Tuesday, 7 September 2010

81. Bouncy Ball Therapy


Unfortunately not a space hopper, just a regular gym ball :(

Finally I have a physio who really knows what is going on inside my body and has identified and recreated that tingling, numbing and insane stabbing pain I get in my elbows these days. Although she doesn't want to say the words "yes, this is a complication from your surgery", it is. She says the neck and back problems are from carrying my injury too long and sitting still too long. Obviously, the only reason I have been careful and taking it easy like everyone keeps drumming into me these past 18 months has been detrimental to my physical condition. I have been active, more active than most would like but have also had injuries from just doing things or overdoing things. Like carrying my laptop in my rucksack for 2 months, it screwed my neck. Moving a too-heavy-for-me bag of plaster finally tweaked it into lock up mode back in November 2009 but I think it was culmination of things and not just one injury, which is also the opinion of my physio.

Positive Recovery

So, this is a positive step, one towards a pain free world? Having a constant niggle in my neck is driving me nuts. It prevents me from doing so much stuff I could sit down and cry about it all but I can't, I just pop some painkillers and try and do my stretches and hope that it will fade over time.

Coping mechanism

I have a red bouncy gym ball that I use stretch out deep in my back. I have to stand in front of it with my wrists sideways on the ball and roll the ball up the wall, lifting my chest as I go. It may sound like bliss, and it is, for the relief that it gives me, but I now have to hassle my poor husband to massage my neck everyday. Over the day my neck muscles tense, more so because of the pain and so, if I don't manage it, I get sickening headaches and ludicrous tiredness. So boring.

Why do I hurt?

My physio says it is neurophysiological complication, trapped or restricted nerve movement through my neck and effecting my shoulders, elbows and hands. Problems with C1-C7 on the chart below, T1 and T2 problems seem to have relaxed now (middle back pain). She thinks the lack of movement has caused over-stiffness and naturally we will carry an injury but the last physio thought I might have a slipped disc so for the last 10 months I have been extra careful and made my situation worse. An MRI showed normal nerves thankfully but I still suffer and although my movement is better than back in November/December last year, I feels like it has just stalled now. I have good an bad days. Typing doesn't do me any favours at all and I suffer a lot after any reasonable typing session (like a blog post) and have to stretch out.

Neurophysiology: Hand and Elbow - Nerve Entrapment info

I hope this will finally sort things out, hydrotherapy in the pool with the hospital next week for a 6 week period of twice a week. Quite looking forward to it. I should stop there, my body is telling me to stop before I get all hunched up like Quasimodo on drugs again ;)

Thursday, 15 July 2010

80. Its been 16 months

Well where has the time gone? Its been hard work. I have been dreading writing this blog entry, I never wanted to be an anti-reconstruction surgery patient but the last 16 months have been harder than I was really warned they would be.

I guess I am one of the few who experience problems after my type of surgery. My surgeon assured me that I would be able to paddle a kayak again, fly a big kite, return to normal but that it would take 18 months to be fully fit again. Here I nearly am, 16 months and I ache every day of my life and need regular massage just to relief the tense locked up muscles in my neck, back and shoulders. I take painkillers everyday just to get through my day because trying to absorb the pain just tires me out. Today I had those old deep crippling spasms in my back and chest, like a crushing band, contracting and taking my breath away. Why? I have no idea, just out of the blue.

In the last 8 months since my suspected neck injury, I am still suffering. I've had MRIs and nerve testing, blood tests and the results are good, there is nothing wrong with my spine or my nerves, its all muscle. My body is still trying to compensate for the lack of Latissimus Dorsi muscles and my doctor thinks other muscles have built up more than they would have been and I have inflammation and spasms, tendon soreness. He's referred me back to the physio for treatment. It irks me that I asked about specialist physio right after my surgery but was told that I just had to do the exercises on the leaflet they give all breast surgery patients. The physio (that I had to request to see during my recovery) told me I had 90-95% movement again but could not help me further to strengthen my body. Back then my back was fresh without lats and not in daily use like now. Over time my back, neck and shoulders have been under extra pressure to perform differently. My shoulders crunch and click and ache, I get excruciating pain shooting down my arms through my elbow joints and cramping in my wrists. My neck muscles knot up and ache, giving me headaches. My body has adapted but its not comfortable at all. I just want to cry.

I always dreamed of writing here to tell my success story of reconstruction surgery but this is not the reality. My reality is that I a paid a price for reducing my breast cancer risk, not only did I give up my beautiful breasts but I have been advised by my doctor not to paddle or fly kites, which contradicts what my surgeon told me. I am trying not to feel bitter or go on an anti-LD Flap surgery rampage but I feel bloody close to it. I am angry right now. I am limited in the work I can do. Even typing gives me neck and shoulder ache. I am currently living on Employment Support Allowance and after being assessed by some doctor contracted by the government to work alongside the Department of Work and Pensions, assessed me as ZERO, in perfect working order. Her rubbish and inaccurate report of my physical condition has meant I am undergoing an Appeal, having to prove my limitations physically and if they don't support me, I have to pay back all the money they have been paying me since February, yet I am a student and I have no money or income, even my husband works prat-time because of medical conditions.

I feel so let down. Not sure what to do with my feelings right now and just don't want to talk to anyone, feeling very insular. I just feel frustrated and trapped by the damned system. If I was 100% fit I would be out there doing shelf stacking during my summer or working in a bar but seriously, those jobs are just not gonna work - bending, lifting, pulling, pushing. I am so frustrated by my body, which was fit and robust and beautiful and now it just isn't. I just need some time to sort myself out and I guess, see how physio goes. *sigh*

Saturday, 19 June 2010

79. Save our BRCA Support Group - BRCA Umbrella

I have a numb bottom and back ache. Been sat here all day long putting some serious legwork (more like brain and finger work) into raising funds to help save our precious online BRCA Support Group, BRCA Umbrella. Ning are closing the free 5000 member option with their social network and forcing a monthly fee on us. We can reduce to 150 members and far less function for the network for free but this is not an option. There are over 650 Members.

What is BRCA Umbrella? An online support group and community for those discovering and dealing with their hereditary cancer risk. I posted this to our BRCA Umbrella Facebook Page and Group:

"Save BRCA Umbrella now. Donate less than a cup of coffee or bar of chocolate. Its safe, secure, its via PayPal. Go without one treat to help our members who face their genetic lifetime risk of cancer (upto 85% risk). We are 1 in 1000 and we need each other. Few and far between but forced to seek sanctity in a place where others know just what its like to face difficult life choices about coping, having a family, breast and ovary removal, screening etc. Our future is in your hands. Donate now. Want to sponsor us? Contact us for more details."

I have been contacting potential clients to advertise with us to help generate revenue whilst offering our Members relevant ad links to companies offering services or products they need, such as Mastectomy Bra or Lingerie Companies in the first email wave.

Help promote my fundraising cause by copying the widget pasting this widget into your own blog or website.

Sponsor us through advertising. If you have Cancer related services, products etc, you can advertise here or through BRCA Umbrella.


This blog site has had over 6,500 hits in 15 months. That's over 440 hits a day.

BRCA Umbrella has had almost 30,000 visits, 186,910 Page Views and an average of 6.5 Page Views per visit. BRCA Umbrella visitor stats average at 1,875 visits per month, 61 visits per day.

So, a lot of activity and therefore a thriving network, an alive network of people needing each other and so, in order to keep that place safe, I ask for donations from you. Just give up one small treat, a bar of chocolate or cup of coffee and donate now.

DONATE NOW! Visit the Chip In page to find our more and DONATE NOW!! Visit BRCA Umbrella Donation Page

Thursday, 29 April 2010

78. Breast Cancer Care Family History Forum UK


It was a bit lastminute.com but I made it to London (UK) to the first Breast Cancer Care Family History Forum. It was so good to finally meet two of BRCA Umbrella's Administrators, Jennifer and Caroline (who escaped this photo unfortunately), and to catch up with Lisa, Elaine and Rian from last years Race for Life weekender. It was good to meet some new faces and sad to see so many women with this damned gene mutation.

It was was a very well structured day that started with human bingo as the icebreaker, an intro from the Breast Cancer Care team and then a much needed tea, coffee and biscuit break. The day's highlights for me were the break out groups, with me in the preventative surgery and gene mutation identified group. The first session was an hour of just general chat amongst ourselves, sharing experience and questioning each other about things. The second session was recorded and guided by a facilitator so we didn't veer horribly off track. She asked key questions:

What support needs do you feel are missing from the NHS?
What do you feel was missing from your surgery care by the NHS?
What would you like to see developed as a support system for BRCA community?

We talked of many things, like;

- being asked for moulds of our nipples for prosthetics before they get incinerated forever.
- being put in touch with some form of support group long before surgery is decided.
- having an MRI following a positive diagnosis for BRCA1 or BRCA2 or identified as High Risk.
- having the right to see any breast reconstruction surgeon anywhere in the country instead of being channelled into just what procedure your local surgeon does
- having regular face to face BRCA support groups to meet and discuss all these things and more with real, live people.

There was a great talk about Genetics by a specialist and she answered as many questions as we could fire at her. I think this highlighted the need for a proper forum to discuss these things with professionals rather than scaring ourselves witless with things from the internet!

All in all..it was brilliant. 50% of the attendance were BRCA Umbrella members and we wore our badges with pride, we found a way of supporting each other in the absence of such support, we made BRCA Umbrella the support community it is and it is time to step it up a gear! Watch this space!

Thursday, 22 April 2010

77. Out of touch

I went awol for a bit there. Sorry folks. Nothing BRCA related, well, not really apart from the abnormal CA125 (ovary screening blood test)that came back and I had to retest. It is the first time I have really worried about my ovaries. With no evidence of ovarian cancer in my family history (even with the BRCA1 gene risk factor of 40-60% lifetime risk) I sit on my laurels about Ovarian Cancer and maybe I shouldn't. My doctor told me only 2 days ago that I just can't be thinking about ovaries just yet, or revision of my reconstruction scars, or nipples, I have to concentrate on my current health issues: neck and lumbar spine.

Yes, the saga continues. I have an MRI scan for both next Tuesday which I am actually looking forward to. My hip pain has worsened in the last year and my lower back pain that I used to ignore has now become a daily chore since my surgery. I think the lack of Lat Dorsi muscles have exposed an existing problem and it is time to sort it out. My neck is still troubling me everyday and even light exercise on the Wii saw me in agony for a week with daily massage and disturbed sleep. I am signed off at the moment and damned glad. Both problems make daily life painful and tiring...it is so boring.

Good news! My sinus infection cold appears to have passed (6 week companion) and my bronchial infection is mostly gone but is still lingering but I am using an inhaler for the first time in my life to see if this helps...or else it is off for a chest x-ray.

So, you see..i have more than enough on my plate at the moment, BRCA stuff will have to wait, which bothers me because it bothers me and I want to be on the complete list. I am more than frustrated with my lot right now. Well, them be the cards dealt, gotta live it out and all will resolve.

I would like to book a calm period in life please, a bit like a holiday where there are no worries.

I am frustrated to not be able to log my breast reconstruction progress in an ordered manner but that is just the way the cookie crumbles.

Wednesday, 10 March 2010

76. Nip n Tuck Cancelled

Has it really been 4 months since I last posted? Shocking!! It is because nothing at all has moved forward since my last post, in fact it has all gone backwards. They cancelled my surgery the night before I was due in. I was ready, after months of pondering, preparing for its coming, I was ready and again the rug was pulled from under me. Great!

I was so annoyed that I told them I couldn't go through that again in a hurry so not to rebook it within the next 2 weeks, my studies were getting busy and deadlines looming for assignments. A week later I got another surgery appointment - with a weeks notice. I sat on it for a while, waited for the confirmation message they always send to your home phone for you to accept or decline the appointment. At that moment I would decide how I as feeling and whether I could go through with it. I was so scared they would make things more uncomfortable or make my scars worse, infection etc. The day before the surgery I planned to call them and find out what was going on if I had heard nothing. I got a phone call at 11am from my PS surgeon's secretary and this is how it went;

Secretary: Hello. I am phoning to confirm your surgery is scheduled for tomorrow.

Me: Hello. Um, I haven't had the usual advance telephone message to accept or decline the appointment.

Secretary: Oh, I see..well are you coming in or not?

Me: I am not sure. I did ask for it not be scheduled so soon as my studies will seriously suffer. I can't keep messing about with my life.

Secretary: So are you coming in tomorrow or not?

Me: I would have to say no now, I am sorry.

Secretary: Oh great! You could have let us know sooner. Now we have a large gap in the surgery schedule!

Me: Excuse me? When I last saw my surgeon he told me not to worry about cancelling, he would read a book instead. He knew how unsure I was, how scared I am to come in again. He also said that they can take this reconstruction process at MY pace.

Secretary: Right. I shall take you off the waiting list then.

Me: Um, okay. I will go back through the system when I feel I can face it again. I am sorry but I just can't do it now, as I explained.

Secretary: (She hung up on me).

Me: How polite! I LOVE NHS secretaries, you are all SO people people!

I was livid! Livid! She was so rude. I don't think she gave a rats ass that I was seriously concerned.

No surgery for me for a while. I didn't have it done and I am still thinking about it. I think I will go back to the GP to restart the process in May so I can go in over the summer. I have a serious phobia about vomiting bugs and the outbreaks in the hospitals in winter just freak me out. Winter hospitalisation would be my idea of hell on Earth!

So I am still as I was. Well, actually that is not true. I am STILL suffering with my neck injury and 'YAY' I have to have an MRI scan. The physio signed me off back to the GP as she couldn't help me after 4 months. Recently I have had numbness, pain and tingling in my shoulders and hands - not good! I can't carry my laptop into uni anymore and driving is very uncomfortable. Bloody hell - give me a break someone??

AND on top of that I have the cough from hell. 5 weeks now. I lost my voice and then the cough started, antibiotics didn't touch it and I am not taking another round I was given by my GP, that would be 3 lots in less than 2 months! Nope. I have already picked up a snotty cold on top of the cough. My poor immune system is really suffering. Before September I hadn't had a cold for 6 years!!

What a whinge that was. Better out than in as they say! I hope to post some nicer news next time. Maybe Race for Life in Plymouth?

Monday, 4 January 2010

75. Physio, Tidy Up & Fix It Surgery

Happy New Year All!

I am joining the January surgery mob (other BRCA Sisters out there are also on the list and we step forward together). On 16th December I had an appointment with two Plastic Surgeons and two other doctors. Five of us crammed in a small room and all intensely talking about my breast reconstruction, my boobs. It is a thing you get used to. I have lost any kind of shyness I may have had about getting them out with the amount of viewings they've had!

I told them about my problems with tightness, spasms and pain and they asked me to do the side front, bend twirls.

My main Plastic Surgeon is not the guy who did my Breast Reconstruction and he said he needs to discuss the surgery and how it was done with the original surgeon. They are planning to de-nervinate my Latisimus Dorsi muscles which now form the volume of my breasts. They are both still reacting to movement and tensing. Sometimes I get twitching so strong I can feel it for ages after the initial spasm, like they lock up and stay hard. Today I am going to record a video of their magical moving properties so I can look back on the changes. I will post this in BRCA Umbrella for everyone's amusement! Remember the pec dance clips of the past? Maybe I can do a version of my own. I found one!! Check out this video ->


Risks: as the surgery to cut the nerves from my Lat Dorsi muslces that now reside happily and unhappily in my boob skin is detailed, they could potentially cut the blood supply to the muscles themselves instead of just the nerves. Not good but I have to take the chance.

Physio says: My pectoral muscles are too strong. This is pulling my shoulders forward and I seem to be getting more and more tingling in my hands and elbows like nerves are trapped. She made me do some moves that sent a stinging and intense pain down each arm right through my elbow to my wrist. Ouch! I have some moves to do to help stretch them out but the Lats help keep your shoulders back and without them I am compensating lifting with my pecs instead and seem to have overbuilt them. This explains some of my problems. I shall speak to the surgeons about her comments too. Something is restricting my nerves in my arms and causing the pain.

Will it ever end? Yes, at some point I will just say ENOUGH but for now I have to go forward. BRCA1 gene - You shit!

3 weeks now. I am looking forward to it and dreading it too.