Blood cancer

Hi everybody, I started to get sick about 2 years ago. First up was rheumatoid arthritis which hit quite hard. My Consultant was brilliant and got it under control with medication. She said that she was not happy why this came on so quickly and was concerned something else was going on. I was then referred to a haematology Consultant who started loads of tests.
Not long after that I fell over while waiting for my friend and felt awful so I went home. About a week went past and I still felt bad so rung the GP, she really got on my case and said quite firmly “you have had a stroke, go to A&E” so I did.

So it turns out I have a very rare blood cancer that has a reversed gene called JAK2 which tells each blood cell to keep reproducing and causes strokes. Now I am on low level Chemo (ongoing) and I have regular tests for red cell levels, if things get bad, I have a pint removed which is an instant fix. My life is changed but I’m happy enough as I have met some incredible people,

The stroke bit is odd a year down the line. I tell people that the only thing I cant remember is the answer to the question you have just asked, it arrives a few minutes later. Very odd to live with as I need help with forms and the like. Also I really do have issues remembering what is said, like “lets have coffee on Friday at 10” I say OK, and the information is gone ??

I have to say that that my life is not challenging, just different. My specialist nurse says “just take one day at a time, good days keep fit and do jobs, bad days chat to mates and drink tea, all days keep focused and beat depression”.

My Oncology team are doing an amazing job of getting me through covid and stopping the strokes and I cannot praise them enough.

Thanks for listening…

@JAK2 Hello and welcome to the forum. Sounds like you are having issues with short term recall, I have limited short term recall which makes everyday a challenge to remember things, even if I write notes, I forget to look at the notes, and even if I do see the note, I’ve forgotten about it shortly after. I do memory exercises everyday, that’s the best way to get it going again. The exercises are rather pleasurable actually, and not exerting. It will take time, but in the end, it can improve even better than before. I hope you find the forum useful, and we are here to listen and respond.

Hi Rups, yes that sounds about right. If someone asks me something I’m not expecting, all I have is a blank sheet, and I just laugh as it seems so unreal. Sometimes I ask for a prompt to get the word or I just move on to something else, and then it arrives. I do lots of brain work during the day designing bits and bobs in my little workshop which keeps that depression nasty away from my door. However I use the Internet calculators to help me which is fantastic. Brain exercise is not something I have heard of, perhaps you could point me in the right direction for that please.
Kind regards

I’ve been working on the free exercises at BrainHQ, I also just type in ‘free memory exercises’ and try different ones to find ones that suit me. I have a few apps on my phone that keep me occupied at night, mainly to do with spelling, from the British Council. I also play Match A Leaf which is a memory card game. Another exercise I do is selecting three things to remember, and trying to hold those in my mind until I complete them. At the moment I have to rely on associative memory a lot, so things that remind me of the other thing. When I say, I have limited short term recall, I have improved it over the year by doing memory exercises. The first few months out of hospital, I had no short term recall at all, and like you, a few minutes later my mind was completely blank. It’s improving gradually. It does improve but requires work.

I’m glad to hear you are cracking on with projects in your workshop, you can use that as a means to do memory exercises while you work, but be careful, it can produce fatigue, so only do a few at a time. The reduction in my short term recall drives me batty, to be honest.

I’m getting a tad concerned as this is not going away. I now live by myself in a Flat with red pull cords and an “I’m alright” button. I have a carer come once a week to check I’m OK and fill in my calendar (memory) so I don’t miss anything.
I can waffle away for ages without issue, and to be honest, I am just normal until that is, I get asked a question… The process of getting that information is just broken, even replies to easy questions are just not there. Sometimes the information is delayed and sometimes I just give up and move on.
I search for information on this and I just get “short term memory issues” but if I’m not asked a question, I don’t have those issues.
I think I had another TIA a few weeks back and got a lecture from my Consultant on why I should go to A&E if that happens. The thing is, I get depressed at the thought of another 5 hours in A&E, so I take a few painkillers for the headaches and just feel wiped out for a week or so.
The Consultant said that they want to do tests to make sure there is nothing else going on, so at least its moving in the right direction. I just get a bit down as it seems to be getting worse not better as everyone tells me going to be.
Sorry about my woes, I’m sure you have enough of your own. I just wondered if you had a suggestion on where to get more information on memory recall issues.

Kind regards