Hi, I’m a 41 year old male who first had AML in 2009 when I was 30. I had 9 months of chemo over 4 courses and I went into remission, got my strength and fitness back and returned to work.
In 2013 I relapsed and this time I had chemo, total body irradiation and a bone marrow transplant over 6 months. I again went into remission but I’ve never ‘recovered!’
I have chronic fatigue, osteoporosis in my back, hip and neck, diabetes, acute kidney injury, GVH in my intestines, significant muscle atrophy and inability to build and maintain fitness. I suffer with depression and I’ve lost lung capacity meaning I get out of breath easily. I’ve had cataracts in both eyes removed and new lens replacements and laser treatment on a regrown cataract. All of these things came as a result of my cancer treatment.
I feel like I’m 81, not 41. I walk with a stick, I have felt exhausted now for 7 and a half years, no matter how much rest I get. I no longer work and I can’t imagine it will be possible to work again as year on year my body feels like it’s giving up on me more and more.
I’ve read numerous articles about long term effects of the treatment I’ve had and they all seem to conclude that patients recover to ‘almost’ pre treatment levels of health and fitness with certain conditions developing over time.
My question is this; does anyone else have similar problems to my own? I’m under 8 different hospital departments and each time I say I have chronic fatigue (which was actually diagnosed in 2019 by a tropical diseases consultant) they still send me for a thyroid blood test (which I’ve had 4 now in 18 months and my thyroid levels are fine!) or they tell me to try ‘moderate exercise’ which does nothing but wipe me out!
I feel like doctors are unable to ‘think outside the box’ and that maybe the treatments I’ve had, have had an unusually greater negative impact and effect on me than others, so they assume I’m just being lazy. But I’m really not. I’d love to even just stack shelves in Tesco. But I can’t stand more than 10 minutes without pain in my neck and back and I feel like I’m falling apart.
I’d appreciate anyone’s feedback on this, especially if you find yourself in a similar situation, thank you!