Hello Twitter chums. This is my first ever Blog. I don’t expect there to be many but I will use them to share stuff that’s simply too big to tweet. So we know that all people’s journeys with condition are different and individual. Many who have Chemotherapy will tell you of the side effects. These are many and varied and include wee the colour of Iron Bru. I text my mate John, I said my wee’s the colour of Iron Bru; he replied “does it taste like it!” Then there is the metal taste in the mouth that spoils eating. I had that and more! During my second line Chemo treatment everything tasted like sour (gone off) milk. Everything except milk, that just tasted like milk! So you quickly needed a drink to wash food down, but all drinks tasted like they’d been heavily dosed with salt! I was a fairly large bloke who lived to eat but during treatment that all changed!
So if you eat a bad egg for some considerable time after you are definitely off eggs. Following the same principle when I came out of treatment (in August this year) I had that but with everything. Oh dear I can hear you saying, yes oh dear in-deed! So although I could now drink finding something to eat that my brain wasn’t adverse to was a real challenge. Scrabbled egg topped with smoked Salmon worked because I hadn’t had that before due to it not being overly common on menus in the Two for £10 pubs that we commonly frequented!
But typical of my journey there is more! My Tumour is in my stomach but specifically at the base of my Oesophagus. So over time it has now grown into there making swallowing anything other than soft food completely out of the question.
And still there is more (How sorry for one person is it possible to feel I can hear you asking, well we shall see!). I was a chocoholic. A proper one who would take said confectionary from his own children on the basis that if they had truly wanted it they surely would already have eaten it. Easter was a particularly profitable time for my two girls. They would save and (most importantly hide) Easter Eggs knowing that Dad would in time pay handsomely for them, the record (so I am often reminded) being 10 quid for a Cadbury Buttons Egg when the girls were still in Primary School. My almost spiritual love of chocolate has also gone. I can still eat it but now it just tastes like food, what’s the fun in that. Surely the idea of chocolate is to have one square then suddenly realize you need another 36 in order to be happy! But at least now without chocolate in my life my suits have a better chance of fitting!
So I share this because it’s very difficult for the rest of the world to understand. People think they are helping by giving you things to eat with the direction “this is lovely, you’ll like it, it’s nice”. The really tricky one is when I've settled on something please don't offer me anything else because then I don't want anything! People mean well but have no idea. For me it’s like the Christmas episode of the Vicar of Dibley, where (so as not to offend anyone) Geraldine has three Christmas dinners. For me eating any food is at best like the start of meal three I would say!
So where is the positive? Well the brain is a wonderful thing and I often think mine works independently as it is constantly full of surprises. Where before I lived to eat my brain simply now says, " Eating, you don’t want to be doing that,” with the exception of course of things that can pass through what remains of my Oesophagus. It is difficult to explain, I can’t eat so I no longer particularly want to! I can eat enough to stay well and a great tip is to add 4 spoons of Marvel powdered milk to a pint of full fat milk which turns it into a food supplement without changing the taste! And it gets better than that because on days when the Oesophagus is working OK my appetite returns a little bit so I can eat more.
People talk to me a lot about the importance of a positive mental attitude but I think being open minded is far more important, certainly when you are on a journey like ours. If I was set in my ways and considered no day to be complete without a Full English plate full and the option of a Mixed Grill later on I would be truly buggered and very unhappy!
Having said all of that not being able to eat properly still sucks!
Steve Evans. 6 October 2013.