Saturday, March 15, 2014

Cancer & M.E.

I've never really shared much about what is going on with my dad in my blog. Mainly because I wouldn't want him to come across it one day and be hurt or upset by what I had written. Recently, though, it has become harder and harder not to write about it, as what he is going through affects me daily in some little way or another.

Last year, after going through major heart surgery only the year before, my dad was diagnosed with stage IV lymphoma, an extremely rare form of this called Sezary Syndrome. With this cancer people develop a red, severely itchy rash that covers at least 80% of the body, they struggle to maintain their body temperature and they have raised lymph nodes. My dad now has the cancer is his skin and bones, making it stage IVA and incurable. He is currently receiving treatment to reduce the rate at which it spreads, although this is making him terribly ill, tired and barely doing anything at all.


From being a very active man who played golf, ran his own business and loved being out in the garden, it is hard to watch the man he is at the moment. Whilst he remains very positive himself and feels that once he has got used to the treatment, he will return to normal, many of us around him question how true this can be. The average life expectancy from diagnosis is 2-4 years.

For my dad's sake we do not talk about this much with him, but my mum, my sister and I find it hard not to think of the worst happening. When it may happen, how it will happen, what we will all do and feel when it happens. It is like the heaviest of weights on all our shoulders and it is hard to carry on with everyday life whilst carrying it. It has certainly been a huge contribution to my ME and depression.

When he was first diagnosed we all shed many tears, as anyone does when cancer enters your life My dad told us we were condemning him, that we made him feel life was over. I explained that we were simply distraught at the thought of cancer, let alone what it will eventually do to him, however many years down the line that may happen. However since then I haven't cried as much as I would have expected, given my nature. My body, however, certainly knows when there is a bad patch - a big appointment coming up, results that we are dreading or when he is having a hard time. I cannot get enough sleep and my mind struggles to function.

There is no way you can understand the impending death of a parent. We all have to bear it throughout our lives, but I think until you are hit with that moment of reality you cannot really comprehend it. Quite often I find my mind flashing back to my childhood, holidays in particular, and silly things we used to do and say. When we held my dad's hand to cross a road he would always squeeze and wiggle it in a certain way that would make us laugh, and we could never do it back as his hands were always too big. For some silly reason that is a memory that returns so often. Only a few year ago we when my parents visited us in New York we were standing on a subway platform after just seeing Jersey Boys on Broadway and my dad had us in stitches trying to do the dances from the show. I think in many ways I am mourning that man, as I really don't think we will ever get him back.

So dad, if you ever do read this, I will always love and I will always think of you - when you are here and when you are gone. You were my strength and my hero as a child and you showed me how to be brave. You gave me my love of gardening, taught me the offside rule and played on the Gameboy with me for hours on end. You might have not always had much patience and maybe didn't always play your part as dad like I wished you would, but I adored you no less, and I always will.


Cancer is a terrible, terrible illness and it doesn't just touch those who have it. My family and I are and always will be devastated by its effects. I just hope that when the times comes that it is peaceful.

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