So was diagnosed newrly two years ago on daily injections to prevent clots but had three n as ststed had bleed on brain n left me with a stroke which still recovering my memory awful n i now also have absent seziures. Here to chat if anyone would like n not just anout the cotb loke intrests hobbies gaming photography archery target shooting. Just need people to chat to. Im single disabled parplegic n no one to turn to im living with my neice st moment as awaiting independent living of my iwn… Message me
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Hello @Mal-T,
Welcome to the Blood Cancer UK forum. Thank you so much for posting and telling us a little bit about yourself.
I am sorry to hear about the complications from the blood clots. Are you getting physio and support for your stroke recovery?
Hopefully you will be able to move into a suitable place of your own soon, and be able to continue your hobbies. Unfortunately, I can’t comment on gaming personally, (my kids have an xbox, that’s all my knowledge on gaming!) but I do enjoy photography, mainly landscapes and nature. I have never been comfortable with doing portraits at all.
I am sure there will be lots of support for you through this forum, but please do call our support line if you wish, for any advice or support.
Take care.
Kind regards,
Heidi.
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Hi @Mal-T a great big welcome to our forum and thanks for telling us about yourself and what has has been has been happening to you.
I am sorry to hear about your stroke and your rehabilitation, it sounds as if it has been a very tough time for you.
I was fascinated to hear about your interests and hobbies, far more interesting than mine which is mainly music anything from the 60’s on.
I hope you get your independent living soon.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
I look forward to hearing more from you, look after yourself.
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Hi @Mal-T
I bet you are really excited about your independent living. Probably a little nervous about settling in too. Will you have neighbours with their own special needs and a social space where you can meet or is it an adapted space in the community? Is it close to where you are?
The internet , library and Citizens Advice are good for finding out about local groups when you get settled. I took my Dad to an offshoot group, called Speakability, it was for those stroke folk who had not regained speech and was fabulous. Friends for life. My Mum was a Stroke Assocaition volunteer but the Speakabilty Group was ideal for them. So many activities, visits and lunches out, they were always out and about.
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How are you doing @GrandmaJo ?
Look after yourself
A few ups and downs recently. I have some heart rhythm problems after Covid. Considered a Long Covid problem but seem to be shuttled between the hospital and the GP. The GP feels I should be seen in the atrial fibrillation clinic but hospital admin keep bouncing it back to the GP. I am adjusting to it and learning how to minimise it. I had hoped the Sotrovimab would protect me.
This all was pushed into the background as my fab husband has been given a kidney cancer diagnosis. Caught early and very treatable but sonetimes it all feels like pushing that big stone uphill!!
We have been able to come away on holiday and sun, sand and red wine are stabilising us right now. 
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Oh it must be so frustrating to be pushed from pillar to post @GrandmaJo
I and my husband both have atrial fibrillation, me post diagnosis and we have both learnt to live with it.
We luckily have not had Covid.
I am sorry to hear that your ‘fab husband’ has kidney cancer, but as you say luckily caught early, it must have been a tremendous shock and brought up so many emotions for you both.
I bet you both needed some sun, sand and red wine to recharge your batteries, look after yourselves and spoil yourselves.
Please keep posting
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Grandma Jo here!
We have bounced back. The holiday was just the ticket.
AF is so much better if I avoid sleeping on the left hand side. Easy to know but not so easy when one is a natural wriggler in bed!
We will live for my husband’s kidney scans, once every three months. Each time we will know if we wait another three months for the next scan or if he is due for an operation.
All of us are waiting for tests one way or another! Perhaps we should have a club name- ‘The watch and waiters?’ ‘ The Time off then Time on folk’.
Nothing worse than waiting for appointments or results. The name needs to be snappier. I am not good at this.
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Oh, I don’t know @GrandmaJo I think you are rather good at snappier terms for us W&W’ers, you are so right it is that never ending roller coaster of emotions, a never-ending cycle and yes, the waiting for tests, appointments and results.
The club none of us wanted to join.
You also raise a good point that it is not just us blood cancerers, but also so many other health conditions.
We can also have dual roles as patient and family member, a double whammy, sometimes on conflicting roller coasters, I am getting giddy just thinking of it, how do we cope???
Take care, keep posting and keep spoiling yourselves
I am so glad that your holiday was just the ticket and what you both so badly needed