Hello

Hi Buylizzie .

You have a very similar timeline to myself . I was diagnosed Sept 22 had 16 weeks of chemo and had the stem cell transplant first week in April .This time waiting is a very anxious time , I can truly understand how you feel . I hope you have family and friends to talk to and also The CNS . I found my Myeloma Nurse was really helpful and supportive during the gap between harvest and transplant. There was nothing I couldn't ask her and no question that was "silly " 

Can you try and keep your fitness levels up before the transplant , I think this has helped me post transplant . It is a big step but when get to hospital you may find as I did the process takes over .Go with the flow as much as you can .The transplant team are so skillful and experienced and will look after you very well . They have an a  solution to just about everything to help make you more comfortable .Don't hold back on how you are feeling .

I there will be times when you feel pretty poorly but it's a short time for long time gain .

I'm feeling really well now and so glad I went for the transplant .

Please feel free to ask me anything , happy to help . X 

Sue 

Hi busylizzie and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your diagnosis and to hear that you are in a Stem Cell Transplant (SCT) pathway.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey well…… especially as I have had 2 Allo (donor) SCTs June 2914 then Oct 2015 so I know this journey very well.

We actually have a dedicated Stem cell transplant support group on the community, a safe place to talk with others from many blood cancers who have navigated the Magical Mystery Tour that is SCT.

Do join the SCT group, put up a post and introduce yourself ((hugs))

Hello 

thank you so much for replying , I’m so scared of the next step , I’m due to go in end of this month at Marsden Sutton , I was meant to have transplant months ago but had a severe reaction to cyclophosphamide so all treatment stopped for a while , I’m pleased you are feeling well it gives me hope , are you on any treatment at the moment . I suffer with severe IBS and I know the transplant is going to kill my stomach !!! It worries me so much about not making the toilet although  I know the staff will be amazing . Just want to get it over with now 

X

Thank you , I have joined .

Hello again , I'm so sorry to hear about your bumpy journey.Nothing about Myeloma seems straight forward does it ? I too have IBS and disposable underwear was my best friend while I was in hospital.My CNS recommended I take some in and it was good advice I'm on preventative meds at the moment , anti viral , calcium and a nebulizer once a month to prevent pneumonia. Aso Zometa every 4 weeks . I'm allergic to so many antibiotics so need the neb as can't have oral antibiotics .

I think I'm about to start maintenance lenithamide at next apt in 2 weeks time .

So far my recovery has been trouble free, thankgoodness but I'm still very cautious about being in crowds and catching infections 

Take care 

Sue 

Hello Sue 

Thank you for advice about disposable underwear , I’m so pleased you are doing ok ,I’m feeling a bit better about transplant although anxious . Hope all goes well at your next appointment 

Best wishes 

Pat 

Hi busylizzie, similar to you I was diagnosed October 2022. I had my SCT middle of May & I’m feeling really well, just started back on chemo yesterday at my local hospital day unit. I can’t add much to the replies you’ve already received - disposable pants were the best thing I took into hospital with me, keeping fit before you’re admitted is good advice, suck on ice chips when they’re offered. I understand it’s an anxious time but PLEASE please try not to overthink it - go with the flow! All the best, you’ll be fine.

love Nuala x

Hi Nuala 

Thank you for advice and I’m pleased all is going well for you , reading stories like yours makes me feel a little less anxious . I have brought some Tena pants and big nappies ha ha , what disposable pants did you buy , someone also suggested plastic pants . Hope next line of treatment goes well 

best wishes 

Pat x

Hi Pat, Tena pants were my choice, not sure about plastic, might make your bum a bit hot & clammy! Please try not to overthink the upcoming SCT, it’ll be over with before you realise & you can begin your recovery, you’ll be taken very good care of in hospital I’m sure. Wishing you all the best, take care

Nuala x

On the subject of Tena pants I will say that a low point for me was sitting on the loo in the middle of the night, holding onto the drip stand I’d wheeled in there with me, staring into the (clean) gusset of my nappy pants thinking “good grief is this what it’s come to”! It’s a good memory now, those sort of things remind me how far I’ve come!

Nuala