[tm123Participant]

Hi everyone, I’m 17, my mum is 53 (no, not under 50, but in excellent health and still well below the average age of myeloma sufferers) and she was diagnosed with multiple myeloma just last week.  We live together just the 2 of us. The diagnosis came as a bit of a shock as she had no symptoms (although she had MGUS). I’ve joined this forum in the hope of being able to help her as much as possible, as I know she finds it difficult to read a lot about myeloma at the moment.

Is there anything I can/should do at the moment (i.e. after initial diagnosis but before treatment) to make things easier? Anything to avoid doing?

Thanks everyone!

• This topic was modified 6 years, 5 months ago by  tm123.

[gcoulterParticipant]

Hi

You are clearly going to be there for her, which is the the number 1 thing you can do. In terms of what else then from my experience there are a couple of things you can think of.

My wife was diagnosed 3 years ago aged 48. Like your mum she was, and still is, reluctant to read a lot about Myeloma. I did this for her, and was able to pass it on as and when she wanted to know something, it also helped me re-assure her at times.

I also went along to all her appointments with the consultant, as it is hard for 1 person to take in everything they are saying.

Continue to use the forum, there are loads of really helpful people on here.

Finally, remember to look after yourself and make time for you. This will help you to help your mum.

Graham

[sabsParticipant]

Hi,

My fiance is was diagnosed Mar this year he is going to be 40 this week, I agree 100% with Graham and what he said. Go with your mum whenever you can, make lists of questions as and when they come up, even though my other half looks things up on MM, when at the appointments he doesn’t necessarily register what is going on and albeit some times gets annoyed when he thinks I ask random questions to the Dr, but in turn it helps in the long run and a lot of the time I can explain things  at a later stage or confirm next steps when he’s not sure. For my own sanity I do a diary of the days he is having treatment, and I have a daily chart where I keep all his stats – temperature / BP (he is on a trial so its more of peace of mind for me). I also sort out all his medication daily so he just needs to take them at the right time, which at times is a pain when he’s had enough of taking tablets so I find myself occasionally being the bad guy having to constantly nag him when hes not on track. And again agreeing with Graham – its a long slog before you can get into a routine just don’t forget about yourself.

Sab’s

[tm123Participant]

Thank you so much for your thoughtful replies, Graham and Sabs! I very much appreciate it.

 

Tahlia

[natdarke1Participant]

Hi Tahlia,

how is your mum now? My mum was diagnosed just before Christmas 2014. She had a lot of symptoms that had been ignored by GP but it was still a big shock… Especially as none of us had heard of myeloma before! I found this website so useful… I also signed up to do a 10k in the January 2015, to raise money for myeloma. This helped us all have something positive to focus on, especially my mum. Mum underwent a clinical trial followed by SCT, which were both really successful. We just got told yesterday they think MM might be active again, so back down to earth with a bang and no doubt yet more treatment ahead… Just try your best to go to most appointments with your mum, that helps me, and her. Also, just try your best to remain positive and strong… Trust me, I know how tough that is!!

take care x

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