I’m so sorry you’re dealing with myeloma and facing a transplant. And it’s completely natural that you are scared - I was too, and I should think everyone who has one is. I cried when they told me I did indeed need the transplant - it felt like such a big, terrible thing to face.
Have you had chemo leading up to this? If so, you’ve already experienced much of how it is. The chemo can make you feel rotten - but not everybody feels bad with it. I had a strong reaction, but if you look on the ‘undergoing stem cell transplant’ thread not everybody does at all. And funnily, the stem cell transplant itself is massively underwhelming! You just have a drip of cells, and nothing at all happens. However, the chemo can then kick in around about that time, and you’re also susceptible to infections because your bone marrow has been zapped. Those are the things that may trouble you.
Recovery therefore depends a little bit on the above factors, and also on previous treatment. I’d had two rounds of intensive chemo before the transplant and transplant chemo, so I was already thin and had lost muscle in my legs. I was in hospital for the transplant for 6 weeks, because I did get an infection towards the end. However, despite all this, I was able to walk out of the hospital unaided. (If you can, try to use your legs or do some squats whilst in hospital- it’s so important not to lose leg strength.)
Once I got home, I had trouble with the stairs (my husband had to push me up them by the bottom, ha ha) and I really had to work on standing and moving around to strengthen my legs. I cooked a lot because pottering in the kitchen helped with exactly that. But I think I was quite sofa-bound for about 3 weeks. Fortunately, my appetite came roaring back, so I ate like a horse, which probably helped.
Another thing which I think hastened my recovery - but which probably shouldn’t have happened - was that my husband had to go away for work. He’s a mariner, and he’d had 8 months off by this time, looking after our son whilst I was in hospital (4 months) or in between chemo rounds. Other than weak legs, I was healthy in myself, so at 5 weeks post my return home, he went back to sea! I was absolutely dreading this - it was a real risk, and left me with a huge task on my hands, of looking after our teenage son, our house and our dog whilst still recovering. But it forced me to push myself, and I went out and walked the dog and slowly built myself up, and we managed it. He’s away every other month, so I knew I had some respite to look forward to when he got home. However, I don’t recommend this tactic! But we had little choice. And I think it does show that if you’re healthy enough, you can push yourself to make a speedy recovery. 5 weeks from getting home I was cooking, cleaning, walking etc and managing on my own. And about ten weeks from getting home I started doing some HIIT exercise (a DVD at home.) I would have been back at work after about 3 months as I was well enough, but I lost my job just before getting ill, and with the pandemic, I’m very nervous about being out there. So I’ve found a small amount of work from home.
However, 6 months later I had a bit of a blip. I was off a lot of the medications which were suppressing things, and so I got shingles twice (and had to go back on aciclovir.) The glandular fever virus (EBV) reactivated in my body and I needed weekly drips for that, for a month. And I reacted to that drug. Plus a month-long cold. So had I been back at a workplace, I would have had a lot of time off. But an employer would have had to accept that.
But I’m past that blip now and feeling fantastic again. I feel normal. Better than I did before my diagnosis. That’s nearly a year post-transplant (Jan 20th.) Had I not had that three-month long blip, I can honestly say I was better after 3 months. But of course your immune system does take a year or so to gather some strength again. And everybody is so different. We all have our different struggles and successes. But just as an indicator, my recovery does show that with some luck, you can literally be on your feet again quite quickly. I’ve read that lots of other people have recovered quite quickly too.
I hope this helps you to feel less worried. It’s a horrible prospect to have hanging over you at Christmas - I remember that well. I hope you can relax with a glass of fizz perhaps, or with the company of your family, and forget about it for a moment or two.
If you need to ask anything else, please do. I’m so happy to help, because we’re a special family, us lot - we endure awful things mentally and physically, and no one else can understand quite what we go through. But people here do.
Wishing you strength and positivity this Christmas time, and lots of love. Xx