Firstly I edited my last post as it looked like,I was,asking for medical advise but I wasn’t. I just seem to be putting my head in the sand regarding my current medical advice for my Chronic myelomonocytic leukaemia ('CMML') which I dont want to do due to my family and life commitments. Also I dont want to hear anymore negative answers as per my condition.
I expect most of us who have blood cancer or support loved ones get tired of hospital appointments,blood tests , scan, travelling back and forth and that I am just moaning.
I have,tried most things to relax but I dont have enough time in a day. If I was on a bus I would be ringing the,bell to get off at the next stop but I can’t. We dont know what caused me to have a Spleen infarc, or make my white cells to raise dangerously, why I have now had a small stroke despite numerous tests so why have more tests. Its not fair using the NHS resources when there is no cure for my type of blood cancer. On the positive side I am on chemotherapy with little side effects, on meds,for other issues connected to my Chronic myelomonocytic leukaemia ('CMML') .Nothing is straight forward just wish I would not bury my head in the,sand
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Hi @Bonny16
I’m sorry to hear that you are having some big challenges right now. It’s not easy when you’re in that space
You know none of us can offer medical advice.
I’m going to suggest that you speak to the @BloodCancerUK_Nurses to get some expert advice
I know it’s frustrating when your life is governed by hospital appointments. I remember when I was down either at the Haematology Clinic or for chemotherapy 11 days out of the 28 day cycle
My wife and I were clocking up over 1000 miles each month as it’s a 100 mile round trip to the hospital.
It was exhausting and even more so if needed blood or platelet infusions
That said the mindset I adopted was to see it as a necessary step forward to hopefully better health 
I did everything that was asked of me as I was so grateful that I was being so well looked after by my team and the NHS
The Consultant Team do amazing work and want to explore all possible avenues to make sure you and indeed all of us get the best possible treatment.
Perhaps looking at the MRI in that light might help as it sounds like you are a very positive person
Hope this reply helps and take care
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Hello @Bonny16, please don’t feel you’re just moaning. You’re carrying an enormous amount and after everything you’ve been through that exhaustion is completely understandable.
We do have some information on managing the emotional side of things, including some mindfulness videos, if any of it ever feels useful - though I know finding the time is its own challenge.
And if it would help to talk any of this through, our Support Line is there for exactly these moments - not just for medical questions, but for the sheer weight of it all, and the times that you need to talk to someone who just gets it. You can reach them for free on 0808 2080 888 (option 1) or at support@bloodcancer.org.uk.
Keep posting whenever you need to.
Ceri - Blood Cancer UK Support Services
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Hello again @Bonny16, I was really struck by your honesty and wanted to second what dear @DuncanB and @Ceri_BloodCancerUK have said about no need for feeling sorry when there are actually things to moan about.
Personally I love a good gripe, whether that’s here or with loved ones. Sometimes even to myself, in writing or something like primal screaming where I have a good shout into a pillow 
Better out than in, as my mum would say, and I agree these days. Holding onto negative feelings can let them swill around for longer I find, so how about just letting them out!
I hear your frustration too at all the testing, travelling, and awaiting results. I live with a few different chronic illnesses and it sometimes (often) feels like I’ve had to become my own health advocate, personal assistant, and occupational therapist all at once. It’s a lot to keep in mind and so perhaps it’s so wonder we end up frustrated. It can feel like there’s no break from it all, can’t it?!
Really glad your chemo is working and that you’re also grateful to the NHS for their marvellous work, aren’t they great? Their resources are for you as much as they are for anyone else so do please let yourself accept their care. Blood tests and checkups are a big part of us living well with these dratted blood disorders.
So keep moaning I say @Bonny16 and hopefully you’ll get some breaks from all this soon. Maybe it’ll even settle into a longer lasting, easier routine and not feel so frustrating!
Thank you for reply and advise. I will contact the team shortly. It may help. X
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