Worry about side effects of own stem cell transplant
I am awaiting my stem cell transplant following harvesting. Consultant has painted a very difficult time in hospital with the chemotherapy treatment and
After transplant problems.
Best Answer
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Hi Glynis,
My husband had his SCT in October 2021 and spent 3.5 weeks in hospital and we are approaching day 100. The pre-conditioning plan is individual for each patient and experiences there after are individual but I can imagine your worry.
I have asked him what advice/experience he would like share - he was also quite anxious and worried ahead of starting his journey. The consultants will often describe things in the worst possible terms. I would strongly recommend using all the resources Anthony Nolan offer on their website as they explain everything in detail and with great care - I have pinned it to my website favourites and visit it often!
My husband suggests taking it one day at a time as not every day is difficult symptom wise but on the more challenging days he listened to music and watched movies - things to help distract. Whilst in hospital we put up photos of family and our dog to help focus the mind and to help him stay as positive as possible.
Once out of hospital we have found that not everyday is tricky and we celebrate these easier days!!
Wishing you lots of best wishes and hoping all goes well.
Answers
Hi Glynis,
Thanks for your post - I'm Claire from the Patient Services team at Anthony Nolan. I'm so glad that you have found our Patient & Families Forum, it's a friendly and welcoming community with a wide range of personal experience and insight.
I wanted to let you know about the information on our website that you might find useful at this time: https://www.anthonynolan.org/patients-and-families/having-a-stem-cell-transplant
I'm sure other patients will respond too - but please feel free to call our helpline on 0303 303 0303 (9-5) or email us at [email protected] if we can help any further. We are closed over weekends and on Bank Holidays, but please take a look at https://www.anthonynolan.org/patients-and-families/get-support-us for information about the other support you can access whilst we are closed.
If you have any specific concerns, I recommend that you speak with your transplant team - they will be happy to talk through the process with you and help to put your mind at ease.
I hope this helps.
All the best,
Claire
Hello Glynis
My name is Michelle I am one of the community online champions, here to support patients and family members during treatment. I am also a stem cell recipient.
Do you have specific concerns around your time in hospital? After your discussion with your consultant.
It sounds as though your consultant has given you the worse case scenerio, but please be assured that this is not always the case. Everyone's journey is unique and it looks different from one person to the next.
Resources from Anthony Nolan are very beneficial. I made use of all of them.
I would say, from my experience, being in the best emotional state possible leading up to addmission is very beneficial. Have discussion with you nurse specialist to ease anxieities or uncertanties. Having open and honest dialogues with those who will be caring for you will help massively. Do you have family/friend support?
Initialy, you will be in isolation, preparing your self for this period is a good idea, having things to keep you entertained and engaged for short periods during the day will help distract you and fill up time.
Having home comforts can help too and having a plan on how you want to stay intouch with family and friends will help reduce any anxieties around isolation or loneliness.
Please let us know if you have specific areas of the hospital stay or treamtnet you want to discuss.
We are all hear to help and support you. Other online community champions will also have good advice and insight around their hospital stays.
Best wishes,
Michelle
Hello Glynis
I had a donor stem cell transplant in august 2020. I agree with what the others say. The doctor will tell you all eventualities and it doesn’t mean it applies to everyone we are all individual and are treated this way . I found recording conversations I had with the doctor useful even did this when I was inpatient.
It really varies. I met one lady who used her own stem cells in same time as me and was in and out within a week. I think when you have autologous stem cell transplant it is generally shorter than a donor stay.
I found for me to take each step day by day. I put up lots of pictures on pinboard of family and friends, brought in few home comforts my pillow and duvet, nice product to spray my face, lavender for my pillow and toothpaste without SLS (the fizz). I watched films spoke to family on telephone and listened to music.
If you speak to your specialist nurse they done it all before and wine was very helpful.
If you have anything specific I’m sure we will all do our best to help.
Take care
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