Saturday, 23 May 2009

62. My Race for Life


It's here..tomorrow..Race for Life fundraising 5k for Cancer Research UK. I've raised over £600 so far. Tomorrow will be hard last time it reduced me to tears seeing all those women doing something in memory of people who have died horrible deaths from cancer. This time I am not alone - there will be 10 of us with a long list of In Memory Ofs pinned to our backs. As a group I hope we raise some awareness about hereditary cancer and about BRCA Umbrella the support and social network I set up back in February.

I am excited to finally meet with Lisa, Susanne, Flo, Rian, Michelle and Elaine. I am proud of what we are doing and that I am not alone. I feel better for knowing that I shared my journey through all these hard, life altering decisions about surgery, feelings and life with these women. (Karen, Rhonda, Karen and Amy - I wish you were joining us!! xx)

So, to double check my packing, get some fuel, start my journey to Birmingham.

It's going to be a long day. I have to drive 4 hours in total and tomorrow I have to do my Race for Life..9 weeks post surgery. Whew!

Thank you to everyone who has sponsored me, your messages, your kindness. Thank you for caring about me and about my cause.

Time to go..time to leave :D

Wednesday, 20 May 2009

61. Nip 'n' tuck 'n' physio

10 days have passed since my last blog post. I haven't heard from anyone about the results of my blood test so I must ask my GP tomorrow. I am getting fed up with not having a purpose in life. I have some goals to aim for but I have no routine and feel like I am in limbo waiting for Uni to start in September. Getting made redundant, being skint, struggling to pay the mortgage, surgery, decisions and mental wellbeing have taken their toll. I feel fed up and frustrated. I was just getting used to my body, its pain, restrictions etc and then I get talked to about nipples and more surgery.

I've not seen any photos of just nipples, I don't even know what procedure my surgeon has planned for me and I feel, again, that I have no choice in what will be done to my body. Getting nipples is not important for me at the moment, what I want done is the dented nipple patches (skin from my back) cut around the perimeter and left to reheal - flat. Imagine a jelly with a circle of card on the top - press it down and the result will be a rounded edge on the outside with a flat circle in the middle. That is how some areas of the my new boobs look. One area in particular has an overlap and I have to clean this with a cotton bud. These need sorting out and my surgeon agrees. do they make them? I can only find the procedure below on the net but then there are prosthetics too this seriously an option? I would like to 'try' some first. I think I want my scars to settle before I get nipples. I am also thinking about my future paddling and rub syndrome. With no feeling could they rub to nothing and I bleed to death slowly without knowing?

There are also the 'dog ears' on my back which are the ends of my scars near my waist. Due to the eye shapes of skin being taken from my back, then pulled together and stitched, skin gathers at the ends and protrudes. Its a bit like wrapping a round gift at Christmas - my body is not flat either and straight lines and bodies don't work. So these will go too.

The last thing that can be done at this stage is nipples. I just don't know how I feel about them. I don't want repeated surgery and so feel a little pressured by time to get them done. I quite like not having to wear a bra - not that I could right now and I am wondering if I could just wait until much later to get them done. I'd like to get all the painful stuff out of the way.

On Monday I went to Derriford for my first physio appointment. Lisa (the physio) was impressed with my scars but said I am a little stuck down in the middle. She said it almost feels like the skin and scars have fused on my ribs and that they must be massaged daily to free them. This tightness will not help my movement. The good news is my mobility is between 80-90% which is excellent considering what I have had done. She compared me to a single mastectomy lady who had problems after 6 months and even radiotherapy was less restricting than my surgery. Effectively the latissimus dorsi muscles have been wrapped over things under my arms and some of my tendons have shortened. I have some exercises to do and some press ups at angles to increase my pressing/pushing strength which is weak without the key muscles to do that (being my lats).

All was well and I left after making an appointment to see her again on 3rd June before my booked nip and tuck surgery. I then went to another department to make the pre-op appointment for the same day. On returning to the car some very kind person had parked six inches from my car on an unnecessary angle facing me with the difficult task of trying to get in the bloody thing. A man offered to get in the passenger side and get the car out for me after I briefly explained my lack of twistiness. I declined his kind offer and squeezed painfully into my car and sat and wrote note to the badly parked car owner and stuck it on their screen before I drove away. "Next time try and park your car straight with maybe enough room for both you and I to get in and out of our cars sensibly. Those of us recovering from major surgery do not see squeezing down a 6 inch gap to get into their car as a pleasurable experience! Thanks"

Annoyed I drove home, feeling a sore and tired. Then I opened an NHS letter. They moved my surgery forward a week. Again? My husband has just got time out of work to pick me up and I just made those other appointments. I guess I have to undo them and I have even less time to think about nipples.

Just over 2 years from now it will ALL be over. After my 400 mile paddle I will have my ovaries out and be done with all this crap. I am sick of being in an out of hospital and being nudged about the appointment system. I want my life back.

Friday, 8 May 2009

60. Boob flash count today = 4! 2 expected, 1 unexpected and 1 surprise!

As they happened, here are the memorable things that happened today surrounding my check up appointment:

1. I DROVE MY CAR! For the first time in 2 months, I drove my car to the hospital. Yay!! It was that or catch a couple of buses with my trusty stolen NHS pillow in tow or get a pricey taxi. So I thought it was about time I tried to drive again. My range of movement is sufficient to let me do it safely and the seatbelt doesn't hurt my chest now as t did as a passenger. It was fun at first, I was free from the house again, to travel about but then I had to park in a tight space and getting out was a bit tricky with my lack of body twistiness.

2. I met a man who had a boob reduction. Yep, whilst sat in the waiting room a man came in looking nervous, I smiled at him and he sat one chair away. It was busy in there and I could feel some eyes on me and almost their thoughts.."she's young".."I wonder what the problem is"..then the man arrived and I felt less like the odd one out. Most women were well over 50 years old and with their husbands. It was when the waiting room was quieter that I got up and grabbed a couple of magazines, giving one to the man, an ice breaker. I was interested to know if he was a male breast cancer statistic or not. We started talking after I asked him if he was one of the rare men who got breast cancer. He said that after he'd got leukaemia he had grown breasts from the drugs and hormone treatments. He'd got fed up with people staring at him and decided to get it sorted out but he'd been coming for fluid draining since his operation for 12 months. It wouldn't go away. I talked about my drains and the fluid I'd had on my back and he was amazed at my surgery description too. We shared the same surgeon. As I was called through (an hour late) I touched his arm and wished him the best, hoping he would heal this time.

In the treatment room I stripped to my waist as usual, donned the amazing little cape that makes me laugh everytime and scratches my neck with the crumpled velcro. Eric came through with a sidekick doctor (a trainee I think). He went to shake my hand and I told him I needed to hug him instead. He hugged me back, nicely, not awkwardly. It was a real bond thing. This man changed my life. I shook the ladies hand but for a moment I think she thought I would hug her too. She smiled at me. Eric asked to see how my boobs were doing so I performed flash no. 1 to two people. I was expecting a two person flash today so I was ready.

They were both impressed with how my new boobs looked. Eric explained that I was all natural, no implants used and reconstruction was made using the latissimus dorsi muscles in my back (cue model spin to demonstrate back scars). I thought her eyes might pop out of her head in amazement. Eric was glowing about the results. I felt so much better for seeing him again. I felt pleased too and realised how much I liked them, despite my anxieties about body image creeping in. I listed my issues:

Hairy Boob - skin/body shock, testosterone - blood test to check levels, should fade with time and go back to normal.

Dog Ears - they can be snipped off and sorted at nipple creation stage. No worries. Hoorah!!

Overlap in nipple patch - not likely to flatten out, maybe both sides will need tweaking - can be done at nipple creation stage. No worries.

Different shapes - Left problem child boob can be tweaked after 12 months to make sure that it won't settle first. He agreed that the muscle placement was a little lower on the left and it was a simple tweak that can be done. No worries.

Over the phone, my BCN kept telling me that things would flatten, go down etc but I was right - I need some minor tweaking with a knife. Not worried at all about that. In fact, quite pleased that it was so easy to ask for. Phew!! As I got dressed they left the room I heard the sidekick doctor go, "That's AMAAAZING!". She must've liked my new boobs too.

3. I had my photo taken! One unexpected boob flash. Eric was so pleased with his work and my progress he wanted to have some pictures taken. He knows I'm not shy about all this stuff now and said he wanted to use the photos and have them published. I will ask him more about this another time. It felt great actually, like I am his model for promoting his surgical prowess. It made me feel like all the tweaks that will be done, the nipples I get will be done with pride.

4. Got my blood tested. I found my way to the Outpatients department for blood tests. Took a ticket and five minutes later I was in the chair chatting to the lady. She asked about my surgery so I explained about my gene and surgery. She was listening intently, fascinated so I asked if she wanted to see. She lifted my top at the back and gasped then I showed her my boobs = One surprise boob flash! She was amazed. I told her that if you get breast cancer you can have this kind of fantastic surgery done straight away now instead of mastectomy and then revisiting. Lots of women don't know that. She was gobsmacked. The other blood taking lady came back in and knew she'd missed something. I told them it would give them something to talk about for a while :D

5. I bought some strawberry plants. Retail therapy at the garden centre. Much needed but I torture myself by falling in love with a plant and then not being able to walk away without a severe feeling of disappointment. Today, in light of the sold surfboard, I indulged in a plant I fell in love with. Gorgeous! Now time to got planting..carefully. Gardening gloves and cup of tea at the ready! I'm off to the shed :D

59. Time for a check up..another flash episode

I've lost count with how many times I've had my boobs inspected now. Today I will go to see my surgeon and breast care nurse who will rate the progress of my new boobs.

As a woman I have a few little things I would like sorted out, after all I am a healthy, young woman with a figure and lost a great set of boobs to all this and I would like some reasonably nice ones to keep in exchange. Sometimes I feel like I am being picky but actually, I have decided that it is MY body and I want it to look good. I have already dealt with the loss of a cup size and I didn't have much to give away in the first place so the least they can do is snip off my dog ears (the ends of the scars on my back near my waist that stick out) and nip and restitch the muscle in my left boob which is not the same shape or hanging the same as the right one. This will cause me problems with ever wearing a bra again as they are at different levels and the underwired bras, the pretty ones that can also give you some extra if you want it, will hurt me. I have a long way to go before I get to wear a bra again but I am planning for the future. I have a school prom to attend with my husband next month and I have to wear a dress without revealing my still kinda scary looking scars on my back, my sticking out dog ears and actually fitting a dress cup. The problem I face now is I used to be an all round 12 and not my upper body is a 10 and my lower is 12. I have come a pear shape and I hate that. That is the thing I am struggling with. My body used to be balanced, equal, in proportion and now I am bottom heavy. I can't explain how upset this makes me, even as I write this I well up. I didn't really appreciate how beautiful my body was before, how perfectly designed, how balanced it was. Now I have a distorted view of myself and I know I will get over it with time but right now, I struggle.

So, I will update my blog later after my appointment. Right now I have so much to write about but trying to stay off the internet to let my brain rest. I think I will do some retail therapy at the garden centre and cheer myself up on the way back, pick up some new bird food to feed my hungry couples who increasingly frequent my bird tables and in turn they will bring their new families to my garden..and hopefully return as adults in the hard winter months. Right now though..spring has well and truly sprung.