[mbbParticipant]

Our mum has recently been diagnosed with Myeloma. We have done a bit of research but all mum seems to have heard is the word “Cancer”.
Lots of things add up from her recent past. She had a fall which resulted in a bad spiral break of the leg. Anaemia, continence problems, sore ribs etc.
At present she lives in a retirement flat after moving from the family home. Her mobility is poor and after our Stepdad moved to a care home with Dementia it seemed ideal for her to be somewhere more accessible. Problem was covid kicked in and the retirement village was put into lockdown. Apart from visiting stepdad she is pretty well on her own.
I live over an hour away looking after my wife who has Parkinson’s full time.
She relies too much on my brother for help and recently, before diagnosis, we asked her to consider assisted living as it was clear her mobility was not going to improve.
Now we have the Myeloma diagnosis we need to convince her that she will need that help of an assisted living situation to help her when things are tough. Along with the diagnosis she is struggling to come to terms with it all. My brother is 54 and I’m 57 and we are not getting any younger and feel this is best for all concerned.
Any feedback on what the future may bring for her and any experience from yourselves that could help her make a decision would be most grateful.

[kh0305Moderator]

Hi mbb,

Sorry to hear that your family are going through a tough time right now – it is difficult when our loved ones are far away. It is understandable that you mum has heard and focussed upon the cancer part, it is definitely scary to hear the C word but the good news is that myeloma, whilst can’t be cured, as you have likely read it can be managed very well.

I’m not sure how old your mum is, but from your age I’m guessing 70s/80s which will probably mean she won’t be offered a stem cell transplant and more likely to be managed with drug combination. There are many new treatments coming along all the time which is great news. My dad was treated initially back in 2013 (so it is unlikely your mum will get the same combination as treatments have moved on so much) but we were lucky in that dad didn’t suffer many side effects. He was much more vulnerable to infection so did end up in hospital a few times with pneumonia until things were under control and he suffered with fatigue, getting exhausted very easily. I would say it was about a year after his stem cell transplant before he started returning to normal levels of activity, albeit at a slower pace with more rest afterwards. The good news is that one he was in remission, he pretty much returned to a normal life.
The next year or so is probably going to be quite tough for you all but hopefully things will start to normalise after that. Obviously this is just from my experience with my dad and everyone’s experience with myeloma is slightly different – it is a very individual disease. I would advise asking as many questions of your mum’s medical team as possible and taking along a notebook for answers and to keep track of test results etc as it is a bit overwhelming initially with all of the new information.

I hope this is helpful for you. The infoline is also a great source of information- 0800 980 3332 and don’t hesitate to come back to us on the forum.

Good luck with everything xx

[lilibParticipant]

Hello mbb,

Sorry to hear about your family troubles, and now with your Mum being diagnosed with Myeloma on top of everything! You asked about what she might expect, and how this may impact on her mobility, etc., and I can give you my experience of being the wife of someone with MM.
Firstly, I am so glad that we moved to a bungalow before all this happened. Secondly, I am glad that we live within 5 miles of the hospital where my husband has treatment, and that we have our own transport. My husband is in his late 60s, and the consultants have always taken the view that he will go for a transplant when the time comes. The past year has been a long round of weekly or twice weekly visits to the hospital, and a huge schedule of drugs to be taken every day at home. It will help your Mum if you can attend the consultant’s meeting with her and meet the Clinical Nurse Specialist(s) who will be organising her treatment. Then, you will need to work out how you are going to get her to and from the hospital. And who will ensure that she takes the right tablets at the right time of day. My late mother was a District Nurse, and I reflect on the fact that this is the sort of work she used to do, but sadly, I don’t think this type of treatment is undertaken at home any more.

I hope that you manage to find a workable solution for your Mum. I really don’t know how people who live on their own manage to do some of the things we have had to do. My husband was not able to drive at all for the first six months – just because it was too painful – but his mobility has improved enormously since he started the treatment, so perhaps your Mum will get a bit better than she is now in time.

All the best,

Lili

[mbbParticipant]

Thanks for all the heads up. Things have moved along since my original post. Mum is still in Hospital so they can get her diabetes under control, to improve her breathing, get her continence in order etc to get her well enough to get her back to her flat. I did have to step in as they seemed keen to discharge before all these issues were got under control.
Social services have got her a good care package in place for a possible discharge on Monday. I did get to visit her today and she seemed in good spirits. A myeloma nurse has told her what will happen going forward and I did remind her once she is over the initial trepidation it will be safer for her to be home away from the possibility of infection in hospital.
The Haematologist will discuss with us all what treatment will be administered going forward once all her Sats are looking good. Me and my wife will make sure she doesn’t return to an empty flat. I just hope she picks up mentally and seeks help with her anxiety and depression.
I will pass on all the valuable info and experience you have passed on which I hope will settle her nerves.

[kh0305Moderator]

Thanks for the update mbb. Good to hear that you have a good care package in place for your mum’s return home and pleased you pushed for her to be kept in until everything is more under control. Hopefully once she is back home she will feel a bit happier and the support you have found at home and on here will help to alleviate some of her concerns. If she does have any concerns or questions when she gets back do pass on the infoline number to her in case she finds it of use. Hope her homecoming goes well xx

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