Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi. I was diagnosed with a brain tumour in May 2018 and after biopsies it transpired that I had CNS Lymphoma. Throughout the year I had had 3 rounds of chemo at my local hospital. They then referred me to UCLH where it was discussed that I have a stem cell transplant. I was told of the risks as in any procedure and after a while I agreed. I was able to harvest my own cells and return to have them transplanted back. During this time I had a fourth round of chemo.
The transplant went ahead and everyone at UCLH were pleased and I was due to be discharged 7th Dec 2018. I then caught a respiratory infection and the next thing I knew it was January 2019. I had been in Critical Care for 3.5 weeks.
I have been left with right sided facial palsy and was unable to walk or talk. I was transferred to my local hospital where I was promised support and physio etc. I was discharged on 15th January 2019 and was offered no support for 6 weeks. By this time I was able to walk upstairs etc. I still have facial palsy and am unable to work, drive or anything like before. This has left me in a very difficult place. My life has changed beyond belief.
I no longer recieve any support, so was pleased when I heard about My Macmillan. I have flashbacks and suffer from depression and anxiety which I want to change. I would like to hear from people who have been in my position and maybe we can support each other through what is and has been the worst experience of my life.
I send good wishes to all and wish you well.
Hi Jaffacake1 and welcome to our little corner of the Community and you have found a safe place to talk with folks who understand the journey.
Your journey sound rather familiar as there are lots of folks who have had a long post treatment issues.....you can see our stories by hitting our forum names. The SCT Treatment can life changing in both positive and indeed negative ways.
I had two Allo SCTs with cells from my brother, I had no issues following my first Allo in June 2014 but a long recovery following my second in October 2015
We have actually collected our post treatment thoughts in these two threads Life after a SCT - A Survivor's Guide and Late effects and problems
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area and I found my local Maggie’s Centre to be amazing.
Keep talking as we are around to help walk this with you.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi there! Goodness me, you've been through it! Do you have supportive family and friends? I think it's worse when there's permanent damage, in my case it's my sciatic nerve and I have constant altered sensation and footdrop (wear a splint) which has put paid to me driving and walking the dog and I have very poor balance so sleeping downstairs still. It does prey on your mind, like the monkey on the shoulder. Treatments are gruelling but stem cell seems the way to go and we get checked on regularly! I have declared no visitors during my recovery and have stayed in touch via emails, WhatsApp and Facebook. Is there a local lymphoma group? Cancer counselling like the HOPE course, anyone else with CNS version? what part of the country are you? There is a very good read on 'life after cancer' which helps put things in perspective. I think most of us lose our way....my husband says my brain is too full of thinkingness!
All the best,
Another day survived
Many thanks for replying. Thankfully I have a fantastic family. I don't think I could've got through any of this without them. I have a small network of friends but I get anxious when seeing them because of the way I look. Had to have an operation on my eye as vision is now impaired. Hearing too, have to wear hearing aid. Stairs are beginning to be a trouble again as pain in legs. I now walk with a stick as I lose balane easily, but at least I'm walking.
I live in Southend, Essex. I'm at hospital tomorrow and keep wondering if I should pop into the Macmillan centre there. I'm anxious about everything.
Best wishes to you
Hi Jane, please go in past the Macmillan Centre and talk with them.
I was in a wheelchair when I came out and it took 4 months to get back on my feet. You will see that my hearing is very badly damaged and I also have two hearing aids. Nerve damage in my neck be a problem but on the balance I am still alive and doing ok.
You do need to push the system to ensure you get all the help that is available ((hugs))
Jane....YES....call in the centre and find out what groups are available. Our centre offers 6 free treatments...reflexology, counselling etc. Physio run exercise groups, cheap time limited health club, book clubs, knitting groups. Craft days(•‿•)I went to a macmillan funded hope course and as a group of 8 we still meet up monthly and support each other. Good luck! Oh and there was a beauty day....more chatter, tea and buns!
Thankyou for responding. I too was in a wheelchair (purchased by my Dad), which I used when they took me on holiday in October.
I will go to the Macmillan Centre. Will keep you posted.
WOW! OK, thanks. This is just what I need. What part of the country are you?
Will keep you posted as to how I get on, thankyou.
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