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Has anyone found a way to manage a manual w’chair after mastectomy?

Been managing all regular household tasks - laundry, cooking (including bread making) in my manual w’chair (RGK) but now I need breast surgery - I don’t know how I‘ll cope if/when I get lymphodema or brachial plexus neuropophy - my arms have become vital to maintain my quality of life - any suggestions please.

  1. Hi . I am so sorry you have to go through this. My aunt has lymphodema, but my sister, who endured three breast surgeries, and my mother, who had one surgery, had no complications. I do think it made a difference that my mother and sister both did lot of research beforehand and were actively involved in their treatments. It is hard to predict who will be affected or why. However, the more you educate yourself beforehand, the better your chances of avoiding it. Have you talked to your MS doctor about the risks of certain treatments for breast cancer verses the benefits? Both lymphodema or brachial plexus neuropophy can be caused by radiation. Do you have to have radiation before or after surgery or might there be other options? Do you have support at home in case you do have issues? I hope your surgery is successful and uneventful and that you heal quickly with no further signs of cancer. I will be thinking of you. Please keep us posted. – Lori, MultipleSclerosis.net, Team Member

    1. Thank you Lori
      thats the most helpful response Ive had

      I didn’t know both lymphodema and brachial plexus neuropophy can be caused by radiation.

      If I get t that stage, the radiation part will be my choice but at the moment I’m too scared to risk any of it.

      I know I can’t hang about cos the’lump', which is clearly visible “9 0’clock upper outer quadrant right breast is now showing clear signs of inflammtion. (it also hurts!)

      I’m waiting for someone from The Marsden to comfirm that there is no choice of surgeon - at the moment they tell me I have to accept whoever is “on the list” for the day of surgery.

      I don’t feel happy about a person I’ve never met and who knows nothing about me other than my writen PMH, wielding a knife before they've seen me in my chair.

      Thank you so much for your helpful response
      Can you also tell me about this friend thing - am trying to understand why people send them?

      1. Hi again Lori

        You’re probably right about them wanting to get me in as soon as possible because the tumour is failing to respond to the AI change from Letrozole to Exemestane and it has increased in size by a third in the last two months.

        I’m just not happy with the marsden’s refusal to understand that the quaality of MY life now depends on me using my manual chair - I’m a doer not a be-done-to person: I’m an ex-Lotus driver (speed freak) who still does all our organic cooking from scratch; I make bread twice a week and do all our laundry myself; our 17th centuary house simply will not accomodate an elecric wheelchair and at 65&68 we are too old to contemplate moving!

        Today I’ve found a local cancer oncoplastic surgen who works reasonably near to my lovely MS consultant who not only understands me but also gets the whole redhead faulty melanocortin-1 receptor gene thing. This is the gene that gives 2% of the population red hair along with a seriosly low pain threshold (5 shots of lidocaine are not enough to numb me for dental work!) but conversly we are ultra sensitive to anelgesics so we are notoriously difficult to bring round after aneasthia.

        You’d probably need your head tested to even think about working on a rehead with a scalpel! When I had (successful) treatment for cervical cancer in the 80s, only prompt use of the crash button stopped me drifting quietly off this mortal coil.

        I think chatting with you Lori has given me back my sense of purpose - I was beginning to get a bit “oh, what's the point” about it all - I’m tired of repeating myself to people who seem not to listen to a word I say - "The Royal Marsden” as a hospital are a bit to full of their own sense of self importance - when I finally asked several search engines for ‘The Best’ cancer hospitals in the world The Marsden is fifth in the list so they are definitely not the best.

        I hope you’re enjoying the weekend too Lori, I should think you need it if you get many folk like me filling up your inbox with misery - sorry but I’m grateful for you being there.....
        Colette

      2. Hi Colette ( )! I am so glad you are taking control and advocating for yourself. My mother survived breast cancer, but I lost my sister to the disease (She had a very aggressive form) a few years ago. It upsets me when doctors treat just the breast cancer and not the entire human being. You have choices. Don't ever settle. Please, please keep me posted on your treatments and surgery and reach out to some local cancer support groups. I know you want to do everything for yourself, but you and your spouse might benefit from some help immediately after the surgery. My heart goes out to you and I will be thinking of you!– Lori, MultipleSclerosis.net, Team Member

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