot of lemon juice helped. No dishes as yet because we've run out of dishwashing liquid!
Still got some pain in the arm and the strange sensation of no feeling combined with patches of super-sensitivity around my upper arm. Often I get tingles in my elbow or the feeling in my upper arm which is like a spider on it or a hair stuck to it (you know that tickly feeling). Also get some shooting pains in my chest, behind the breast, and some sharp pains in the back of my arm. But none lasts for a particularly long time or are so painful that I think something is really wrong. My fingers got a little bit swollen on my left hand, but that happens when I'm dehydrated, so I think it was normal.
I've been doing my exercises often. The hardest one is the crawling the fingers up the wall to try to put my hand above my head. It was hilarious when the physio was showing me the exercises and how much movement I can expect. She had her arm straight out in front of her and raised it at about a 90 - 130 degree angle to show me how much movement I should have. She's German... I didn't say a word.
Thursday, March 5, 2009
Thursday 5th - Tired again
Didn't sleep so well last night, so was very tired this morning and today. I wasn't lying awake worrying about things or anything like that, I was just lying awake. My arm was pretty sore, under the arm. It feels like someone's sewn a lead balloon to the underside of my arm and it pulls a bit and still feels very strange with the numbness.
Have been doing the exercises the physio set me but perhaps I overdid it yesterday as it's been a bit more sore today. Have been doing the stretches again but I don't seem to have the same amount of mobility I had yesterday. Mum says not to worry though and I'm not in any danger of seizing up.
Did my first self-injection today of the F.S.H. We first watched the info-DVD, which was great but we were a bit worried because we didn't have any antiseptic wipes to prepare the skin with. I used antibacterial hand stuff - seemed to be the same thing. L's gone to the shop now to pick up some wipes.
It wasn't so bad, and the instructions on the DVD were really helpful and clear. Didn't even hurt as much as the anit-clotting injections they gave me at the hospital. I think it helps to have a little bit extra fat on the stomach...! I forgot to take my tablet at the time but remembered later on this afternoon.
My head has been feeling a bit foggy, but no doubt that it still because of the anaesthetic. Have a bit of a headache too, but that's normal! L has started calling me Miss Bossy because he needs some reminders about doing things. Well, he did say that he'd hang the washing out this morning but then played his game all afternoon and didn't hang it out until I asked if he'd remembered...
I am getting sick of heading chck-chck bang bang bang from the game. Lay on the bed this afternoon for a sleep (I was kind enough to let him have the couch...) but then that's all I could hear: boom boom boom, bang bang bang. He didn't hear me when I called out to please turn the volume down... I did manage to get about 1 hour's sleep though, which was very much needed.
C came around at about 11am and brought us lunch. She even made our plates up and we had a delicious healthy cold meal and a good conversation. Possibly a slightly one-sided conversation because I was feeling pretty knackered, but it was great to see her. She even helped L with the dishes before lunch and washed up after lunch. What an angel.
This evening, I've booked L and I in for a facial and a massage at the health and beauty place up the road. It's the same place where I had a facial last week, which was divine. I almost booked Mike in for a facial too, seeing as they are so nice, but I thought a massage would be good. So, we're going together for a half hour facial for me and a half hour massage for him at 6pm. Yay. That's my treat for L to say thank you. See, I'm not such a grumpy so-and-so after all.
Better have a shower and think about getting dressed. I've been wearing my gorgeous new sleep top which EB sent me from Brown Thomas in Dublin. Awww! Thanks EB! It is super-comfortable and just perfect. I was even thinking about wearing it up to the health and beauty place. I don't know if it's the hormones or the heat because I haven't been wearing deodorant, but I feel like I'm a bit more whiffy than usual. Probably it's because I usually sleep and wear the same thing for one day and one night. And I've also got my beautiful facial oil from The Body Shop thanks to G in London (not available in Australia). It's going to help heal up my scars nicely, when the steri-strips eventually fall off. I've noticed that my skin is a lot dryer than it usually is - no doubt because of the hormones too.
Have been doing the exercises the physio set me but perhaps I overdid it yesterday as it's been a bit more sore today. Have been doing the stretches again but I don't seem to have the same amount of mobility I had yesterday. Mum says not to worry though and I'm not in any danger of seizing up.
Did my first self-injection today of the F.S.H. We first watched the info-DVD, which was great but we were a bit worried because we didn't have any antiseptic wipes to prepare the skin with. I used antibacterial hand stuff - seemed to be the same thing. L's gone to the shop now to pick up some wipes.
It wasn't so bad, and the instructions on the DVD were really helpful and clear. Didn't even hurt as much as the anit-clotting injections they gave me at the hospital. I think it helps to have a little bit extra fat on the stomach...! I forgot to take my tablet at the time but remembered later on this afternoon.
My head has been feeling a bit foggy, but no doubt that it still because of the anaesthetic. Have a bit of a headache too, but that's normal! L has started calling me Miss Bossy because he needs some reminders about doing things. Well, he did say that he'd hang the washing out this morning but then played his game all afternoon and didn't hang it out until I asked if he'd remembered...
I am getting sick of heading chck-chck bang bang bang from the game. Lay on the bed this afternoon for a sleep (I was kind enough to let him have the couch...) but then that's all I could hear: boom boom boom, bang bang bang. He didn't hear me when I called out to please turn the volume down... I did manage to get about 1 hour's sleep though, which was very much needed.
C came around at about 11am and brought us lunch. She even made our plates up and we had a delicious healthy cold meal and a good conversation. Possibly a slightly one-sided conversation because I was feeling pretty knackered, but it was great to see her. She even helped L with the dishes before lunch and washed up after lunch. What an angel.
This evening, I've booked L and I in for a facial and a massage at the health and beauty place up the road. It's the same place where I had a facial last week, which was divine. I almost booked Mike in for a facial too, seeing as they are so nice, but I thought a massage would be good. So, we're going together for a half hour facial for me and a half hour massage for him at 6pm. Yay. That's my treat for L to say thank you. See, I'm not such a grumpy so-and-so after all.
Better have a shower and think about getting dressed. I've been wearing my gorgeous new sleep top which EB sent me from Brown Thomas in Dublin. Awww! Thanks EB! It is super-comfortable and just perfect. I was even thinking about wearing it up to the health and beauty place. I don't know if it's the hormones or the heat because I haven't been wearing deodorant, but I feel like I'm a bit more whiffy than usual. Probably it's because I usually sleep and wear the same thing for one day and one night. And I've also got my beautiful facial oil from The Body Shop thanks to G in London (not available in Australia). It's going to help heal up my scars nicely, when the steri-strips eventually fall off. I've noticed that my skin is a lot dryer than it usually is - no doubt because of the hormones too.
Wednesday, March 4, 2009
Wednesday 4th - Hildegard
The third and last person today was the breast physio, Hildegard. She was great too - lots of down-to-earth sensible information about taking it easy but also getting mobile and doing my special exercises as well as normal everyday exercise. We had a laugh because she was saying I could prepare a meal etc now, and I jokingly covered L's ears.
She patted me on the knee and gave a knowing wink and said that I definitely could not do any hoovering or bathroom-cleaning though. She talked me through my daily exercises and also reiterated the necessity to rest. Two general anaesthetics in two weeks is quite a lot to for the body to recover from and to make sure that when I rest to rest properly, ie lie down flat.
She said that my exercises should go to the point of discomfort but not pain. And that I should pat and touch my numb bits because eventually the nerves will respond. That was really good advice because until then I'd felt weird touching my numb bits. It may be a full year or so before I get (almost) full sensation back. At the moment it's very weird.
She patted me on the knee and gave a knowing wink and said that I definitely could not do any hoovering or bathroom-cleaning though. She talked me through my daily exercises and also reiterated the necessity to rest. Two general anaesthetics in two weeks is quite a lot to for the body to recover from and to make sure that when I rest to rest properly, ie lie down flat.
She said that my exercises should go to the point of discomfort but not pain. And that I should pat and touch my numb bits because eventually the nerves will respond. That was really good advice because until then I'd felt weird touching my numb bits. It may be a full year or so before I get (almost) full sensation back. At the moment it's very weird.
Wednesday 4th - Drain out!
The second person we saw was the nurse who removed my drain. Hooray! So great not to be carrying that little bag around with me, and I've already noticed that I have much more capability of movement. I lay on the bed while she removed the tape and the sticky bandage and then took a couple of deep breaths while she removed the drain.
It was all over in a flash - possibly before I'd even drawn the first breath in! I thought it would be a bit more long and drawn out, but it was easy. I had been feeling a bit lightheaded anyways, so I lay down for a couple of minutes while she went and got me a drink of water. We had a look at the end of the drain, and it was very interesting. A very flexible thin tube with kind of corrugated long holes along it.
About 8cm had been inside me. It felt better the minute it was removed too. While we were there, Pasty came to check on us as well, to verify when we'd be seeing the doctors again on Wednesday 11th.
It was all over in a flash - possibly before I'd even drawn the first breath in! I thought it would be a bit more long and drawn out, but it was easy. I had been feeling a bit lightheaded anyways, so I lay down for a couple of minutes while she went and got me a drink of water. We had a look at the end of the drain, and it was very interesting. A very flexible thin tube with kind of corrugated long holes along it.
About 8cm had been inside me. It felt better the minute it was removed too. While we were there, Pasty came to check on us as well, to verify when we'd be seeing the doctors again on Wednesday 11th.
Wednesday 4th - Type of Cancer
The type of cancer I have is called "Invasive Ductal Carcinoma", 30mm, Grade 2, and Ductal Carcinoma In-Situ (DCIS), which is the pre-cancer. They definitely removed the invasive ductal carcinoma during the first operation and were working on removing the DCIS with the second operation. The cancer I had is ER positive, PR positive, and HER2 negative. That means that it is one which can be treated with hormones. Something like tamoxifen but not herceptin. Herceptin is for the HER2 positive one. The good news is that it is a very common kind of cancer, so they know what kind of chemotherapy is good for it.
Wednesday 4th - Dr Ben
First person we saw today was our registrar, Ben, the one who gave us the bad news 2 weeks ago. He's a doctor of course, but I think of him as 'Ben' because I'm sure he's younger than I am! Plus he's so friendly and nice.
He told us that they are just waiting on the absolute clarification of my results from the second W.L.E (wide local excision). He reckons it's looking good, but they have to double-check with the pathologist and the doctor who did the surgery to be absolutely 100% sure. I am not holding my breath this time.
The axillary clearance (removing the lymph nodes) was a success. In the first S.N.B. (sentinel node biopsy, at the time of the first operation) they took 7 nodes and 2 came back saying they had potential to have cancer. Apparently you only have to have 1 to get chemo. So when they went back this time, they took a further 18, that's 25 in total. Of the further 18, 0 came back with the potential to have cancer. So that means, 2/25 had it. So, that was kind of good news! Plus, it may mean that I won't have radiation therapy to my armpit, just to the breast. The radiation therapy to the armpit can increase the chance of lymphodaema, so it's good not to have to have it. Yay.
He told us that they are just waiting on the absolute clarification of my results from the second W.L.E (wide local excision). He reckons it's looking good, but they have to double-check with the pathologist and the doctor who did the surgery to be absolutely 100% sure. I am not holding my breath this time.
The axillary clearance (removing the lymph nodes) was a success. In the first S.N.B. (sentinel node biopsy, at the time of the first operation) they took 7 nodes and 2 came back saying they had potential to have cancer. Apparently you only have to have 1 to get chemo. So when they went back this time, they took a further 18, that's 25 in total. Of the further 18, 0 came back with the potential to have cancer. So that means, 2/25 had it. So, that was kind of good news! Plus, it may mean that I won't have radiation therapy to my armpit, just to the breast. The radiation therapy to the armpit can increase the chance of lymphodaema, so it's good not to have to have it. Yay.
Wednesday 4th - General Update
This blog entry will be an email as well, so apologies for anyone who gets sent it more than once. It's a general update on what's happening.
I had my surgery last Friday, on the 27th of February. February sure has been quite a month for us! The latest operation was for 2 reasons:
1. A second W.L.E. (wide local excision) to make sure all the pre-cancerous cells are removed. They take a second 'wedge' from the breast, the tissue around where the first wedge was removed, so they can be certain that they got not only the cancer, but also the pre-cancerous cells around it.
2. The axillary clearance (I finally spellt that right). This is where they take the (breast) lymph nodes from under my arm. They did that because during the first operation they did a S.N.B. (sentinel node biopsy) and found that 2 nodes out of 7 had the potential to be cancerous.
It was an easier surgery in terms of knowing the 'drill' at the hospital, but definitely a harder surgery to recover from and get my head around.
Today (Wednesday 4th) was meetings day again at the hospital. We met with the doctor, a nurse, the main breast nurse, and the physio. They even seemed to be running on time and we never waited for longer than 10 minutes. Amazing!
Doctor Ben
Firstly, we met with our registrar, Ben, the one who gave us the bad news 2 weeks ago. He's a doctor of course, but I think of him as 'Ben' because I'm sure he's younger than I am! Plus he's so friendly and nice.
He told us that they are just waiting on the absolute clarification of my results from the second W.L.E (wide local excision). He reckons it's looking good, but they have to double-check with the pathologist and the doctor who did the surgery to be absolutely 100% sure. I am not holding my breath this time.
Axillary Clearance
The axillary clearance (removing the lymph nodes) was a success. In the first S.N.B. (sentinel node biopsy, at the time of the first operation) they took 7 nodes and 2 came back saying they had potential to have cancer. Apparently you only have to have 1 to get chemo. So when they went back this time, they took a further 18, that's 25 in total. Of the further 18, 0 came back with the potential to have cancer. So that means, 2/25 had it. So, that was kind of good news! Plus, it may mean that I won't have radiation therapy to my armpit, just to the breast. The radiation therapy to the armpit can increase the chance of lymphodaema, so it's good not to have to have it. Yay.
Type of Cancer
The type of cancer I have is called "Invasive Ductal Carcinoma", 30mm, Grade 2, and Ductal Carcinoma In-Situ (DCIS), which is the pre-cancer. They definitely removed the invasive ductal carcinoma during the first operation and were working on removing the DCIS with the second operation. The cancer I had is ER positive, PR positive, and HER2 negative. That means that it is one which can be treated with hormones. Something like tamoxifen but not herceptin. Herceptin is for the HER2 positive one. The good news is that it is a very common kind of cancer, so they know what kind of chemotherapy is good for it.
Drain
I also had my drain removed. Hooray! So great not to be carrying that little bag around with me, and I've already noticed that I have much more movement.
Physio
We saw the physio, Hildegard. She was great too - lots of down-to-earth sensible information about taking it easy but also getting mobile and doing my special exercises as well as normal everyday exercise. She said that my exercises should go to the point of discomfort but not pain. And that I should pat and touch my numb bits because eventually the nerves will respond. That was really good advice because until then I'd felt weird touching my numb bits. It may be a full year or so before I get (almost) full sensation back. At the moment it's very weird. She also told me to make sure that I get plenty of rest as well, to recover from the anaesthetic.
What about IVF?
That's still going ahead. I'm on the synarel, which puts me into menopause (yes, my breasts have shrunk even more!), and tomorrow I'll be starting the FSH (follicle stimulating hormone), so that my ovaries make lots of follicles which will make an egg each. It will be Hormone Hell for 2 weeks and then the egg pick up will be on 18th March. All very exciting.
What does it look like now?
Well, there is still a bit of swelling I'd say, but it still looks like a breast! Yay. At first I thought it was going to look really small, and it did seem really small and little compared with the other one. Kind of A cup on one side and D cup on the other! But now that the other one has shrunk because of the artifical menopause that I'm in, they almost look the same. I'm amazed. Apparently the doctor took over 25% of the breast.
Will there be further surgery?
I really hope not. I take my hat off to those amazing women who have gone through multiple surgeries. But I guess when it happens, we just do it and deal with it. If there is further surgery, Ben talked us through how the reconstructive surgery works. But we'd talk to the plastic surgeon about it in more detail if it came to that. Basically, there are 3 options after a mastectomy: 1. No reconstruction, 2. Immediate reconstruction that gives general shape but not definition, and 3. Later reconstruction which is more involved, taking muscle and tissue from other parts of the body plus nipple reconstruction, which would be several hours of surgery. Both surgical options are covered under medicare (which is amazing).
Is Radiation Therapy and Chemotherapy still on the list?
Yes. Next week, we'll find out for sure the results from pathology and move on from there to talk to the oncologist (which will probably be the following week) about the next stages of treatment.
Will it re-occur?
It is quite likely that at some stage of my life (because I have a fair bit more to live!), that I will deal with it again. I'll have yearly scans and mammograms from now onwards. I asked why scans weren't regular like pap smears, and it's because there are far more people who have cervical cancer than breast cancer (at the moment) and they do what their budgets allow them to do. In an ideal world, we'd have all kinds of tests, but we don't, which is why it's so important to keep an eye on your own body and inform someone about any changes. Girls, when you check, check in the mirror with your hands on your hips, at your side, and above your head. All angles please!
Dad
Dad comes to visit on Monday. Yay. He'll stay with Don, who lives only a couple of suburbs away from us. I might suggest to him to rent a car for the duration of his stay, because the bus/train connection between our two places isn't that great. It will be good to see him.
L
L has been fabulous, on the whole. A few hairy moments but we're working through it together. I'm sure he'd love to hear from you as well, just to see how he's doing. At the moment I'm so lucky in getting wonderul thoughtful emails and texts and presents and flowers, but he's not getting anything poor guy! He's going to work full time next week, except Wednesday, when we have our follow-up appointment at the hospital and also at Eve Health (fertility). It will be good to get back into a somewhat 'normal' routine again.
That's about it for now. Just waiting for next Wednesday and lots of resting but also my special arm exercises and gentle normal exercise.
I had my surgery last Friday, on the 27th of February. February sure has been quite a month for us! The latest operation was for 2 reasons:
1. A second W.L.E. (wide local excision) to make sure all the pre-cancerous cells are removed. They take a second 'wedge' from the breast, the tissue around where the first wedge was removed, so they can be certain that they got not only the cancer, but also the pre-cancerous cells around it.
2. The axillary clearance (I finally spellt that right). This is where they take the (breast) lymph nodes from under my arm. They did that because during the first operation they did a S.N.B. (sentinel node biopsy) and found that 2 nodes out of 7 had the potential to be cancerous.
It was an easier surgery in terms of knowing the 'drill' at the hospital, but definitely a harder surgery to recover from and get my head around.
Today (Wednesday 4th) was meetings day again at the hospital. We met with the doctor, a nurse, the main breast nurse, and the physio. They even seemed to be running on time and we never waited for longer than 10 minutes. Amazing!
Doctor Ben
Firstly, we met with our registrar, Ben, the one who gave us the bad news 2 weeks ago. He's a doctor of course, but I think of him as 'Ben' because I'm sure he's younger than I am! Plus he's so friendly and nice.
He told us that they are just waiting on the absolute clarification of my results from the second W.L.E (wide local excision). He reckons it's looking good, but they have to double-check with the pathologist and the doctor who did the surgery to be absolutely 100% sure. I am not holding my breath this time.
Axillary Clearance
The axillary clearance (removing the lymph nodes) was a success. In the first S.N.B. (sentinel node biopsy, at the time of the first operation) they took 7 nodes and 2 came back saying they had potential to have cancer. Apparently you only have to have 1 to get chemo. So when they went back this time, they took a further 18, that's 25 in total. Of the further 18, 0 came back with the potential to have cancer. So that means, 2/25 had it. So, that was kind of good news! Plus, it may mean that I won't have radiation therapy to my armpit, just to the breast. The radiation therapy to the armpit can increase the chance of lymphodaema, so it's good not to have to have it. Yay.
Type of Cancer
The type of cancer I have is called "Invasive Ductal Carcinoma", 30mm, Grade 2, and Ductal Carcinoma In-Situ (DCIS), which is the pre-cancer. They definitely removed the invasive ductal carcinoma during the first operation and were working on removing the DCIS with the second operation. The cancer I had is ER positive, PR positive, and HER2 negative. That means that it is one which can be treated with hormones. Something like tamoxifen but not herceptin. Herceptin is for the HER2 positive one. The good news is that it is a very common kind of cancer, so they know what kind of chemotherapy is good for it.
Drain
I also had my drain removed. Hooray! So great not to be carrying that little bag around with me, and I've already noticed that I have much more movement.
Physio
We saw the physio, Hildegard. She was great too - lots of down-to-earth sensible information about taking it easy but also getting mobile and doing my special exercises as well as normal everyday exercise. She said that my exercises should go to the point of discomfort but not pain. And that I should pat and touch my numb bits because eventually the nerves will respond. That was really good advice because until then I'd felt weird touching my numb bits. It may be a full year or so before I get (almost) full sensation back. At the moment it's very weird. She also told me to make sure that I get plenty of rest as well, to recover from the anaesthetic.
What about IVF?
That's still going ahead. I'm on the synarel, which puts me into menopause (yes, my breasts have shrunk even more!), and tomorrow I'll be starting the FSH (follicle stimulating hormone), so that my ovaries make lots of follicles which will make an egg each. It will be Hormone Hell for 2 weeks and then the egg pick up will be on 18th March. All very exciting.
What does it look like now?
Well, there is still a bit of swelling I'd say, but it still looks like a breast! Yay. At first I thought it was going to look really small, and it did seem really small and little compared with the other one. Kind of A cup on one side and D cup on the other! But now that the other one has shrunk because of the artifical menopause that I'm in, they almost look the same. I'm amazed. Apparently the doctor took over 25% of the breast.
Will there be further surgery?
I really hope not. I take my hat off to those amazing women who have gone through multiple surgeries. But I guess when it happens, we just do it and deal with it. If there is further surgery, Ben talked us through how the reconstructive surgery works. But we'd talk to the plastic surgeon about it in more detail if it came to that. Basically, there are 3 options after a mastectomy: 1. No reconstruction, 2. Immediate reconstruction that gives general shape but not definition, and 3. Later reconstruction which is more involved, taking muscle and tissue from other parts of the body plus nipple reconstruction, which would be several hours of surgery. Both surgical options are covered under medicare (which is amazing).
Is Radiation Therapy and Chemotherapy still on the list?
Yes. Next week, we'll find out for sure the results from pathology and move on from there to talk to the oncologist (which will probably be the following week) about the next stages of treatment.
Will it re-occur?
It is quite likely that at some stage of my life (because I have a fair bit more to live!), that I will deal with it again. I'll have yearly scans and mammograms from now onwards. I asked why scans weren't regular like pap smears, and it's because there are far more people who have cervical cancer than breast cancer (at the moment) and they do what their budgets allow them to do. In an ideal world, we'd have all kinds of tests, but we don't, which is why it's so important to keep an eye on your own body and inform someone about any changes. Girls, when you check, check in the mirror with your hands on your hips, at your side, and above your head. All angles please!
Dad
Dad comes to visit on Monday. Yay. He'll stay with Don, who lives only a couple of suburbs away from us. I might suggest to him to rent a car for the duration of his stay, because the bus/train connection between our two places isn't that great. It will be good to see him.
L
L has been fabulous, on the whole. A few hairy moments but we're working through it together. I'm sure he'd love to hear from you as well, just to see how he's doing. At the moment I'm so lucky in getting wonderul thoughtful emails and texts and presents and flowers, but he's not getting anything poor guy! He's going to work full time next week, except Wednesday, when we have our follow-up appointment at the hospital and also at Eve Health (fertility). It will be good to get back into a somewhat 'normal' routine again.
That's about it for now. Just waiting for next Wednesday and lots of resting but also my special arm exercises and gentle normal exercise.
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