Sunday, 6 October 2013

No longer living to eat

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.


  1. Thanks for your honest insights - I look forward to the next blog

  2. Keep writing. It's refreshing to read honest comments and honesty is a great support to those who need it x

  3. Thanks steve xxx as a person that lives to eat I really need to start finding happiness in something other than a bacon butty, besides those pigs are so dam cute!! Keep blogging your a star and an inspiration!

  4. Haha. Good stuff Steve. Didn't realise Cadburys had a kinky side. Cadburys Bottoms Egg!!!

  5. Just brilliant steve ! Honest and funny. Sometimes we just have to try and laugh. Liver surgery this week so small break from I,ve got more hair on my chin than on my head !!! How is that playing fair ha !

  6. Dark places, long treatments, bad news, surgery, chemo, all things we can cope with but no enjoyment frpm chocolate? Oh hell thats tough. Hang in there mate.

  7. Inspiring. I remember how chemo affected my taste. Someone (who had been there before) offered a word of wisdom. Don't eat anything you really like, chemo will make sure you never do again. Keep up the tweets and the blog and very good luck on your journey. X

  8. Thanks for sharing Steve. Your honesty is refreshing and enlightening.

  9. Your blog was lovely to read Steve. My experience of chemo just left me freezing!! May your journey continue with lots of tweets and blogs and lots of love xx

  10. Hi steve, i enjoyed your blog. I will continur to read and of course follow you on twitter. The story you tell regarding the effects of chemo resonate those relayed to me by my wife. Her journey continues as i pray does yours.

  11. I can relate to most of that Steve. My blog is

    1. Thanks Graham. Loved your blog and have posted the link on twitter. Hope you don't mind but I think people that follow my journey will really like reading it. Regards, Steve.

  12. Great blog and great idea Steve. For me, compared to many, my chemo was relatively straightforward. My pee was the colour of a rival brand of fizzy drink, Tizer, but it was the taste and digestion issues that got to me, from one end of my body to the other, if you know what I'm saying! I do sympathise about the chocolate though. Do you remember what those previously enjoyed foods tasted like, or are they now permanently tainted by the more recent experience?

  13. Hi Steve
    A friend sent me a this link as he wanted me to do a similar thing as I am on a similar journey to you, which might take a little longer as I have Mesothelioma they think 95% caused by asbestos, which I have never knowingly worked with, so bitter pill to swallow.

    I love your humour and I feel we are treating the bullet to the head in the same way, there is nothing we can do about it, so lets get on with life and hopefully give a little strength to people close to us who are suffering more than we are in some ways. You have put into words in a great way so many similar feeling and thoughts that I have, so refreshing to read.

    I start the chemo next week, every 3 weeks for 3 times. The have given me pills injections etc, so the side effect might be not as bad as they could be. But reading your blog I can see what I could face, so forewarned is for-armed.

    I felt guilty in hospital because I feel virtually normal, maybe a tad out of breath then a year ago, but I feel quite good and positive. I did tell a close friend yesterday that a wake when I am a live and kicking would be a great Idea. Why should I pick up the tab when I am not there to enjoy it. My goal is to put a smile on everyone's face and not have people afraid to talk to me about my illness.

    Thank you so much for giving me a little more extra strength and for putting a grin on my face, my thoughts are with you and your family and friends.

    I might be on the later flight to you, but it we ever meet up in that pub in the sky, reserve me a bar stool next to yours.

    Steve B