Hello again, I’ve been quite recently because I’ve been very stressed out over my OH and his Chronic myelomonocytic leukaemia (CMML) and my own fatigue is worse now than ever as I’ve been up and down to the hospital iand suffering from bad dreams or insomnia.
I’m worried constantly that any time he says something is wrong it’s the Chronic myelomonocytic leukaemia (CMML). This week he’s said that he’s been having heart beat misses late at night, and now one ankle has puffed up and he is hobbling on it, I’m terrified that it’s due to venous insufficiency and he’s got constant pains in his wrists.
Ok so your ankles can swell up for all different reasons but as his blood isn’t working properly could this be the cause? The last time this happened was when he was in hospital a month ago but I don’t think anyone was interested in it there. This hospital is dreadful, with a few exceptions they’re unprofessional and inattentive so I’m not sure if anyone took notice of this.
He’s starting AZA on Monday and I’m freaking out about everything. Could the issues be that his Chronic myelomonocytic leukaemia (CMML) is galloping? This is on its own frightening. If I raise these concerns will it prevent him from being treated. Or is this totally unrelated?
Oh @Hellodolly I really felt for you reading your post.
These fears and questions really are for your OH’s medical team.
But I am worried about you as I felt completely drained just reading your post
I am not a medical person but I am not surprised that you are frightened, fatigued and suffering from bad dreams and insomnia, your mind seems to be going on a rollercoaster.
I just find hospital appointments exhausting
Do you think that you might benefit from seeing your GP to see if they can help you.
Perhaps another thing that helps me is to write down with my OH is all his symptoms and their severity.
Then my fears questions and practicalities.
Please really look after yourselves, be very kind to yourselves and keep posting
Another new symptom petechia and pain in one foot, incidently his platelet count on Monday was 12 which was a drop from 16 5 days earlier, I have taken his temperature for the last two weeks and he is constantly running over 37 but says that he doesn’t feel hot, and has had several blood tests done but he has not been told that he has an infection
I had a visitor today so haven’t had time to do anything but there’s a few things that I haven’t disclosed before about us, I’ve had secondary progressive Multiple Sclerosis for about 10 years now and my mobility is terrible I walk with a roller, and suffer from a number of typical ms symptoms, my OH may be on the autistic spectrum so he doesn’t always think logically and often thinks like a child, and he has suffered bouts of depression since the 80s, neither of us drive and we have lived in an area since the 80s that is like the Bermuda Triangle, with no local services not even a post box within close walking distance! We both have other health issues as well.
We’ve needed help for years but he never thought we did so I couldn’t reach out for it without him participating it would have been a waste of time. Unsurprisingly my own health has had to take a back seat, but this is not unusual as it always has done so, even when it was quite serious and his issues are completely trivial.
Over the past few years I’ve found myself having to act like I am mummy and he is the child. But because of this diagnosis I can’t do what I know he wants and sort out his problem like I always do, not this time.
I’m not an educated person but I’m not stupid and have usually got good instincts and common sense. But my oh is better educated than me but seems lacking elsewhere, he has never read a book and will not read anything given to him about Chronic myelomonocytic leukaemia (CMML) he won’t even read the letters from the hospital properly, this is why I’m having to use this forum to get the information that I need to try to help him.
I’m terrified that I won’t be able to get the help that is needed. Right now I’m concerned that these symptoms he’s having are more serious than he is thinking!
Oh @Hellodolly it must have taken courage to write your post, thank you so much.
Yes, it must be so, so hard for you and I really honestly think you are doing a brilliant job in very difficult circumstances.
I managed to leave school with only one or two O’levels. but the best attendance record.
Who cares for the carers?
You say, unsurprisingly, that your health has had to take a back seat, perhaps just try and do something nice for you occasionally, just to build your battery up slightly, it cannot run on empty.
Be kind to yourselves and please do use our forum to say what it is really like to be you. .
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Please do keep posting and take lots of care
I’ve just caught up on your posts @Hellodolly, and like @Erica has said, I’m glad you felt able to share how things have been, and how things are for you know.
It’s sounds like there are lots of challenges that you are facing. It’s difficult of you haven’t got anybody you feel you can contact at the hospital as they are the the ones best placed to answer your questions about your husbands symptoms.
It may be worth giving the helpline a ring so you can talk things through. Perhaps before his chemotherapy tomorrow so you are clear on questions you need to ask?
Please do take good care of yourself. You sound exhausted and as hard as it is, try and give yourself some time doing something that helps you to relax X
Thanks to both Erica and Nichola for your response. I feel pretty bad about having to discuss matters other than blood cancer here but our circumstances are making things more complicated. Worse still is that my oh doesn’t know he’s on the autistic spectrum and doesn’t recognise that he’s different from others and I can’t say anything to him because he won’t believe me and it won’t make anything better, particularly now.
I’m still trying to navigate through this forum and only hope to post my comments and questions in the right category. As you can imagine I’m full of questions and comments as this is all so new.
Hi hellodolly
Dr. Daniel Wiseman of the Christy hospital is a foremost expert on Chronic myelomonocytic leukaemia (CMML). He posts interesting articles about our Chronic myelomonocytic leukaemia (CMML) on U/Tube.I was diagnosed with Chronic myelomonocytic leukaemia (CMML) exactly one year today after about 18 months of blood tests and finally a bone marrow test. I was shell shocked/dumbstruck. I am 74 years old and my blood count is better than it was a year ago.
Unfortunately the only cure is a stem cell transplant and I am to old for one. As yet I am on watch and wait. I totally changed my diet after diagnosis and my blood count slowly improved. Of course if you are on medication you need to consult the doctors as some foods can react with medications. I have spent the last year researching everything about Chronic myelomonocytic leukaemia (CMML) and I keep well away from getting to involved with prognosis. PLEASE STAY POSITIVE. STRESS AND ANXIETY CAN BE VERY DESTRUCTIVE FOR ALL PARTIES IN THIS SITUATION. All of us who comment are facing a similar future. I know it’s easy for me to talk as other than Chronic myelomonocytic leukaemia (CMML) I have few problems health-wise. The folks who comment are on your side, blood cancer UK are on your side, keep posting don’t let anxiety dominate. I had my routine blood test last Thursday and speak to my consultant via ANOTHER telephone appointment next Friday.
Already I am beginning to sweat with the ‘WHAT IF’ syndrome. I think all of us feel that way. especially if we don’t feel to well.
Anyway the very best wishes to you
Unclejack.
Hello Unclejack, I have read a lot of your posts on Chronic myelomonocytic leukaemia (CMML) here and I must say that your very proactive approach and your lifestyle leaves me in awe of your ability to adhere to your regime.
I have began one of Dr Wiseman’s YouTube videos on Chronic myelomonocytic leukaemia (CMML) and found it highly informative, however after only 20 minutes I was so I felt absolutely knocked sideways, I couldn’t take anything positive away, so although I’ve tried unsuccessfully a second time to watch the same video I just can’t get through it for the same reason.
I’ve already introduced myself so I can’t bang on here as this thread was supposed to be about something specific. There is a ver long ongoing thread on Chronic myelomonocytic leukaemia (CMML) (130 posts) so I’m considering joining that one. As I think my OH has Chronic myelomonocytic leukaemia (CMML)2 and there’s another thread that is specifically focused on this I’m considering joining this one too.
@Hellodolly
Morning hello Dolly. I know exactly how you feel Chronic myelomonocytic leukaemia (CMML) has not been researched enough. But as unpleasant has things sound, people are living in some cases many years with this disease. I do honestly believe that being positive is hugely important. I have just received results of last week’s blood test. Platelets have dropped to 53,
but Monocytes have come down to 124 so about 24 above high normal mark. Neutrophils have recovered slightly. So the trend is stable.
Fortunately my five abnormal levels have slightly improved. I was really sweating about this test.
So am now quite happy. As I said before stay positive.My diet I believe has made a difference.
My target is to slow progression down. Many powerful medication are developed from various fruit and veg ingredients. I started my diet with getting my VITAMIN D levels up. I do take supplements for this as it is difficult to raise the level by food intake. I actually persuaded my haematologist and GP to test VIT D LEVELS and am determined to maintain optimal levels. Vit D is so important to not just bone health but the immune system. I think controlling progression is probably the best we can hope for. I also found out that all of us have cancer cells circulating which are normally neutralised by the immune system. But as we age especially over 50 our immune system begins to lose its power and that is the turning point in our health. So I search for foods which are antiinflammatory and strong in antioxidants. Sorry about all this talk about diet, but for myself it reinforced the hope I might live longer. AND I LOVE A CHALLENGE. The very best to both of you. Stay positive and remember new treatments may be just around the corner.
Best wishes unclejack.
Hi @Hellodolly as I am sure @Unclejack would reiterate do take advice of your specialist nurse, Consultant or GP before making changes to your diet or considering taking supplements in case they interact with your treatments, medications or test results.
I also agree with a positive attitude, fresh air and gentle exercise
Look after yourself and please do keep posting
@Erica@Hellodolly .
Apologies to hellodolly I am still on watch and wait and am taking no medication yet which makes a big difference. Many food spices herbs etc. can react with ANY medication. And even though I am on no medication yet I have discussed the subject with medics. As an example I didn’t realise that pomegranates can react with statins, and alcohol can suppress bone marrow activity. The list goes on. As ever Erica who has been on this journey for many years gave sound advice
Best wishes
Unclejack.