Hi everyone, huge apologies for not reply to you all sooner, I am going from bad to worse here! But thank you so much for all of your responses regarding my reaction to the Covid and Flu jabs. I was poorly for about a week and then thank goodness it wore off! I am still left with all of the other symptoms though which are definitely getting worse! I have appointments lined up at Geriatric Medicine, Rheumatology and the Myeloid Clinic, all in November so I am hopeful that I will get some more advice and support and especially pain relief!
Also thank you Chrissy for the heads up on the Zoom meeting on 13th November. I have signed up for this so I will see you there. My husband will be joining me for hand holding and asking questions when I can’t string a sentence together!
I hope all of you are as well as can be expected and thanks once again for your amazing support!
So sorry to hear you’re still struggling with pain. That’s so horrid. Hopefully the various appointments will come round soon and you might get some answers and help with the pain.
We look forward to seeing you and your husband at the meeting on 13th.
Hi @CathyP Best wishes for your appts coming up. I hope you can get some help with pain relief soon. Look forward to seeing you online on 13th. I’ll be there with my husband, who last time was adamant that he’d be happy to talk & then when it was his turn suddenly became quite emotional & found it difficult. Although he does get emotional whilst watching The Repair Shop….! so I was happy to help him. We’re a friendly bunch & it’s great that we’ve got the opportunity to share & help each other. It’s been a huge support for us.
Thank you Sisi, you did make me laugh at The Repair Shop comment. Doesn’t everyone get emotional watching that?! My husband cries when we watch any sort of programme on TV about children or animals suffering, the rest of the time he pretends he’s grumpy and hard as nails!
Hi all, so yesterday I had my 3 month blood check at the Churchill Hospital in Oxford with Dr. Alex Sternberg and was told that the results were slightly worse than they were in August (not sure in what way, I will have to request a printout of the results) but not as bad as they were in May. We had a chat about my ongoing joint pain which Alex didn’t think was linked to the Chronic myelomonocytic leukaemia (Chronic myelomonocytic leukaemia (CMML)) directly but it was difficult to be sure but we are hopeful that the steroid injections I have on the 25th November will make a huge difference to the pain. I mentioned the Zoom meeting we were having on 13th November with Dan Wiseman and he was delighted to hear about this, saying that Dan was “a very good friend” of his. He was very supportive and hugely informative and I felt very optimistic after seeing him.
Thank you so much for posting and for your incredible fundraising efforts! It’s fantastic to hear that you want to raise money as a result of the support you’ve had on the forum and from our wonderful @BloodCancerUK_Nurses . Congratulations on almost reaching your fundraising target, we are so grateful that you are supporting our work in this way!
As the main purpose of the forum is for peer-to-peer support, unfortunately, this isn’t the right place for sharing fundraising requests. We’re also mindful about keeping everyone’s personal data safe, and so, recommend that people don’t share their email addresses on this open platform in our terms of use.
If it would be helpful, I am sure a member of our friendly Supporter Relations team would be very happy to talk to you about how you can spread the word and reach your goal. You can get in touch with them by calling 0808 2080 888 (option 2) or emailing hello@bloodcancer.org.uk. I can also pass on your details, if this is something you’d like so will message you directly to follow up.
Thank you once again for supporting the charity and sharing your experiences of our support services!
All sounds good from your recent blood tests. It’s certainly a good idea to get all your blood tests on paper -or does the Churchill have an online patient system where you can look at all your results? You may not want to go as far as this but I keep a spreadsheet of all my results so I can spot any trends. Thankfully, everything has been very stable for 17+ years!
I hope the steroid injections will help with the joint pain. How are your other issues - menopausal night sweats (?) and the awful digestive problems? You are certainly being challenged on many health fronts and I really feel for you.
Looking forward to seeing you at the meeting next week.
I was diagnosed with Chronic myelomonocytic leukaemia (CMML) last month and have just joined the forum. Please let me know how I join the Zoom meeeting on the 13th November.
So sorry to hear of your diagnosis of Chronic myelomonocytic leukaemia (CMML) but you’ve come to the right place for some great and friendly support from people who are living with the disease. Hope you’ve managed to find all the info I’ve previously mentioned?
Re the meeting next week, go to the leukaemia Care support website page and scroll down until you find the Chronic myelomonocytic leukaemia (CMML) Group. There’s a link to register for the next and all future online Chronic myelomonocytic leukaemia (CMML) meetings.
Thanks for this, I have just registered. It’s really good to find a support group. I’ve watched a few of Dr Wiseman’s presentations. I hadn’t previously been aware that there are so many potential adverse effects of Chronic myelomonocytic leukaemia (CMML). I’m relatively well at the moment and am learning to cope with fatigue.
So pleased you’ve been getting yourself informed and supported. It really helps to know you’re not alone. There are so many variations in symptoms of Chronic myelomonocytic leukaemia (CMML). It could almost be different diseases! Sorry to hear that fatigue is one of yours. Lots of strategies to manage fatigue so take a look at the websites of BCUK, Leukaemia Care and Myelodysplastic syndrome (MDS) UK. And don’t push yourself too much!
so I was happy to help him. We’re a friendly bunch & it’s great that we’ve got the opportunity to share & help each other. It’s been a huge support for us.
