Dear Macmillian Community
Last year I was treated for a Stage 1 Seminoma, which consisted of removing one testicle with a tumor (measuring 48mm) and one single high dose of carboplatin which was both preventative and to also treat two further suspected tumors in each of my abdominal lymph nodes (measuring <1mm each). I' was relieved to hear that it was a success, a little over a year ago now.
we all know all too well the persistent side effects, which you'd naturally research and bring up with your oncologist team. so....You ignore these symptoms which become constant and you learn to live with them; such as being tied and fatigued 24/7, like me you may have a few aches checked out but nothing was to report, you discuss the chemo fog with your team and feel confident that its all part of the process and that one day you will wake up magically feeling what was a pre-cancer normal you.
Since treatment ended I've learnt to live with the tiredness and fatigue as well as having short term memory, and some effects in speech. You learn to take one day at a time and to also plan your days better. Life becomes a much slower pass and you build a list of all the things you will do when your back to optimal levels. Some days are better then others, obviously.
A little over a month ago now, the side effects which were supposed to get better over time suddenly elevated going from mild to extreme over night. This came from out of nowhere, I didn't have as much as a cold or any onset of any other bug that you would normally associate with sudden fatigue. I waited 2 weeks before going to my GP, in case there was a cold or a flu on the way, but nothing. Bloods are fine as well as the hormone levels. further tests are being carried out.
This fatigue is disruptive to my day. I can only work for around 4 hours before I need to go home and lay down or rest for 2-3 hours in a horizontal position. Rest does not take away the tiredness but does help with the muscle pains. Pain is stiffening pinchy through to severe burning in both my arms and legs. Like I've just run a marathon that very morning. If I dont lay down the muscles become very weak and I struggle to keep balance. other things I've notice when trying to last longer is tingling and shaking feeling.
Whatever the cause its not right, and seriously effects my quality of life. to answer any exercise questions. I managed tiredness and fatigue with light excises since this started all I could manage now is a slow walk for a few miles. any more then that I start too loose balance and my muscles ache.
Naturally I want to get to the bottom of the cause. Tests are ongoing and could take months to properly diagnose, apparently. I'm wondering if Late Side Effects are the cause. Considering the fatigue has always been there, to have suddenly become extremely aggressive and to a similar level of that I can only measure as being close to Chemo fatigue on day 2. But even that went away quickly.
I've read a great deal on late side effects. At this stage I am not ruling it out although it could easily be something else such as Chronic Fatigue, CFS or any number of conditions, with similar symptoms. There's a huge list of identical symptoms which needs to be investigated and one by one ruled out in hope one will be confirmed and it can be treated.
I am very keen to hear from anyone who has a similar experience. I was never advised of late side effects or that this could be a possibility, although its staggering to find out that there is such a thing and there must be others out there who can share their experiences.
many thanks for reading my story and I hope that you can share yours.
Andy
