I sat with a diagnosis of CMML, feeling perfectly well and not knowing what to ask...
On the 27th of August 2019 I attended York District Hospital, Haematology department at the Magnolia Centre for results of a Bone Marrow Sample I had provided following results from routine blood tests which had revealed abnormalities in two of the readings.
After another blood sample was taken prior to my consultation with my consultant I felt a little suspicious of what was to come. This suspicion increased when the consultant entered the room with a nurse who she introduced as a specialist nurse.
My consultant told me in the best way she could that I had a condition which was Chronic Myelomonocytic Leukaemia. I knew straightaway in my own mind that this was probably a life ending form of cancer which was confirmed by being told there was no cure.
Here I was sat with a diagnosis of CMML, but feeling perfectly well, mentally and physically, but not really knowing what questions to ask other than probably the one most people ask, how long left have I. Being told it was a question that couldn’t be answered at this time as further tests were needed to be carried out and it was only chronic.
The website was invaluable to me to increase my knowledge of CMML
Not having a clue what CMML was other than some form of cancer of the blood I couldn’t formulate any questions to ask so the consultation was over in about ten minutes. I left the room with the Specialist nurse giving me a Bloodwise folder with various pamphlets of the hospital services and a leaflet explaining the ins and outs of having CMML.
My next appointment was arranged for the 25th of October 2019, with advice to contact the Specialist Nurse should I need more information or if my health status alters.
I think it was at this point I made a conscious decision the way forward for me was to be positive in dealing with this blip in my life. However, this was not going to take over my life, thinking about it all the time and possible outcomes and when.
Over the next 7 weeks I had plenty of time to investigate CMML and I gained a great deal of insight into what the future may hold for me. Reading people’s experiences on MDS UK Patient Support Group website, of how they have managed their lives gives me optimism going forward.
The website was invaluable to me to increase my knowledge of CMML not only of the condition but what is being done in respect of treatments and patient care and research by the medical profession. Additionally, I learnt I lived within 30 miles of a Centre for Excellence for care of MDS with a specialist in CMML.
On the next appointment I was armed with three questions to ask
The appointment on the 25th of October 2019 arrived despite my naivety on my last visit I was now more knowledgeable of most things with CMML and was only armed with three questions to ask.
After the now routine blood sample given below and analysed, I saw my consultant who this time had another nurse with her, only this one was a research nurse.
I had also brought my wife along as she has been a tower of strength in helping me deal with this setback in my life. The consultation started with how I was feeling which was pretty much the same as the last time we met. I was told my blood result were okay (only the fact they were like the last test), everything was positive, regenerating my optimism.
My three questions were
1. Could I have an additional opinion with Professor Bowen at Leeds?
2. Could I still be an organ donor?
3. Could I have copies of the results of my recent blood tests.
The answers were 1. Yes 2. No, but maybe my corneas 3. Yes
I had no hesitation in agreeing to take part in the European Registry
I was then asked if I would take part in A prospective, multi-centre European Registry for newly diagnosed patients with Myelodysplastic Syndromes (EUMDS). I had no hesitation in agreeing to do this, hoping it may help somebody in the future, in my predicament. I was then left in the care of the research nurse to explain the process after which she gave me a six-page document to read and sign if I was in agreement. We then decided for an appointment the following week.
At the appointment I did two tick box survey forms nothing difficult also gave a blood sample which the nurse explain had to be frozen within an hour and after that they would be despatched to a centre in Switzerland where they stored for the research. We then needed to arrange another appointment in six months’ time which coincided with my next visit to the consultant.
After my details had been entered onto their computer system, I am formally now an ID code – UKYORK + a number. Whilst I am unable to donate my organs it’s good to be able to donate my later life history, hopefully the progress of my CMML may give some insight into a way forward in treatment in the future.
Please do send us your story – whether you are a patient, family member or friend:
Email it to info@mdspatientsupport.org.uk, or call to our main office Tel: 020 7733 7558.
You may talk about any aspect of the condition, or how your experience has affected or changed you. Feel free to add photos as well. Thank you in advance!
