I feel a fraud having no symptoms of CMML

[chris]

Hi Graham and other CMML-ers!

Oh my, Graham. You’ve had a scary time recently. So glad that they found no internal bleeding though you’re clearly still suffering the effects of anaemia. Hopefully the bone marrow biopsy this week will be helpful to see what’s going on recently with your CMML and whether the breathlessness is down to that or your lungs! I’m glad both clinicians are talking to each other. That’s always reassuring when you have multiple health issues! Hope you’re managing a few cakes to regain the lost weight!!

I haven’t been over the allotment much. Just checking on the leeks and purple sprouting broccoli and broad beans. All coming along nicely. Our daughter managed to move to the plot next to ours so we’ve got a nice little family corner now! Mind you, all the digging over to remove the couch grass was a bit of an effort. I think my husband and I did more than our fair share!!

I managed to track down some speciality first early potatoes which I haven’t been able to get for past 2 years because of lockdown preventing a local Potato Day from happening!! But by a very tortuous route, I got some and it made my day!! Little things etc!!

Yes I’m also attending the CMML session so hope I’ll see you there. The last Leukaemia Care CMML meeting was very sparsely attended. Only 3 people and 1 had to leave early as he felt poorly! I may try to get Dan to come and talk to MDS UK members as I think we have quite a few members with CMML.

Hope all goes well on Thursday and let us know how you get on.

Take care

Chris

[Graham]

Hi Chris and all CMML suffers and their carers. Well I had my day at the clinic following bone marrow biopsy and was pleased with result the blasts were the same as 2019. Concern is now more focus on the anemia. So I am now having self injected ERYTHROIETIN once aweek, its a human growth hormone to help red cell production. So time will tell if it will work. At the moment I have more concerns about a hernia in my groin. I was referred for an Ultra Sound only when I checked with the hospital they had no record but they recommended another provider used by GP's > I contacted them only to be told they had returned the referral as it did not follow the protocol for hernia's which required referral direct to a surgeon. Nothing happened for a week because the doctor was days off. When she finally sent the referral off again after 4 days it hadn't arrived. I have given up with my GP now going private to see a doctor to give me a referral to a surgeon at a cost £80. Then another £350 tfor consultation with surgeon. Then another £3400 for the op. Its causes me alot of pain and I can't do anything which frustrates me . Four weeks today I saw the doctor and I am no further on and still at the back of the queue.
Good to see you on the zoom call Chris found as always ver useful

[chris]

Hi Graham and all

Pleased to hear that your blast count has not changed and hoping that the EPO injections bring an improvement to your Hb levels.

But really sad on your behalf to hear about the runaround you’ve had to get your hernia sorted. It really is a bad sign of the times that so many people have had to resort to private healthcare to get what should be a straightforward procedure dealt with in a timely fashion. I hope you get some progress on that soon as it sounds very painful.

Yes the Leukaemia Care CMML session led by Dr Daniel Wiseman was excellent. Very informative and I learned a lot.

I’m hoping I can persuade him to repeat the session for MDS UK soon as he last spoke to us in July 2020.

Good also to see Bronwen at the Bournemouth meeting with Dr Catherine Hockings speaking. Hope your husband doing ok?

Take care all

Chris

[chris]

Hi Graham and all

Just a quick post to say that we are so sorry that the Chat Forum has not been working as it should and people have been unable to post. But it looks like it is now fixed! Something caused by us changing from Googlemail to Microsoft as our server! These gremlins!

Hope all on the CMML topic are keeping well.

Just a personal plea. One of the most bothersome symptoms I get (and I hesitate raise it as it seems so trivial in comparison with the seriousness of other people's conditions) is enormous mouth ulcers which go on and on and cause me a huge amount of pain and soreness and make eating an absolute torture. My latest bout, a serial attack on opposite sides of my mouth, has gone on for about 9 weeks and I'm getting mightily fed up with it!I have tried about every ulcer medication on the market and none of them work. Has anybody found anything that works?

All the best to you all

Chris