I have been recently diagnosed with one of two possible histiocyte based cancers after waiting for over 2 months. My concern is that in the meantime, I am literally wasting away. I’ve lost 20kg, the vast majority of my muscle mass and strength to the point where I am nearly an invalid now. The doctors keep saying not to worry despite not having a clear treatment plan in place. I just don’t know how to keep everything together when I can no longer do even minor things like stand. Plus my voice is so compromised I can barely manage a whisper. Basically I am becoming increasingly trapped in a shell that no longer wants to function. How do I keep my motivation up? Suggestions? Anyway have had similar issues?
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Hi @DouglasCC
It sounds like you’re going through an incredibly tough time, and it’s completely understandable to feel overwhelmed and frustrated. While I can’t offer medical advice, I can provide useful resources from Blood Cancer UK that might offer some support and information during this difficult period.
Here are the direct links to sections of the Blood Cancer UK website that you might find helpful:
- Blood Cancer How to contact Blood Cancer UK | Blood Cancer UK For direct support and information.
- Practical & Emotional Support: Blood cancer support | Blood Cancer UK - General support resources.
- Fatigue Fatigue | Blood Cancer UK - While your situation is severe, these tips on managing fatigue might still be help.
Please think about contacting the blood cancer UK nurses and your medical team to emphasise the severity and rapid progression of your symptoms. The blood cancer nurse team will really be able to give you some advice with how to speak with your medical team.
Thinking of you
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