Tuesday, 24 February 2009

41. BRCA Support Group anyone?

Its been a couple of weeks since I last posted, believe me, it is not because of lack of things to post, just very busy dealing with the complications of what is my daily life right now and developing the BRCA Umbrella social and support network site for BRCA+ people like myself. My feet haven't really touched the ground since it was born whilst in the background my operation draws ever closer.

Today, I went to a support group session with other BRCA+ people at the Royal Devon & Exeter Hospital, Force Centre (not in any way connected with FORCE USA, just a coincidence of name). I met my first two ladies outside of my family with BRCA+ gene. We didn't chat in depth about ourselves but conveyed our struggle through the system to find information. Both ladies had already had breast cancer and then been diagnosed with their gene mutation but I am ahead in the race at the moment. Anne Searle is a genetic counsellor and conducted the group, gleaning information and experience from us about where the NHS BRCA support system could do with refining. I think that is probably an inadequate word 'refining'..more like to identify the missing gaps in the system - chasms sometimes.

So much in depth discussion happened during the session that I can only summarise that it showed the enormity of being BRCA+ and the multi faceted problem of living with such knowledge with the consequence of its power to effect the rest of your life, your maternal feelings, your health and your entire family across generations.

All ladies there today are facing their BRCA gene and its risks and the implications carried beyond ourselves, all concerned about the next generation, what to do, how to tell family, what surgery to I have, who to talk to..etc. We had all struggled to find our way into that room today but were very thankful to be listened to. Change is coming.

So, the BRCA gene mutation; a missile, an opportunity to blow the chances of breast and ovarian cancer risk out of the water but with so many bloody knobs and buttons to guide the damn thing to a destination of safety. Sometimes I feel like it might go off mid-flight. I don't want to pilot this thing all the time I would like someone else to please take over for a little while.

I wish I could forget - is there a time when I have been free of this thing? Probably but so long ago I can barely remember..oh, hang on..skipping through fields of wheat with my friends on a summers evening - days when I was free, when I was a child.

Sometimes I worry about my sanity, this BRCA thing is just a sliver of my life yet everything hangs on it at the moment but that will pass and life will continue. I just wish everything else wasn't so complicated at the same time. My poor husband came home today unhappier than I have every seen him. His job makes him so tired yet we need it to keep struggling on financially. Being partially disabled he is tired, worn out, mentally at a crossroads about work yet financially under pressure to be there, worried about his knees and the increasing pain he is in these days, looking after me when I need him, keeping our house, keeping things going and in the background the recurring worry about his son and his ex's selfish behaviour. It just feels like too much. We are both tired. I hate to think what this would be like if we had kids to look after too. Life feels very unstable at the moment, I am grateful to be free of worrying about my children too.

I wish I could change things for us, I am trying real hard. I just feel very helpless in my own personal life whilst my campaign in sharing my and other people's BRCA journey continues in positive great leaps and bounds. I hope that someone reading this who is struggling with their own diagnosis, I hope you reach out to others and share, isolation is very hard and life gets in the way of this thing you are trying to fight too. I have realised that my passion is in trying to make it less of a desert, more of a comfy sofa coffee morning place to find answers and share.

BRCA Umbrella - gather, shelter, weather the storm and on a sunny day - go for a walk back into your life and move on.

Tears today, lots of emotion, sadness for my husband and his struggles with everything.

And the clock is ticking..how many weeks now?

Wednesday, 11 February 2009

40. Operation Boob crunches into 4th gear!

Back at the hospital..again. On arrival the car parks were rammed again. I eventually found a space and faced an immense battle with the ticket machine. Being a bit rubbish at having money in my purse because a. I rarely need it and having it makes me buy small bars of chocolate that I don't need! and b. I am just a bit rubbish at being organised in car park change..aways have been. So, armed with a bag of 5ps..(who the hell passed the design on 5ps? they are MINUTE!!) I fed the hungry machine..46 of them..except it would only accept 24 until it ate and spat out the bad 5p and refused to take any more and spat all my money back out. Feeling the eyes and "oh no..she is using 5ps!!" thoughts of the people behind me, I offered for them to go ahead of me. Attempt #2. 21..22..23..24..25..bad 5p..clunk, clunk, clunk, clunk, clunk..x 20 more. If I'd have been on the pier or at a casino I'd have been happy but not in the hospital car park, now late for my appointment and stressed worrying I will get a ticket or clamped. They are building a lot on site and closing access around the grounds = parking nightmare.

So..I am parked as far away from the Primrose Breast Clinic as I can get, outside the maternity entrance - which is a sore poke in the eye from yesterdays appointment.

I make it 15 minutes late. The woman at the reception desk asked me lots of questions to make sure that I am me..including,"what ethnic group are you?".."....ummm....white?" like I might get it wrong. I guess it made me laugh because I am very obviously white, not tanned in any way and thought it was weird security question. Anyway, the second I get to the waiting room and before I sit down a nurse comes and calls me so I go in and meet my surgeon again. I told him off for not being there last week and he would now have to answer all my questions.

So, we covered:

Q. When does he get to eat lunch and pee?
A. After he stopped laughing, he said that he does the mastectomy bit first - removing the tissue and nipple from inside the breast skin and then goes for a cuppa and lunch, maybe. Then flip me over, take the muscle and fat flap and bring it round to the front to make my new boobs, maybe have another break..then complete!

Q. Will I be on a ward or in intensive care straight after my operation?
A. Apparently I am having a room to myself for a whole week with an en-suite bathroom. I was stoked! It is because I will be fairly immobile for the first few days and will need constant care from the nurses which can disturb other patients on the ward, especially in the night.

Q. How long before I can start exercising and stretching my body and arms to build up strength for paddling and kite flying?

A. From week 8, just gentle stretching but not to the point of pain, just to the start of uncomfortable. I have 1kg hand weights picked up for next to nothing in Tescos for such exercises! I should be able to paddle again and fly kites but probably not rock climb. The surgery will remove the whole latissimus dorsi muscle in the back and I will lack the strength to lift my body up..so chin lifts are out too...darn! (ha ha ha ha..)

Q. What pain killers will I be on after the operation and to take home with me?

A. Morphine on demand in hospital and paracetamol and diclofenac to bring home, maybe some opiate based painkillers such as Tramadol if necessary. I don't ever take painkillers, I have a good pain threshold and have never been a pill popper for headaches and period pain so I shouldn't need much.

Q. What if things go wrong after - necrosis, infection etc.
A. He says that once fixed breast reconstruction can be looked at by another method if necessary and wanted.

So, there we go..I feel better for knowing and another appointment is booked two weeks ahead of the operation, just for last minute chat, checks etc.

Ok..so commences the waiting game..the clock is ticking.

Tuesday, 10 February 2009

39. Pop goes the bubble..our hearts fall down

Yep..pop went the smallest of bubbles that contained a remote idea or maybe a hope that I could have children of my own..burst into nothingness. After my meeting with my genetics counsellor today my small glimpse at a potential family has pretty much had the curtains closed on it. The timings of my age, my breast surgery, Chris's 8 year old vasectomy, our inability to actually afford a child at the moment and the problems with freezing embryos all contribute to a very low success rate of actually having a baby in the future. I can't say that I am surprised but I had to look, just one last time before I closed the door on bearing a child of my own. Although I have the option to talk to the University College of London (UCL) to discuss Preimplantation Genetic Diagnosis (PGD) and our situation, I hold little hope for it to be a tangible option for us. So, its back to adoption if we want to in the future, which is always where I have seen my real motherhood role anyway.

My gut instinct was that I was not destined to have children of my own flesh and blood but I agonised over my desire when I was younger, with the wrong man at the wrong time in my life. Now I am with the right man it is the most impossible task ever.

Why drag myself through years more heartache, torment and emotional distress in trying to get to the point of pregnancy by IVF which may only have a 5% chance of success? Its not worth it, not even for the most perfect child in the world. There are so many children out there without loving parents in their lives and maybe one day we can offer a home to one. I have been through enough now.

So, I sat in Tescos car park and listened to a song that took my back some years - to 8th October 2002 when I didn't get in the van to go to the speedway meeting. The day the rest of my life continued whilst my fiances ended. Madonna released 'Die Another Day' that week and it spurred me into living. The words touched a deep nerve today as I sat in the car with the volume turned up - watching the seagulls in the blue sky and people struggling with their bags. In a few weeks..I won't be able to struggle with bags, or much else for a while but my life will go on and I am reminded that I can do good with it.

My life experience so far has made me tougher than I would like to be, more introvert than I would like to be, more anxious than I would like to be. So I choose to be useful, to do good, to help others.

Today I offered myself to help the local BRCA support group run by the hospital and it was welcomed.

I am glad for my life and at the end of the day, survival is key - I am still alive but I have a whole lot of life to fill up now.

I am sadder than I thought I would be but I will just get a hound one day, a loyal, loving, doting dog who I cherish and who I will probably outlive but that's okay.

Monday, 9 February 2009

38. BRCA Umbrella - Social Network for BRCA+ people

I stumbled on an excellent, user friendly social networking site, 'Ning' that allows you to set up your very own social network - so I did! I called it BRCA Umbrella so that everyone who finds it or is directed there can come and huddle under the umbrella.

The name..well, I love umbrellas. I have one with dragonflies on it, Mum gave it to me. I have shared umbrellas with people, random people, briefly..sheltering from bad weather, wind and snow. It's amazing how people will reach out to each other with an umbrella yet they wouldn't stop and let you get into their car if it was peeing it down would they? The phenomenon of umbrellas..complete strangers inviting you to share intimate space with them. If you haven't done it, try it..or if you are a BRCA+ lady (or man) and want to share the BRCA Umbrella..follow the link and register - it's free! You can blog, post photos, videos, links, chat, there's a forum and also a lot of fantastic, brave, inspirational and beautiful women to share and guide and hold your hand when you need it.

BRCA Umbrella - bringing BRCA+ people together

Friday, 6 February 2009

37. Bang, bang, bang my head..gently on my keyboard

Sometimes..just sometimes you have to wonder if you are actually meant to be here. I do, but just sometimes. It seems that everything I do at the moment conspires against me, in every way. I won't go into huge detail but the job centre are appallingly inefficient, unhelpful and rude. I know they are all under pressure with the amount of people now being out of work but honestly, they all have jobs and its also MY problem. I am currently trying to apply for a job set up just for me and they don't seem to want to let me become employed again! Joy!!

Another minor setback - Uni want to meet with me as they didn't get my qualification information on my application - even though we quadruple checked it before it went out to them. More joy! So I still don't now if I have a place or not.

And finally, to top the last week off I went to meet with my breast surgeon today to after being re-referred back into the system in order to plan my surgery within their 13 week deadlines.

I get there, pay £2.30 for parking and find out as I am checking in that the woman behind me is also seeing my Breast Surgeon at the ame time as me. I checked with her in the waiting room and she was confused too. It turns out that the surgeon isn't even in the hospital and won't be seeing either of us. He had a teaching day booked but no-one thought to tell us. So I was led into see another breast specialist and told to strip down to the waist..then my notes came out, then told that I didn't need to be examined at all and to pop my clothes back on again. Apparently no-one really knew why I was there, other than to make a firm appointment for my breast reconstuction surgery and there was no-one to talk to me about it. I tried not to feel disgusted but I was, I felt let down. I complained that I had driven into the city, paid to park and I wasn't leaving until I had spoken to someone about my operation, physical expectations and my after care plan. They left me sat in the room for 15 minutes alone waiting for them to make something happen.

On exiting the room the other surgeon asked me who my breast care nurse was.."You haven't assigned me one". The surgeon frowned worriedly and shared an "oh my god" moment with the two nurses waiting on his next move and flustered about in various directions trying to get someone to speak to me immediately.

So, I sat in the waiting room again..and waited. Thankfully a lovely nurse (now my breast care nurse) came out and took me into a side room and we briefly discussed how long I would be out of action with a kettle, a shopping trolley, a hoover and a car - likely 1 month no heavy lifting objects or objects above the waist and 2 months for normal daily tasks like kettle, hoovering etc but that was a minimum only. I didn't know this but they are going to take the whole of my latimus dorsi back muscles out..OMG! She told me to prepare myself for that and that physio might be needed, especially if I want to paddle my kayak again. She did say a lady they treated now rides horses again but does feel weaker than she used to.

I realised as we talked that I had so many questions and although I have had a disjointed and rather bumpy journey towards my breast reconstruction surgery so far, a lot of which I have had to push for myself, I am still grateful that I am able to do something about my BRCA1 situation. If you are following my blog and wondering about your own family history, my journey is not the norm, most people are steered through the shortcut route whilst I, like the very day I was born feet first with my umbilical cord wrapped around my neck, chose to go the difficult route. Do not be put off by my journey - just let my discoveries help you think about things you may not have thought about already.

So, to list some things for recollection on Wednesday (when I finally do get to meet my breast surgeon again). This is useful for me and anyone else waiting for their surgery too - I guess there are so many things that you do not think about and wish you had.

Q. Will I get to discuss what is going to happen to me when I get to hospital, my operation and stay in hospital?

Q. Will I have drains in my body after the operation?

Q. Will I need to sleep upright at home?

Q. What will I be able to do and not do and for how long?

Q. When will I be able to live normally again, without fear of tearing scars?

Q. How long will I have to take painkillers?

Q. When will I be able to drive again?

Q. Do I have to have someone empty my drains at home? Will that be my chosen carer (Chris) or visit my GP or what?

Q. What will I need to sleep in whilst in hospital? Especially having scars front and back at the same time - how will they clean my wounds?

Q. How long will I have a catheter after the op?

Q. Will the painkillers give me constipation as they are likely to be opiate based?

Q. If so, can I take other things to counterbalance the effects as exercise will be zilch and drugs will be daily?

Q. When will I be able to wear a bra again?

Q. Will I get an MRI scan before or after my operation?

Q. Will I be in an intensive care unit initially and for how long?

Q. Does the surgeon have a lunch break during my 8 hour operation?

Q. When does he go for a pee?

Q. When do the nurses go for lunch and a pee?

Q. Who will be keeping an eye on me whilst I am under anaesthetic and everyone is eating lunch?

Q. What support is there after my surgery for psychological support, if necessary?

So..that's all for now..I think I might just give them this list to answer. I need to know all these things, is that normal? I dunno.. I am giving my life to them, to the surgical team..and I need to know these things for me. Giving your car to the garage for an MOT, you don't question, but this is my body and my life.

My life..

Monday, 2 February 2009

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