70. Bra meltdown

So I am now a full time student at University. It's taking some getting used to but I am loving it so far, not a lot of work started yet but it's still intro stage I guess. Starting Uni and venturing back out into the world again after my surgery has thrown up a few problems, those which I hadn't really considered before.

I get a lift to the city outskirts with my husband and have been walking nearly 3 miles into Uni. I made sure I bought a comfy, extra padded backpack to carry my stuff but I am feeling the effects of my efforts. There has been muscle tightening and pain in my left breast, like everything is still pulling internal stitches. If I try to do anything too heavy going I suffer for days afterwards. I am calling my BCN today to see if I can see my surgeon and discuss any remedy for what I am feeling. Previous posts have mentioned my issues with my left breast and I guess I gave it enough time to settle down, but it hasn't. Even as I am typing this blog post 'leftie' is twinging in protest that I am writing about it in a negative light. It knows it is smaller or more spread out than rightie and has an image crisis.

I thought all was going so well, I was getting stronger, less incapacitated but it turns out, no..actually. I stupidly tried to push and pull a few uni doors and have grimaced at the effort required to do so. I can't be wandering through uni for the next 3 years as the woman who gurns when she opens doors!! The disabled button is welcomed!! Automatic doors in most buildings which is SO helpful.

The saddest of all the problems is that I realised how conscious I am of my dented nipple patches. I know they are going to sort them out but it scares me, I don't want them to be worse than they are now. I have been through so much already and I am worried about more deformity (although my husband still tells me I am as sexy as ever).

As I walked into uni the other morning, it was windy. I have only found one bra so far that kind of fits me okay but it is tight around my back and sides and I feel like I'm in a vice. I don't wear a bra and I love not having to but I have recently found some lovely fitting long sleeved tops but they show my dents through. I had an open shirt on this particular day with a tight top underneath but all the way in I was pulling it over my boobs to hide my dents. I was sad. I realised how much that still bothers me and I don't want people to stare or wonder what the hell is going on under my clothes!

To remedy the situation I went to the shops during a lecture break and hunted for a comfy bra. Eventually I just cried. I stood in front of the mirror in the fitting room and cried. I used to be a 36B but according to the bra measuring guide I am a 36A but I'm not. Not at all! I gathered different makes of 36Bs, 34Bs and 36As but all didn't fit. My new breasts are soft and the right one goes into a bra cup great but the left one doesn't. The surgery took a lot of tissue out from further up my chest but this hasn't been filled in by much. This means I don't fill the cup at the top. If I go smaller in cup size to compensate, the cups are too close together.

A 36B is comfortable around my body but the cup is too big, the top is empty and gaping.

A 36A is comfortable around my body but the cups are too close together and my boobs don't fit in them because they are quite a lot more fixed in position than my original boobs.

A 34B is tight around my body but the cups are in a better position and fit better.

What I need is a 35B I think but it does not exist. I had this discussion with my surgeon repeatedly, I almost begged him not to make me smaller as I would have bra trouble..and here we are, smaller and bra trouble. I am frustrated. Although I agreed I would rather not have implants I would like them if he couldn't make me the same size as before. He didn't use them even though they were on standby in the operating theatre.

Why does this matter to me? I will only get nipple reconstruction if I can wear a bra comfortably. If I can't wear a bra I will always have to dress in layers or thick clothing or wear stick on nipple pads to hide my permanently erect fake nipples! This whole dilemma frustrates me immensely and sometimes I get down with the amount of thought I give to this small problem, because in the grand scheme of things, it is a small problem. I need my nipple patches sorting out first and foremost, the dog ears make bra wearing uncomfortable too and they are going with the first tweak surgery. I won't go ahead with that until I have made up my mind about nipples because I want as little surgery done as possible and the tweaks can be done the same time as the surgery. I can't decide on nipples unless they can fix the pain and muscle spasm in my left boob. I can't wear a bra until the nipple patches are sorted and so I try and deal with my feelings, my self consciousness, my daily dressing dilemma.

It's getting colder so maybe I should just invest in some winter warming devices like these to cover up with?

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).

21. The link of hope - embryo screening and the BRCA+ reality

Warning!! Controversial blog post going on here. I have been a realist on this whole thing, this BRCA+ thing.

If you are here because you have just found out about your own BRCA+ condition then I hope this post won't frighten you too much but it also lists the things that BRCA+ person may have to consider. For those lucky enough to have had children before knowing about their gene mutation the news today is fantastic, it gives hope for your children and their choices if they too are BRCA+.

It took me years to go through all these stages, decisions, thoughts. I had to list them all. This news story has rocked my foundations. I was steady, heading down my chosen path with unwavering thoughts.. and then this big monster jumped out in front of me. What do I do..what do I do?!! Think, thats what..think. So I blogged and thought and this is the result. It may seem quite angry but this blog is part of my self therapy, helping me vent, helping me cope. I hope it is of some use to my readers too.

This morning's BBC News report came a couple of years too late for me. Some of you (like my parents) might think this news is fantastic. I have spent so long conditioning myself to the prospect of living without children that this news just sent me into a spin. I just have to remember that it wasn't possible for me when I was ready, when I wanted a family - neither was my life ready.

Here's the BBC News link http://news.bbc.co.uk/1/hi/health/7792318.stm

I've spent a good chunk of today thinking about this. There have been times that I've welled up with tears, tried to talk to Chris, tried to understand why I feel so swung off kilter by it. So I put it into perspective:

The couple have screened their embryos because the FATHER is BRCA1+, not the mother. She is 27 years old and probably has the drive and desire to have babies. I did when I was 27..and years before that. The FATHER has the BRCA1 gene - what does this mean? It means that he doesn't have the same dilemmas faced by a woman with BRCA1. He doesn't have breasts and he doesn't have ovaries. Would he be having children if time was running out for him and he had the same life threatening risk and options which would take years to sort out? Can't be answered that one I'm afraid.

This is the black and white, consolidated reality in finding out about BRCA gene mutations :-

Got your Family history of breast cancer confirmed - investigate BRCA gene mutation..... ->

Age 30 - worried about family history. The NHS will not screen a woman until she is at least 30 years old. Hopefully things will change in the next few years as they learn more about genetic breast cancer. As they realise BRCA1 and BRCA2 can trigger cancer in much younger women, they may screen more women at a younger age. For me, I was 27 because I shouted loud but really it is not an option until you are 30 with a big family history. At 30 you have about 5 years of prime egg producing time left before things start to trail off towards menopause land. Stay calm - there are people out there who understand, who will talk and who have information for you. www.breastcancergenetics.co.uk is the site for information if you aren't getting any or can't find any and they run a helpline service open 24/7 365 days a year. Just pick up the phone and call them.

Age 32 - you are BRCA+. It takes 1-2 years to go through counselling in preparation for genetic testing results and to get DNA tested and results returned. Now you are 32 and you are BRCA+ but do you have a partner? Do you need to find one? How many years do you have to sort out the right man with so much else to worry about now that you have found out you are BRCA+? You need to think now..about you and what you want, how you are going to deal with this and what are you going to do next. There are options to consider:

A. Do you just want to investigate IVF and embryo screening programme? This will need counselling and probably a 1-2 year process to get to pregnancy if successful. Beyond children, you still have the gene and you still need to make decisions about your life.

B. Do you put faith into action and just go for raw baby making? There's a 50/50 chance of passing on the gene to the baby, whether boy or girl. The screening option will give your children options in the future if they are BRCA+.

C. Do you want surgery to remove your breasts and remove your breast cancer risk? If you want breast removal surgery it will take about 1 year to go through various counselling sessions to make sure that you are able to deal with this. For me its taken 2 years to get through the NHS system to the point of surgery date from the initial counselling after deciding to get tested for BRCA1.

D. Do you want surgery to remove your ovaries, go into menopause early and not have children? I was counselled heavily on this as it is a major decision. It is something I spent many years thinking about before I knew my my results. This is not to be taken lightly and you need to search the very bottom of your soul to decide this.

E. Do you ignore everything and just carry on with your life. Some people choose this but those people aren't here reading this and they wouldn't have taken the genetic test in the first place so E really isn't an option.

I hope that my BRCA+ sisters (and brothers) out there can push the awareness of this condition out there. It is not some random rare condition - it can be bred, increased - it needs to be faced head on. The impact on the NHS and people needing screening could increase as more people investigate their family history and demand testing. What if they do? The NHS need funding to support this cause.

I have decided to research as many personal BRCA+ blogs as possible and gather them together in one place. Sharing mine and others' stories will give those seeking support and information something extra, personal stuff that can't be handed out in a leaflet. This is a very personal condition, its not black and white at all. It involves many choices and can feel like someone put the fast forward button on your life. There are so many facets to consider and for some it will be overwhelming. I found the loneliness of my situation and worries quite hard and there was no-one out there to share it with or to learn from. I had to hunt long and hard to find people to share this with and it is only now at the point where I have made all my decisions that I have found them.

Thank you for Facebook and the opportunity it has given me to touch base with others who have BRCA+ gene mutations. I have made friends with some fantastic ladies. Together we will support each other. We are the foundations of the support system that is currently so disjointed in the NHS today. The next generation will benefit from the choices made by the women who face this today. We are the seeds.

I choose life.
I will not be broken.
I'm rock 'ard me.

I am here now, living, choosing and I am not going to die of breast or ovarian cancer, not if I can help it!

Not on your nelly.

Ok...blog rant over...and out.