I think it’s going to lead to depression. It’s hard for it not too, it’s a killer blow. Maybe tomorrow I might feel different ? can’t see the advantages at the moment. In a vet situation if a animal quality of life worsens then the vet puts the animal to sleep.
@ Everyone
If you was told 2 - 3 percent of death, risk of catching a infection could possibly kill you. Feeling sick, going to the toilet 8 times a day, mouth ulcers, stomach sore and inflamed, isolation 3 weeks confined to one room. No guarantee of success procedure could fail, Myeloma could come back. Feeling tired, run down, months of feeling like that, living alone. Effect on your mental well-being, feeling depressed
Would you go ahead with this procedure when life isn’t great at all ?
But not doing this is also not a good choice. Im so sorry, it sounds so hard, but you can get through this I hope, and then there is still a life to be made. Life is very cruel and hard but please don’t give up on it. Your mum would not want that.
@Keith68 Yes I would because that percentage is low, so the chances of it happening are probably slim. Everything has risks, my son is 26 and has a rare de novo genetic disease VHL it’s classed as cancer, I’ve had to learn to think positive for him, hes had times when not being here is the easy option but life isn’t easy @Keith68, I never expected to lose my parents and brother within two years my whole family unit gone, it’s destroyed me, but it also gives you a strength you never knew you had, I really hope you get as much support as possible, having friends around you really helps too
Sending you all best wishes @Wethery52 . That is really hard and I’m so sorry. There is real hope for you too @Keith68 and I hope you can turn to that. Sending you both all the very best.
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There’s a 97-98% chance it will not happen. I watched my mum go through what you are now for 3 1/2 months in 2019. She fought hard and stayed with us for another 4 1/2 years. I’ve got my sister in hospital after having her second operation in two months after being diagnosed with cancer. I have no friends, she is my best friend and I have spent the last few months scared that I am going to lose her, she is the only family I have left. I have been diagnosed with depression because of everything that has happened. I’m fighting to get better, going to Maggie’s for support, taking antidepressants that make me feel so tired, but I keep fighting. There is a life out there but it doesn’t fall into your lap, you have to fight for it. I’m applying to go to university next year in honour of my mum. There is help out there to get you on track, you’ve got to want it though
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Sorry to hear about your sister, I wondered why I not seen you on here for awhile. I done a few meet ups with the Myeloma group at Maggies and have them on What’s App.
I not made a decision and my count is low at 4, I have been in touch with myeloma group on what’s app and I have another friend on what’s app who also has Myeloma Cancer.
Hi @Malcolm2 I think most of us are dealing with crap hence coming on here, sorry to hear about your sister have you any other siblings to lean on ?
I just refuse to let this beat me down because I know my family up there wouldn’t want me to and out of respect for them going far too soon I’ll live a good kind life, a one they can be proud of, this forum is good it’s nice to support people you probably will never meet x
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I did create a post regarding cancer and loss as someone suggested it on here. But no one replied to the post. I fully support anyone’s life that has been effected by Cancer.
I had a lot of support and help from Maggie’s and posted about how I felt regarding the pre SCT meeting in the WhatsApp group. It’s not a easy decision to make and I wasn’t prepared for it on Monday. I will take my time!
I think my decision making regards Myeloma even though I done everything asked of me so far. I did mention I lost my mum on Monday, I try not to think or mention mum as it gets me very emotional. I’m still struggling with that, though it’s now been 15 months since I lost mum I got so many memories of doing things with mum a lifetime. Like a lot have said on here it does feel like your life’s over regarding the loss of a loved one. That going to effect my decision making.
@Keith68 It’s understandable it’s going to be difficult for you, as soon as anyone mentions the C word you automatically assume the worst, I know I did with my sons vhl but I think educating yourself as much as possible often helps too, and it seems that maggies is being a great support for you too
I think you would really benefit from going into Maggie’s. My local one has lots of classes running, and they have told me I am welcome any time to sit and have a cup of tea and a chat. I really enjoy the medication classes then I diet with the group for tea and biscuits afterwards. I know cancer treatment is scary but there is not a treatment for it on the planet that is 100% risk free. You need the stem cell treatment to get the myeloma under control. You need to get help too as I think you have what they call complicated grief, you just need to talk to a professional and get tips on how to cope with things
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It’s been an awful year and I am sorry what you and your son are going through, it’s so hard. I don’t have anyone else except for my sister. I have myself a shake and told myself I needed to get out and meet people, hence Maggie’s who are wonderful. I hope going to university next year will help me make some friends. I hope you are doing ok, it’s right what you say, we want to do things that will make our lost loved ones proud
That’s a lovely way to approach it and make your family proud of you. I am sure they will already be that and looking down on you with admiration.
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I can go in when ever I want, there’s classes like creating writing. I tend to pop in if I have to go to the hospital. But time I come out the clinic, sometimes it’s too late.
I remembered something from my SCT meeting. In October 2020 I went into hospital with a popped ulcer. I was in hospital for almost 3 weeks, 5 days on critical care. Up until then I not been in hospital since I was 13. He seemed a little concerned by this, obviously it’s on my records. Don’t know if this makes me a higher risk ?
Oh thats not great. But I wouldnt have thought it would be directly relevant to this?
I don’t know, not sure if he mentioned it put me more at risk of sepsis ? not heard anything over the last two days. I got to go back to hospital tomorrow to have Hickman line dressing changed. He did mention he would have a word with the Myeloma team. Been thinking of mum a lot today, bit emotional!