I’ve now had a date for my SCT, provided my heart scan is ok & my donor & myself are both well, I go into hospital on the 6th July & have the transplant on the 12th. I only found out about the date on Wednesday! I know a number of you have been through the same thing, but if anyone has any advice / tips I would be grateful. I know I must keep positive & it will be a long & difficult time. I have a really supportive family especially my husband, son & 2 daughters.
Thanks & best wishes,
Shirley
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You will probably get lots of practical advice from others. Some people I read recommended crafts etc but I couldn't concentrate on them. Recorded radio programmes or bbc sounds I found useful. For me the physical effects were hard but my mental state was terrible. Eventually I was prescribed anti anxiety and antidepressants. With hindsight I should have had them sooner. If you or your family notice you struggling remember antidepressants can take over 2 weeks to take affect
I have brought some puzzle books & some craft stuff. I’ve also downloaded some films to my iPad, but I did wonder if I would be able to concentrate. I’m also planning to take a digital photo frame, with family pictures.
I’m glad you mentioned the antidepressants, something for us to watch out for. I’m sure I will get very anxious.
I have to admit that what got me through much of it was watching TV, even rubbish daytime TV and repeats of detective shows on ITV3! Radio took over when there was really nothing on. I took books and sudoku puzzles but I couldn't focus on them.
Be ready to have the lowest energy level of your life. Even having a shower was a huge effort. Try, if you possibly can, to walk around your room as much as you can manage - I didn't do this enough and could barely make it upstairs when I got home.
The intensive chemotherapy is really tough, and I had quite severe sickness and diarrhoea. The transplant itself is the easy bit!
I felt as if it was going on forever and I became very anxious when my blood counts took a long time to recover, BUT it takes longer if the original disease is Myelofibrosis so if this happens don't despair.
It sounds like you will have a lot of support at home and that makes all the difference. Keep posting here if you have the energy. Good luck - we are all cheering you on! Jennie x
Hi Jennie, thanks for your message, I know it will be a tough call, but it’s useful to get words of advice. I wii certainly try to walk around if I can. I hadn’t realised MF took longer to recover from!
How are you doing now? I have read your previous posts. When was your transplant, I’m thinking it was around September? Also how long were you in hospital for? (I know we’re all different) & I’ve been warned I’ll probably have to go back in at some point!
I was in for seven weeks for the conditioning and transplant. A couple of months before this, I had seven weeks in for "debulking chemotherapy," which I think most people don't have. I had the infusion of stem cells on 1st September - that's called Day 0.
I was told that MF patients take longer to recover the blood counts because the fibrosis is taking up space - the donor cells have to sort of work harder to establish themselves. They seem to be most concerned about neutrophils and as soon as they reached a certain level I was able to go home.
I was also told that most people have to be readmitted at some point, usually because of infection. That hasn't happened to me yet, but even ten months on I still have to be careful to avoid infection. For example, no gardening, no indoor socialising, no unpeeled fruit etc. I'm frustrated but used to it now.
Hello Shirley, , good luck with your preliminary tests and a big shout out to your donor who I also hope is in good health for the big day. My SCT journey is well documented here but I recall the actual Transplant process went reasonably well for me overall. I was ready for it 100% committed, no half measures. You mention being positive which is true but tied into that is self belief and trust in your care providers. Mine was absolute.
It's quite a challenging regime but all doable. I made a conscious effort to get out of my bed during the day and change into day wear. I almost wore a rut in the floor of my room trying to keep myself active when I could. I took a couple of books to read , don't think I had a Kindle then. I had a portable dvd player and watched a few films on and off. I listened to music quite a bit.Tiredness is inevitable along with periods of boredom but then you rest up.
I wore an eye mask during the night to block light from above the door and ear plugs might help if you can wear them , it's surprisingly noisy in most hospitals even on an isolation ward. I took my own kettle, tea bags , cup etc and had a fridge in my room which was great.
They usually have ice lollies on the ward because your mouth may become sore , ,it takes you back to childhood a bit but the relief is fabulous. I bought a few boxes of lollies to restock their freezer.
I was very lucky in that my wife was able to stay close by in hospital accommodation so was on hand to help me wash etc and provide much needed morale support. The nurses didn't mind her being there because they were busy anyway. There was a microwave on the Unit and my wife was allowed to do me some soup once she a signed a disclaimer ! .
It's been over 7 years so I'm struggling to recall my time during the actual Transplant period of 4/5 weeks but I remember vividly those few weeks and then days leading up to admission. I hope you dont mind but i thought I'd share a poem I wrote during that period which sums up how I felt.
THE GIFT
I feel as must a soldier about to march off to war,
My bag's packed up, strapped tight and I'm all clean shaved and the like,
My spirit's high and I'm feeling good inside,
And though my adrenaline courses my vien, I observe an inner peace,
It's the kind of inner peace of a man :
- Who has gazed deep into his soul,
- Who has made peace with his past, present and future,
- Who has accepted and now embraces his destiny,
SAY !! What greater GIFT to send you on your way to fight,
Thanks. . It helped me to cope with my feelings leading up to Transplant by trying to get a myriad of thoughts and emotions out and express them on paper x
I have an eye mask, but I’m not very good with ear plugs, I also have some ice lollies & caffeinated tea bags ready, as they only have decaf at the hospital.
I live about 5 miles from the hospital, so it’s handy for my husband to visit. I know it will be tough for all my family.
It’s good to hear from people who have been through the process.
That's wonderful that you are allowed a visitor. Southampton had a strict no visitor policy (although I don't know if that's been eased now the pandemic seems to be receding). I didn't see my husband for 7 weeks, which was tough!
Wishing you all the very best. Coincidently, I also go in for my SCT on the 6th July and stem cells on the 12th! I will be having it at Manchester RI. Feeling somewhat daunted. Onwards and upwards. xx
Good luck to you also Ekkles, , I had my SCT at MRI and couldn't fault their care, dedication and expertise. They saved my life for which I'm eternally grateful. The ward 44 top floor was being refurbished a while after I was an inpatient and I haven't seen it since because they separated it from the general Haematology and Day Unit which I still attend every few months on the 2nd floor. I was in room 18 overlooking the car parks by Marks and Spencer and it was entertaining watching the merry go round of folk coming and going, also remonstrating with parking attendants.
My wife got most of our meals from M&S (mainly after I was readmitted) so it was handy if a little costly.
Ah well Kathy , , although I still attend I was moved over to what's termed the late effects clinic which is Wednesday afternoon, , but I was a Thursday guy for a long time. I would of welcomed a chat with you, , ,I don't know anybody nowadays because of the time lapse both from my SCT and between appts now although a small number of staff remain from my 'time'. I will be thinking of you in the coming weeks and please believe you will come out at the other end, , it's surprising how reading posts such as yours and Shirleys triggers some memoriesof my experience some of which I'd long forgotten.
Once again all the very best and if you have any questions going forward please feel free to get in touch.
Thanks Jenny for the well wishes. I have been following your SCT updates and your courage and resilience has been inspiring. I hope you continue to gain strength and health. x
I can’t add anything to what my fellow transplantees have said about the process once admitted. The only thing I would add is to make sure that you stay well before you are admitted. I basically isolated myself in my bedroom for the whole week before admission to ensure I didn’t pick up any nasty bugs. It als kind of prepared me for the isolation in hospital a bit. Good luck and fingers crossed it all goes smoothly. Garry
Had mine at 58. 12 years ago. My cousin was assessed for SCT at age 70 but rejected as his heart/kidneys weren't up to it. Have spoken to people older than you who have gone through it. Age makes it riskier but general health is most important. Was it an SCT specialist who said about your age? I ask as back all those years it was a Haematologist who told me 'SCT was unproven' and a specialist that helped me go forward.
Chris (non Jedi version - indeed Princess Leia version, with lady stem cells))
I suggest you ask for a second opinion on that. I turned 61 while in hospital. Another member here has just had an SCT at 70. Don't rely on the opinion of just one haematologist. Perhaps see if you could consult with Guy's Hospital.
Shirley, good tips here already so I will just add a little.
Its a tough ride but worth it. Had mine 12 years ago aged 58 in London. Initial chemo was hardly noticeable but last few days of conditioning extremely unpleasant as you have to deal with multiple conditions like sore throat, 'dire rear', temperatures, feeling sick, headaches etc all at the same time, as WW3 goes on inside your body preparing it for the new stem cells. Some find it less taxing, as we are all different.
Be positive. Be a person not a patient. Your bed is for sleeping in and using when you need it. Spent most of my day time in a comfy chair. Shower every day (so refreshing), sometimes negotiating a slot between the various drips/infusions you could be plugged in to most of the time. I played music and watched a series that could be dealt with in bite size chunks rather than films (West Wing for me) so if I fell asleep I could reset easily!
There are many here who have been through this and I look forward to you joining this motley crew to offer your advice once you have been through it.
Best wishes
Chris
(non Jedi version - indeed Princess Leia version, with lady stem cells)
I think we did a few years ago, but gather it's probably not feasible as my wife has only one kidney now, no spleen, and nearing State pension age. Mostly asymptomatic except for the anemia she now has some symptoms from.
Her age if she's in her sixties would not be a barrier. I imagine not having a spleen could be an issue but on the other hand, my spleen was a bit of a nuisance as it kept gobbling up my blood cells as I was recovering. I don't know enough about kidneys to comment. My point is that it could be worth asking an MPN specialist.
Best to you and everyone who is facing SCT. A long and difficult road but the prize will be well worth it. Keep us all informed of your progress. Best.
very best wishes Shirley. I am waiting for confirmation of the date for my transplant which should be around 20 July. I am having mine at Kings. Will be thinking of you.
wishing you all the very best. I am hoping that you will be one of the members giving me sound advise as I head in for mine in the not so distant future. Thinking of you. Penny
Wishing you strength and courage as you go into your transplant tomorrow. Have faith in your decision and your care team. Sending you prayers and positive thoughts. You've got this!!!
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SCT go ahead
BMB date arranged for 31 May
