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?

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

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.

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)

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

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

35. Friday blip out - thats blip not blimp!

Definately not a blimp out on my favourite foodstuffs - just a mental meltdown. It went all quiet on here for a wee while - been either busy, feeling ill or crying in the past 5 days. Hard work but a lot has happened.

Friday - emotion overload!! Tears, tears and more tears and talking for hours on end. First I spoke to the genetics counsellor after a merry-go-round of calls and getting lost in the new automated voice recognition answering service at Derriford Hospital - OMG!

NHS thingy "Say the name of the person or department you would like to speak to"

Me "Genetics Department"

NHS thingy "I heard 'Gavin Hartmen' - is that right?"

Me "No"

NHS thingy "Say the name of the person or department you would like to speak to"

Me "Genetics Department"

NHS thingy "I heard 'Gavin Hartmen' - is that right?"

Me "No you dumbass - operator"

NHS thingy "sorry, I did not understand, please repeat"

Me "That's because you are a machine goddamn it!!"

NHS thingy "sorry, I did not understand, please repeat or say Operator to be put through to the Operator"

Me "Operator"

Operator "Derriford Switchboard"

Me "Genetics Department please."

Genetics Department "This mailbox is full. Please try later."

Great!! A little internet research reveals that the genetics department number is wrong - even switchboard don't know it! Rubbish!! If I was a time waster I could have some mindless fun just screwing up the automation system for a laugh..

Me "Deafasa Post"

NHS thingy "I heard 'Deaf as a Post' is that right?"

Me "Yes you dumbass!!"

Blimey!!

I did finally speak to my genetics counsellor after speaking to the rudest woman at the MacMillan centre. I was just looking for information about MRIs and explained that I couldn't get hold of Genetics. I tried to explain to her that I just wanted to speak to someone because I didn't know who I should be speaking to. She repeatedly talked over me, non-stop and prevented me from explaining. I reluctantly bit my tongue and got of the phone by basically saying "W H A T E V E R !!" in a polite way, "Yep. Okay. Thanks (for nothing)." Honestly, she was crap! Definately in the wrong line of work. Good job I'm not phoning for emotional support about a dying family member about cancer, but then she wouldn't have known that would she..she didn't let me explain WHAT I was looking for!! Trout!

Upon finally having a sensible conversation with the genetics counsellor I covered a few questions that I had about my upcoming surgery and MRIs.

Q. Will I have an MRI scan before I have my surgery or after? Apparently neither!! I am due for my annual mammogram in the next month or so and I explained that I am feeling anxious that I am not having one. I also explained that if I am having major surgery, would it not make sense to screen me before the surgery in case they find that I am already harbouring breast cancer? She agreed but said that it probably wasn't scheduled and that there is no MRI screening options for breasts at present, although they are fighting to get this for at least people like me. She is going to write to the head radiographer and ask as I am particularly anxious and would like a clean bill of health in the breast department.

When stories like this are posted - its no wonder I am questioning. The news seems to be tracking my life story at the moment! Damn it!

http://uk.news.yahoo.com/5/20090128/twl-tests-pose-extra-cancer-risk-3fd0ae9.html

Q. This link connects to my next question - is there MRI screening for my mother - aged 55 who has BRCA1 (obviously) and is not having preventative breast surgery? I explained that my mum currently,although positive for BRCA1, had no screening programme other than mammogram once every 3 years and never spoken to anyone from the NHS about her gene mutation since finding out. On enquiring (after our chats) she had been told that she was too old (over 50) and that MRI breast screening had no funding so wasn't an option! This means mammogram only and the link above shows the catch 22 situation faced by BRCA+ women.

The genetics counsellor nurse is always calm - she is lovely, softly spoken and sure of her words. I felt better for venting my frustrations. She was very worried that my mother appears to have been left out of the BRCA care regime (if there is such a thing!) and we discussed the need for a standard information pack or phone numbers - although everyone is different, everyone needs to look at all the options - not some of them. It is this that has caused me to stall, go back ten paces, go forward again.

So it is all in hand - she is finding out about everything - my mum's care routine, MRI screening and arranging a date for my next counsel meeting with her to discuss embryo freezing/screening.

I cried a lot more that day - about other worries, out came the past box in my head and my heart and a lot of talking with hubby commenced that evening on our way to stay with friends in Southampton. I can only say that I looked less than appealing and more like a frog than my usual self upon arrival. I explained, just in case they thought I had come down with some awful lurgy or had a pepper spray incident with the police on the way there!!

The rest of the weekend was great - social, fun and then I felt ill..and then better and now back to normal. Back on track - I think!

Time to go and get some milk - before Chris gets back. It will be cuppa and hug time!

Hooray!