Alex, a member of the Heads Up Support Group, provides us with a very personal and poignant insight into his cancer journey…
Over the last few years, coming to terms and trying to deal and live with my own cancer, it has been apparent to me that a large number of people, in Scotland at least, avoid contact or conversation with an obvious cancer patient. Even people I thought were friends started to avoid me in public and did not approach me in private either.
I had a full laryngectomy operation in August 2012 with my throat, wind pipe and other tissues removed. I now breath through a STOMA in my throat – a small hole to which a sticky base plate and filter are fixed every day so the air I breath into my lungs is filtered. I can’t use my mouth or nose to breath as there is no wind pipe etc attached.
I made a conscious decision not to cover the filter or base plate as it makes it very hot for me to breath and the air is sometimes restricted. I also have to carry a ”Neck BREATHER” wrist band and other warning information on my person at all times in case I become unconscious and require to be resuscitated. It still amazes me the number of NHS staff who assume I should be resuscitated in the normal way rather than via my STOMA.
But back to my point. Since my cancer, some people have shown a total lack of understanding and think the best way to cope with it is to ignore it and, in the process, ignore the cancer patient as well. Now I know this is not the fault of the patient but when you have been through the treatment and experience the trauma that accompanies it, your self-esteem and feeling of weariness can’t really be explained but you don’t expect people you know or your so-called friends to cross the road, turn around and walk away so they don’t have to speak to you .
It gets worse when you are recovering and able to get about. When I was still unable to talk and could only converse via sign language, being ignored at the shop counter or the ticket office of a theatre or cinema, was very much par for the course. I began to get angry as I could not express my displeasure at this by talking or shouting. All I could do was wave my arms about and mouth what I was trying to say – looking like a demented unstable mad man. In a way I was .
The worst experience I had was at a theatre performance of Les Miserables in Edinburgh. My wife had got tickets as a surprise and took me through on the train for a weekend away. Everything was going well until I went to the toilet in the theatre. On the way back, I was very disoriented and could not find my seat. For the first time in many years I was panicking. I could not ask any of the ushers or any of the other theatre-goers. I was very much alone in a large crowd. I was in a cold sweat and beginning to shake with fear, fighting to keep myself calm and literally gasping for breath. I saw my wife standing up as the rest of the audience sat down and I was eventually able to get myself back to my seat. Although it was obvious to anyone who saw me during that incident I was in need of some assistance, not one person offered help. In fact some of them gave me a very wide berth. I could have fainted or passed out and I can only assume these people would have stepped over me to get back to their seats and left me there as someone else’s problem .
As you have seen, I have experienced a form of discrimination. The really sad thing is that the people doing this are normal every day people just like you and me. But when confronted with the signs, scars and visual effects of cancer, they avoid the person and the awkward moments that ensue. If people want to do this it is up to them. They have to live with it. But they should know their actions don’t help the situation – they make it worse. Cancer patients are still the same people they were before. Only their views on life and how they continue to take up the challenge of that life is theirs to do as they please. If people don’t want to confront them, then hope they would have the guts to say so to our face and not ignore us or shy away when they see us.
So if you meet someone with cancer, don’t stay away from them. Ask them how they are doing, same as before. Converse with them as normal and please give them the respect that you yourself would want and expect. Don’t add to their pain and worry. We all can do with less .