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

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. So..how do they make them? I can only find the procedure below on the net but then there are prosthetics too ..is 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.

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.

36. MRI Breast Screening - Surveillance for BRCA

Following my recent discovery of the lack of funding and availability for MRI breast screening for women with a high risk breast cancer, I decided to start investigating MRI breast screening..so I wrote to the Health Secretary, Alan Johnson.

"Dear Alan Johnson

I am 35 and have a family history of breast cancer and subsequently diagnosed with the breast and ovarian cancer gene BRCA1. In March I will undergo surgery to remove my healthy breast tissue in order to reduce my risk of cancer from 85% to 1%. This is a huge decision and will effect the rest of my life but it the only one I feel is sensible given the alternative.

The alternative is Mammography - proven to be very ineffective for women under 50 and with the gene mutation I carry, could trigger the very cancer it looks for! I recently spoke to the NHS Breast Screening Programme who stated that an MRI breast screening pilot scheme is being rolled out across the UK this year (2009) to women with a high risk of breast cancer but that it is only available for women over the age of 40.

My Aunt died at 27, my cousin had a double mastectomy at 33 and I am 35. It is known that BRCA1/BRCA2 gene increases the chance of cancer at a much younger age - generally under 50.

I would like clarification on this pilot scheme and hope that I have been misinformed on the age limit. The Government's strategy is to increase cancer detection services and the many BRCA+ women I am in contact with feel they are faced with little choice other than to remove their healthy breasts because there is no MRI funding for them to undergo surveillance instead. This is just one facet of the gene mutation - another is the lack of ovarian cancer screening and whether to have children or not, or HOW to have children.

I would appreciate clear response on this matter.

In Canada it is standard practice for MRI screening surveillance and MRI screening before breast surgery to ensure effective surgery is planned.

Will I have to continue to undergo Mammography x-ray and take the trigger risk and the ineffective results?

We need change - we account for 5% of breast cancer patients and therefore it is a small funding factor. It would make the very difficult decision to remove your breasts less of an option if reliable annual MRI screening was available to women diagnosed BRCA+ from the age of 25.

To summarise:

Q. Is the MRI breast screening pilot scheme for high risk women available to ALL BRCA+ women or just those over the age of 40?

Q. If not, WHEN will it be available to ALL BRCA+ women from 25?"

I will keep this subject posted when I receive a reply. I may need to campaign on this matter - even though it is too late for me to choose MRI surveillance, with my surgery booked for March and currently it is not offered by the NHS.

Watch this space!!!

PS - Further information I discovered - The Government have plans to implement the changes made to the NICE Familial Breast Cancer document (see link below) updated October 2006 "3.26 Currently the surveillance of all women identified as being at high risk is managed at a local level to varying protocols. The NHSBSP offers the opportunity to manage such surveillance to national standards, ensuring women receive a consistent and high quality service. The NHSBSP will take on this surveillance, which CHAPTER 3: DIAGNOSING CANCER EARLIER 47 will include access to MRI scanning as stated in the NICE partial update of the Familial Breast Cancer Guideline (October 2006). It is expected that this new system will be in place from 2009."

Click here for for information about breast screening women under 50 (PDF)

Click here for NICE Familial Breast Cancer - screening information

Click here for Department of Health Cancer Reform Strategy (exerpted above) stating the MRI screening plans

34. The future is firmer

I woke early and put on my gorgeous new red cord coat (I love it!!) and teal scarf..all positive and vibrant. I had clothes on too by the way - in case you were wondering for a moment there. I arrived at the doctors surgery at 8.30am ready for my 8.40am appointment..which was actually meant to be 8.20am!! WHAT?! Bugger..I even wrote it on my calendar straight after booking it - 8.40am. I even checked this when I came home. Anway..the receptionist said not to worry because the lady behind me had now gone in early so it was fine..but I did worry, I must have screwed up the whole day for my poor doctor. Arse.

I apologised to him profusely - Christmas and New Year had gone between booking and arriving and I was all over the shop during that time. It helps that he is an young, attractive man because otherwise I would be a bit fed up with myself for being late when I thought I was early. Instead I enjoyed the view and chatted openly about what was coming up and my dismay at finding out that my mother has slipped through the BRCA+ care net. She is only getting screened every 3 years and hasn't talked to anyone since finding out about her own DNA results. They have just left her behind. I am livid and I tell Dr Harris about this. He gave me copies of my letters to send to her doctor and get her back into some good care routine. I am gobsmacked that mum is left to fight her way back into the system!

When I've expressed my concerns about that, we talk about the letter he'd received from my breast surgeon, Mr Drabble about my 're-referral'. This means that I can now actually book the pencilled in date planned for 30th March 2009 for my surgery which was previously outside of the 13 week deadline the government have set for the NHS. C R A Z Y ! ! !

I guess most people just get sick and get dealt with. For people like me, who have a genetic condition and need to plan to have surgery..everything is delayed and nothing is solid or in place until 13 weeks before. Basically, I stressed how much I hate hospitals to my surgeon, told him I would rather have it done when I know my husband will be around to look after me while I convalesce. With his being a teacher, he has little time off and can only get 3 days to look after me...when I need at least 2-3 weeks immediately after. So we are 'planning' to have my surgery done around easter school holidays when Chris will be home. This meant that in October, March was too far away and was outside of the 13 week deadline!! So..(take a deep breath)...they write a letter to my doctor telling him to write to me to get me to book an appointment with them so that I can go back to Dr Drabble and book my surgery date in....!!! How stupid is that?

Dr Harris shared my opinion..but all said and done, he was onboard with the plan which is a result quite frankly. The NHS normally deal with people who are sick..not deal with people who will probably get sick eventually and need major surgery to prevent them doing so. Its strange, but because I am not sick, I feel like I am inconveniencing everyone around me and its planning it to fit in with them and not just for me. If I was poorly with cancer, everyone would just reach out and deal with it but this is planned surgery - not the norm. The NHS doesn't allow for people like me in their rules and regulations but the wonderful staff are bending them to accommodate me. That is lovely.

Oh...AND we talked about fertility and the recent news report. He looked a little edgy about it, telling me it was fairly new but that it was definately something to look into. He had referred me to Dr Attacheny (or something like that) who is the guy I spoke to over Christmas. Lovely on the phone and I am quite excited about meeting him in the flesh. I liked Dr Frappel but he was clinical (lol) and his secretary kinda sucked at her job!!

Ok..epic writeup over. Back with some more soon..keep you posted x