Hello - I’m new to this forum having only had my CML diagnosis in the last 24 hours. I’m a fit and active 52 year old with a busy home and work life. The diagnosis was picked up through a routine blood test after I made an appointment with my GP due to breathlessness when cycling and running. A big shock to the system!
I have a pretty full on life with 5 children (3 at home from 14, 16 and 20) and twins who are in their own homes. I have a demanding role and balance a working life across the UK which is then grounded at home with my wife and family. I’m active and generally on the go and struggle with rest, hence a lot of good dog walking, trail running and long distant cycling.
I am trying to keep positive about my early diagnosis, whilst we wait for the bone marrow results and final bloods, with now daily hydroxycarbamide tablets until the consultants get the full results and start a longer term plan.
It’s been great reading through this forum which has given me hope and inspiration. My mindset is a strength, usually seeing optimism in situations and delving into fairly strong and well tested personal resilience to get me through things. I have to be pragmatic and accept, it seems, that I will live with CML for the rest of my life, most likely medicated.
Whilst there will be many major and smaller bumps in the road ahead, probably through the side effects, is it reasonable to believe that I can find a way for my active lifestyle to continue - with cancer forming a part of my life rather than my life being restricted and living around CML?
Thank you. Kier
Hi again Kier and welcome across to this corner of the Community although I am sorry to see you joining the community……….
As I said on your post in the New ti Community I am Mike and I help out around our various Blood Cancer groups.
I don’t have Chronic Myeloid Leukaemia (CML) but I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of T-Cell Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive type of T-Cell Non Hodgkin’s Lymphoma was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of navigating this journey rather well.
CML is on the rare side, but let’s look for any group members to pick up on your post and get back to you. You can also click on the main ‘CML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
I am repeating myself….. but the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a person with CML in it so worth checking.
Always around to help more or just to chat.
