67. Light at the end of the boob tunnel

The boob tunnel? Light? Yes..yeah. Today I saw the end. I don't want any complications thank you, just straight forward tidying up surgery, just like I've ordered. I am stoked as surfers would say, stoked. It's been almost 4 months since my breast reconstruction surgery and things have settled down really well, fantastic actually. I made a decision to just take things a little slower and not to rush the nipple building quest.

So I battled the hoards of visitors for a parking space at the hospital today. The outpatient department was heaving..not like the Primrose Breast Clinic I usually attend. I suddenly felt like one of the many. It was odd. Every time I went to Primrose I felt my situation was more serious but now, sat with all these people with a variety of health or physical problems, I felt quite normal. How refreshing!

I wondered what they were all here for. The lady sat in front of me was elderly and frail, the lady next to me had a boisterous baby and the couple next to me were concerned about running late. I waited only 5 minutes before being called by Sister. She was quite a cold woman, no eye contact and left me with a gown in a room and I felt my heart sink a little. Had I made a mistake being referred away from the Breast Care Clinic? I'd asked to be referred to Plastics team to look at the tidy up work, nipples, dog ears (the ends of my scars) etc. My Breast Surgeon is a very busy man, he has reconstruction and cancer patients to deal with. I'd had my appointments with him shifted around so many times and waited hours to see him only to have only minutes of his time, I felt like he wasn't listening to what I wanted, my concerns, my views on how my body was behaving, changing, how I felt. I felt like I was being railroaded into having the nipples that my Breast Surgeon does and that I didn't have much choice in what they would look like. That bothered me a lot. I spoke up and I waited for a referral. I feel quite guilty for taking away my Breast Surgeon unfinished work and taking it to someone else to complete. As a creative person, I would be bothered by that. It's like baking a cake and letting someone else put the icing and cherry on the top!

Minutes later I was in my gown, marvelling at it's pattern. Anyone noticed that the NHS gowns are covered in multicoloured words: 'Hospital Property'. What? What would possess anyone to steal one of those gaping at the back gowns? It made me laugh and I also had a quiet snigger to myself when the Sister explained that I must put it on with the split at the front because the surgeon would be inspecting my chest area. Really? Well I never! ?? Sister left and a cheerful nurse came in and was surprised to see me. She complained that Sister often interfered with her patient list and she should just keep busy elsewhere. We laughed. She explained that the Plastic Surgeon (PS) would be in shortly. And she was right. He was a relaxed, comfortable man and I immediately felt happy. He studied my notes, chit chatted with me, made some jokes and then we got down to the business of boob fixing discussion.

(Boob Flash count..3 more today. I must get a total together.)

We talked about nipples first, he talked about creating new ones with the existing skin, grafts or prosthetics. I questioned him about taking moulds of my nipples before my surgery so that a replica of my old faithful nipples would be made instead of creating something different. He was impressed at the idea and saddened that it had not been thought about. He would try and get that in place so that all patients who are seen for preventative mastectomies get the mould option. I told him I was happy with creating new nipples from my nipple patch and he proceeded to draw on me a bit like the image below but with less triangular ends.



Before, I had been offered a semicircular cut and a twist to create a button of a nipple. These go flat again quite quickly and I wasn't keen on this option at all. This option is longer lasting and more realistic. My nipple patch is about 5cm across which is bigger than the areola area of my old nipples. This makes my new boobs feel a lot smaller because of the large pink scar rings that are currently there. I asked if they could be made smaller and the PS agreed and said it could be done but they may end up being more oval. He can make a new circular cut and bring the outside edge in to meet it. I think I will see how things fade in the next 6 months to whether we try to make them smaller or not. I guess I was worried about having a big scar ring around the outside of my new nipples. Would they look like targets? Hmm..anyway..I have some deep indentations at the bottom of each nipple patch where one edge has healed inside the other creating a lip. These need sorting out and will be done at the same time as nipple creation and dog ear tidy up.

Levelling Left Boob. My left boob is not as defined as the right, there is more muscle and fat under my left arm and side than the right. They hoped it was just swelling but it's not. This means that the 'contents' of my new left boob were more spread out than my right. I guess I have a little less volume in that one and it doesn't hang the same as the right one. It has always seemed to me that the internal tissue was stitched too far down my body and stopped the hang crease appearing. PS is going to go in through the nipple patch and reposition some contents with some stitches at the bottom of the left boob at the front. This is good news as it means I might be able to wear a bra more comfortably.

Dog Ears? The ends of my back scars near my waist. On that subject he will cut an elongated oval to take out the extra tissue at the end of the scar and close it up again. This will make my scars longer but they will be fine and fade. I guess I will have two 10 inch scars on my back but hey, I have 2% risk of breast cancer and not 85% so who cares about my back scars?

So, there we go - all sorted. PS will speak to Breast Surgeon and discuss the way forward. He expressed that surgeons are used to completing their work but actually what is important is the patient and what they want, afterall it is their body and they have to live in it. He did say that Plastics were now working more closely with the Breast team to do the finishing work after the major stuff was done. This would give them more time to deal with the major stuff and Plastics could deal with the less time pressured stuff, the tidying up. I was happy to hear this and I am happy to have a talkative, considerate and funny PS to carry out the cherry topping surgery to my new boobs.

March 2010..yay! I feel like I can actually relax for the rest of the year now, get settled into uni and start moving forward with my life again. No more limbo. I am in control again, not my BRCA1 gene!

OVARY UPDATE! I had my UKFOCSS blood sample results CA125 test = normal range. I await my transvaginal ultrasound scan appointment of my ovaries. Phew!

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!

49. The dressings are OFF!

I have realised I use far too many exclamation marks!!! I am gonna try and give it up a little (if I can).

Not quite up to recalling my week in hospital but I will soon.

Today's update is that I had my dressings off. Everything looks clean and healing really well. I am so pleased. Voiced my concerns about the slight swelling around my left armpit and side of my breast which is where the muscle has been pulled forward under my armpit and into the breast skin. The right side looks amazing but the left will need a little more loving and softening to get it to 'relax'. I know it will take time but I am rather impatient but a realist too so I am not expecting perfection.

The pain of wounds and bruising has subsided immensely ovenight - weird! I am experiencing more middle back pain as I spend more time supporting my upper body sitting. My bottom is numb a lot from the amount of lying down and sitting I am doing but a quick get up and walk around is sorting that out. In saying that, having my arms hanging is quite painful in itself. My back is now compensating for the loss of the latissimus dorsi muscles and I will have to take it easy and do lots more physio. I think I will be ready to do some more advanced exercises in a few days. Things are so much easier today but the mammoth walk into the hospital and out again was slow and tiring. I was with my husband who is on forearm crutches and people would assume I was with him and not there for me. I became quite paranoid about being banged or knocked as people avoided the more obvious disablement of my hubby. The lift made me edgy - people jammed in and I sheilded my chest and thankfully had worn a nice puffy feather gilet which made me feel more protected from a knock.

My BCN (breast care nurse) is pleased with my results and said Mr Drabble has done a good job for me and it is all looking good but that I must take it easy.

Now that moments of comfort are appearing here and there it seems I can enjoy getting better.

I have had some days of sheer frustration, dropping things, can't pick them up, making my hubby bend down with his bad knees and help me. I thoroughly advise anyone who does the back muscle op to get one of those long reach grabbers for picking up small items that go to the floor - getting down there is hard work. My core muscles and glutimus maximus are getting a good workout I can tell you.

Anyway..all is good. 2 weeks of body torture are worth every moment I stop and remember that I don't feel the fear, the anxiety. It is totally priceless and drives you onwards, even when you think you can't get out of bed, or you can't sleep. The tiredness is the hard thing, it makes everything else so difficult but it seems to be fading now..just 11 days ago I was out of it..6 days ago I was in agony..today I feel good, twinging, aching, sore but good.

Today is a good day. And I got flowers from family and they are gorgeous. Never had so much nice post in my life, its like a prolonged birthday and it is so appreciated.

Something perks you up everyday. Surgery is hard - harder than I thought but the feeling is amazing and it makes accepting the body change so much easier. I have been given a life and I want to hug my consultant and everyone. I stopped a lady I recognised in the hospital who had only popped her head in once during my stay, I thanked her and told her I was doing well. She said I had got up and on my feet, coped and progressed so much quicker than most women they had seen. That made me feel good - I know I am doing well. I am so glad.

Whew...tired arms now..signing off.

BAck in the social scene again soon..at the moment, its all about me and I only have small time slots on the internet (hubby will kill me if I am on here too long: ) x)

48. Back Home...at last

Hooray!! I made it home..in one piece(?)..or several rearranged pieces anyway.

The sun is shining and my garden has blossomed with a beautiful week of sunshine. I can now enjoy my hard work and relax (??!! I 'will' know what this feels like again one day).

Thank you for your well wishes, your thoughts, I had a good operation and the results are brilliant! Some of the nurses said it was the best reconstruction work they had ever seen so that's reassuring. I think I am about the same size as before but it will take some time for things to settle.

I feel relieved though - not something I can explain here and now..I feel free of the worry. It is truly something I never thought I would feel and I have to sit and think about this some more.

Its good to be home but it is even better to be without my drains. I had 10 drains, 2 from under the breasts each side and 3 from the back where the latissimus dorsi muscle was taken out for the reconstruction. I don't want to detract from the gladness of being home but I am in pain. They sent me home with paracetamol and ibuprofen which often feels like a joke but they take the edge off enough to stop a lot of wincing. I can't lift anything, I can't dress myself, I can't get up in the night and put on a dressing gown..it is a nightmare. Having no arms sucks. The operation means the muscles from your back are tunnelled under your skin, under your armpits and the bruising and ache is hard work. My poor disabled hubby deals with his own pain and now he has to run around after me too. Nightmare..but it will get easier..it will.

It seems like such a mammoth journey to write down at the moment and so I will save the full detail write up for another day when I have the brain power (fuzzy does not begin to describe my memory, speech or concentration right now). My darling hubby has taken lots of photos to document the process, the healing, the changes that occur and I will post these privately on BRCA Umbrella when I can.

I have followed lots of blogs and seen lots of photos of other reconstruction work but not ever really found anyone who had the back muscle reconstruction work done. Most women seem to opt for the implants or TRAM Flap (tummy muscle) option. Everyone seems to say it is not that bad and the drains will be out and things will feel better but with the back muscle (see below image of Latissimus Dorsi muscle) and the site of the drains, you have to sleep and lay and rest on your wounds and drains.


I cannot tell you how uncomfortable it has been and still is. I am not pretending that it is easy. I got no rest without morphine, I constantly shifted my body through pain to ease the pressure on my drains in my back (long tubes under my skin attached to vacuumed bottoms to suck out the weep (sorry for the gross description but that is what they do). It was relentless and I am exhausted from lack of sleep and the pain. The drains, although everyone says that you just breathe in and the nurse tugs them out, were a nightmare to pull. I had 5 each side of me trailing off the bed and put my hands on them trying to lift my body to move and shift, tugging them. My back was so drum tight where so much skin was taken (a large eye shape each side) and the drains touched nerves and my skin was bruised and sore from lying on them all coiled under my skin. This was never going to be a pretend everything is cool site, the enormity of this operation is not to be underestimated..it is tougher than I imagined.

This has to be the hardest thing I have ever done in my life but everyday it should get easier. I am plateauing at the moment where my body is healing now I am more rested without all the nurses coming in and out, checking blood pressure, emptying my catheter, giving me pain relief, feeding me, offering water, seeing how I am, visitors, cleaners..it is relentless. Home is where you heal and rest - hospital is where they put you back together and give you a headstart, care for you at the very core.

I watched the amazing nurses of Primrose Ward, Derriford Hospital, Plymouth work flat out, juggle priorities as they constantly change, meet the demands of their patients, share a moment with me, hold my hand, wash my body, ignore the irritability, the tiredness, make me feel safe. I am humbled by the beautiful women they are, they work with their own disabilities like MS, joint problems, single mothers juggling family life, working shifts, being short staffed. They are paid nowhere near enough for what they do - they are amazing and they do an relentless and tiring job. I wonder how many people say thank you to them - tell them they are brilliant? I did, I made sure that I thanked everyone for tolerating me, for helping me, for caring for me, for sharing with me, for feeding me, for cleaning my room. I have shed tears at how stunning these people are, the ones that help people get well again. They have touched me deeply and my week in hospital, for all the pain was worth it to have my faith in humanity restored, to jolt my life back into perspective, to allow me to see the beauty in people again.

I felt like Neo in The Matrix.. I could see all the positive in the process, I feel blessed to have been given the opportunity to live a longer life - and I am ever grateful!

:)