58. I might be evolving..into a Woolly Mammoth!!

A Mammoth? Yeah..maybe but how? Tis a surgical hormonal miracle I tell you!


Went back to the health centre today to get my scar goo, stitch poking out problem looked at again. The nurse hadn't seen my boobs before (I am calling them boobs a lot..smoobs seems to be used in jest only these days). She was initially impressed and then asked what the problem was. I explained about the stitches sticking out and the weeping areas on my back scars. I turned around.."Oh my - wow that's pretty major surgery!" I guess my 7 inch scars are still impressive and shocking. I turned round so we could talk and she comment on how 'hairy' I was. Now this is something I hadn't talked about because I was hoping it was my imagination. I told her that I was not hairy (only my forearms). I even showed her my 'needing a shave' armpits (they are still hard to sort out as I can't feel anything if I cut myself to shreds)to demonstrate how not hairy I am. She agreed, then checked my back which is also not hairy. I told her that since my surgery both my husband and I have noticed that my left breast is getting hairy and pimply like more hair is trying to grow through.

Now there is downy body hair that women have and then there is this..this is wrong. The downy hair has got darker and seems more. Maybe it's just darker. I'm not imagining it. The nurse even commented on it. Weird thing is, it's mostly the left breast, the one that is not quite so good as the right one. It's the problem child.

Aside from that little issue and discussion about being hairy, I had two stitches pulled out of my back. One was the 'knobble' I mentioned before in my previous blog post. She cleaned up the hole (!), put some iodine on it and a dressing. Back to flannel washing again. Damn it!

All looks good otherwise. I am booked in to see both the nurse and a doctor on Friday to get a blood test. She thinks it might be hormonal. Maybe my body is sending hormones to my boobs and my boob skin doesn't know what to do with it so it's decided it would like some hair..not really had that before..this'll teach her for chopping me about.

Thanks hormones..now I have one furry, spotty, not quite so good smoob.

Just what I need! Um...no.

57. Pangs and hurty thangs

After overdoing it last week and thinking I was doing just great and surely after 4 weeks my body had started healing pretty good by now, I started to suffer for my exertion. I had been moving some rocks (yes rocks..not big ones) around near the pond as we tried to fix a leak. It was a job that had to be done and I tried to be careful. Two days later I felt like I'd been punched in the boobs, back and sides! I still do but its a weird sensation, like an internal bruise ache but only in my boobs now. I guess that will go with time as the muscle inside sorts itself out.

So after my overdoing it incident I started to really look at my back more closely. I noticed a puss-like area on one of my back scars. After having a bath it had disappeared but left a red sore area and there was a black spike sticking out of my back - a stitch! If I look over my shoulder in the mirror I can see my back scars, just, and so by using a hand held mirror and contorting my body a little I can see a bit closer. I spotted another black bobble too - another stitch end. I've been using Bio Oil for the last couple of weeks (week 3-4) to help my scars soften but I have stopped for days now since my scars have started to weep and gone a little yellow and dark purple!

I decided (after much persuasion from Chris, my husband) that I should go and check it out. I called Jenny my Breast Care Nurse (BCN) and left a message about my scars and asked what to do. She called back some time later and told me to go to the GP or to drop in and see her if I could. I decided to think about it over the weekend and then by Wednesday things hadn't improved so I called my local doctors surgery to make an appointment.

Thursday, 1.30pm - Health Centre

I booked in, chose a seat and scanned the room. Virtually empty apart from a couple with a very chatty and happy little boy abour 4 years old. I was happily sat watching and listening to them and their son, smiling to myself. And then, as they got called by the buzzer, the woman stood up and turned towards me. She had a huge bump. And the significance of this? I had a pang of something I thought I would never feel. Sadness. Sadness about pregnancy. It was something deep and as they went through the door my eyes welled up. I blinked it all away. I tried to stop being cruel to myself, I've dealt with all that stuff, the kids stuff. And just as I think the feeling has passed, and as buses do, along came another woman with a huge bump..on her way out of her appointment. She stroked her stretched belly affectionately. I shrank inside. I curled up.

My nurse came and called me in and I asked her for a tissue as my nose was running. I disguised my moment from her and went into the issues of my scars and surgery. This helped me forget the minutes before as I launched into the hows and whys and the BRCA1 gene. She was very interested and very impressed with my surgery. She couldn't believe my boobs had been rebuilt with my back muscles and skin. I let her touch them so she could feel how some areas are still hard inside. She was quite amazed all round.

On looking at my scars, she confirmed the stitches had made it through my skin and there had been some scar opening up and weeping but it had dried and started healing again. Maybe I'd been overdoing it or too much physio? I told her I'd been a little too active in the garden and that I would take it easy. We switched my prescription from Codeine to Co-Codemal so I don't have to take Paracetomal and Codeine and get less of a dose of Codeine which is constipating opiate. I had to make a follow up appointment to see a nurse again in a week to keep an eye on the 'bobble' and stitch end that had been pushed out through my skin. That made me feel better, no antibiotics, no infection just some monitoring.

I have done little all week, no physio, no lifting, nothing. I feel better for it and the fluid on my back is now almost gone. The seroma at the top of my scars on my back has gone down a lot now and is itchy but I know things are getting better. I still hurt but it feels like a world away from the week in hospital now. Your body and mind is equipped with a blurring mode to help forget bad stuff. I am glad to be distancing myself from all that worry, all that stabbing pain, all that fidgeting.

I actually slept on my back with just 2 pillows last night for the first time in 6 weeks. I only woke once, briefly, and I can lie for very short periods on my side now, enough comfort to doze. It's great. Truly great. Normality will be mine again. Yes it will!

56. Time to disturb the mothballs

I am doing my bit for chaity again but I can assure you that doing Race for Life this year is more challenging for me than it is for you to get your debit or credit card out and pledge a LARGE or a small donation online for Cancer Research UK. Check out my page --> http://www.raceforlifesponsorme.org/leighannjones

Me abseiling 200ft off the Civic Centre in Plymouth





Me running (yes running) the Race for Life on Plymouth Hoe (5km)








This year is special. I am meeting with some very special women who have shared their own intimate journeys, feelings, choices..some even photos of their own scars and knowing them has helped me get through this. These women also have BRCA1 or BRCA2 gene mutations, some have unfortunately already had cancer, some have taken the preventative surgery route like myself but all of us have struggled through our diagnosis, the implications of knowing about our high risk of cancer and how it can filter through the family. We have all endured many family deaths from cancer and we unite this year to make our gene known - we go to promote the support site I set up and we need your cash.

Me in my stylish umbrella hat!



BRCA Umbrella - the support site I set up for people with BRCA gene mutations



Imagine if you had to watch your children agonise over whether to have children or not because of a gene you had passed onto them, imagine watching them decide to undergo 10 hours of surgery to remove perfectly healthy breast tissue or wombs or ovaries.

Now imagine a moment when all that had to happen was a gene mutation fix, where family was no longer an agonising worry, where cancer was no longer a threat..for life.

Your money can help research get there.

55. Progress and challenges

So here I am, 3 weeks and 5 days on from surgery. I didn't to document every up or down day as they happened, or spend all my time fixed to my screen either. That's a good thing in itself as it shows me that I am not focused on one thing anymore, that life is returning to me and I have taken off my blinkers. Probably a massive relief to all who have to interact with me frequently! I'm sure that it got a little boring but that is what support is, being there, listening, for as long as it takes.

So, as I said before, here I am. Here is far enough away from surgery that I have little 'pain' and the discomfort that was pain is now just discomfort that I have become used to. That takes some time to adjust to, in knowing your limits you can find a smooth rhythmn of getting through a day rather than hurting yourself.



Dressing myself
2 weeks ago I could barely put my arms far enough behind me (not much past the backs of my hips) for my husband to get the arms of my clothes on. Now, with 3 daily physio spurts (which take less than 5 minutes each) I can get my arms behind me at a 45 degree angle or out horizontal. This means I can dress myself and have been doing so without assistance for about a week now. At first it was a juggling act but not it is so much easier. Socks are still tricky to get on but it is possible but I don't ask for help now.

Bathing
I am unfortunate in that I don't have a shower but wish I did. Getting out of a bath is tricky, needing to pull myself up to get out. I can't wash my back still and my husband has to do this for me. Now I am healed really well and risk of infection has pretty much passed, I will invest in some back scrubbing device that I can manage. I don't like the fact that they are sat around drying out after use and the bacteria that forms in such items worried me at first.



Drying Off
Hmm...at first it hurt to touch my body, especially around my armpits. My husband would wipe my skin down with a towel, much less aggravating than rubbing and the way they do it in hospital. I couldn't dry my bottom - very frustrating - I could actually only just reach (and with pain from stretching) wiping after the loo. That is not too much information for those considering the same surgery as me so for those of you who are reading and don't have to worry about such things, it's completely fine for me to say such things. It is one of the things I worried about - would my husband have to wipe me after using the loo? No, he didn't but I worried he would! All dignity would be lost in such a moment but he was prepared to do that for me because he loves me and we are married, exercising the vow 'in sickness and in health'.



Hair Washing
I was so desperate to get it washed that I found a way to do it when I wanted it done. I washed my own hair within the first week of being home. I filled the bathroom sink and could dunk my head in and use a plastic jug to pour water over and rinse. At first it was a massive effort and I hurt a lot after but it was worth it and all part of physio. Now I can sit in the bath and use the shower head off it to wash my hair as I can raise my arms above my head vertically with my elbow bent.




Sleeping
Oh dear. Sleeping. I have had one night of full sleep, 7 hours straight. I was so tired I slept quite literally like a log, without moving all night. I was numb and stiff. Naturally in your sleep you fidget and move around your bed. I couldn't and can't. This week has been better as I can slightly turn on my side for some light relief and it is a small thing - so small but it is huge for me. I have spent 3 weeks led like a log propped up on 2 overlapping pillows with a V pillow (nursing pillow) on top and another pillow for my head. My body could take 3 hours led like a log with pain killers taken at the point of laying down, waking as my body had had enough and my pain killers had worn off. I would wake up, plump my pillows as best I could and take some pills to find comfort enough to fall back to sleep. Now I take my painkillers before going to bed and when I wake up in the night, which is still once or twice, I just plump my pillows and go back to sleep..I've dropped the painkillers. My body seems to have adjusted though, I am not losing sleep at all, just having disturbed sleep every night because my body gets numb laying in one position. Of all the things I want to change, sleeping has to be number one. I cannot wait until I can sleep on my side, lie flat even, sleep on my front again. Sleep is key and I want it back.



Helping Myself
I can now reach the bowls and small plates in the wall cupboards in the kitchen. We have a small house with a small kitchen and so everything has pretty had to stay where it is. I am lucky that I have had my husband here to help me recover, without him things would have been very difficult indeed. He would have had to lay out all the things for my day that were too high to reach and then I could manage well enough until he got home.

Cooking
A week ago I tried to chop up an apple. The downforce required took almost all my effort and I just gave up. I would end up cutting myself or making a right hash of things so I decided to give it a week before attempting chopping again. Last night I challenged some carrots and an onion and won. I made a fantastic chilli which was greatly appreciated by my wonderful hubby who had been out for a sea kayak paddle with his mate JB. He needed a break from me and for his sanity - so I showed him I can cope now and that when he goes back to work he doesn't need to worry about me. It was good to eat my very own meal. It's been almost a month since I last cooked a meal. The microwave is broken too so no instant meals for us. More expense we can't afford. Maybe we don't really need a microwave at all. I might try to live without it. More space in the kitchen.

Painkillers
I was sent home with Paracetamol and Ibuprofen initially, which was just beyond me after I left the hospital that very day after taking Codeine and Morphine!! I had to call my Health Clinic and request Codeine and Movicol (morphine and lying in bed and not eating for 4 days messes up your system..and after 10 days I needed help to go to the loo!!). I was taking the combo of all three every 4 hours in week 1, then dropped some of the Codeine for night time only and day time when I was really feeling it. By week 3 I had stopped Codeine in the day and saved it for getting to sleep when my body was tired from the day and hurting. Week 3 is Paracetamol and Ibuprofen 3 times a day but next week I will try and take Ibuprofen only just for the fluid that is still on my back and in my body. As an anti-inflammatory I figure it is the best one to keep taking but it MUST be with food - it can cause stomach ulcers or bleeding alone, as can Diclofenic. Codeine is now only an occasional thing and only when needed. I don't take any painkillers during the night now but everyone's pain threshold is different and mine is fairly high.

Physio
Three times a day and less than 5 minutes - they are simply exercises that make a massive difference. Anyone too lazy to do these after surgery will pay for it with a much longer recovery. This is the leaflet I was given (.pdf) --> Breast Cancer Care - Physio

Round up of simple yet difficult tasks include:


Lifting and filling a kettle - life without tea? OMG!
Opening the pull ring tins - pulling anything is difficult still
Opening jars (done up with man strength) - this must be how elderly people see jars! Impossible to open!
Getting dressed - socks and pulling up fitting jeans are hardest still but arms were the impossible to start with.
Wiping my butt - Manageable now but I am a size 10/12 and reaching around is still hard work - it would be harder if not impossible if I was a bigger size)
Washing hair - arm reach is crucial and not getting scars wet.
Walking - yep, walking - week 1 and 2 at home wore me out. I ventured into town but after 30 minutes standing on my feet I was dragging my feet. Walking is something to do nearing week two.
Eating - Eating? Yep, having to lean forward towards a plate of food and lift a fork into my mouth..wobbly.

It's a different story now. Nearing 4 weeks on, my life is so much easier. My husband has fed me, collected many things for me, reached for things I couldn't, come to my aid many times, washed me, dressed me, massaged my scars twice a day with Bio-Oil, cleaned the house, done all the washing (and I produced lots in wear once to eliminate infection mode), fed the cats, done the food shopping, watered my plants - all with his own pain. He is amazing and he has suffered for me so that my own suffering was as minimal as possible.

Chris, my dearest husband. I love you. Thank you x

54. And the results are...(drum roll please)...

My breast tissue dissection and examination after full surgical removal was...



Clear - Normal - No pre-cancerous or cancerous cells detected.

It is official - I cut completely healthy organs from my body.

Hoorah!

Breast Cancer and I had a race and I ran so bloody fast it didn't touch me! I win!

When so many find out too late about their genetic destiny, their BRCA mutation. I made a choice when I found out, my choice was to eliminate my high risk and to undego preventative surgery in order to live a longer life. My breasts are made from other parts of me but they are still me and I can live with my scars comfortably.

I now have a 2% chance of breast cancer - NOT an 85% chance.

Surgery was worth it. My perseverence, my peristence, my determination..my survival instinct drove me onwards through fear and uncertainty and into the unknown.

I won the race against my high risk of breast cancer - I gambled my life on an operating theatre table against the odds of getting breast cancer.

My surgeon helped me prolong my life - he has restored a sense of normality for me, released me from anxiety, from fear, from worry. All that wondering before, fear of pain, fear of disfigurement, stuff deeply troubling me..I weighed it up and it was just so simple. Surgery.

My future has returned.

53. Where has the funny gone?

I'm all out. I thought I'd experience the misery path for a little while - didn't like it at all so I have battled through the brambles and thorny gorse bushes back to the positive outlook, happy path. Don't go down the misery route - it stinks big time!

It's hard, I prepared to be down some days but it's like walking a cliff edge all the time. If you slip you fall a long way down. I will stay further away from the edge now and try and tread the slopes of beautiful Devon and the cliff paths until I reach the beach of comfort and warm soft sand under my feet. I will close my eyes, raise my face to the sun and smile.

One day..maybe in a few months, maybe a year? I know it is out there, that feeling. I am tired of hurting, of being numb, of tingling, of stabbing pain, of lack of sleep. I am happy to be living with a 2% chance of breast cancer and not an 85% chance of breast cancer.

All the scars in the world are worth living without the fear - the anxiety. I don't care about scars - I can't see them anyway, they are on my back. I will wear vest tops again and people will look and wonder what happened to my body. I will let them wonder, they will be behind me and I will not see them. All that stuff will be behind me in more ways than one.

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).