It is now five and a half years since I was diagnosed with Acute Promyelocytic Leukaemia. I think that I have the correct spelling. It is quite strange because yesterday I tried to pronounce that P word and couldn't! I suppose it is true that time is a healer. Over five years ago APL came like a thief in the night and tried to steal my life but I am still here and I have no intention of going anywhere. Anyway it is now time to start researching APL around the world and find out how all the other APL gang are coping with life!
A
Friday, 2 April 2010
Leukaemia And Post Chemotherapy Fatigue
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!
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!
Leukaemia and Travel Insurance
Hi Guys,
Back to blogosphere with a bang. Every time we turn on the telly we are faced with more doom and gloom about the credit crunch! Can anything put an end to our misery? Mmmmmm.... a holiday of course... ..... just think about that walk along the beach, someone to grant your every wish,stunning views, magical moments, candelit dinners, sunglasses and smiles!
Then think about travel insurance................ Did I take that smile off your face? We all know that obtaining travel insurance before we head off on our holidays can be difficult. For people affected by cancer it can become a huge problem.
I was diagnosed with Acute Myeloid Leukaemia in November, 2004 and was disappointed to discover that my old reliable insurance company now excludes cover for Acute Myeloid Leukaemia. Shocking!!! No, not really, I discovered that several companies have a cancer related exclusion which means that I am covered for everything except medical treatment related to my condition. Then of course, if I am unfortunate to get sick from anything else eg. food poisoning, malaria, heart attack .....I will have to prove that the illness which I developed is not related to my pre- existing medical condition.
It is a huge personal risk to travel without any form of cover. It might seem the easy option - take out a basic policy (approx £20.00 for a single trip in Europe), hop on the plane and hope for the best! Probably not the wisest thing to do though? What happens if you get sick on holidays or need to be flown home? But what do you do if some insurance companies don't want to know ... what if they won't even provide a quotation......?
When I was looking for a quotation, the Insurance Companies usually went through a few standard questions about my pre-existing medical condition (i) what date was I diagnosed (ii) did I go into remission (iii) have I been an inpatient in the last six months (iv) have I got a terminal prognosis..... It was frustrating when I provided all the information, had gone through all the hoops and was then told that acute myeloid leukaemia is simply not covered at all. Why, I asked - when it is almost five years since diagnosis?
It is just another problem that the recession has created. Insurance markets are setting the premiums higher or they are reducing the availability of insurance to those affected by cancer....even five years after diagnosis.
However, all hope is not lost and there are some specialist companies still providing cover for acute myeloid leukamia patients... at a price of course. It seems to be that the average price for a single trip policy for travel within Europe is approximately £20 - £30 ..... that is basic cover... ie., lost luggage, lost passport etc.
In order to get covered for a pre- existing medical condition it is necessary to go through medical screening where you will be asked a series of standard questions like those mentioned above. Hopefully at the end of the conversation you will be provided with a quotation..... I was quoted £52.77 which in the big picture is not too bad and at the end of the day is peace of mind when you are on holidays. So the total cost of travel insurance (to include cover for my AML) was £72.77. The Insurers would not give me a quotation for the annual multi- trip policy so it looks like I will have to go through the whole process again the next time I am planning some holiday adventures!
Back to blogosphere with a bang. Every time we turn on the telly we are faced with more doom and gloom about the credit crunch! Can anything put an end to our misery? Mmmmmm.... a holiday of course... ..... just think about that walk along the beach, someone to grant your every wish,stunning views, magical moments, candelit dinners, sunglasses and smiles!
Then think about travel insurance................ Did I take that smile off your face? We all know that obtaining travel insurance before we head off on our holidays can be difficult. For people affected by cancer it can become a huge problem.
I was diagnosed with Acute Myeloid Leukaemia in November, 2004 and was disappointed to discover that my old reliable insurance company now excludes cover for Acute Myeloid Leukaemia. Shocking!!! No, not really, I discovered that several companies have a cancer related exclusion which means that I am covered for everything except medical treatment related to my condition. Then of course, if I am unfortunate to get sick from anything else eg. food poisoning, malaria, heart attack .....I will have to prove that the illness which I developed is not related to my pre- existing medical condition.
It is a huge personal risk to travel without any form of cover. It might seem the easy option - take out a basic policy (approx £20.00 for a single trip in Europe), hop on the plane and hope for the best! Probably not the wisest thing to do though? What happens if you get sick on holidays or need to be flown home? But what do you do if some insurance companies don't want to know ... what if they won't even provide a quotation......?
When I was looking for a quotation, the Insurance Companies usually went through a few standard questions about my pre-existing medical condition (i) what date was I diagnosed (ii) did I go into remission (iii) have I been an inpatient in the last six months (iv) have I got a terminal prognosis..... It was frustrating when I provided all the information, had gone through all the hoops and was then told that acute myeloid leukaemia is simply not covered at all. Why, I asked - when it is almost five years since diagnosis?
It is just another problem that the recession has created. Insurance markets are setting the premiums higher or they are reducing the availability of insurance to those affected by cancer....even five years after diagnosis.
However, all hope is not lost and there are some specialist companies still providing cover for acute myeloid leukamia patients... at a price of course. It seems to be that the average price for a single trip policy for travel within Europe is approximately £20 - £30 ..... that is basic cover... ie., lost luggage, lost passport etc.
In order to get covered for a pre- existing medical condition it is necessary to go through medical screening where you will be asked a series of standard questions like those mentioned above. Hopefully at the end of the conversation you will be provided with a quotation..... I was quoted £52.77 which in the big picture is not too bad and at the end of the day is peace of mind when you are on holidays. So the total cost of travel insurance (to include cover for my AML) was £72.77. The Insurers would not give me a quotation for the annual multi- trip policy so it looks like I will have to go through the whole process again the next time I am planning some holiday adventures!
Subscribe to:
Posts (Atom)