RIP Edna Kabappel
Edna Kabappel, Bart Simpson’s teacher at Springfield Elementary School, was a great comic invention. She had many catchphrases – one of my favourites being, “Don’t do as I say, do as I mean”. I find myself using this a lot these days.
Marcia Wallace¹ – the actress who gave life to Edna – recalled her own dealings with cancer in her autobiography Don’t look back, we’re not going that way! While I would dearly love to add this phrase to my repertoire of handy mantras for difficult situations, I can’t. Not just yet.
I’m still stuck with images in my head from those scary days around that first diagnosis. The day, or rather, evening after I get the news, I’m standing in a friend’s kitchen. There’s a party going on – but I’m lost in that in-between world; in between hope and despair. On Christmas Day, I’m sitting on the bed reading Alan Bennet’s account of his own bowel cancer, while the sounds of Christmas – turkey sandwiches, games and The Great Escape seep under the bedroom door. And so on.
These images float in and out of my mind, coming and going like a slide show dissolving quickly from one snapshot to another, with no time to take in the detail. Although I remember some scenes quite vividly, others are vague, out of focus memories. It was 8 years ago. It seems longer, a lifetime ago – and I guess it was – in another life.
I stick a tentative toe in the brave new world of ‘don’t look back’. I try saying There’s no cancer in my body. It sounds good. And vaguely familiar. A riff comes comes into my head; there’s no cancer in my body/ no cancer in my body….. (repeat). Think early 1990s club anthem. (Not that I know anything about that sort of thing).
Being moderately cautious and occasionally pedantic by nature, I try again; there is no sign of cancer in my body. Can’t argue with that.
I can actually.
Sometimes I can be extremely cautious and (to my dearly beloved) frustratingly pedantic: On the day I had my scan there were no detectable signs of cancer in my body. Medically accurate but hardly catchy; try singing it to I’m too sexy for my shirt/ too sexy for my shirt by Right Said Fred.
I ask Annie. “Don’t say it yet.” Her caution is based on our shared history and not because she might be a closet fan of Fred. Or Marcia Wallace.
We’ve heard back from Oxford. The oncologist is not ready to wave me off yet, so we’ll see him again next April. Annie is not quite ready to think I might be free of the disease. She still prefers to think about life in 6-month chunks.
This is the thing; we share this disease. We both have it; joint custody of a delinquent set of unloved, unwanted and uncontrollable cells, which manifest themselves in the body as cancer. As I say to anyone who’ll listen, I have the symptoms – Annie has the consequences. And the consequences of cancer last much longer than the symptoms. So, until we can both agree on a suitable form of words, the ringing of bells and the shouting of huzzahs will remain a work in progress. It can keep for now.
If you’ve followed this blog for more than 12 months you’ll know that I have got into the habit of celebrating, or at least marking the passage of, each anniversary of my first diagnosis as a ‘special day’ – renamed last year as ‘cake day’. Diagnosis is the moment we become survivors, so what better way of saying “up yours cancer” than a nice slice of cake. But even though I will indeed partake of celebratory foodstuff – carrot cake is my current fancy, although a currant fancy also hits the spot – I cannot help but adopt a more cautious tone this year.
Last year’s entry for this day was full of optimism and thanks – recognition of the progress made in the previous 12 months and hopes and plans for the 12 months to follow. Yet just a few days later, Annie’s brother Rob died as his cancer quickly and unexpectedly finished the job it had started some 5 years earlier. She was there in his last hours, trying to take his pain away and make it better, as she had wanted to do for me on so many occasions. I don’t really know what it’s like to watch a loved one suffer. I imagine helplessness and blame and guilt. If only I’d done more. I could have done more. I should have done more. But it doesn’t quite work like that.
I have a friend in Cancerworld called Barbara. She reminded me, not so long ago, of something I wrote back in 2006² _ when I was having a bad time with Chemo. Some days I would be on the floor, unable to face another session. I would often shut Annie out, not wanting her to see me at my lowest. This was, I guess, a mix of pride and foolishness on my part; a futile attempt to protect her feelings.
I realised that there are some things I just had to do for myself, things that no one else could do for me. Like getting up off the floor and going to Chemo. Barbara describes this as “being on a wobbly rope bridge, high above the jungle, that you have to cross on your own even though there are loved ones at either end for support.” I love this analogy; it sums up the situation perfectly. Knowing my own personal demons as I do, I cannot imagine anything much worst than a fragile rope bridge, high above a jungle; a fear of heights and creepy crawlies that want to eat me. And yet …. no one else can get me across. I have to do it myself. That’s the thing about cancer – so often it’s just me, me, me. Selfish – but that’s what being a survivor means.
I could see that this made it doubly worse for Annie; she was hurting for me and hurting for herself. I put my thoughts down in writing, as a way of explaining what I was struggling to say out loud. In so doing, it made me think about other people in her position. So I wrote an open letter to all those who care for someone with cancer:
Dear Loved Ones
We know it’s hard for you when you see us in pain and discomfort. You say “I wish I could make it go away” or “I wish I could make it better”. What you mean is – you wish you could make the cause disappear – but you can’t. In that respect you’re just like us – helpless. The best you can hope for is to ease the symptoms.
You cannot know what this is like – and for that we are grateful. There are some things we cannot, dare not, share.
Don’t be hard on yourselves; if you do, we end up feeling guilty and you feel worse. The hardest lesson for you is to know when you can help and when you can’t.
Don’t forget your own needs. You are going through this as well – you need help and support. We get all the attention and it’s easy for you to get left out. You may not have the disease, but you too feel pain and discomfort. So don’t feel guilty about addressing your own needs. Have fun. We would in your place.
You already have an important role in our lives – you may be our partner, our parent, our sibling, our offspring, our best friend. Just carry on being that person – we won’t ask anymore of you.
Know that we could not do this without you. You stand on the touchline in all weathers as we play to win. You fetch our pills, you wipe our brows, you hug us when we need your warmth. You are as important to our survival as all the drugs and scans and surgery. We do know what you do for us and we love you for it. So thank you.
A Cancer Survivor
If there is one BIG lesson that Annie and I take from what we’ve been through these past 8 years it’s that it would not work if, god forbid, our situation were to be reversed. The one time she has been unwell enough to justify staying in bed was a disaster; my nursing skills are rubbish. I’m just not as good at it as she is.
Comfort food is important at times like these. It should have a mix of carbohydrates and protein and be easily digestible. Macaroni cheese is a good old hospital standby and so I attempted to nourish her with the same dish. Maccy cheese is something that really polarises our thinking, as I eventually discover. I like it with a light, generous sauce – she likes it thick and stodgy. If you were undertaking some repairs to a plaster wall, Annie’s maccy cheese would provide a firm basis, albeit with a bit of light sanding, for a coat or two of emulsion paint or wallpaper. You can leave out the sanding stage if you’re trying to repair Artex or wood chip.
She put on a brave face when I took her supper up to the bedroom. At first I thought she was overcome with emotion, rejoicing in my new role as her carer. But no. “This is the sloppiest maccy cheese in the world” she sobbed; “it’s just macaroni floating in yellow water”. She threw back the covers, rose from the bed and went down to the kitchen. Now I call that a miracle.
She read through this just before I posted it and although it’s been a few years since the event described, the memory is still clearly raw. She’s hardly ever ill now. In our house at least, maccy cheese has become a byword for preventative medicine.
As I celebrate my eighth year as a cancer survivor, I tip my hat to all you carers, supporters, lovers of those with cancer. You have the toughest of jobs, so hang in there. Better still, sit down and put your feet up. And don’t forget the cake.