Thanks everyone for your lovely comments. My temps seem to be settling so haven’t had any para for 2 days. Rash is still pretty bad, not too itchy actually except for my face. Hope it settles down soon. At least I won’t be seeing anyone when I get home. I also have diarrhoea now, which they say is Graft-versus-host-disease related.
Its all very tiring having gone through the transplant etc and then to get held back with this!
xxx
3 Likes
Great to hear from you @Summertime. Glad the itching is easing. I feel tired just reading about what you are going through. Is there anything that’s helping you to relax?
3 Likes
Hi @Summertime It must be so tiring, diarrhoea is draining anyway, literally !!!
Also having had a temperature and your nasty rash must have be taking their toll when your batteries must have been very depleted anyway.
I reckon self care and really being kind to yourself are in order and knowing we are all sending you virtual hugs xx
4 Likes
Hi @Summertime how are you doing now? How is the Graft-versus-host-disease? Is it responding to the steroids?
And @Lynn how are you doing now?
And who is in next? Xxxxx
2 Likes
I feel guilty because You’ve all had a much worse experience than me. Except for a lack of energy for about a week I was fine and went off to the seaside and then back to work. Hope you’re all recovering and doing better.
2 Likes
Hello @Franko, like you, I feel so much for everyone going through tough transplants ATM but I wonder if your story could be a great encouragement to people who are weighing up whether to have a transplant or not? Some people do seem to have a very straightforward experience of this treatment.
@Summertime, I do sympathise about the diarrhoea (which I had with an AST). The exhaustion of managing a drip stand in a tiny room…it really was the worst. I just focused on thinking every day that if I persevered they would eventually let me go home. It was August and my husband bought me one of those swinging seats ( a bit like a wicker pod) that he hung up in the garden. I looked at the photo of it every day and tried to imagine myself swinging in it!
1 Like
It’s amazing how it varies for different people isn’t it.
2 Likes
Hi All, I’m not feeling too bad in myself thanks. Rash seems about the same so at least no worse. Diarrhoea is still doing it’s worst…
They are saying if things settle I could pos go home early next week.
@ChrisCKW who do you see in clinic on Fridays? Where are you based? Do you have to go once per week?
@Coastgirl the idea of a rocking chair in garden sounds wonderful. Mind you the state of my skin, I am quite pleased I can away nail Iyar goes hopefully 
.
I am getting by sleeping lots, face timing lots, reading etc. really struggling with food so trying to have scandishakes to top up. Can wait to get home, nice Bath, own bed, nice food and being with my hubs xxx
2 Likes
Hi @Summertime
Food was one of the worst things, the care is lovely, the drugs are grim but lifesaving, but the food 
A couple of weeks it was for twice a week Tuesday and Friday, but it’s just once a week (apart from extras like bone marrow aspiration and line removal). I come to Addenbrookes and the clinics are held in the oncology/haematology day unit.
The clinic appointments are weird - they always say different consultants I’ve never heard of or seen! But when I get called in it’s usually with my primary consultant (Dr Andy King), though I have seen two others that I saw on ward rounds and once Dr Crawley.
The appointments never ever run to time and are usually 45-60 mins late and bloods have to be taken an hour before the appointment so that they will be available for the consultant. So usually there’s a lot of waiting around.
I did once come up to the ward about 3 Fridays ago but the staff nurse on duty wasn’t one who knew me and she told me if I wasn’t booked in I couldn’t come in. So I couldn’t say hi 
xxxx
1 Like
WELL HELLO Lovely people!! 
I am back in the land of the living! 
. Boy was it tough but it would only happen to me! Any one waiting to go in for a Stem cell transplant do not dwell on my post as my experience is uncommon. The doctors said there was less than 5% of this happening. I got my stem cells transplanted on 25Th September. Four days later I became unwell with rigours and chronic diarrhoea. Things went downhill very fast and I was taken to ICU where I spent 5 days but I don’t remember anything from the first 4 days. I went back to the ward but unfortunately the diarrhoea continued and caused severe skin problems. They were like acid burns 🥲🥲🥲 the pain was horrendous!!! The specialist tissue viability nurses got involved and they concocted a cream which helped until the diarrhoea subsided. I was discharged on the 29th Oct and was going to my sisters house in Co Donegal ( if any of you are familiar with Ireland it’s an amazing part of the country ) I was there 4 days and felt unwell one evening. I took my temp and it was 37.8 so I rang the Belfast help line and they said to go to Altnegelvin hospital immediately. It’s the nearest hospital in the north…… because Donegal is in the south and they don’t have NHS. Belfast where I had my treatment was 3hrs away. I got there and was seen immediately but had gone down hill within the forty minute drive. Cut a long story short I had fluid around my heart and developed severe sepsis.Had a line put in to drain the fluid. Had to go to the Cardiac theatre for that then into ICU. My son is in Vietnam and my family were advised to contact him to come home.
. I spent 6 days in ICU and at the minute I’m in the Haematology ward hoping to get home this week. I’m am very weak but getting stronger every day and Thank God every day for it.
Lynn Chris and @ Summertime I’m glad you all doing well albeit the hiccups along the way!!! I hope every one else is doing well too………. I’ve missed you all 
5 Likes
Well hello lovely @Danmar we have really missed you too, and what a time you had had in the meantime, it must have been really scary, plus having horrid side effects, and your trips to ICU’s.
I hadn’t appreciated that of course you haven’t got the benefit of our wonderful NHS services in Southern Ireland.
You have been through so much medically, emotionally, physically and practically that I am not surprised that you are very weak, It will take quite a time to build yourself back up, be ever so kind to yourself, you are a valued part of the Stem cell transplant gang. xx
2 Likes
Hi @Danmar
I’m so sorry you’ve had such an extremely awful time. Well done for getting through all that, yet sounding so chipper.
I had extreme diarrhoea, unrelenting rigours, sepsis and a heart muscle problem caused by either the chemo or the sepsis - but your experience is far more extreme. I hope you recover well from all this - I was left pretty weak from it all (particularly my legs) and it did take a bit of time to get moving again. But I willed myself to stand and potter around, and that helped.
I hope you can mentally process all this trauma, and put it behind you fairly soon. I found talking to friends about it helped - the telling and retelling of the events seemed to help place them in the past so that I could move on.
If it helps you to know - once I got home and got walking outside (after a few weeks) my recovery was surprisingly quick and I soon felt amazing, despite all the horrors that went on. Wishing you a speedy recovery physically, and from all the trauma.
All the best
Fullofbeans
3 Likes
I’m really glad you are back in the land of the living. However, you’ve had quite a journey to get here haven’t you!
That all must have been so difficult for you and everybody around you.
Take good care of yourself. We’ve missed you to!
3 Likes
Hi @Fullofbeans you have also been through a rotten time and you have done so well with your recovery especially since getting home, doesn’t getting home really help, there is nothing like your own home is there.
Be kind to yourself and take care.
3 Likes
@ChrisCKW ahh did you, that would have been nice. Maybe we will get to meet in clinic then. I dont know when I will get home, it feels like 2 step forward 1 back. Hope you are beginning to feel a bit more yourself xxx
2 Likes
@Danmar just great to hear from you. I have been thinking about you so much, this transplant procedure is just so unpredictable and we all seem to have different indue to get over. Your story sounds very scary. I hope you are coming through it now. Take your time and look after yourself. I have been diagnosed with Graft-versus-host-disease stage 4, which has been a shock. I think I was focused on the transplant and didn’t see this coming. Lots of love xxx
3 Likes
Oh @Summertime 2 steps forward and 1 back must be frustrating for you, but that is still progress just perhaps not as quick as you would like.
Perhaps it will take time you and your body have been through so much.
Sending even more virtual hugs
3 Likes
So sorry to hear about your stage 4 Graft-versus-host-disease, @Summertime. You must be really feeling it, on top of everything else. I hope now they’ve identified and graded it, they can get cracking with reducing its impact on you.
Hope you are comfortable and being given everything possible to help.
All the best
Fullofbeans.
3 Likes
Got home late last night, feeling very tired and weak xxx
4 Likes
Oh @Summertime at least you are home.
I bet you are feeling very tired and weak.
Be kind to yourself and really look after yourself. Virtual hugs xxx
2 Likes