Tagged: NHL
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
Together we can beat war as a metaphor for cancer
If there is one difference I hope to make with Love for Now book it is to challenge the overwhelming use of war metaphor (‘Today saw the passing of X, after a short/long battle with cancer…’) to describe cancer. This is inadequate for three reasons.
Firstly, let me assure you, after a day on a chemotherapy drip you feel the battle is being done to you, not that you are choosing to fight in one yourself.
Secondly, the notion of a ‘battle’ places the responsibility of getting better upon the patient. This opens up the possibility that it is the ‘strong’ or ‘deserving’ patients who survive having cancer, and that those who die from it are somehow lacking in moral fibre. Please may I respectfully suggest that this is balls.
Thirdly, the idea of cancer as a battle unnecessarily romanticises cancer as a disease when there is nothing romantic about it. Consider the short sentence above, used almost always in the past tense and when someone has just died. Even though the battle has been lost we persist in reassuring ourselves that the deceased has ‘given it everything’. Like so much that is said about cancer by people who have not had it, it is uttered more to reassure the speaker than those having treatment for the disease.
If cancer is a battle, let it be one for the doctors and researchers, who can at least go home in the evening without throwing up their lunch.
Love for Now is a book-length diary of cancer, its treatment, side effects and consequences in the life of one family.
Cancer, I found no poetry in you
I was formally diagnosed with non-Hodgkin’s lymphoma, a cancer of the lymphatic system, on Valentine’s Day, 2006. I was 42.
I was told that my treatment had been successful, six months later, in October that year. I have now been in remission from the disease for just over six years. I am now required to visit the hospital where I was treated just once a year for check-ups.
The diagnosis, when it came, was a shock, but not a surprise. I had woken up on New Year’s Day feeling very sore down my right hand side. I thought I had slept in a draught. You can imagine the level of sympathy I enjoyed that morning as I searched the house for pain-killers. My protestations of having been sensible the night before fell on deaf ears.
The pain grew worse. I spent the first full evening of that year in A&E, having tests. These proved inconclusive, and were to persist in doing so, as I was hospitalised a week later, and again some weeks after that. Much later, once my tumour had been found and identified as malignant, my GP told me it was ‘lucky’ that it had been growing in an area so full of nerve endings, otherwise they might not have found it so swiftly. This made me wonder what a slow diagnosis might look like.
I suspect everyone who has been diagnosed with cancer has a similar story to tell in that it involves many tests, a lot of false starts and hours of rather fruitless phone calls to friends and relatives giving descriptions of events that are beyond imagination.
I had two diagnoses. The second and more formal one was in an office, with tissues and a computer screen. The first came in a phone call, late on a Friday afternoon. I was at home, having just picked up one of my children from school. I had been promised a result of my biopsy a week earlier, and having heard nothing decided to ask if there was any news. The doctor was brief and to the point, merely confirming that it was what they had suspected: lymphoma. She paused and asked if I had a pen as she needed to give me details of the doctors I was to see next.
A great numbness came over me. Outside, very normal things were continuing to go on without me: a car being parked, a mother pushing a buggy with a toddler in tow. My first thoughts were not about dying, or heaven. I was much more exercised about keeping control of the news for as long as possible because my daughter was away on a school trip and had taken the sole mobile phone we possessed at that point. I did not want her receiving sympathetic texts from relatives when we had not told her face to face. I tried to continue reading the newspaper I had put down, but couldn’t. It was the last concentrated reading I was to do for months.
You can read the complete article here: I found no poetry in you, full article
I have published the full account of my treatment, Love for Now, which you can buy here and here
You can read how I wrote Love for Now here; and why I wrote it here
Thank you to all my readers for following this blog. Wishing you all a very happy Christmas and see you in the new year.
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
