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.