Myeloma, autologous stem cell transplant

Hi, I am really feeling for you both right now. I have MM and had a stem cell transplant September 2023.  I have never felt so ill in my life. Mouth ulcers, vomiting,  diarrhea,  didn't eat or drink for 11 days which was very worrying.  5 drips at any one time and couldn't see an end to it but then on the 12 day I felt a tiny bit better and managed to keep a cup of tea down!  I went from strength to strength  day by day. Baby steps for long enough but I got there.  I came home very fatigued but I stayed positive which is very hard. I did have some really down days but these got less and less.  I am now 1 year post SCT and in remission.  I have terrible neuropathy in my feet and lower legs but  open with this.  I feel great just now and life does get back to your new normal.  She will get through it with the help of you and friends and family.   Please stay strong and positive and we are always here for you  even for just a chat. Take care.  

When I was in the hospital I Speke to someone  about how I was feeling  they listened to me and it felt good  you could tell them how you felt where as you would not say it to family incasebit upset them if your wife could do this it might help also 

You will get through it, it will take time. I wish you good luck and patience is the key. I had a stem cell transplant too. I went down with an infection  of influenza and bacteria on my lungs. I pulled through and I’m in remission now. So if I can do it so can you. God be with you x

Great.   I got my phone call on suspected MM. on my 66 th birthday and of course my retirement day.     Perhaps to get back on your original post she may benefit from a very close friend to visit in hospital with the approval of the ward sister     If possible this may lift her spirits and some Thai food to make the whole ward jealous

Hi JenksB. Cakie here otherwise known as Sue .

Do dorry to here of you wife's story and that you also have MM .So hard for your wife and very difficult for you to see her struggling with everything . Glad you have turned to this site for some support .

I have MM and had a Stem Cell Transplant April 2023 and am now in remission and feeling very well .Many of the things you have mentioned I relate to . I can say the they do improve and get better . Lack of appetite for me was the strangest thing . It used to take me an hour to eat 1 weetabix in the morning ! And the nausea that was a constant was just horrible and miserable .Staff were able to give me medication to help but in the end just like all the other horrible things it will pass. Does your wife feel able to talk to the team looking after her to tell them how she is feeling .I found they were able to offer support with most symptoms 

Hopefully the need for platelets and IV antibiotics will decrease as she starts to get better .

Day 10 is still very early days and at this stage I was still feeling very poorly . I found setting a very small routine for my self helped me maintain some personal structure in the day ,  just having a shower was exhausting but I always tried to do that in the morning .After "lunch " walk little around my room etc . I was in hospital for nearly a month because my recovery was slightly delayed by various infections and the need for top ups of blood and platelets. Everything came good in the end . Our bodies are miraculous and medical science is a wonder . 

I really hope that as your wife begins to feel better she will be able to be positive and kind to herself .After I came out of hospital I found my specialist nurse was a great support and I also had counselling offered to me via Macmillan . 

To  he honest I wasn't able to start eating much until I got home and then my appetite  began to improve and I turned a corner and began to feel more like myself again . It's slow but will happen . Home is the best healer . I hope this helps you and your wife . 

Best wishes to you both , Sue x