Writing this blog has been so much more painful than I ever imagined because there is almost too much that I want to say, so many emotions that are running rife and so many that are difficult to put down in black and white in a format that is potentially public that other people can read. I have written a diary for decades now … literally … however no one ever gets to read it. My thoughts and feelings are private and mine alone, I am making myself vulnerable by writing this blog by putting myself out there. To my knowledge no one has ever read a word that I have written … and I write a lot !!!
It is said that everyone has a book in them and my dad always said that I had at least three !!! I keep thinking about that and all the faith that he had in me … how we would have worked through this together. I miss him each and every day and I wish I had him here with me as the happy and healthy man that he was before he became poorly … he had to endure such debilitating health issues … Diagnosis of Parkinson’s disease followed by a diagnosis of Mesothelioma only months later… he passed away within 3 months . It was devastating for all of us but our strength as a family unit got us through it all . It is that same strength that I drew on to get me through my own tough times coping with my own cancer diagnosis….
My family is my strength my reason for ploughing through each day … and at the moment, the here and now I feel as though I am wading through treacle. …
My last check up with Dr Kothari was on the 27th March and all was good – he puts a camera up my nose and down my throat – it is super uncomfortable but I know I have to endure it . Sometime I wish that there was a scan that could be done to show what is going on in my mouth and throat but there isn’t. These check ups are always so scary as you never know what might appear … that the cancer might be back… Cancer like mine that is caused by the HPV virus does have a relatively high chance of recurrence and that is beyond words … it is an uncertainty that I have to push so far to the back of my mind.
I have another 4 months before my next check up on the 17th July …. 7 days after Lucy’s 19th birthday and 8 days before our holiday … I don’t like to think about it too much . It is something that will happen and as with everything I will deal with it then.
SIDE EFFECTS ….
How I feel at the moment is so conflicted … I have the physical scar on my neck, I have the tightness from the scar tissue that can be quite painful and times. I have the dry mouth and difficulty in swallowing that they warned be about along with the altered taste. Somethings taste as I remember some things don’t … one of the most upsetting things is that Toblerone just doesn’t taste like Toblerone any more !!! not to mention that I can’t enjoy a beautiful glass of red wine any more …
Eating and drinking and how my surgery and the radiotherapy would effect this most basic of functions was one of the reasons that I did consider not having the radiotherapy. I love my food, I love to eat it is one of my passions and for this to be taken away from me is devastating. I look in the mirror now and I am not sure who I see any more … I have lost a lot of weight – before surgery I weighed about 80 kgs (12.5 stone,) I now weigh about 64kgs (10 stone) … losing 2 stone does not sound like a huge amount but for me it is I have dropped from a size 14 to a size 10.
Everyone tells me how great I look but I don’t feel great … I want to do more I want to be busy and active but I struggle to eat enough to keep my weight constant. It is hard when it is so difficult tot actually eat… to physically swallow is hard to do… the food that I once adored I now can’t eat … then there is the food I can eat it, I just can’t always taste it which is just another factor … I am coming up to my year anniversary of when I started radiotherapy which was 22nd June 2017 … that was when my journey truly began because it is the radiotherapy that has altered and impacted my life in such a dramatic way. The side effects of the radiotherapy are so much more than it is possible to prepare yourself for and in a way I think that is a good thing because the reality of the life post radiotherapy for head and neck cancer is something you have to face each and every day – every time I swallow; with every mouthful I try to eat … it is hard … so very hard … the battles that I have inside my head – I know I have to eat but it is easier sometimes not to as I don’t have to battle with the issue of swallowing if I don’t ….