Wednesday, March 4, 2009
Wednesday 4th - Feeling better
Today is a not-so-tired-day. Yesterday was a tired-day. Feeling better today, even though it was a big one again. Even had some nice cuddles with L and we had a laugh together about a part in the 'Looking Ahead' booklet that says "...partners might become niggly or you may have rows where you did not before." And L pointed out the bit that says "...some women find they are able to keep their usual lifestyle with few changes" and said "I think that will be you." Awww.
Wednesday 4th - Morning
Had a lovely dinner last night. Felt a bit queasy/lightheaded/nauseous at one stage but that passed. I guess it might have been because I had only had two panadol that morning and that was all. When I was in hospital, I felt like that and it was because I hadn't taken a panadol - apparently they also help to keep my bp up/temperature down. Something like that.
Still got a heavy tummy and sore bottom from my bowel problems yesterday. I drank a lot of movicol yesterday and a fair bit of metamucil, so I really hope I don't have the same problem today!
Must remember to pick up the script for the hormone-suppressing tablets when we go to the hospital today. Today is a post-op check up with the physio and the breast care nurse. And to get the dratted drain out?!?! I noticed that I've drained another 20mls in the night. I hope that's ok! There were some chunky bits in the tube which have been there for a few days, but they didn't seem to be blocking anything.
Still got a heavy tummy and sore bottom from my bowel problems yesterday. I drank a lot of movicol yesterday and a fair bit of metamucil, so I really hope I don't have the same problem today!
Must remember to pick up the script for the hormone-suppressing tablets when we go to the hospital today. Today is a post-op check up with the physio and the breast care nurse. And to get the dratted drain out?!?! I noticed that I've drained another 20mls in the night. I hope that's ok! There were some chunky bits in the tube which have been there for a few days, but they didn't seem to be blocking anything.
Tuesday, March 3, 2009
Monday 2nd - Eve Health
We went to see Dr Yazdani today at Eve Health. We were a few minutes late because getting dressed took a fair bit longer than we'd anticipated. Got there in the end though.
Had a chat to the Dr and asked some questions. I'll stay on the Synarel for the duration of the chemotherapy. At the moment I'm on it as a nose-spray, and then when the chemo starts, I'll be on it (or something very similar) through monthly injections. The Synarel puts me into menopause; it basically shuts everything down and stops me from producing hormones. I asked about my breasts, and yes, the Synarel makes them smaller because I'm effectively in menopause. I thought the right one was looking a bit shrunken up! At the moment they are quite similar in size, but that's because the left one still has a bit of swelling and the right is menopausal. I haven't started hot flushes yet, but that might be something to look forward to.
Why do I stay on the Synarel after the egg pick up and throughout chemo? Apparently if we can 'shut my system down' using the drugs and prior to chemo, studies show that there is a better chance of my (fertility) system working again after the chemo. If we let chemo 'shut it down', then the chances of it working again are lower. Interesting, don't you think? It's still in the 'studies' stage, but as far as I'm concerned, a chance at it is better than not.
From Thursday (5th), I'll start injecting myself with the FSH, follicle stimulating hormone. This makes more than one of my follicles stimulated into producing eggs. Normally, only one (or in the case or non-idenitcal twins, two) follicle produces one egg per cycle. But we're going to stimulate all my follicles to produce around 10 eggs. Luckily, my follicles seem to be in working order in each ovary.
Because they're giving me lots of hormones to stimulate the ovaries, they'll also give me a tablet which will suppress those hormones at the same time (don't ask me how that works!). So because I had breast cancer, that can react to hormones. We don't want the breast cancer coming back, so we are going to suppress those hormones, but at the same time they will stimulate my follicles to produce eggs. It's a bit confusing but I trust them!
Had a bit of a laugh in the doctor's rooms. Laughs are a bit few and far between at the moment, so any one is a good one. I had to have an internal scan to have a look at my uterus and ovaries (check out those follicles). I put the device in and the doctor guides it around with a long handle. It's all pretty amazing. Anyway, even I could see that the screen looked quite blank. And I could sort of feel something rubbing on the end of the scanner. I was going to ask the doctor about that, when he asked if my bladder was empty. I'd had a glass of water earlier, so he asked me to please empty my bladder. It was then that I realised that the scanner device wasn't the only thing up there! I still had a tampon in! How embarrassing. I laughed so much and apologised, and then was in such a hurry to go to the bathroom to remove it that I almost forgot my drain bag. When I was ready again, everything looked much clearer on the screen. I'm sure it's not the first time it's happened, but still!
So it's all go for the egg pick up to happen on the 18th of March. I'm over anaesthetics now. It will be done through my vaginal wall into my ovaries using an ultrasound scanner and a needle to collect the eggs. It might be a bit wore afterwards, but there you go.
Had a little discussion on the way out with the receptionist about payment. They were going to charge the full $135, but I insisted that we were only 'private' patients out of convenience for the doctor, but we were still 'public' and on a scheme for oncology patients (I think they must say 'oncology' instead of 'cancer' because it sounds nicer). I think that because they're a new clinic, they haven't got everything set up on system yet and possibly we're one of the first couples to go through it on this system. After some checking, we paid a lesser amount and will get back more from medicare.
After all we've been through, I don't want to be stung full price for this part. I'd be into paying more if this was the only thing we're going through, but with loss of one income for an indefinite period, it's not that easy. It was all sorted out in the end though. We just have to double-check with QFG (Queensland Fertility Group) to see if their fees are also waived. We'd been told yes, but it might be worthwile checking again. Eve Health are great in that you never leave without having a second appointment made. Ours is next Wednesday at 1.15pm for a scan to see how stimulated those follicles are.
Had a chat to the Dr and asked some questions. I'll stay on the Synarel for the duration of the chemotherapy. At the moment I'm on it as a nose-spray, and then when the chemo starts, I'll be on it (or something very similar) through monthly injections. The Synarel puts me into menopause; it basically shuts everything down and stops me from producing hormones. I asked about my breasts, and yes, the Synarel makes them smaller because I'm effectively in menopause. I thought the right one was looking a bit shrunken up! At the moment they are quite similar in size, but that's because the left one still has a bit of swelling and the right is menopausal. I haven't started hot flushes yet, but that might be something to look forward to.
Why do I stay on the Synarel after the egg pick up and throughout chemo? Apparently if we can 'shut my system down' using the drugs and prior to chemo, studies show that there is a better chance of my (fertility) system working again after the chemo. If we let chemo 'shut it down', then the chances of it working again are lower. Interesting, don't you think? It's still in the 'studies' stage, but as far as I'm concerned, a chance at it is better than not.
From Thursday (5th), I'll start injecting myself with the FSH, follicle stimulating hormone. This makes more than one of my follicles stimulated into producing eggs. Normally, only one (or in the case or non-idenitcal twins, two) follicle produces one egg per cycle. But we're going to stimulate all my follicles to produce around 10 eggs. Luckily, my follicles seem to be in working order in each ovary.
Because they're giving me lots of hormones to stimulate the ovaries, they'll also give me a tablet which will suppress those hormones at the same time (don't ask me how that works!). So because I had breast cancer, that can react to hormones. We don't want the breast cancer coming back, so we are going to suppress those hormones, but at the same time they will stimulate my follicles to produce eggs. It's a bit confusing but I trust them!
Had a bit of a laugh in the doctor's rooms. Laughs are a bit few and far between at the moment, so any one is a good one. I had to have an internal scan to have a look at my uterus and ovaries (check out those follicles). I put the device in and the doctor guides it around with a long handle. It's all pretty amazing. Anyway, even I could see that the screen looked quite blank. And I could sort of feel something rubbing on the end of the scanner. I was going to ask the doctor about that, when he asked if my bladder was empty. I'd had a glass of water earlier, so he asked me to please empty my bladder. It was then that I realised that the scanner device wasn't the only thing up there! I still had a tampon in! How embarrassing. I laughed so much and apologised, and then was in such a hurry to go to the bathroom to remove it that I almost forgot my drain bag. When I was ready again, everything looked much clearer on the screen. I'm sure it's not the first time it's happened, but still!
So it's all go for the egg pick up to happen on the 18th of March. I'm over anaesthetics now. It will be done through my vaginal wall into my ovaries using an ultrasound scanner and a needle to collect the eggs. It might be a bit wore afterwards, but there you go.
Had a little discussion on the way out with the receptionist about payment. They were going to charge the full $135, but I insisted that we were only 'private' patients out of convenience for the doctor, but we were still 'public' and on a scheme for oncology patients (I think they must say 'oncology' instead of 'cancer' because it sounds nicer). I think that because they're a new clinic, they haven't got everything set up on system yet and possibly we're one of the first couples to go through it on this system. After some checking, we paid a lesser amount and will get back more from medicare.
After all we've been through, I don't want to be stung full price for this part. I'd be into paying more if this was the only thing we're going through, but with loss of one income for an indefinite period, it's not that easy. It was all sorted out in the end though. We just have to double-check with QFG (Queensland Fertility Group) to see if their fees are also waived. We'd been told yes, but it might be worthwile checking again. Eve Health are great in that you never leave without having a second appointment made. Ours is next Wednesday at 1.15pm for a scan to see how stimulated those follicles are.
Tuesday 3rd - Pain
I'm a bit of pain. The painkillers are good but the panadol makes me so dopey and sleepy that I cant think or do anything. Probably that's a good thing for resting. The other one is stronger. You're supposed to wean yourself off the Endone (the stronger one) onto the paracetamol, and then off all together. I wanted to just go for the Endone and wean myself off that, but it has made me so constipated! Urgh! So at the moment, I'm off the panadol because I don't like having a fuzzy head, and orr the endone because I don't want to be constipated. Yes, the pain is worse but at the moment it's a nice change from the side effects of the painkillers. I think I'll take a panadol before bed. It's not actually 'Panadol' but they call the paracetamol that. I think it's called Paramax or Panamax or something like that. I've also been taking 'elevit' supplements for the IVF thing, to grow some nice healthy eggs.
Monday 2nd & Tuesday 3rd - Dinners
Our neighbour, J, cooked us dinner on Monday night. It was fabulous. And tonight, E & A are bringing dinner. D brought us lunch today. Tomorrow we decided to keep free in case we happen to get news at the hospital, and it's not good news. I don't think we will get news though - this time it's appointments with the physio to check my movement and if there is any swelling, and also with the wonderful breast nurse, Patsy, and hopefully to get my drain out.
Not a lot of fluid has gone into the drain bag in the last 48 hours, which is good. If it's more than 40mls in 24 hours, then they like to keep it in. I think I've emitted about 40mls or less in the last 72 hours, so yay. I've got myself a hook for the bag - one of the S shaped kitchen hooks, which is great for in the bathroom for hooking over the towel rail or in the shower for hooking onto the shower caddy. I also wear a dressing gown belt with it attached, but that got a bit annoying. The hook is great, but I have to remember that I'm 'attached'.
Not a lot of fluid has gone into the drain bag in the last 48 hours, which is good. If it's more than 40mls in 24 hours, then they like to keep it in. I think I've emitted about 40mls or less in the last 72 hours, so yay. I've got myself a hook for the bag - one of the S shaped kitchen hooks, which is great for in the bathroom for hooking over the towel rail or in the shower for hooking onto the shower caddy. I also wear a dressing gown belt with it attached, but that got a bit annoying. The hook is great, but I have to remember that I'm 'attached'.
Tuesday 3rd - Reprieve
Our landlord has agreed to us staying on for a month longer! Yaaaay! So that means we're out on 7th May instead of 7th April. That gives us an extra month's breathing space. Thank goodness for that and thank goodness for Michelle at Space and our very kind landlord.
Tuesday 3rd - Lunch
D brought lunch over today, which was lovely. I am so tired at the moment. I managed to get up and have some lunch but I can't say I was much company. L's also been complaining of tiredness too - it must be catching! I guess it's so emotionally draining as well as physically draining. I was thinking about having another nap, but I might try having a shower instead to freshen up a bit.
It was nice to see D and he showed us his new game that he's working on and his new tools for working on it. L and I had some cuddles and patched things up a bit and he said sorry.
D said that Dad's coming over next week but we haven't got any dates yet, which is a little bit frustrating.
L's talking about going back to work. Tomorrow's the appt at the hospital. Just a check up with the physio and hopefully to get the drain out. We've got an appointment to view a house tomorrow at 4pm, for a rental. The place next door is still up for rent, at $280, which is not bad considering that we're going to be on one income. Hard to know what to do.
Had another go at going to the toilet again, but without much luck. Very painful! The side effects of movocol stuff for constipation is explosive diarrhea and I think I'd prefer that to what's happening at the moment.
It was nice to see D and he showed us his new game that he's working on and his new tools for working on it. L and I had some cuddles and patched things up a bit and he said sorry.
D said that Dad's coming over next week but we haven't got any dates yet, which is a little bit frustrating.
L's talking about going back to work. Tomorrow's the appt at the hospital. Just a check up with the physio and hopefully to get the drain out. We've got an appointment to view a house tomorrow at 4pm, for a rental. The place next door is still up for rent, at $280, which is not bad considering that we're going to be on one income. Hard to know what to do.
Had another go at going to the toilet again, but without much luck. Very painful! The side effects of movocol stuff for constipation is explosive diarrhea and I think I'd prefer that to what's happening at the moment.
Tuesday 3rd - Exhausted
I'm lying on the couch. It's more comfortable for me than the bed as the back of the couch and the firm cushions help to support my back and my arm and the drain. I'm so exhausted that I can't move. It's very likely to do with the panadol I took at 9.40am (keeping a record of those so I don't overdo it). It's been a hard morning, especially because of the very very bad constipation I had from the other painkillers. The doctors warned me to keep a high-fibre diet. Here's me thinking a few spoonsful of metamucil might do the trick. Wrong. I must have been in there for an hour, in absolute agony and exhaustion. got help me if I ever have to give birth. L was kind enough to go to the supermarket and get a kiwifruit for me to help but while he was out I managed to help myself a bit. Yes, it was disgusting but I did get some rocks out plus a bit of blood too.
Back to the couch. I'm lying down and I can't speak, I can't open my eyes. All I want to do is to slip my mind away from the pain and the frustration and the weird pricklying sensations under my arm, and the drain and my sore arm muscles and my headache. Lying on the couch, with the breeze from the pedesatal fan on me, at least that part feels nice. I can hear L doing the dishes, on the phone to his brother S, asking S to ring back because he has to go to the toilet, going to the toilet, talking to S again about jobs, how much are you getting, you should go to Auckland, cousin C owes me a favour, he's probably out surfing, ring these guys I worked for, they might be ok or maybe not because I hooked C up with them and I don't know if he's ruined my name now, etc. L's voice fades away and I hear him tapping on the keys in the study. Finally, finally, I slip into a blissful painfree sleep.
It seems like a few seconds later: come one, wake up, would you like a cup of tea, how about a drink, you should drink something. Internally I panic and think I've been asleep for hours and hours. I'm so knackered and all I want to do is go back to that blissful non-existence. I don't want a cup of tea. No. Come on, sit up, it will be good for you to get up. I do manage to croak: Fuck off, and the strength it takes me to say something promptly makes me cry, hiccoughy sobs which pull on my drain and make my muscles ache (in my defense, I'd been watching a LOT of Outrageous Fortune). I ask what the time is: not yet 12. So I've been lying like a vegetable for about an hour and sleeping for less than that. I am so angry but I can't move. I can't do anything. I lie there listening to the tap drip and eventually figure it out.
This was the same as yesterday. I was resting on the couch and L wanted me to rest in bed. The last place I wanted to be was back in bed where I'd had possibly the most uncomfortable night's sleep and a sore back from lying in one position. But he wanted to play his xbox game. As soon as I did get up yesterday, on went the game. God knows why he can't hook it up to the other TV which is sitting in our room doing nothing? But now, today, I was so mad, with being woken up plus the tap's drip drip dripping, that I manage to get up and go to the bedroom, saying that all I want is to sleep in peace and to get better and you can have what you want the couch and your precious game. He shouted back that he was trying to help me and if I didn't want his help then he wouldn't give it... or something to that effect, probably harsher but I have this great knack of being able to instantly forget nasty things that people say to me. I'm pretty sure there were a few expletives in there. I did manage to lie on the bed (whose sheets have been promised to be changed for 2 days now... perhaps later I'll be up to that task), but couldn't sleep...
Fortunately, my mind was almost blank, I could look up into my brain and it looked exactly like a grey London sky with nothing in it whatsoever. I heard my phone ring and L speak to D about D coming over. I knew D was bringing lunch, which is why I wanted to rest as much as possible before then. I did get up, got myself a drink (opening the bottle was tricky), put my pyjama pants back on and came in here to work it out. A few minutes ago, I had an apologetic L come in saying yes he'd look after me. I'd prefer that to be on my terms, not his, but we'll see how things go. I've also decided to send him a bunch of flowers to say thank you for looking after me. He is the kind of person who needs a lot of thanks and positive feedback about the work he's doing. It's the same at his work - if he doesn't get regular praise from his boss/workers, he thinks they are plotting against him. I should have seen this coming, but to be honest, I've been bloody exhausted.
(While I'm on the predictions path, the next thing will be the course he's been doing. I bet he'll get to the end of this week and won't have worked on the course and then he'll berate himself for not doing it and how everything is going shit right now and he just can't seem to get a grip on his life and it's been like that for a while, everything's going wrong, something is working against us, doesn't know how to make it go away. It's been like that since we met - I sometimes wonder if I'm the thing which is holding him back. I'f he'd not met me, he'd have his own house by now... and his savings wouldn't be sucked away into looking after the invalid.)
Back to the couch. I'm lying down and I can't speak, I can't open my eyes. All I want to do is to slip my mind away from the pain and the frustration and the weird pricklying sensations under my arm, and the drain and my sore arm muscles and my headache. Lying on the couch, with the breeze from the pedesatal fan on me, at least that part feels nice. I can hear L doing the dishes, on the phone to his brother S, asking S to ring back because he has to go to the toilet, going to the toilet, talking to S again about jobs, how much are you getting, you should go to Auckland, cousin C owes me a favour, he's probably out surfing, ring these guys I worked for, they might be ok or maybe not because I hooked C up with them and I don't know if he's ruined my name now, etc. L's voice fades away and I hear him tapping on the keys in the study. Finally, finally, I slip into a blissful painfree sleep.
It seems like a few seconds later: come one, wake up, would you like a cup of tea, how about a drink, you should drink something. Internally I panic and think I've been asleep for hours and hours. I'm so knackered and all I want to do is go back to that blissful non-existence. I don't want a cup of tea. No. Come on, sit up, it will be good for you to get up. I do manage to croak: Fuck off, and the strength it takes me to say something promptly makes me cry, hiccoughy sobs which pull on my drain and make my muscles ache (in my defense, I'd been watching a LOT of Outrageous Fortune). I ask what the time is: not yet 12. So I've been lying like a vegetable for about an hour and sleeping for less than that. I am so angry but I can't move. I can't do anything. I lie there listening to the tap drip and eventually figure it out.
This was the same as yesterday. I was resting on the couch and L wanted me to rest in bed. The last place I wanted to be was back in bed where I'd had possibly the most uncomfortable night's sleep and a sore back from lying in one position. But he wanted to play his xbox game. As soon as I did get up yesterday, on went the game. God knows why he can't hook it up to the other TV which is sitting in our room doing nothing? But now, today, I was so mad, with being woken up plus the tap's drip drip dripping, that I manage to get up and go to the bedroom, saying that all I want is to sleep in peace and to get better and you can have what you want the couch and your precious game. He shouted back that he was trying to help me and if I didn't want his help then he wouldn't give it... or something to that effect, probably harsher but I have this great knack of being able to instantly forget nasty things that people say to me. I'm pretty sure there were a few expletives in there. I did manage to lie on the bed (whose sheets have been promised to be changed for 2 days now... perhaps later I'll be up to that task), but couldn't sleep...
Fortunately, my mind was almost blank, I could look up into my brain and it looked exactly like a grey London sky with nothing in it whatsoever. I heard my phone ring and L speak to D about D coming over. I knew D was bringing lunch, which is why I wanted to rest as much as possible before then. I did get up, got myself a drink (opening the bottle was tricky), put my pyjama pants back on and came in here to work it out. A few minutes ago, I had an apologetic L come in saying yes he'd look after me. I'd prefer that to be on my terms, not his, but we'll see how things go. I've also decided to send him a bunch of flowers to say thank you for looking after me. He is the kind of person who needs a lot of thanks and positive feedback about the work he's doing. It's the same at his work - if he doesn't get regular praise from his boss/workers, he thinks they are plotting against him. I should have seen this coming, but to be honest, I've been bloody exhausted.
(While I'm on the predictions path, the next thing will be the course he's been doing. I bet he'll get to the end of this week and won't have worked on the course and then he'll berate himself for not doing it and how everything is going shit right now and he just can't seem to get a grip on his life and it's been like that for a while, everything's going wrong, something is working against us, doesn't know how to make it go away. It's been like that since we met - I sometimes wonder if I'm the thing which is holding him back. I'f he'd not met me, he'd have his own house by now... and his savings wouldn't be sucked away into looking after the invalid.)
Monday, March 2, 2009
Monday 2nd - Calmer!
I got over my housecleaning frenzy and that was all good. J came over and cooked us dinner, which was awesome. Actually, she'd cooked it all at her place and just came to heat up the delicious sauce and put the spaghetti on. That was great - I just wish we weren't all so tired and then we could have had even better conversation. But we had a great, quiet, stimulating night in.
Tomorrow, D's coming over and bringing us lunch and then E and A are going to bring us dinner! We are so lucky to be surrounded by such caring people. I also had a nice little catch up with my friend EB (in Dublin) via Skype as well. That was really neat too. Got to love the internet and skype and the likes for instant contact.
Tonight Suki's outside and Zoxy's in. It's good when they can kind of tag-team, one out, one in. Then we don't have to worry about them fighting. They are getting better and better at tolerating each other. Perhaps tomorrow we'll try a day when they're both inside, with us to keep an eye on them. Must go to bed now for some much-needed L cuddles. For both of us :-)
Tomorrow, D's coming over and bringing us lunch and then E and A are going to bring us dinner! We are so lucky to be surrounded by such caring people. I also had a nice little catch up with my friend EB (in Dublin) via Skype as well. That was really neat too. Got to love the internet and skype and the likes for instant contact.
Tonight Suki's outside and Zoxy's in. It's good when they can kind of tag-team, one out, one in. Then we don't have to worry about them fighting. They are getting better and better at tolerating each other. Perhaps tomorrow we'll try a day when they're both inside, with us to keep an eye on them. Must go to bed now for some much-needed L cuddles. For both of us :-)
Monday 2nd - IVF
Went to see the IVF guy today. Was running a bit late because I'd gone back to bed after my alarm went off and then I overslept. It also took a bit longer for me to have a shower and to get dressed (that was a bit of a mission) than expected. More later... gotta shower before J our wonderful neighbour comes over with our dinner.
Subscribe to:
Posts (Atom)
