I’m new here, and I’m coming up to a year since I was diagnosed. I went to the doctor in April 2025 because I’d been feeling more tired than usual and getting light‑headed between meals.
I hadn’t had any blood tests for a while, so they sent me for some routine checks. I gave the samples around lunchtime, and by 6 p.m. that evening I got a call telling me to get to the hospital immediately — and not to drive — because my white blood cell count was extremely high. They didn’t tell me anything else on the phone, so I had to call my brother for a lift, since there was no other way to get there without spending a lot on a taxi.
When I arrived, there was some confusion at first. The A&E team initially wanted to redo the blood work, but then the on‑call haematologist pulled me aside into what looked like a trauma room — the kind you see on hospital shows — and told me the news.
The moment I heard it, my brain just stopped processing anything else. I was kept in the hospital for a few days until my white cell count started to come down. All I wanted was to wake up from the nightmare I felt trapped in. I had plans and trips coming up that I was suddenly worried I wouldn’t make. I had to tell people sooner than I wanted to because of everything that needed to happen.
Over the last year, I started to feel better at first — some energy returned, and it felt like things were moving in a positive direction with my medication. But from the end of the year into the start of this one, it feels like I’m right back at the beginning. My medication is still working well, but my energy levels are worse than ever. I give everything I have to work, and then I’m left with scraps of energy for my social life. If I don’t drink a minimum amount each day — even when I’m not thirsty — I have nothing left to give, and it takes days to recover back to anything close to normal.
I’m doing “active against cancer” exercise to try to help myself. People tell me I look better, and even my workplace says the same, but at the end of the day I’m still struggling. I hide behind a mask so people think I’m fine, when inside it feels like my body is betraying me. I’m forcing myself to act normal even though things I used to do easily are now out of reach. I can’t do activities I once loved, and even the things I try now require me to be extremely careful — or to take so much caffeine just to push myself through.
I don’t feel like I’ve fully processed any of this. I have people in my life who care, and my dad is dealing with his own cancer, but I don’t know anyone going through the same thing I am. I take my meds every morning, and the side effects hit me. The fatigue is the hardest part. I know I need to push myself to keep my muscles moving, but I don’t know what my life is supposed to look like now. I feel stuck — not wanting to push too hard at work, and just trying to take things as easy as I can to get by.
Hi AddCML and welcome to this corner of the Community although I am sorry to see you joining us. 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 back in 1999 with a rare, incurable but treatable type of T-Cell Non Hodgkin's Lymphoma (NHL) reaching Stage 4a in late 2013 when a second aggressive T-Cell NHL appeared so although my Blood Cancer ‘type’ is different I appreciate the journey rather well.
So let’s look for the group members to pick up on your post.
The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks provide amazing support and the Heamatology Support Group I attend at our Maggie’s have a few folks with CML.
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
Do get back to me if you need further help or just want to chat.
