Hello again Mike
We spoke back in May. I said that I would keep you posted on my CMML situation, I saw Dan Wiseman at Christie’s in early August, amazing man, he explained the condition to me in very clear terms. I am fairly low down the scale at level 1 and he seems to think I will be on the W & W thing for quite some time. So that was a relief. Back to see him again in Feb, and my local haematologist is keeping an eye on things in the meantime.
Once again I am very impressed with our fabulous NHS
How are you getting on, hope your condition has remained stable and that you are living life to the full
Cheers
Pete
2 Likes
I am delighted to hear your news and hope that your condition remains stable. There are many CMML sufferers who remain on Watch & Wait for many many years and never require treatment. But I know that it is quite hard to hear that you will not be getting treatment.
Then there are those like me where it has developed quicky and a few where the leukaemia has spread to other organs and we need chemo.
Actually my position has changed substantially. I lost my wife in July and so have had a major upheaval to my life. I am currently in the middle of my 20th cycle of Azacitidine but for the past few weeks have been suffering from fatigue and breathlessness even though blood counts are not too bad. Having to attend hospital 7 times a month for injections and then additional visits to have blood tests and see the consultant every month does not help. I am fortunate that I live close to the hospital. I am embarrassed that an old codger like me is costing the NHS so much.
I am delighted that you are doing so well and that this continues. With the onset of winter and all the other problems we all face it is great that you have good news. Take Care.
Mike
3 Likes
Oh @mrew Just think what you have gone through in the last few months, You have lost your wife which is enormous loss and also the fall out emotionally and practically.
I am a great believer that the body just copes to start off with and then it all builds up and hits us.
Attending hospital 7 times a month, plus other visits, is exhausting in itself
You are worth every single penny that you are costing the NHS.
Yes, we are all facing challenges, but we also really need to look after ourselves with blood cancer.
Look after yourself and be very kind to yourself
1 Like
Good morning Mike
Thanks for your kind words, I am back for more bloods next week and wait with anticipation to see if things have progressed further.
Very sorry to hear that you wife has passed away, I can imagine that this would be a major upheaval.
Hope you manage to get your life back on track soon.
I know what you mean about the hospital visits, for the two plus years that I have been having the treatment for my bladder cancer it has resulted in tons of visits to the local hospital. I used to spend almost half the year wondering around Europe in my motorhome, I have now bitten the bullet and decided to sell it.
As for casting the NHS loads of dosh, I am sure that you’ve paid enough into the pot over your lifetime.
Hope they manage to keep you in a fairly stable condition for the foreseeable.
Best regards
Pete
2 Likes
Pete. Not heard from you for a while. Hope things are going well.
Regards, Mike
1 Like
Ive just found this thread having been told I probably have CMML a few months ago. I feel for all of you who have been posting. I’m on W&W with no apparent symptoms. Getting info on this has been harder than the Polycythaemia vera (PV) Inwas originally diagnosed with.
I will keep a watching brief o. This and wish you all well.
2 Likes