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*


Anonymous said...

Oh Leigh-Ann come on hun you are making me sad now, you being such a positive person normally. I know it is hard but you did make the right decision don't doubt that in your head for one moment. Sending you some (((Hugs))) cos I love you and you keep me positive. Karen xxx

Kay Edwards said...

Hey LA, sending gentle hugs that hopefully won't hurt! I had my surgery on Dec 1st, 2004 and feel very fortunate. I have had back problems from the "lack" of Lat Dorsi muscles and had to see a Chiropractor, but otherwise had a good recovery. I did have the experience of the couch collapsing when I went for my second lot of tattoos though! Perhaps my recovery has been different because I don't do such physical stuff as kayaking or kite flying! Try and keep your chin up. See you soon, Kay