Tagged: Remission
When they told me I would live
Nine days after I was told that my chemotherapy treatment was not working in April 2006 the doctors discovered the mistake of the radiologist who originally reported on my scan.
The extract below is from Love for Now, my journal-memoir of treatment for lymphoma. It is now available as a Kindle edition on Amazon.
April 28, 2006
What is it like, being told you are going to live? You hug your mother, who cries. You phone your wife who goes ‘Yipee!’. You drink coffee and eat pastries to celebrate. You tell your cleaning ladies, who are so pleased (they thought you looked better than last week). You tell your daughter, who is off school with a sore throat. She says ‘Why are hospitals so stupid?’ You receive many phone calls. But what is it like?
It is like watching the light fade from a room, sunlight making patches on the house opposite, the pink tips of apple blossom daring to poke through into the same, as you have done a thousand times before. But this time you know you’ll be doing it again, next year, and probably, the year after that.
It is dreaming up something profound to say about Kylie Minogue’s post-treatment haircut, and about the newspaper coverage of it, but resisting the urge. Ditto the obituaries you read this week of the man who invented the CT scan and the man who discovered a cure for leukaemia in children. Life is too short, you tell yourself. From now on I will write what I want.
It is darting in and out of the office to check who has sent you the latest congratulatory email.
And remembering that Chelsea only need a point against United at the Bridge tomorrow to win the league.
It is feeling that you might start reading poetry again.
It is breathing in deeply on the doorstep in the sunshine, and, though it induces a coughing fit, being grateful for breath at all.
Diagnosis anniversary 7
Today is the seventh anniversary of my diagnosis with non-Hodgkin’s Lymphoma (NHL), an aggressive cancer of the lymphatic system. I was told I was in remission from this disease in October 2006.
Here is what I have learned about cancer since my diagnosis.
1. As a culture we still prefer to use war metaphor when we talk about cancer. Witness all the tributes to the plucky ‘battles’ of celebrities and ‘fighting’ the disease, nearly always in the past tense, as though we are World War II Spitfire pilots dashing off to our planes to give Jerry hell.
2. My attitude to cancer is still partly superstitious. When I was diagnosed with NHL I assumed, irrationally, that I had used up all of the bad luck of my friends and family. I was wrong. Since I entered remission several friends and one family member have been diagnosed with cancer, more than one of whom has died. If your life has not yet been touched by cancer the chances are it will be. There is no way you can prepare for this.
3. Eventually your friends, family and colleagues will stop using the word ‘cancer’ around you. Eventually you will follow them. I promised myself this would never happen but now surprise myself by referring to my cancer as ‘when I was poorly’ or ‘when I was ill’. When you meet friends you have not seen in a long time they ask how you are with fierce concern in their eyes. But they do not use the word ‘cancer’.
4. I am not angry that I had cancer, though I understand that many people do not share this attitude. The closest to anger I get is when I reflect that my being ill forced my children to grow up more quickly than they would perhaps have done otherwise. There is no way of knowing if this statement is true. So much of what we say about cancer is not empirical, though we pretend it is.
5. You find out who you friends are when you are diagnosed with cancer. These are the people who show up, offer lifts and leave tins of brownies on your doorstep. The people who write, the people who make CDs. And those who, seven years later, still say ‘How are you?’ or ‘Tell me how you are.’
6. Once cancer touches your life you are never done with it. From the overheard plotlines of soap opera characters to the death and relapse of close friends, cancer is never far away.
5. Even if you have survived cancer you do not think about it all of the time. You compartmentalise; and, as Buddhists say, you practise acceptance.
7. When you are told you are in remission from cancer you do not feel like celebrating. Not one of my friends or acquaintances has held a party on being given this news. Personally speaking I am no nearer to cracking open the champagne even seven years after my original diagnosis. My gratitude at still being alive is deeply felt, closely matched by my relief. Neither of these emotions approximates to a celebration.
You can read more about my experience of cancer here and buy my memoir, Love for Now, here
You can read a review of Love for Now here
You can buy Riddance, my book of poems about my experience of cancer, here
The Next Big Thing: some questions about Love for Now
The Next Big Thing
I have been been tagged by poet and blogger Abegail Morley to answer set questions relating to my memoir of cancer, Love for Now. I have tagged two poets to continue the series, whose details are at the foot of this post.
Where did the idea of the book come from?
Love for Now did not begin with an idea but an illness. As I have written elsewhere, there wasn’t a plan. I was formally diagnosed with non-Hodgkin’s lymphoma on Valentine’s day, 2006. A week before that date, I began writing a diary which detailed the events –being hospitalised, scans, biopsies, diagnosis– which were evidence of my rapidly deteriorating health.
Love for Now does engage with ideas about cancer which are prevalent in the culture, most especially the notion of cancer as a ‘battle’. But the book did not start out like that.
I would sit at the end of each day, propped up on pillows on my bed, and try and recount what had been said and done to me as faithfully as possible. If you are interested in knowing these things, I wrote longhand in A4 French exercise books, on tiny grid squares, with an old LAMY fountain pen given to me years before by one of my brothers. I filled three and a bit of these by the time I stopped writing.
The final, published version of Love for Now is much shorter than the diary in its entirety, beginning one week before my diagnosis and ending with an entry in late October of that year.
What genre does your book fall under?
Love for Now is a memoir, written in the form of a diary.
What actors would you choose to play the part of your characters in a film version?
It is odd to think of who might play ‘me’ in a film. For a start it needs to be an actor without much regard for their appearance or their image. For most of the film they are going to look bloated, waxy and bald.
When I was diagnosed most of my male friends joked that chemotherapy wouldn’t be too much of an issue in terms of hair loss, as my genes have done a fairly good job of that already. On these grounds I think Ade Edmondson would be perfect for the role.
Tamsin Greig would be perfect in the role of my wife: she has a fantastic range, from comedy to vulnerability to towering rage, all of which the part needs.
My ward doctor, Karl, is a central character in the film. I need a young, tall actor who can do a lot of posh swearing but who can also move suddenly to great tenderness. I’m going for Tom Hiddleston.
For my consultant, Felicity Carr, I need someone who can move from determined sparkliness to no-nonsense directness in a blink. I’d love Imelda Staunton to play her.
I could see Dawn French as one of the bloods nurses.
Having recently embarked on the screenplay for the book, this is a very timely question and one I have been returning to a lot in recent weeks.
How long did it take you to write the first draft of the manuscript?
I began writing on February 7, 2006, and decided to stop in November of that year. The editing took longer than the actual writing.
Who or what inspired you to write this book?
In the first instance I wanted to record what was happening to me. But as I went on writing it became more of a debt of honour, not so much to myself as to the process of writing about something so enormous and life-changing.
I found that stories about cancer, in the culture at large and which had probably always been there, began to follow me around. I felt surrounded by it. Writing about this was, to use Robert Pinsky’s phrase, somehow to ‘answer’ this new situation which I had not chosen. It became something of an act of resistance.
What one sentence would sum up your book?
The subject of Love for Now is cancer, but its imperative is to live life to the full: let’s make the most of each day, whilst realising each one is so short.
What else about your book might pique the reader’s interest?
It contains everything you want to know (and do not want to know) about the physical ordeal of treatment for cancer.
It is also a sustained enquiry into the language of cancer, specifically war metaphor.
The book also questions what it means to be a writer -I had a book of poems out while I was ill- with no ‘profile’ to promote.
It is a hymn of love to my family, to Frasier re-runs, and to broccoli.
Will your book be self-published or published by an agency?
I am deeply grateful to Richard Willis of Impress Books for taking Love for Now on.
The poets I’m going to tag:
Christopher Southgate (who I write about here) and Sarah Salway
5 Common Responses When You say ‘I’ve got cancer’
When I was diagnosed with non-Hodgkin’s lymphoma nearly seven years ago the aspect of telling people I dreaded most was their reaction to my sad news. I quickly became expert at managing their upset and disappointment.
This is not statistical, but here are the comments which were made to me most often, and my (usually unspoken) reaction to them, in no particular order:
1. ‘Well, if anyone can fight it, you can’. This is based on the unthinking assumption that having cancer is a battle. As I have said before , this is deeply unhelpful, because it makes a link between the character of the person who is ill and their chances of surviving the disease.
No doubt intended as a statement of belief in the ‘strength’ of the person concerned, it nevertheless puts the onus of surviving onto them, whether they like it or not.
I also think it is said more to reassure the speaker than the person who has been diagnosed.
2. ‘If there is anything I can do to help, do let me know.’ This is one of the most common responses I had when I was diagnosed. It is completely understandable (and I know I have used it myself, with friends who have been diagnosed with cancer since I entered remission). We feel so helpless in the face of cancer. We want to feel we can do something to alleviate the suffering we are certain is coming.
The problem with it is that it (again) puts the onus of coming up with an idea of what can be done to help onto the one who has cancer. My favourite responses to my diagnosis were from people who said ‘Let me take the kids for you’, or ‘I could give you a lift on your treatment days’ or ‘I’ll organise a meals on wheels rota’. Boundaried and specific, they lifted my spirits enormously: not only were they practical, it meant I did not have to come up with imaginative ideas myself.
3. ‘It’s not fair. You’ve never hurt anyone.’ Not only is this not true, it unintentionally makes a connection between the ‘goodness’ of the person who has been diagnosed and how far they ‘deserve’ to get better. Cancer is not fair on anyone.
4. ‘Do you have any unresolved anger?’ I found it hard not to react with anger to this one. It seems (again) to make an implicit connection between the life that has been led by the patient up to that point, and how far they ‘deserve’ (or not) to ‘overcome’ the disease. There are issues of blame lurking below the surface here. When people need a hip replacement, or get flu, do we ask them the same?
5. ‘I just know you’re going to get better.’ Perhaps my least favourite response of all, and like the comment about fighting above, this is said to reassure the speaker more than the person concerned. It also assumes a knowledge about the outcome, which no one can honestly give, even the doctors.
If you have a friend who has recently been diagnosed with cancer: you can read my best advice here.
1. Acknowledge your sadness and shock by all means, but remember, it is not about you, it’s about them.
2. If you do offer help, be specific. Then follow through on what you offer.
3. Do use the word cancer around your friend. Euphemisms like ‘being poorly’ are no use.
4. Do not bombard your friend with knowledge you have gleaned from the internet about their cancer. The chances are they know more than you do. If they want to know, they will ask.
5. Take your lead from them. Sometimes they are going to want to talk about their cancer, its treatment, and nothing else. On other occasions they will not mention it, preferring to talk about their kids and what is on telly. There are no set rules of what is on and off limits. It will vary. This is normal.
Love for Now, my journal memoir of cancer, is available now.
Read my blog post : 8 Great books about dying
