A lot has happened since post 81. Bouncy Ball Therapy so I will try not to waffle on.
The update for today is really that I am fresh from a visit to see my GP nurse, after having my revision surgery unveiled for the first time. I can tell you, I am elated. I have suffered this last 18 months with my neck, back and muscle cramping spasms in my chest. I feel so much more comfortable today, despite the soreness and stickiness of my skin from removing dressings and sutures. The band of tightness has reduced and although it is still there all the time under my arms, my reconstruction breast muscle has been released from that spasm. I am relieved. I risked losing my flaps if the blood supply was cut by mistake but my surgeon did good.
Background story
SKIP if you know my story of reconstructed boob spasms and whining about neck pain. FIRST TIME readers - heres a brief low down...
It has been 18 months since I really re-entered life again after my LD Flap breast reconstruction some 9 months prior. I started Uni so I could retrain after being made redundant from my job. That was September 2009, and after only a couple of months back to a basic but normal life, I started to go downhill physically with weak back, neck and shoulder strength. I wasted a year of Uni because my neck was getting worse, not better and lots of typing and sitting down doing my computing course were not helping. I even had to rethink my career path because of my neck and spasm issues. I felt better being more active but without lifting weight or typing lots. I decided on an Extended Science BSc course and it has been challenging with all my appointments this year; with physiotherapists, doctors, surgeons, hospital, all on top of my studies but I made it through and did pretty well this year. Very pleased indeed!
To summarise, it has been a tough 18 months (with added complications which I don't need to bleat on about right now) but 7 days ago I had my 4 hour revision surgery with the lovely Mr Camp, my seriously wonderful surgeon. My overlapped nipple patch sections have gone - now smooth, my dog ears have gone - now smooth, lengthening my scars to about 8 inches each on my back and I have two new scars, one inch each, vertically, under each armpit through which the spasm causing nerves for the LD muscles were hunted down and snipped. I have decided to get some will be getting some photos posted soon of my whole process but was feeling a little shy before but I feel it is time to share it as I am quite proud of what surgeons can do for women in the predicament I find myself in by being BRCA1 positive.
I had my surgery at Derriford Hospital under the superb care, level headed and joking manner of Mr Camp, a plastic surgeon and the staff of Freedom Ward and Lynham Ward were brilliant. Short staffed but calm, friendly, helpful and kind. I stayed overnight with some great people under the weather with an interesting selection of different physical issues. An unstoppable nosebleed, implants balancing odd breasts, an ulcerated throat, a thyroid gland removal and a leg injury..oh and me with my breast reconstruction revisions and denervination of muscles.
Clean, infection free, comfortable overnight stay with extra helpings of toast and jam for breakfast please. You were all brilliant!
I, on the other hand, am healing very well and looking forward to going shopping for summer vests that I now feel I can wear without conscience of onlookers staring at my indented nipples patches (paddles) through my tops. I am still not sure if I will wear a bra again. So many friends have commented about how nice it would be not to wear one ever again and I am so used to it. I might just get some nude coloured covers like these after I get some little nipple bumps done - not sure I want anything too much of a nipple really - and these would help cover them up in sheerer clothing. Nipple Patch - Silicone Petals
Showing posts with label BRCA1 surgery options. Show all posts
Showing posts with label BRCA1 surgery options. Show all posts
Thursday, 5 May 2011
Thursday, 2 April 2009
52. Recovery time
I have been home for 11 days now and it's been 17 days since my surgery and all is going very well.
When I came home I was a bit of a mental mess. I had become used to no TV, no concentrating on anything, no real company. I found coming home very hard but I was very glad to be back all the same. During my couple of days I wondered how the hell I was supposed to cope at home with my husband in such pain of his own with his knees. He was so tired running in and out of hospital visiting me, not sleeping properly, worrying about me. When I got home his schedule got a whole lot busier and I hated to ask him for anything but initially I needed as much attention as I did in hospital - I could barely do anything for myself except get to the loo, eat and drink. I felt extreme guilt at asking him to do anything and so forced myself to become more independent than I should so early after surgery. My requests for drugs and things upstairs just caused him more problems and eventually we fell out with each other a little. I found being an invalid at home really hard as there were jobs I would just do without ever asking them to be done for me. I had to shut off. I couldn't do things I wanted to do, just what I needed to do.
Day 1 and 2 at home were the most difficult. I hurt, I couldn't get comfy anywhere. I got the post-op blues and cried quite a lot. Its all the drugs wearing off and the emotional relief to be out of hospital and realising you are incapacitated. I just had to let it out. Then nature thought it would be really funny to just launch my period on me. Nice one! I just wanted to curl up and disappear at moments. Day 2 at home I had to wash my hair - it was grimmer than grim. It hadn't been washed for 9 days and it felt like it was crawling on my scalp. Euwwww! Trying to lean over the bath to the shower head was a physical challenge. Both my husband and I were in agony after but we did it and I felt very refreshed.
Day 3 (Wednesday) at home I managed to wash my hair on my own in the bathroom sink with a jug and I was chuffed. I also had my stepson visit with my in-laws. He was a little freaked but wanted to see my operation results and so I happily showed him. It helped him understand why he couldn't hug me or be rough or play fight (this is a big no no and sorely missed :( ). I was knackered by the time they left.
Day 4 (Thursday) I managed to straighten my hair (don't even ask how..I must have been crazy) but I did it. I wanted to look half decent to go back into hospital to have my dressings taken off. I walked so slowly into the hospital, it was taxing. I felt so weak. I made it though. As we made our way through the people I realised I was with a man on crutches and people were dodging him and had no idea how fragile I was too. I was paranoid about being nudged, bumped or knocked. My back started to hurt a lot as I held myself upright for a long time and walked practically a marathon compared to my recent walkabout efforts in hospital and the house. Jenny my breast care nurse (BCN) was pleased to see that things had healed really well but one area on the right nipple patch was still bleeding slightly so she put a couple of big plasters on and told me to keep the scars dry until Saturday. Flannel washing is not effective enough. My armpits felt so sore and nerve damaged that I could barely have them touched and couldn't reach them to clean them myself. My skin is gross, my pores are clogged, my skin is flaking..I cannot wait for the day I can immerse myself in a bath again. I am stinky I'm sure.
Day 6 (Saturday) A bath! I sat in the bath up to my hips - it was lovely for a short time but my back started to ache a lot. It was painful but worth it. My husband washed my back down with a moist cotton cloth I brought back from hospital. It was weird to feel pressure but no sensation of touch on my back. He wiped my armpits which hurt like mad, like flu-skin all the time. I have no idea what is going on there. The surgeon told me later in the week that it was probably referred pain. That means that my arms are not damaged but the nerves have been cut under my arms where the muscles have been pulled through to the breast area and that my brain has panicked. My brain thinks my arms hurt because the nerves have been severed. I may never regain the feeling in the backs of my arms or my armpits but only time will tell. The sensation is horrible but I am trying to convince my brain that it is not painful. I hope this will help it get over the trauma. Me talking to my brain..It's okay brain, my arm is okay and so is the other one now stop sending me pain signals because its rather uncomfortable and weird and I am not enjoying the experience. Ta! I do hope my brain is listening to me.
Day 8 (Monday) I stopped day napping. Although I feel tired I can't seem to nap anymore. I know sleeping is the best therapy but I can't. I just rest instead. I wish I could just sleep but sleeping at night is hard enough without ruining my sleep pattern with day napping too. I gave up trying and just spent the following days just taking it very very easy.
Day 9 (Tuesday) I resigned myself to a day in bed. I needed comfy rest. I spent almost 5 hours in bed watching TV and just shutting my eyes. It was worth it.
Day 10 (Wednesday) Fluid draining and post op check up!! I managed to survive a ride to hospital to meet Mr Cant (seeing me in Me Drabble's absence) for a post op check up. All is fine. I haven't heard about my breast tissue exam yet and I assume all is well but I forgot to ask about it so, in the absence of news, I will assume good news and there was no cancer found or they would be on me about chemo or radiation or something I'm sure. A real 'no we didn't find any cancer' is what I wanted but I still don't know. We discussed numbness and weird sensations and he kept reminding me that it is early days (impatient me again) and that the lump in the left breast does feel like muscle and might not ever go down but should do with time. I hope so. Mr Cant felt very clinical and as I questioned the feelings in my body I almost felt like he was telling me tough, you chose this surgery. I know that's probably completely irrational but that's how I felt. Mr Drabble is much more personable and reassuring in manner. I thought Mr Cant was very clinical but very factual in our discussion. I felt a little sad though, I would have like both my breasts to be the same now, my right one is so much better than the left. I had matching boobs before and now I don't I am not sure I believe they ever will be. I know time will tell but I have to face maybe never having symmetry again. I have to focus on being alive not perfect!
Whilst I was there I showed him the fluid on my back that had been building since the drains had been removed. I managed to lay on my side (just) and didn't feel the local anaesthetic injection in my lower right back. Then a pushing sensation and then a liquid noise. 100ml of fluid removed from the right where the muscle used to be in my back. The left was less comfortable. I felt the needle go in, stinging me then burning like mad under my skin. I sucked air through my teeth in pain and squeezed the nurses fingers hard (sorry!). She told me to breathe deeply through it. Finally it subsided and then the pushing. He pressed my back and air came out as well as 150ml of liquid. My husband said it looked like I was having a wee out of my back. Nice! I asked what colour it was and if I could see it. 250ml of frothy topped lucozade orange cloudy liquid. Cool but also yuk! I felt a whole lot lighter and smaller! My back was squelchy again on the left as I moved but I prayed the fluid wouldn't come back again in such quantity. Hurry body, heal!
We then went into my husband's work to drop off some paperwork. He is a secondary school teacher and it was great to see inside his work and a school again. It was a fleeting visit and then we popped into Tescos to get some shopping and I felt utterly exposed and vulnerable. Everyone was potentially going to hurt my fragile body. I must have looked so paranoid AND lazy as my husband pushed the trolley with one hand and one in a wrist crutch. I couldn't reach anything much and I just looked totally pathetic. I felt useless. My back was killing me by now. I had already done way too much. We returned home and had lunch then I managed to sit in the car for 40 minutes travelling to see my stepson. I held up all afternoon, out in the garden, sitting in the conservatory, ate dinner at my mum-in-laws and then made it home again in the car for another 40 minute ride. I couldn't have made it without my soft pillow to lean on. Travelling right now is still very very uncomfortable and leaves me tense with no means of relaxing my muscles in my back. Oh for a massage!!
Day 11 (Thursday - today) A take it easy day. I woke twice in the night but went back to sleep without any painkillers. I think this was due to the fluid drain. I was so much more comfortable. I felt so tired when I woke up though. I decided to just hang out in the garden. Poked around in the pond and sat in the sun, not a lot else. I was totally knackered after yesterday and it was just a ridiculous amount of stuff to do so soon after my operation. I am a fool. I feel okay though, just very tired. I must slow down now, I know I am doing to much and I do not want any repercussions from my stupidity so for the next week I will try to nap at least 30 minutes a day and take it easy. Which is something I find hard to do.
I so need a trip to the beach! I could sit for hours watching people surf, fish, build sand castles, dig trenches, dams and fly kites. I have to go soon. I know I can survive the bumpy wiggly country lanes from here to the beach. It's 20ish minutes..I am going to schedule it in for next week. I have to get there. In the meantime some river sitting action wouldn't go amiss. I have started with pond sitting for now and will build up to the big stuff by next week. I need to get out! I am missing my car and I will start walking alone next week too. I need to before I go mad (or more mad).
When I came home I was a bit of a mental mess. I had become used to no TV, no concentrating on anything, no real company. I found coming home very hard but I was very glad to be back all the same. During my couple of days I wondered how the hell I was supposed to cope at home with my husband in such pain of his own with his knees. He was so tired running in and out of hospital visiting me, not sleeping properly, worrying about me. When I got home his schedule got a whole lot busier and I hated to ask him for anything but initially I needed as much attention as I did in hospital - I could barely do anything for myself except get to the loo, eat and drink. I felt extreme guilt at asking him to do anything and so forced myself to become more independent than I should so early after surgery. My requests for drugs and things upstairs just caused him more problems and eventually we fell out with each other a little. I found being an invalid at home really hard as there were jobs I would just do without ever asking them to be done for me. I had to shut off. I couldn't do things I wanted to do, just what I needed to do.
Day 1 and 2 at home were the most difficult. I hurt, I couldn't get comfy anywhere. I got the post-op blues and cried quite a lot. Its all the drugs wearing off and the emotional relief to be out of hospital and realising you are incapacitated. I just had to let it out. Then nature thought it would be really funny to just launch my period on me. Nice one! I just wanted to curl up and disappear at moments. Day 2 at home I had to wash my hair - it was grimmer than grim. It hadn't been washed for 9 days and it felt like it was crawling on my scalp. Euwwww! Trying to lean over the bath to the shower head was a physical challenge. Both my husband and I were in agony after but we did it and I felt very refreshed.
Day 3 (Wednesday) at home I managed to wash my hair on my own in the bathroom sink with a jug and I was chuffed. I also had my stepson visit with my in-laws. He was a little freaked but wanted to see my operation results and so I happily showed him. It helped him understand why he couldn't hug me or be rough or play fight (this is a big no no and sorely missed :( ). I was knackered by the time they left.
Day 4 (Thursday) I managed to straighten my hair (don't even ask how..I must have been crazy) but I did it. I wanted to look half decent to go back into hospital to have my dressings taken off. I walked so slowly into the hospital, it was taxing. I felt so weak. I made it though. As we made our way through the people I realised I was with a man on crutches and people were dodging him and had no idea how fragile I was too. I was paranoid about being nudged, bumped or knocked. My back started to hurt a lot as I held myself upright for a long time and walked practically a marathon compared to my recent walkabout efforts in hospital and the house. Jenny my breast care nurse (BCN) was pleased to see that things had healed really well but one area on the right nipple patch was still bleeding slightly so she put a couple of big plasters on and told me to keep the scars dry until Saturday. Flannel washing is not effective enough. My armpits felt so sore and nerve damaged that I could barely have them touched and couldn't reach them to clean them myself. My skin is gross, my pores are clogged, my skin is flaking..I cannot wait for the day I can immerse myself in a bath again. I am stinky I'm sure.
Day 6 (Saturday) A bath! I sat in the bath up to my hips - it was lovely for a short time but my back started to ache a lot. It was painful but worth it. My husband washed my back down with a moist cotton cloth I brought back from hospital. It was weird to feel pressure but no sensation of touch on my back. He wiped my armpits which hurt like mad, like flu-skin all the time. I have no idea what is going on there. The surgeon told me later in the week that it was probably referred pain. That means that my arms are not damaged but the nerves have been cut under my arms where the muscles have been pulled through to the breast area and that my brain has panicked. My brain thinks my arms hurt because the nerves have been severed. I may never regain the feeling in the backs of my arms or my armpits but only time will tell. The sensation is horrible but I am trying to convince my brain that it is not painful. I hope this will help it get over the trauma. Me talking to my brain..It's okay brain, my arm is okay and so is the other one now stop sending me pain signals because its rather uncomfortable and weird and I am not enjoying the experience. Ta! I do hope my brain is listening to me.
Day 8 (Monday) I stopped day napping. Although I feel tired I can't seem to nap anymore. I know sleeping is the best therapy but I can't. I just rest instead. I wish I could just sleep but sleeping at night is hard enough without ruining my sleep pattern with day napping too. I gave up trying and just spent the following days just taking it very very easy.
Day 9 (Tuesday) I resigned myself to a day in bed. I needed comfy rest. I spent almost 5 hours in bed watching TV and just shutting my eyes. It was worth it.
Day 10 (Wednesday) Fluid draining and post op check up!! I managed to survive a ride to hospital to meet Mr Cant (seeing me in Me Drabble's absence) for a post op check up. All is fine. I haven't heard about my breast tissue exam yet and I assume all is well but I forgot to ask about it so, in the absence of news, I will assume good news and there was no cancer found or they would be on me about chemo or radiation or something I'm sure. A real 'no we didn't find any cancer' is what I wanted but I still don't know. We discussed numbness and weird sensations and he kept reminding me that it is early days (impatient me again) and that the lump in the left breast does feel like muscle and might not ever go down but should do with time. I hope so. Mr Cant felt very clinical and as I questioned the feelings in my body I almost felt like he was telling me tough, you chose this surgery. I know that's probably completely irrational but that's how I felt. Mr Drabble is much more personable and reassuring in manner. I thought Mr Cant was very clinical but very factual in our discussion. I felt a little sad though, I would have like both my breasts to be the same now, my right one is so much better than the left. I had matching boobs before and now I don't I am not sure I believe they ever will be. I know time will tell but I have to face maybe never having symmetry again. I have to focus on being alive not perfect!
Whilst I was there I showed him the fluid on my back that had been building since the drains had been removed. I managed to lay on my side (just) and didn't feel the local anaesthetic injection in my lower right back. Then a pushing sensation and then a liquid noise. 100ml of fluid removed from the right where the muscle used to be in my back. The left was less comfortable. I felt the needle go in, stinging me then burning like mad under my skin. I sucked air through my teeth in pain and squeezed the nurses fingers hard (sorry!). She told me to breathe deeply through it. Finally it subsided and then the pushing. He pressed my back and air came out as well as 150ml of liquid. My husband said it looked like I was having a wee out of my back. Nice! I asked what colour it was and if I could see it. 250ml of frothy topped lucozade orange cloudy liquid. Cool but also yuk! I felt a whole lot lighter and smaller! My back was squelchy again on the left as I moved but I prayed the fluid wouldn't come back again in such quantity. Hurry body, heal!
We then went into my husband's work to drop off some paperwork. He is a secondary school teacher and it was great to see inside his work and a school again. It was a fleeting visit and then we popped into Tescos to get some shopping and I felt utterly exposed and vulnerable. Everyone was potentially going to hurt my fragile body. I must have looked so paranoid AND lazy as my husband pushed the trolley with one hand and one in a wrist crutch. I couldn't reach anything much and I just looked totally pathetic. I felt useless. My back was killing me by now. I had already done way too much. We returned home and had lunch then I managed to sit in the car for 40 minutes travelling to see my stepson. I held up all afternoon, out in the garden, sitting in the conservatory, ate dinner at my mum-in-laws and then made it home again in the car for another 40 minute ride. I couldn't have made it without my soft pillow to lean on. Travelling right now is still very very uncomfortable and leaves me tense with no means of relaxing my muscles in my back. Oh for a massage!!
Day 11 (Thursday - today) A take it easy day. I woke twice in the night but went back to sleep without any painkillers. I think this was due to the fluid drain. I was so much more comfortable. I felt so tired when I woke up though. I decided to just hang out in the garden. Poked around in the pond and sat in the sun, not a lot else. I was totally knackered after yesterday and it was just a ridiculous amount of stuff to do so soon after my operation. I am a fool. I feel okay though, just very tired. I must slow down now, I know I am doing to much and I do not want any repercussions from my stupidity so for the next week I will try to nap at least 30 minutes a day and take it easy. Which is something I find hard to do.
I so need a trip to the beach! I could sit for hours watching people surf, fish, build sand castles, dig trenches, dams and fly kites. I have to go soon. I know I can survive the bumpy wiggly country lanes from here to the beach. It's 20ish minutes..I am going to schedule it in for next week. I have to get there. In the meantime some river sitting action wouldn't go amiss. I have started with pond sitting for now and will build up to the big stuff by next week. I need to get out! I am missing my car and I will start walking alone next week too. I need to before I go mad (or more mad).
Friday, 21 November 2008
3. Surgery - the options
Well, I thought I should probably post what surgery is available to me. For the feint hearted, there is no need to worry - no real blood was spilled in the making of these videos – all CGI! It's probably easier to show you these than eventually explain what will happen to my body.
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