Hi all I’ve not been on for a while and I am really depressed and desperate. Since my treatment for non Hodgkins lymphoma my health has seriously deteriorated. My immune system has never recovered and popping to the shop across the road usually leads to some kind of infection. Last July 2024 I had a pre op assessment for an unrelated issue and was immediately called back to the hospital to attend A&E; no exaggeration I had to as the taxi to turn round and take me back that’s how quick it all happened. I was seen in A&E by an oncologist and hematologists as my platelets were at 7 I was there in A&E for 14 hrs having bloods repeated every 2 hours just to be told yep there not improving. This has lead to me being at the hospital twice a week every week since for blood tests they have slowly creeped up to 100 and I’m praying I can now go back on the surgery list as it was an op I’d been waiting for 8 years for. The hematologists have been at a loss for what’s happened as all my other counts are good and I’ve not had any symptoms. I had a full body pet repeated and there are a cluster of tumors in my groin and one on the outside of my right lung but no one seems to care about that and it’s just been noted in my file. I keep being told to look out for symptoms of lymphoma coming back but I never had any symptoms I was lucky and it was found by chance at my chest clinic. It doesn’t seem to matter how much I say to my oncologist or the nurses that I had no symptoms and I am scared as when I was treated it was in the later stages and I also had colon and bowel cancerous cells. I have been told that ive got a very high chance of it coming back and now my platelets are low. I finally got a diagnosis in February this year for my bloods and they say they think it’s Primary Immune Thrombocytopenia so my cells are mistakenly attacking me. I have no where or anyone to turn to and when I ask the doctors questions I get told there not sure or need to discuss my case with their team as it’s a complex history. Has anyone else had to deal with anything like this post treatment? I know I’m not alone but running out of hope and feeling deflated. Sorry for the winge but I can’t keep it together anymore and I feel like I’ve lost all the fight I had in me.
Thank you for taking the time to read this and any advice would be deeply appreciated.
Dear @KatQ,
Thank you for getting back in touch, I am so glad you felt able to write all this down, sometimes this in itself can be a huge help.
I am sorry to read the struggles you have had post treatment and now the added concern with the platelets. Please know if you wanted to talk things through you are welcome to call us on 0808 2080 888.
In terms of the immune thrombocytopenia, this can happen spontaneously like with any autoimmune disorder. Although it can happen post treatment occasionally. There are medications that can be used to increase the platelets and the condition can improve but it will require regular monitoring like you have already experienced. I am sorry you have had this added complication on top of already feeling low!
Have you spoken to the haematology team about how you are feeling? There are also other services/support we can signpost you to if you need so please do not hesitate to get in touch. We are always here.
I do hope those platelets behave so you can get your surgery ASAP.
Take care,
Heidi J (Support Services Nurse)
Oh @KatQ I am so, so glad that you felt able to reach out to our support forum again.
I did feel for you reading your post and @Heidi-J-BloodCancerUK has given you a far better response that I ever could.
I hope others will be able to share their experiences for you.
To me it sounds a scary, frustrating, depressing and desperate time for you and certainly not a whinge and I would also get to a stage when I felt I had lost the fight in me.
Please do keep posting and be very kind and really look after yourself