June 5, 2020
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.
June 5, 2020
June 6, 2020
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?
June 7, 2020
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.....
June 15, 2020
Hi Colette (