SCT next week

Hi again Susan and a second welcome.

I had both my Allo SCTs across at The Beatson..... but it will be the same staff and they are great. I have only been to the QEUH for clinics - amazing place.

We have had a few folks go through SCT in the QE so lets look for them to pick up on your post.

We have two folks from Inverness getting ready to go down to QE, one for an Allo and other for an Auto so look out for them

BEAM can be a big hit but its not for long. I had a different conditioning but did have the M in BEAM and that is Melphalan.

Have a look at this thread about having Melphalan. During the M you will have to do the ice pole sucking thing. I asked to start 30 mins before, through the 30 mins IV and 30 mins after to stop your mouth turning into one big ulcer!!!!

You will most likely be given a two pack oral rinse called Caphosol. Very important to use this as you are told - I set my phone for every there. hours to ensure I was taking it correctly and this should help control any mucositis.

Also have a look at this thread Checklist for SCT Unit, from what I have been told, folks going through an Auto at QE may well be in a ward with other folks going through the same and only in a single ward if there is one available or catch an infection, but these are mainly kept for folks going through an Allo.

I am just going out but come back with any questions and I will try and help out.

Due to one complication or another, I've spent most of my year in 4b at the QE and the staff are AMAZING. Lisa, the ward sister, is wonderful and will always make an effort to come and say hi and if anything at all is amiss ask to speak to her she will make it better. The health care support workers have excellent chat and honestly will keep you going, and one of my favourite things about the ward is they try to keep your nurses pretty consistent so you'll usually see the same face a few days or nights in a row. The consultants do two weekly cycles on the ward and sometimes it will be a registrar who comes in to see you so again, it's nice to have familiar faces. The physios are so lovely and give excellent advice, and the dietician is BRILLIANT, I've ended up having quite a lot of extra help from Claire and if you're ever struggling with eating she will get you through it. 

You're going to an excellent team, take a deep breath and let them take care of you, and best of luck!

Hi Susan I had exactly the same relapse then auto. I got through it recovery is slow afterwards, but I’m now almost two years in remission and back to my normal self doing all the activities I did before. It’s been well worth going through it.

sue 

Hi, susan--d, I have been thinking of you and hope you're coping with all the nasties. I start next wednesday. Dreading it!

Wishing you well

Lynda. Xx

Hi you will both be fine the nursing staff looked after me very well and nothing was too much trouble, make sure you take some ice pops to put in their freezer. These helped so much with my mouth.

Good luck and wishing you well Sue 

Hi susan-d,. I did make a friend's request to you. Just wondering how you're getting on? Have you had successful results? Fingers crossed for a long remission! I don't think you mentioned that you had any radiotherapy?

My 100 days is up on Friday. Had my pet scan last week and bone marrow biopsy on Tuesday. See the haematologist on 3 December. Think disease is still active based on symptoms but trying hard not to jump ahead of myself and wait for facts.

How are you finding the travelling? Is it you living in the outer Hebrides or have. I got you mixed up with someone else?

Regards, Lynda xx

Hi Haffygirl, I’m not the one who lives in the outer Hebrides, yes I had radiology though, I had to travel 80 mile round trip for check ups and treatment, except transplant which I was in for 4 weeks, my first week I could go and walk in the park then after that I was well into treatment. I was very tired when I eventually went home but slowly recovered making myself make bigger steps daily. Having a shower took me an hour.

Highlander the weights piling on! Eek!

Lifes good just got back from South Africa had a most amazing time , Safari, whale watching , wine tasting and moved accommodation every three days . I’m off soon to USA for another two week of sunny golf. I still have the odd tired moment but I listen to my body and rest if needed.

so glad I had the treatment my four month check up is on Tuesday but I’m staying positive that all is going to be well.

Sue 

Xx