| Product: |
People's Attitude Towards Cancer Patients |
| Date: |
17/03/01 (141 review reads) |
| Rating: |
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Advantages: How odd, I can't think of any!
Disadvantages: How long have you got?
I'm approaching writing this op with some very strong feelings. Unlike others who've written in the cancer category so far, my experience is not of my own treatment for cancer, but that of my son who was a baby at the time.
Sadly I think the prejudices and fears are much the same, and maybe, just maybe talking about them will help people not make the same mistakes that have been made on me and countless others. I think that 99% of the time people don't mean to be hurtful, but it hurts all the same. Maybe if enough of us speak out then slowly attitudes will change.
I am changing my son's name for the purposes of this op as he hates me talking about his experience of cancer. There was a time when he didn't mind, but these days he gets enormously upset if it is ever mentioned. Despite him having grown up knowing about his cancer as we always talked openly about it, and it ended up with me working for 8 years in that field, these days it's a part of his life he'd rather leave behind a locked door in his head. I respect that.
I'm not going to go into detail here about childhood cancers. That's for another op and another time, but let me just say that however high the cure rate (and relatively speaking it *can* be high) to be told that your child has cancer just shatters your world.
The chances were that Jamie had a type of cancer which had a 90% cure rate, however to turn that around, is to say that your child has a one in ten chance of dying. Not something any parent wants to contemplate. For us, statistics were particularly meaningless as it eventually turned out after much high-level and trans-atlantic discussion, that Jamie had a type of cancer of which there had only been 4 cases in the whole of the UK since records began in 1960.
Jamie was diagnosed when he was only 8 weeks old. We sat and listened to a consultant say to us "I'm sorry, I don't like giving parents bad ne
ws but..." The word *cancer* was never mentioned, but we guessed what he meant. This was a Thursday and James had been booked into a specialist unit at Barts for Monday. We had the weekend to arrange our life around his hospital admission.
When we arrived on the ward, we thought we were just there for tests, but soon realised that this was the children's cancer ward and that kids were only referred to it if a preliminary cancer diagnosis had already been made. James had cancer.
From the initial consultant's appointment our battle with attitudes began. Some people were wonderful. Others completely avoided us. One of the things I found hardest initially was people offering to have my older son, Alex, who was himself little more than a baby at 20 months old, for the odd day or so here or there. Really this was no practical use as the last thing *he* needed was to be ferried from place to place with no stable base for however long James was in hospital. It broke my heart to see the two of them separated, but friends back in Watford said they would look after Alex for however long it took.
I keep having to delete chunks of this as I'm trying not to give you our whole story!
Anyway, once on the ward, the support was immense. There really is nothing like the support which one parent of a child with cancer can give to another. We were all in the same boat, all facing the possible death of our children and wanting with all our hearts to see *all* of them survive while knowing that they wouldn't.
Life became full of test results and medical jargon. We learnt together, we cried together, we laughed together.
Being in hospital up in London, away from home, meant that it was difficult for people to visit. We were so very touched to have visits from some people who we didn't even know particularly well, but it helped us to know they cared.
Distressing though were the closer friends and even fa
mily who steered clear of us and even told us they weren't sure they could cope with hospitals so they might not visit. As if we didn't have enough to worry about with Jamie's condition, we found ourselves worrying about how these people would cope.
The best visitors were ones who came and brought thoughtful little things. Hospital life can become very isolated and institutionalising and it was lovely to get cards, flowers, little toys for Jamie or a book for me. The one thing I wanted more than anything though was the one thing noone gave me - a shoulder to cry on. I think people were scared.
I think the hardest thing I found was people telling me how brave I was. I find it hard not to use caps here and yell " I didn't have a choice!!!" What do you do when your kid is diagnosed with cancer?
You cope. You have to.
Saying that I was brave meant that people never really had to look at what was *really* going on for me. The life and death worries, the fear I was going to lose my baby, the heartbreak of knowing that the beautiful child you have just given birth to may die very prematurely. Some people even said "at least he's only a baby, you haven't really had a chance to get to know him yet" as if this could make losing him easier.
As people, we don't cope well with death. We cope even less well with death when it's the death of a child. There's something about it that that flies in the face of all we rely on. It defies the certainties we like to think we have about our children outliving us, it demands we look at our own mortality in a new and more honest way. It's uncomfortable, it's even embarrassing, but it's a part of this thing we call life.
The thing I found really helpful was people being honest with us. The two best examples of this were a conversation with some friends of ours who had lost a baby and knew better than most what we were f
eeling, and almost at the opposite end of the scale, a letter from our Pastor at the time which simply said that he didn't pretend to understand what we were going through, but that if there was anything at all he could do to help, just to ask.
Despite being desperate to get home from hospital, once we did, and hospital visits for tests started being less frequent, I missed the support of the hospital environment. I missed the understanding and the ability to joke about it all. Mostly I hated getting the "you're so brave" speech from people, and the worst version of it was " you're *so* brave - I couldn't do it, I love my child too much."
The other thing I really struggled with was the question "Is he better yet?" Please don't ask a cancer patient that one. The truth is, he might be in remission, but the likelihood is that no-one will ever quite give him an all-clear.
Even the medical professionals weren't always helpful. Believe it or not, I had a Health Visitor who couldn't say the word "cancer" and certainly couldn't use the word "testicular" which was the kind of cancer James had. Whe we visited the local clinic for the normal baby things, she would whisper to me "is that the baby who had....you know..." and offer to let me change his nappy in a private room!
As I got involved in running a charity providing support and information to families affected by childhood cancer, I came across many situations where families had been caused immense heartbreak through people's thoughtlessness. One mother I knew, whose lovely 12 yr old daughter Becca had finally got out of hospital after almost dying, and having had a leg amputated, got phoned by the mother of one of Becca's schoolfriends to say that she was going to have to invite Bec to her daughter's party, but would she please make sure that Bec didn't go as it would just upset
all the other girls too much.
One often used phrase which I find difficult but which is used so often that I rarely bother challenging it, is the one that many people often say about a baby being born, "Well, as long as it's healthy it doesn't matter if it's a boy or a girl!"
And if it isn't??
It's also really not at all helpful to say. "Well at least my children are healthy" or even "Hearing about your son makes me so grateful that my children are all healthy."
To finish off, I hope you don't feel too ranted at. It was years ago, but some of these words don't go away. Can I please leave you with some hopefully helpful suggestions?
~* Please talk to us if our kid has been diagnosed with cancer. It's OK. We're still the same people we were before.
~* Please offer practical help, or better still just do it! Having a kid with cancer completely disrupts normal life and keeping up with everything can be impossible.
~* Practise saying the "C" word. Cancer. There you go, it wasn't too hard was it? It's OK, the word itself has no power.
~* If you don't know what to say, that's fine. Why should you? But please tell us that rather than ignoring us.
~* Please, please please don't do the "you're so brave" thing. We're not. Can you instead acknowledge that this is unbelievably hard and give us space to agree with you?
~* Just being there can help, even if you don't say a word. We need to know you care.
I'm sorry this is so long. This was a huge part of my life for a very very long time and I still feel passionately about it. James is well now. He loves playing rugby and has hardly a scar to show for his brush with cancer. He has been one of the lucky ones. Kids are cruel though and one of the reasons he wants to keep it a secret is the teasing he's h
ad because he only has one testicle after the tumour was removed.
My final plea would be, if you have kids who know a kid with cancer, teach them how to treat the other child. A kid who has been through cancer has survived what many others don't. They deserve respect for that. Lack of that comes from ignorance. They might look different, they might have lost their hair, but they're the same kid they ever were.
~~~~~~~~~**~~~~~~~~~~~~~**~~~~~~~~~~~~**~~~~~
I dedicate this opinion to Chris and to Daniel in particular. I will never forget you.
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