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Dad has multiple myeloma and is getting worse

17 Oct 2021 09:16

Hi everyone i posted briefly about 11 months ago but guess i wasnt ready at the time 

Brief history dad became poorly last oct ( 2020) he was admitted to hospital with pnumonia and a week later was sent home after being told he had multiple myeloma we were all in shock but hopeful as hes a very positive person . A month or two later he had a chest x-ray an told he also had pulmonary fibrosis ! ( just to explain the extent of the shock hes never ill and never takes even a paracetamol!) 

he was offered no help with the fibrosis indeed the dr said the cancer would probably get him first!!

he took ill again just over a month ago ( had been tiring easily an bit forgetful) we had paramedics out twice who on second call admitted him due to covid we could only ring cancer ward who said he was on mend an sent him home two weeks ago ( i might add his discharge note said sepsis although we were never told!!) 

since being home he is very frail sleeps more and does not eat much he gets up when he can and tries to make us laugh but im so worried he had an mri scan last thursday and we see the consultant next thursday 

i suppose what im asking is ' is this it'! Im scared about what happens next my mum is looking ill with the stress and my eldest son and I are the ones who try and help most but i worry for him too and in truth my dad is 83 I am 55 but not ready to lose him yet 

thank you if you persevered this far and I hope I havnt sounded selfish i really am just scared and trying to care for dad mum an my kids so any advice or hint of how to manage going forward would be so grateful 

Thank you

x

 

Dad has multiple myeloma and is getting worse

17 Oct 2021 13:15 in response to Pet70

Hi there my dad died 5 weeks ago from myeloma cancer he was 63 he struggled to eat and had several blood transfusions before death we did not know about the cancer .cancer is unpredictable I thought my dad was getting better after some radiotherapy and he died in a week I then read further on death and found they tend to get better before they get worse I'm probably waffling here and not giving any advice at all but I'll just say a few words spend what time you can with him talk about his last wishes do not forget this as it's useful if he hasent got a will be sure to get it down on paper my dad did not have one and I may now loose my home and my 4 kids live in his home because intestancy rules it has to be split your parent has done well being 83 but under stable you don't want to loose him yet.also don't worry about what you have no control over as I said my dads looked fine then died you don't know when it will be!I understand the sepsis thing my dad had an infection but the cancer killed him they couldn't do much because the cancer took over and the infection was in the way of it which then made his body fail try not to be scared take it as a new path of life your dad will be in a better place no pain although it's hard to think that it's the truth you may have more time yet just take each day as it comes 

Dad has multiple myeloma and is getting worse

24 Oct 2021 10:53 in response to Pet70

Hi there. I'm very sorry to hear about your Dad. My Dad has Myeloma and I totally understand your need to know 'is this it?' Unfortunately I think it's not possible for anyone to actually know, even the consultant. I wish it were, it would help me. It really sounds like you've all been through a lot lately.

I hope it's helpful to tell you a little about my Dad. I strongly believe everyone is different and, after being desperate to know and trawling through every cancer and Myeloma site imaginable, I've now made peace with the fact that I can't know and am trying (not always successfully!) to take each day as it comes. My Dad has certainly been very 'up and down' and still is. I constantly think 'this is it' and then a few days later he's back to (his) normal. 

He was diagnosed in 2017 and stopped chemo in September of last year, after feeling really awful and having had enough (of chemo and hospital visits). He's 89 now. Everything I've read indicates 4 years is the average after diagnosis, and less in the elderly. My Dad weighs about 43 kilos, has no particularly strong desire to live (although he is very stoical) and I've been called into a room 3 times on different occasions to tell me this is probably it and to prepare. Each time he has made it through. He's had pneumonia and sepsis. Now he's at home with just a blood test and hospital phone call every couple of months. Even the palliative nurse has stopped seeing us. I was a bit upset about that (I feel I could do with the support) but to be fair, he doesn't want anyone around, so while we are still coping I am putting up with it.

As he is now, he's still able to walk around the house (he doesn't feel strong enough to walk outside). He eats, but his appetite has definitely gone down lately. There are some days when he's very sleepy and confused, and others not so much. He sleeps every afternoon now for an hour and on bad days almost all day. The problem with my Dad is that he also has a skin cancer tumour on his head (as with your Dad, they said it was not worth putting him through an op when it started, as - not quite in those words - they weren't expecting him to last long). I've no idea with my Dad's confusion whether it's the Myeloma (calcium leeching into blood can result in confusion), age, or the tumour on (and in?) his head. I think this is the problem when you have two illnesses, you don't always know which one is causing the problem. They don't know either, and my Dad wouldn't go for scans or anything now anyway.

Anyway, I could go on for days but I'd better stop now. If it would help to ask anything else, please do, I can only give my experience but it may help. I wish all the very best to you and your family.

Dad has multiple myeloma and is getting worse

25 Oct 2021 12:49 in response to Blue09

Thank you so much for replying it means a lot I hope you and dad are managing ok

well hes been sleepy on and off since thursday when we had the results of his mri and told over the phone ( dad too ill to attend) that he has days to weeks left we are devastated mum couldnt bring herself to tell him days so said a few months im annoyed as i feel he should have the truth?!anyway not eating a lot dozing a lot still waiting for gp palliative care anyone really to be in touch he says hes ok he has no meds now all stopped apart from dyhydracodeine for pain however yesterday a lump appeared on his chest now my mum has just rang hes coughing badly is this it? Im terrified im not ready im off to surgery to try and get help but if anyone has had similar please let me know 

thank you for reading will update later it means the world having this site thank you 

Dad has multiple myeloma and is getting worse

25 Oct 2021 22:51 in response to Pet70

Hello Pet70

I'm so sorry to hear that, I hope you managed to sort out the palliative care, they should at least be organising that for you. Sending you very best wishes and I hope someone here on the site can help with advice regarding his lump and coughing.