[lyshz03Participant]

Hi

Well the SCT is all over & he’s now on 2 months consolidation treatment, getting over the first week which has been hard. Eventually he started feeling almost normal after having his SCT in January & now he’s back to treatment it seems such a shame because he was feeling so good & this week he’s felt ill again & his walking has been affected I’m hoping that as it’s only for 8 weeks he will recover again before going onto maintenance treatment. Will we get our lives back to some kind of normal after this has anyone else felt that maybe the consolidation treatment makes things worse or is it really worth it? I’d be very grateful for any response.

Many thanks,
Lynn

[dazzParticipant]

Hi lynn,
Obv’s we can only speak from our own experiences and everyone’s is diff.
I’ve had 2 sct and they worked well for me but I am alot younger which will defo make a diff to the recovery time! As for your lives getting back to norm, I thk you’ll have to accept that there will be a new type of norm but and manage it diff, but as his recovery gets better the new norm won’t seem so bad but it’s the time factor for healing that I thk your finding hard to adjust too. My treatment now has put me in recovery mode and it takes it’s toll…esp on our partners too! Try to ride the wave as it will eventually get better.
Good luck
Daz

[lyshz03Participant]

Hi Daz,

Yes I’m sure you’re right it’s just such a difficult thing to adjust to hopefully things will get better again soon. Thanks for responding 😊

All the best Lynn

[lyshz03Participant]

Hello again,

What a rollercoaster of a time my husband has had, he contracted Covid & was hospitalised with Covid pneumonia in for 3 weeks & was extremely poorly. It set him back & was such a bad stroke of luck as he was beginning to feel much better. He is on his first lot of Lelidomide maintenance treatment now which has been delayed somewhat because of him contracting Covid. I’m not sure that it’s agreeing with him as he has a terrible rash & itchy scalp & extreme fatigue. The trouble is we’re not sure if it’s the result of pneumonia or his maintenance treatment, he’s got a telephone consultation in 2 weeks with his consultant so hopefully she will be able to advise him when she gets his blood test results. He is feeling extremely down at the moment because he doesn’t seem to be able to get back to how he felt prior to his SCT. He’s started his revaccination program but can’t have the Covid & pneumonia jabs until the autumn. I must admit I’m struggling at the moment with dealing with his negativity it’s really hard to see him like this & have our lives on hold yet again, he’s scared to go out in case he picks anything up although his nurse told him to get out & enjoy life while he’s in remission but it’s easier said than done when he’s been so ill & obviously he’s frightened of having another bout. I’m hoping that things will improve but I am concerned that they won’t, this illness is hateful.

Sorry to be negative but I’ve got to be truthful it’s not an easy time I just hope it gets better soon.

[davidainsdaleParticipant]

Hello Lynn

I’ve been the support group leader for one of the myeloma support groups here in the North West for the past 10 years and have met quite a few patients and carers who have been in similar situations as you describe in your post above. You are certainly not alone. I am also a myeloma patient for past 12 years, stem cell transplant, radiotherapy, second line treatment and maintenance.

The role of carers is much undervalued in helping patients along the road to recovery and my advice is to never give up and things usually get better. Take each day as it comes and don’t suffer in silence. It can be a real slog at times and they say that myeloma is a marathon not a sprint.

Some positive suggestions which have worked for our support group members. Sounds boring but go round Tesco when it’s quiet early on. Avoid own goals like crowded pubs, buses and trains. Perhaps a short break in a rented cottage or caravan. There is plenty of help available if you only ask eg Macmillan, Myeloma UK peer buddy, myeloma support groups, local voluntary services etc. A problem shared is a problem halved.

Hope this helps.
David

[lyshz03Participant]

Dear David,

Many thanks for your reply I will take heart from your comments, we are looking at having a short break in the near future I think that will definitely help him, how do you see about having a UK peer buddy? as I think that might help as well to share with someone who understands.

Thanks again,
Lynn

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