4
Loss
As the terrible diagnosis starts to sink in, we begin instead to think about remission. Perhaps Tom will buck all the trends and have three or four years, instead of the more likely three or four months. With the lump under his arm removed and after he has had radiotherapy, surely there will be a decent period of good health? At least we will have some quality time together, won’t we?
So, based on an over-optimistic view of what the medics are telling us, we decide to book a holiday. Crete: somewhere warm and welcoming, in autumn, when Tom is feeling better. We can all go, as a family, and enjoy each other, one last time. Of course, it is not possible to get insurance for Tom because of his diagnosis, but we’ve been given some money for a holiday and we decide to take the risk. We go into Lunn Poly and Andrea books it all up for us. A package holiday, in a villa with the privacy of our own pool. Ideal. At least we have something to look forward to. Remission. We cannot bear to think about the long term, but we can live now, for a while at least, despite the knot of fear which constantly punches us, deep in our guts.
Day by day we drive up Barnwell Road, Perne Road, Mowbray Road to the hospital. On the Barnwell Road, between two housing estates, there is a stretch of trees, bordering on Coldham’s Common. As I drive past, a solitary magpie flies up into the trees. That well-known rhyme, signature tune of an old children’s TV programme, springs into my mind: ‘One for sorrow’. I try to dismiss it from my thoughts. I don’t think of myself as superstitious or prone to seeing signs. Also, magpies are pretty solitary birds, so it is normal to see just one on its own. All the same, I cannot help myself. On the way home there it is again. A solitary magpie, harbinger of death. ‘One for sorrow,’ it squawks, as it flies up into the trees. Almost every time I pass, day after day, going and coming back, it’s there. Just the one. I drive past again. There it is. ‘One for sorrow’ hammering home what is already lodged deep within me.
Waiting with Hagar
On the Barnwell Road
At the edge,
On the grass,
On the Common side,
Once there were four.
Just once.
‘Four for a boy.’
But apart from that
Each time
Going or coming
It’s always one.
‘One for sorrow.’
Day after day
‘One for sorrow’
Another scan
‘One for sorrow’
The foetal curl
‘One for sorrow’
The bowl of vomit
‘One for sorrow’
The telltale lump
‘One for sorrow’
The death-ray mask
‘One for sorrow’
The surgeon’s knife
‘One for sorrow’
The knot of fear in the pit of my stomach
‘One for sorrow’
‘I cannot bear to sit and watch my son die.’1
Magpie.
People talk about the heart as the focus of emotion. For me, however, it is the stomach, the guts: churning, tight and tense. I am, at least, in good company. In the Gospels, when it says that Jesus was ‘deeply moved’, it often literally means: ‘He felt it in his bowels.’ Not much comfort, but at least he gets it. Does it help to think that God knows how I feel? That he has been there? Got the T-shirt? Frankly, it doesn’t, just now, but maybe one day it will. Another trip to the hospital and there it is again. The solitary magpie. ‘One for sorrow.’ My stomach churns again and I brace myself for more bad news.
Tom is a great sports fan and the World Cup is taking place, but he is too ill even to watch the England matches on the TV monitor by his bed. Stephen, our excellent GP, has found out what is happening and has got involved. His immediate reaction is: ‘We must get Tom home.’ Hospital is certainly not the place you want to be when you are dying, but after our earlier, failed attempt to get him home we, and especially Tom, are very wary. What we had not realized, however, is that, as well as being our GP, Stephen is a Macmillan Research Fellow in palliative care. It turns out he is an expert on pain relief and symptom control. Within a week Tom is home, with a syringe driver and all the drugs he needs, which Liz can administer if necessary. We have Stephen’s emergency mobile number should we need it and an agreement that Tom can be admitted straight back to the ward, not via A & E, if necessary. The pain and nausea are never completely absent, but they are at least under better control. Things are beginning to look more hopeful.
A cast of Tom’s head is taken and a plastic mask is made to hold his head still while they perform the radiotherapy. It looks like a death mask. It is. There are still regular trips up the Barnwell Road – outpatient appointments with the oncologist; radiotherapy appointments; appointments with the eye specialist; follow-up with the surgeon; more scans.
Our optimism is short-lived. His eye does not get better and he needs to wear a patch over it to avoid the double vision. The doctor explains to us that the melanoma produces ‘seedlings’ which are carried around the body, in the bloodstream, and can grow anywhere. It all sounds so innocuous. ‘Seedlings.’ Such a friendly word. One we associate with gardening, with springtime, with growth and new life. These seedlings, though, are floating around Tom’s body like hungry wolves, looking for a tasty morsel of liver, kidney, lung, nerve or brain to land on and devour. They, too, are harbingers of death. They are eating my son alive.
We are regular visitors to the oncology department. Walking up its long tunnel of a corridor. Sitting in the waiting room. Looking at other people with the same yellow, swollen, steroid features and no hair. Wondering what awaits them. Annie and I are sitting one day, waiting. Always waiting. Tom is seeing the consultant. After a while Annie turns to me and squeezes my hand. ‘It’s our wedding anniversary,’ she says. I have completely forgotten.
Our sense of loss is great, but we are not the worst off, by any means. Annie and I go off for a couple of days’ break again on our narrowboat, cruising just a few miles up the river and mooring at Wicken Fen for the night. It is almost dark when someone bangs on the boat door. It is a remote spot and we are not expecting anyone else to be around. Warily, I answer the door. It is a small group of men. They ask us if we have seen two young girls. They explain that they have disappeared from the village just up the road and that they are one of the many search parties out looking for them. The village is Soham. The girls are Holly and Jessica, whose murdered bodies will be found in the woods a few days later. Death is not the worst thing that can happen to you. There is always someone worse off than you. In this case, much worse.
Tom begins to have trouble speaking. At first we think it is just a sore throat, but it doesn’t go away. It is another tumour, growing on the vocal chords. We see Dr Corrie, his consultant oncologist, for the results of the latest scan. It reveals that there are now about 20 tumours developing, in glands in his chest and abdomen. She tells us, sadly, that there is nothing they can do about them. Tom and I walk slowly back down the long oncology corridor, towards the car park. Walking together in silence. Eventually, in a croaky voice, Tom whispers to me: ‘It looks rather bleak.’ I can think of nothing at all to say in reply.
‘Rather bleak’ is a complete understatement. Tom is not just suffering from the cancer now but also the side effects of the drugs. He is swollen and bloated with the high doses of steroids. The painkillers cause terrible constipation and, although it is controlled to some extent, he is never free from pain and nausea. His energy levels are falling, day by day. Some of the tumours begin to be visible, under the skin. It is relentless. There is no stopping it and there is to be no remission. It is loss upon loss. Loss upon loss. This is only going one way, and much, much faster than we had hoped, prayed or expected.
Early on, when he was first admitted to hospital, we bought him a balloon, which we tied to the end of his hospital bed. After the diagnosis, I bring it home. On it are the now hollow words: ‘Get Well Soon’. It is crumpled and beginning to deflate. I cannot bear to look at it any more. I take it into the garden and let it go, then stand and watch its painfully slow progress, rising above the garden, above the house, above the trees. I strain to follow it with my eyes, afraid of losing sight of it. A tiny dot in the sky. Then it is gone and I know in my heart that, soon, Tom will be gone as well.