Thank you all for your kind words. Mum seemed to have got confused and decided that the funeral was Tuesday and cancelled her haematology appointment today!! I don’t know if this is her avoiding going to get the news, but anyway, we’re now going the week after
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Hi @Dinonick nothing that you can do about your mum cancelling the appointment, at least she has one the week later. Take care of yourselves
I’m glad you won’t have to wait to long! 
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@Erica and @Nichola75 thank you both. We’re ok, mum seems to have cold today, but hopefully that’s all it is. I know I’m over worrying as I went back to check on her before as she sounded awful on the phone to find her and dad sat at the dining table eating their tea. Dad does nothing (he’s mid 80s and quite immobile) so mum had sorted it all out and wasn’t as bad as I feared. Brother coming over for Mother’s Day tomorrow which she’s looking forward to,
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I hope you have a lovely day celebrating Mother’s Day. I’m glad they are both doing ok. It must be so hard not to worry. I’d be the same! X
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@Nichola75 and @Erica we saw the consultant today. Mum’s bone marrow is showing signs of scarring so they are confident it is myelofibrosis however he says the scarring isn’t too bad at the moment and as her weight loss and night sweats seem to be under control at the present he’s just going to see her in a couple of months assuming todays blood test was ok (they had no one at the hospital to process onsite so were having to send them to another site). She point blank said to him ‘I thought you were going to say I had a year to live’ and he laughed and said ‘gosh no, not at all’ … so we feel it was a good day. She accepts she’s going to be tired and can’t do what she used to, and that’s ok. Thank you both again for all your support and good wishes, it really has meant the world to me xx
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Thanks so much for the update. I’ve been thinking about you. That sounds really positive and I’m pleased you both feel happy with the outcome. Yours mums comment did make me chuckle 
You must feel very relieved! Keep us updated X
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Good news @Dinonick and I am glad that your mum said what was actually on her mind and that the reply was reassuring.
Your mum’s tiredness might be what many of us call fatigue and she will learn how to manage it, pace herself, what causes it and how to work round it.
Personally I do not do evenings and I am prone to a nap occasionally. However fresh air and appropriate exercise can sometimes help. I go for a walk and it can be varying lengths depending on how I feel. I am a morning person.
My fatigue can be brought on by what personally stresses me, or emotionally, physically or practically overdoing it.
How are you and what can you do for yourself?
Take care and be kind to yourselves
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Turns out the tiredness was covid … she was adamant she just had a cold, dad was then really quite unwell and although a lateral flow was negative we did a pcr last Tuesday. He finally got the positive result today (in the meantime I tested positive on Friday). They’’ve both done a LFT today and mum’s is very very faint but positive, dad is still quite obviously a line. Never rains but it pours …
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Oh @Dinonick it never rains but is pours, this is a deluge.
How are you all feeling and doing?
Look after yourselves and take care of each other
Hoping you all are doing ok? Sending extra special wishes X
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Hi, a few questions about my dad’s myelofibrosis - he had his 81st birthday meal last week with family at the pub. He had Covid in January, quite mild but the effects took ages to calm down and his health took a dip. His cough has now cleared up, but he can’t walk far without getting breathless. He gets lightheaded when he stands up, has lost around a stone in weight and sometimes gets diarrhoea and slight incontinence. Apparently his lungs, heart and liver are not working properly. I think the incontinence affects his confidence to go out, although he eats well and is quite happy in himself. He had swollen ankles, which the GP gave him tablets that helped.
Mum is really worried about his weight loss though. What is frustrating is that it doesn’t feel that the treatment/advice is joined up. For example, he was offered a heart scan on the same day as a blood test so had to turn it down, which was some weeks ago with no sign of being offered another, and every time he needs a GP appointment to discuss blood test results or another new symptom he’s just offered an appointment in several weeks like everyone else. It doesn’t feel like the hospital and GP talk to each other. Its hard for me living some distance away as I get the news second hand from my mum. What would be helpful is a prognosis and some advice about the incontinence, e.g. is it the condition or the medication causing it and what solutions are there? Sorry if this sounds like a moan…
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Oh @Fluffycat you certainly did not sound as if you were moaning to me.
Covid can really take it out of you and the after effects can be long lasting.
I had the Non Covid lurgy at Christmas and I still do not feel right.
Yes, incontinence can be scary, unpredictable and cause a great lack of confidence etc. It might be difficult for your dad to talk about incontinence.
I think it is so difficult for family members seeing, but not being able to do anything for their loved ones.
Yes, unfortunately perhaps medically things are often not ‘joined up’. It is just how it is. GP’s are often the people who refer to different agencies that are not joined up.
Perhaps all of you write down all the questions you would like your dad to ask at his next medical appointment, it could be done by post, over the phone or virtually.
The Blood Cancer UK support line is there for you on 0808 2080 888 and I will copy your post to the Blood Cancer nurse advisors @BloodCancerUK_Nurses
We are here for you it is so hard being a family member, take lots of care
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Hi @Fluffycat thank you for taking the time to share this. May I ask how you’re doing? It must be so hard to be living a distance away and to not perhaps hear the full picture. It sounds as though your dad has had a lot going on recently. Erica has given you some good suggestions- it’s so important to persist and get the answers you need, though I appreciate this isn’t always easy.
There might be an NHS continence service in the area, so it may be worth asking the GP about referral to one if available. Age UK also have some information on incontinence, just in case that’s useful at all: Urinary and bowel incontinence help and advice | Age UK.
Please don’t hesitate to give us a call if you’d like to talk anything through at all.
Best wishes,
Tanya.
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thanks for the advice about writing down my questions for dad to take with him. Good idea.
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thanks for that advice about NHS continence service.
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My dad was told a few days ago that a few leukaemia cells were found, but they felt he was otherwise doing quite well. Is there any timeline about how quickly the leukaemia could spread? He was offered a type of chemo instead of his normal Danazol and he’s going to read the info they gave him before deciding.
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Hi @Fluffycat You ask how quickly the leukaemia might spread and I think it is so individual and it depends on so many things which is why we are monitored regularly, but it is a question for your dad’s medical team (if they can even answer it).
Your dad should have more information when he gets to grips of the info he has been given and it will give him more questions to ask.
Please let us know how he gets on.
Both of you please look after yourselves and if either of you .would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
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