Sunday, 20 October 2013

All you need is love

Being positive and staying strong. (Or as the Beatles once put it “All you need is love”)

Immediately after writing blog 1 a Twitter friend sent me this tweet “Can you write a Blog on how to handle the emotion of it all. The gun to your head, how do you deal with it positively.” This is a big area to cover and quite a dark subject as it’s very close to the question “what’s it like to have Cancer and know you are not overly long for this world but still try to carry on living?”. Well, I’ll give it a go.

The first thing to explain is the “gun to your head” reference. I’ve used this analogy before. Imagine someone standing at the side of you just out of eye sight pointing a gun at your head, they are saying nothing. How long does the feeling of terror last, the numbness, the blind Panic. If after 10 minutes the person and the gun are still there what do you do? Regardless of the impossibility of it all you come to realize that if you’re not going to be shot there and then (inspite of the presence of a loaded gun) life carries on. You’re not happy about it, your new companion is forever in your mind, you are often scared sometimes crippled with fear, the life you had before seems distant as if it belonged to someone else, but for now at least you carry on.

So this is me, thinking about me. It’s when you start thinking about those around you that more problems start because you suffer an illogical guilt for several reasons. Firstly there’s the upset you are causing those around you. They are in pain and it’s your fault. Now obviously it isn’t anything like as simple as that and if you don’t have Cancer yourself you will probably be thinking “That’s just plain daft”. Well it is of cause but it’s also very real to some people with the disease and explains a lot of strange behaviour. People tell me of loved one who are ill and how frustrating it is that they won’t talk about it. Well there’s no training for having this condition (a bit of an obvious statement but bare with me) so not only do people not know how to talk about it, they think the people around them have suffered enough, so they simply stay quiet.

Then there is the equally illogical guilt due to still being alive, I suffer from this quite a bit. Reading that sentence back it probably needs a moment to sink in. I think it’s linked to something called “survivor guilt” where people feel guilty when they survive a terrible event and others don’t. Since I’ve been on this journey a number of people I know have died with less aggressive Cancers than I have, often being diagnosed after I was, and I’m just left thinking why them and not me.

So you have a gun pointed at your head, you’re in constant emotional pain due to the upset you are creating for those you love and you feel guilty for still being alive. Then of course you have the actually physical medical problems and treatment side affects to deal with on top of that. So without going into too much detail, that my dear friends is what it can be like to have Cancer with on possibility of getting better.

So how on earth is it possible to stay strong and remain positive with that lot going on? Well I can only tell you how we have managed it and manage it we have I think. Firstly if you look at life in general (without serious illness) it is full of light and shade, happiness and sorrow, good and bad. So our approach is very simple; having Cancer and being terminally ill is enough bad for an entire life time so we just address the balance and fill our lives with good things. We’ll never really balance those scales of course which is why my wife Sep calls the things we do feathers. Lovely wonderful things but compared with the weight of our diagnoses they are simply very light!

We are lucky in many ways particularly due to being supported so well by my employer meaning we now don’t really have any money worries and that is a big thing. But even so I think it is a state of mind, we are simply not interested in negative things and everyone around us seems to get, it which is nice. This now brings me nicely on to being strong, because we simply get than from other people. I’ll explain.

I have mentioned many times the importance of friends and family. I think this is relevant to everyone’s journey, because I simply have no idea how I would manage this lot by myself. The analogy is simple. Imagine my diagnosis being a sack full of weights. You have to carry it with you everywhere but it’s so heavy you can’t move it, so you just stay put, go nowhere, do nothing and remain the very definition of the phrase “unhappy bunny”. Well all I’ve done is taken the weights and shared them amongst my friends and family. Some days they are more aware of having them than others but they all go about their lives and me, I just wonder around with an empty sack. Friends always say “if there is anything I can do to help”, well that’s what they do for me, make life worth living and in doing so effectively keep me alive.

You see, many people are terminally ill and far too many people have cancer, our journey by no stretch of the imagination is unique and we are far luckier than may others. But what perhaps does make our journey different is the amount of love that we have around us and now with our extended Twitter family it seems to be worldwide, we never expected that!

When I was near to leaving a couple of weeks back I sent a text to my close friendship circle (still 200 people!!!!!) saying quite simply that “the team will now gather”. These are friends who will stay particularly close during the final stage of our journey (for however long it lasts) and then be there for Sep and the girls when I’ve gone quiet. I’ve never spoken to specific people with regard to who is in this team but I knew who they were and so did they, as they all came. Every person I thought would come did, travelling from all over the country without any thought of distance or Hospital visiting times which was a nightmare for sister! After one particularly busy day for visiting I overheard a Nurse (outside by room) saying to sister “he has a lot of visitors, they come from miles away, is he famous?.” Sister thought for a second and replied “no, but some of his visitors are!!” So if you think what that was like for the family to witness and what it must have felt like for me it’s not difficult to see where our strength comes from. If I’m that important to so many people how can I not fight with every ounce of my being to stay strong. Staying alive is another thing and mostly in the hands of others, but being strong that just comes from all of you my friends. Thank you sincerely for being there because without you all I probably wouldn’t be here or anywhere else for that matter.

Steve Evans. 20 October 2013.

Saturday, 12 October 2013

A tea party at the civic Halls

My induction to the Black Country Wall of Fame.

So this is Blog number 2 and it tells the tale of an innocent tea party at the Civic Halls in Wolverhampton on Friday 11 October 2013. Of all the amazing things that have happened in my life and specifically in the last 2 years this might just top the lot. My friends Jimmy Carr and Gavin Arnold (Gav is Jimmy’s long time tour manager) had invited the family for tea and cake in his dressing room before the show, to catch up because we hadn’t seen each other for a while. At least that’s what I believed to be happening!  The truth was something else entirely, although it was at the Civic, did involve Jimmy and Gav and there was cake.

In simple terms a surprise party had been laid on in the main bar. But when I walked in and saw a large number of my Civic Hall friends there I simply thought someone was having a DO and I’d walked in on it! Still the penny had not dropped! So I’m at my own surprise party thinking it’s for someone else! Then I noticed the Mayor of Wolverhampton, Jimmy and Gav were also there as well as a photographer from the local Newspaper. But before the penny finally drops (which happens imminently now) something needs explaining.

The Civic Halls is considered widely to be the area’s premier entertainment venue and was chosen in 2008 to be the home of something that is called the “Black Country Wall of Fame”. Basically it’s a series of road signs that carry the names of famous people in the world of Entertainment who hail from the Black Country. People like the members of Slade, John Bonham of Lead Zeppelin, Lenny Henry and Edward Elgar (I kid you not). These are mounted on the back wall of the Civic stage. Noddy Holder started it off being the first name on the wall and I managing the event where that happened. It was my job to look after him for the evening. When I was a kid (growing up in Wolverhampton in the early 1970’s) Slade where arguably the biggest name in pop music and Noddy Holder had almost god like status. So for an evening I got to look after a god, I’ll never forget that. So although the Wall of Fame may only be important here (in the Black Country) the names on it are people who are known throughout the world. Well, as of yesterday I would say, at least most of them are!!!!

So I’m at my own party and the penny only finally dropped when everyone looked at me and started clapping! Still not fully dropped though (perhaps they’d just invited more people for Tea). That only happened when my mate Kelly approached with a road sign that had my name on it and I mouthed an expletive in front of the Mayor, what would my mom have said!

I was to be added to the Black Country Wall of Fame and the Mayor was there (because he likes Tea and Cake) and the Express and Star (our local paper) to capture Jimmy Carr having his picture taken with a lot of people.

I was stunned and speechless, felt numb and was probably in mild shock. So what does it mean, well to me an awful lot. You see the wall just has famous people on it and it’s there to celebrate their work and their association with the Black Country. I’m not famous, I just used to work for the Council remember, but people must think a lot of me for this to have happen and knowing that is a truly amazing and inspiring thing.

The idea of my inclusion came from Gav and Jimmy when they were at the Civic in June. They gave the thought to Carol Dunn who is a Duty Manager at the Halls and one of my dearest friends. Carol is pivotal to my life; she is a very caring person who often looks after me if Septina and the girls are not immediately available and has stayed extremely close by during the last 2 years. She is also incredibly strong and takes no messing from anyone, sometimes I need that! My life simply would not be the same without Carol. So she made it all happen, took the suggestion to Senior Management and then did all the organising for the day, this had been going on for months and I had NO IDEA AT ALL!

It was the perfect surprise. I think my initial idea for the blog was to sure journey experiences and to try and explain just what my life is like. Well this sums it up nicely; surprising, amazing, humbling, inspiring and a time full of love. Thank you on behalf of myself and my family to everyone who was part of yesterday, Sep and Lauren just thought it was going to be a low Key affair until we got there, but of course Carol had other ideas. What a great day.

Steve Evans.

12 October 2013 

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.