The Quantification of Hope

This week as the world prepared for the inauguration of a new President, we prepared ourselves for something much more personal: the results of my partner’s scan.

When I say prepared, I mean braced, tensed, clenched: every clichéd adjective you would edit out of your own MS my partner and I felt. By the end of the week, my body was a tight cage of fear with what some cancer patients call ‘scanxiety’. After four cycles of hard-hitting chemotherapy that has wiped my partner out, we would finally find out what impact it had had on the actual disease itself. We parked the car outside the cancer centre, just two hundred yards and twelve years away from the maternity unit where our youngest son was born. We dreaded hearing the words ‘spread,’ we hoped we would hear the word ‘stabilised,’ and we dreamt of the word ‘shrunk’.

When we first met our Consultant Oncologist, this maverick genius looked not at my partner’s notes but at our faces. He saw that having being told he had advanced and inoperable lung cancer had knocked us both to the floor, so our consultant set about injecting us with hope.

‘Everyone asks how long have I got, or what are the odds on the treatment working,’ he said. ‘The truth is all we have are median statistics and they are meaningless to the forty nine people before the median number and the forty nine after. Each statistic is only helpful to the fiftieth person on that range. So ignore the numbers. What matters is how you as an individual respond to your treatment.’

At the time, I thought he was just being kind because the statistics were so very, very, bad. Now, however, I realise just how wise he was. Statistically speaking, we shouldn’t even have been in his consulting room. Lung cancer is the second most common cancer but only 10-15%  occurs in non-smokers like my partner. Non-smokers typically have gene mutations or biomarkers that would make them eligible for some of the new and very effective immunotherapy drugs that are increasingly available, except he didn’t. My partner has an unusual sub-type that accounts for 2 – 5% of all lung cancers. Most people with this kind of cancer have the slow, indolent kind. My partner’s cancer was advancing terrifyingly fast and in a matter of weeks, had been reduced to a state where he could barely get dressed. The one statistic our consultant did give us was that for those who don’t have the biomarkers for immunotherapy, about a third respond well to the standard combination chemotherapy. I have since learnt that this figure is closer to twenty-five per cent. So statistically speaking, we didn’t have much hope.

Yet against all odds, the scan showed improvement. Extraordinary improvement. The disease that had crawled all over his lungs has been pushed right back to the extent that his lungs might even be considered close to normal. Even more extraordinary is the fact that the chemotherapy still appears to be working. Most statistical graphs will show a reduction in cancer after two cycles, plateauing out by cycle three and four. But in my partner’s case, there is a visible improvement between the second and fourth cycle scans. So although the studies and statistics suggest patients should have only four cycles of this combination chemotherapy, we agreed that in my partner’s case, it made sense to ‘go for it’ and have two more cycles – six in total.

So the day we had both feared turned into one of euphoria and relief. However we are not quite cracking open the champagne yet. My partner has a worryingly low white cell count. This weekend we are checking his temperature every two hours as with a greatly reduced immune system, he is at risk of dying from a simple infection such as a cold. This condition also makes him feel totally wiped out, so although mentally he knows the cancer is getting better, it doesn’t quite equate with how his body feels. Emotionally, he is still reeling from discovering that at the point of diagnosis, the consultant thought he was just a month away from being untreatable. And there are, of course, two more cycles of heavy duty chemotherapy to get through followed by another scan with all the consequent anxiety that that will bring.

Last week, there was a very moving article in the New York Times by a young man with stomach cancer. He too had initially tried to cope by breaking his diagnosis down into statistics. But as his consultant explained, if you survive, you’ll survive 100%. No one survives 9 per cent. No one is 9 per cent dead. The numbers that matter are 0 and 100: dead or alive.

I would add to this that actually numbers don’t really matter at all. Against the odds, my partner developed lung cancer. Against another set of odds, the standard chemotherapy appears to be working.

We are so very thankful to the NHS team who quite literally saved my partner’s life and for the kindness, thoughts and prayers of friends (both virtual and ‘real’) who together created a sea of sympathy that helped raise our boat when for a moment it looked like we were sinking.

We are not out of the woods yet. But we have emerged from the dark, dread centre to the outer fringes. Here there is light.

Here there is hope.

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11 thoughts on “The Quantification of Hope

  1. Oh, that is hopeful news in a sea of frankly quite dispiriting news. It also helps us to get things into perspective: when there are matters of life and death, it feels petty to whinge about crowd numbers or orange hair. I’m keeping fingers crossed and wishing you much courage, health and joy in the months to come.

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  2. This is good news, Jo. I can imagine this battle is taking all of your and your partner’s energy but it sounds as if you have good people working with you in the NHS and helping you direct your energies in the best way possible. Thinking of you and wishing you all the very best in the next round. x

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    1. Thanks Kath. yes it is tiring – another round of chemo today etc. but as you say we have a good team and at least we have hope now. Thanks so much for your kind thoughts. All the very best Joxxx

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  3. So relieved that the news, although still not good, is a step in the right direction. Sending positive thoughts and cautious optimism to you all x

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    1. Thanks Jane and yes you are absolutely right – this is cautious optimism. Not everyone understands this – that it is not over yet, not by a long shot. Nevertheless, this is the best news we have had for a while. All the very best to you and yours Joxx

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  4. How specific, articulate and positive you are. I thank you for sharing with so much clarity. I believe in miracles, and clearly so do you. I wish for a full recovery and pray for the miracle, which is already making advances. My love to you both.

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