Hi i have been recently diagnosed with CML at 34 no more than 5 months ago and I have been very down every since and have awful fatigue due to the TKI's constantly worrying something worse is going to happen too. I have 2 kids that are still young and don't know im poorly so finishing it difficult due to the tiredness. Any hints and tips on how to combat the tiredness is very appreciated
Hi Kelzn1222 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 way back in 1999 at 43 so I have lived with and been treated for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable)…… also Asbestosis and recently Prostate Cancer……. so I know that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
Let’s look for some group members to pick up on your post. 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.
As for fatigue, it’s a mystery. My great CNS (Cancer Nurse Specialties) always reminded me that the less I did the more the fatigue would develop…… but at the same time I had to live within the limitations of my abilities and not to beat myself up if I was not achieving everything that I had planned or needed to do….. you find and live within your limitations.
Eating a healthy diet is very important, keeping well hydrated is also very important especially if you live in the areas that are most affected by this hot weather…. your body needs fuel….. and if you can rally support from family and friends - use it.
As always 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 and 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 any to chat.
