Being sick during treatment was for me a temporary way of life. Every day spent in hospital was a day closer to getting home! The management of post chemotherapy fatigue is a way of life............but I have never been as active!
I am not sure if the fatigue that I experience now is strictly speaking "post chemotherapy fatigue". The medical experts might just label it "fatigue", but one thing is clear, I would not have it if I hadn't had the treatment.
The fatigue during treatment was debilitating to the extent that I spent most of the time lying in bed looking at ceilings. The fatigue I have now is a manageable condition.
Every stage of recovery has its own hurdles to overcome, and the hurdles are not the same for everyone. People experience different things at different times. In my opinion, it is virtually impossible for someone who hasn't had leukaemia to understand the long term impact of the disease and the treatment.
When you look well, people can assume that you are 100% physically fit and 100% fully recovered. I have read many articles and leaflets about post chemotherapy fatigue. Whilst they all touch on parts of the problem, I have yet to find something that deals with the matter in its entirety.
The one thing that the experts are agreed on is that there is no cure for post chemotherapy fatigue. That is the crux of the issue, as it affects so many people in so many different ways. All I can talk about is my own fatigue.
The fatigue I suffer from is not simply a physical tiredness. Apparently the Americans call it chemo brain and it usually manifests itself as a fuzzy head, headaches and a desire to be alone to chill out!
Fortunately, it usually passes after an hour's rest or so and is something that can be managed quite easily with a little bit of forward planning. Some people also speak of difficulties concentrating and irritability when the fatigue kicks in.
The good news in my case is that the fatigue is a manageable condition - I rule it rather than letting it rule me. It seems that periods of proper rest and time out work quite well when the batteries need to be recharged or more petrol is needed in the tank!
I have a fatigue managment programme for myself - I save energy before big occasions such as weddings, nights out with friends, holidays etc., .....I usually cut down on the running around, long journeys and late nights so that I am full of beans when I need them!
Most importantly of all! Friends! The friends who understand my fatigue are invaluable. These are the people who take me out for lunch, tell me all the latest gossip and take me on holidays! They are not demanding and go with the flow when the tiredness starts! Never underestimate the power of friendship and laughter to help conquer fatigue! I have never been as active and am planning another trip to New York at the end of this month! Roll on the Big Apple!
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