I am 71 and for the last 18mths have had monthly injections of "Simponi" (golimumab) to control my R/A, approx. 12mths ago the monthly blood tests showed a sharp decrease in white cells and platelets so for a period of 6wks the injections were stopped, the resulting pain was bad but eventually tests indicated blood levels were back to an acceptable level for me to restart the injections. Approx. 2wks ago as a result of blood tests the white count registered 0.8 platelet 2, again all medication for the R/A has been stopped, I had an appointment at haematology last week when it was suggested that I have a sample of bone marrow tested, indications are possible leukaemia, a further appointment has been arranged for 6th Jan. My thoughts are if I proceed with the test and the result is positive I do not think that I could deal with the chemotherapy and all that goes with it. I do not want any sympathy, but I don't know what to do.
A dilemma.: I am 71 and for the last 18mths have had... - NRAS
A dilemma.
Sorry to hear about your blood trouble. My daughter has had low platelets for four years now, they have had 4 or 5 bone marrow tests that show nothing. I mean try not to worry it could just be the injection you are having. I would just say try and relax and enjoy Christmas, sending hugs and best wishes .
Chris
That's a difficult one, and I can understand you feel a bit between a rock & a hard place as the test itself isn't great fun let alone the possible results. Presumably you have until 6th January to decide and can keep the appointment for now, and work out what you want to do over the holiday period? I often find mulling things over for a few days helps, as I change my mind 400 times and then realise that on balance I am more one way than another.
I also guess that after 71 years you have coped with a fair bit in your life, and could probably deal with whatever is thrown your way if you take it a bit at a time. I hope for your sake it doesn't come to that, but some people do cope with chemo a lot better than others - and you can always stop it if you don't. But as Fastball says, do try to give yourself a nice nice few days this week. Good luck with whatever you decide, and even more good wishes for the process of making a tough decision.
Thanks for the helpful words, what has really p***** me off is that both the Consultant and G.P. have stressed that I need to isolate myself because any infection could be fatal, Happy Christmas but I feel like "billy no mates"
I just remembered your comment about having to isolate yourself, so popped on here to say hello and hope at you've found a way to have something enjoyable today and not feel too cut off from the world. I'm eating a second mince pie in your name.....
Hello scorpius, Im sorry you are having to deal with this. Life is not fair to be put in such circumstances where we have to make decisions we do not want to make, at some point we get tired of making them. Life of course is a precious gift, but sometimes can feel like hell. I am sending warm (hugs)).
I can not really offer much except tell you my dads story.
My father was much older than most children's fathers, most people thought he was my Grandfather, I was conceived when he was 68 years old (no I am not making this up) my mother was 30 when I was born, I am their fifth and last child. My dad had RA, it was bad, I'm pretty sure he also had Osteo because he had big round lumps on his joints, on his hands. My dad never talked about his disease to me much, he did tell me he had RA. In his day the kinds of RD drugs we have now did not exist (he was born in 1902) so I'm sure his disease progressed, and i could tell he was always in a lot of pain. plus my dad was old school "tough' he didnt believe much in medicine. One day he cut himself shaving, it didn't heal. He left it for over a year, putting various slaves on it. It looked kinda like a bubbled up cold sore. We kept telling him to go to the doctors. finally one day he did, turn out it was a melanoma, they removed it, and sent him home. what he didnt tell us is he was also diagnosed with Leukemia. He was supposed to start chemotherapy treatment immediately. Over the next year I watched my fathers health decline, I was 15 years old and now was 'in charge' of my fathers health. (My mother died at age 31 of cancer when i was one year old)
I had to bathe my father and do things a 15 year old girl shouldn't have had to, I did not know what i was doing, and there was no one to help me, my siblings scattered throughout the country.
Finally when my father could not get out of bed, i called an ambulance, crying. they could not understand what I was trying to say. I just kept telling them my dad was sick. The hospital got a hold of my fathers family physician, who actually came to out house. He said " did ____ not tell you he has Leukemia? "
I told him "no" (I did not even know what Leukemia was....the doctor told me it was cancer of the blood. The doctor told my dad "_____you can not die here, its not fair to your girl"
My dad was taken by ambulance to hospital and died a few days later. I was 15 years old, but somehow I understood, his decision not to have chemotherapy and his want to die at home. My dad did have a long life, 83 years, and I guess he decided chemotherapy for him was not worth it. I am not one bit resentful that he didnt try to 'fight' his life was his life, therefore his decision. If he was a lot younger, I'm sure i would have felt differently, knowing I could have him around longer, but I knew he already lived a pretty long life. I think the only selfish thing my dad did was try to die at home. It would have been me who found him. He obviously thought i would have been strong enough to deal.....but I wasnt and thank my lucky stars I didnt find him gone.
No one here will judge you Scorpius for your own personal decisions, it is your life ultimately and we will be here to support you no matter what you decide. I know life can really, really suck sometimes, and we are pushed to the brink with dealing with stuff. Life can be ugly and so difficult.....and yet life is so very beautiful, it shines in my sons eyes.
Well said Hobb8ts. I'm wishing each and e Ery one a Happy Holiday Season and Prosperous New Year. ALSO, THE BEST OF HEALTH TO ALL OF US!!
I am in a pickle.
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