Tagged: Diagnosis
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
When I knew I had cancer
Seven years ago today, the date in the photograph above was the day I knew had cancer.
By this stage of the year in 2006 I had been hospitalised twice. I’d had an ultrasound and CT scan, and a biopsy of my tumour under X-ray conditions. My formal diagnosis was still days away, but I knew from everything the doctors had told me (and not told me) that the news, when it came, would be grave.
I went downstairs one evening, opened up an exercise book, and began writing down what was being said to me by doctors, friends at the school gate and medical friends alike. None of the protestations of ‘It’s probably nothing’ prepared me for the look of anxiety in my doctor’s face when I asked him straight out if there was a possibility I had lymphoma. He gave a slight glance away, a shuffle of some papers, then looked right into my eyes and said there was that possibility, yes.
And that was when I knew, seven days before my formal diagnosis across the desk of the woman who became my consultant, and four before the telephone conversation with my ward doctor, confirming my biopsy results.
The epigrams you can see on the page above are all present in the final published version of Love for Now.
Sharon Olds’s line ‘I want to live’ is from her poem ‘I Go Back to May 1937′, a personal favourite.
The Violet Weingarten line, ‘The chances are, more of us are mortal than have multiple orgasms’, is from her remarkable memoir of cancer from the 1970s , Intimations of Mortality, which you can read about here.
The limerick of Spike Milligan is from The 101 Best and Only Limericks of Spike Milligan:
A man called Percival Lee
Got up one night for a pee.
When he got to the loo
It was quarter to two,
And when he got back it was three.
If that is not a chemotherapy poem, I don’t know what is.
You can read more about Love for Now here, and buy a copy here
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
When Your Friend is Diagnosed with Cancer
If you have a friend who is diagnosed with cancer, the best thing to do in terms of what to say (or not say) is take your lead from them. Do use the word cancer. Do not assure them you know they will make it. And certainly do not say it is not fair.
I would also try to resist the temptation to say ‘If there’s anything I can do…’ as that puts the onus onto them to come up with a solution to a problem they did not ask for and when they will be at their most stressed and least creative.
Make suggestions which they can say yes or no to, however daft they sound. Put them in control.
On Thursday I took delivery of my new book, my journal-memoir of my own experience of cancer nearly seven years ago. Celebrating it on the weekend with the gang of friends who showed up with help when we needed it, I thanked them for that: showing up. As Woody Allen says, it is 80% of success.
The odd thing is nearly all of them said they couldn’t think of a single thing they did which was helpful. One friend from church organised a meals rota from friends in the neighbourhood. These would arrive in a cool box by our front door (in throwaway containers so the kitchen did not clog up with dishes) on the day of each chemotherapy treatment and for the two days following it, on every single cycle, from February to June. My children developed a taste for puddings. Another took them to hang out at their house, just to be with friends. Another drove us into hospital each day of my treatment so that we would not have to pay the car park fees.
Another wrote cards on the days of treatments, nothing profound, just little notes really. Being a words person, this was more than enough.
You get the idea.
So: don’t leave it to your friend to decide how to take you up on your kind offer because if they are British they will go blank and not want to put you out.
Looking back, I now see we were not left alone. That is the greatest gift we received. It consisted of time, words, music, silence, food and brownies on the doorstep. The simple things.
I’m still grateful for them.
I would also try not to refer to cancer as a battle, but that is another blog post.
You can buy Love for Now here
You can read about my diagnosis for cancer here
You can read about my treatment for cancer here, here and here
You can read about my remission from cancer here
