A Note to Myself (on my partner’s cancer)

A Note to Myself on my Partner’s Cancer

Five months ago, my partner was diagnosed with lung cancer. Words cannot capture the devastation of that day but I tried to explain some of the impact here https://johoganwrites.wordpress.com/2016/10/08/the-cough/.

Looking back, perhaps we shouldn’t have been so surprised. By the time we ourselves had taken it seriously enough to go to the doctors and progressed beyond the misdiagnoses, the scans and the biopsy, my partner could not even get dressed without being reduced to a coughing, breathless wreck. We were warned that cancer was an (unlikely) possibility but we weren’t prepared to hear that it was advanced and inoperable; that chemotherapy might help reduce the symptoms but could not provide a cure.

We clung to the hope that my partner would have a biomarker that would make him eligible for some of the new gene therapies that are now transforming the treatment of lung cancer.

He didn’t.

Our indefatigable consultant told us to ignore the fancy new drugs, disregard the statistics and focus instead on my partner’s individual case. I wrote about this here https://johoganwrites.wordpress.com/2017/01/22/the-quantification-of-hope. But basically for those who don’t have the biomarkers, up to 25% of lung cancer patients can have a good response to traditional chemotherapy. My partner was therefore prescribed four courses of combined chemotherapy to push the cancer back as much as possible, to be followed by ‘maintenance’ chemotherapy indefinitely.

Every three weeks, my partner spent nine hours on an NHS ward receiving a combination of Cisplatin and Pemetrexed and an unquantifiable amount of care and skill from the doctors, nurses and fellow patients. Every third Monday night, we would go home with a shopping bag full of medicines to counter the sickness, indigestion, skin rashes, nerve damage and other side effects of chemotherapy, although nothing could take away the crippling tiredness and the indescribable grottiness. At the end of the prescribed four cycles, the cancer that had crawled all over his lungs like ivy had been pushed right back. In fact, the cancer had responded so well to the chemotherapy, that our consultant suggested that instead of the four cycles normally prescribed in Europe, we should try six, in line with a recent Korean study.

We did and last week the results of the latest scan continued to show improvement, so much so that we agreed to take another gamble. Instead of receiving ‘maintenance’ chemotherapy in an attempt to stop it growing back (as usually happens after four cycles of the combined therapy) we would try a policy of ‘watch and wait’. This means my partner will have a scan every six weeks, with chemotherapy only if the cancer grows back in a clinically significant way.

The usual adjectives – happy, relieved, thankful? – are suddenly too weak and one-dimensional. My partner has a rare form of lung cancer that cannot be cured. It has retreated and our objective is to hold it at bay for as long as we can until further medical reinforcements arrive. He is so very happy to be free from chemotherapy but we both know that every cough, every moment of breathlessness will cause huge anxiety in the build up to each scan.

I am writing this on a Monday night when ordinarily I would be typing up the drug chart for the week whilst my partner sleeps off the first day of chemotherapy. It is extraordinary to us both that we can now put away the shopping bag full of medicines and focus on building up his strength and stamina as spring approaches. But although we are both desperate for normality, I am wary of letting this moment go; of allowing the miraculous discoveries about ourselves and others to be lost in the clamour of the everyday. So lest I forget, I am writing myself a note of some of the things I have learnt or remembered during the past five months.

Note to self:

Hope is what kept you both going. You pride yourself on being a skilled reader, researcher and analyser of facts. Yet following the diagnosis, you could not bear to read the internet. The evidence was too bleak, the facts too grim. What mattered most to both of you during those first dark days was hope. You were desperate to hear about people who had been given months to live but were still living five years later; of people with tumours that mysteriously disappeared. You clung to stories, words, facial expressions – anything with a hint of hope – because the alternative was simply unthinkable. Despite boasting – yes boasting – for years of your atheism, you found yourself praying for a miracle as you rubbed your partner’s back every night, visualising yourself wiping away his cancer. Remember this with humility and do not retreat into intellectual arrogance. Belief is a journey and you are still travelling. You would have inhaled a post like this back in those dark October days, so no matter how awkward this is, keep sharing. Other people need hope too.

Love is all that matters. As your partner heals, he is unlikely to become a born again DIY expert. He will probably still throw water around the kitchen when he washes up and – inexplicably – believe that Bob Dylan can sing. But this dreadful episode in your life reminded you of how much you loved him. When presented with that terrible diagnosis, his concern was for others, not himself, demonstrating all the gentleness and quiet compassion that first drew you to him. Truly, he is your better half.

People are so very kind. You knew this but you were blown away by the extraordinary compassion shown not just by family and friends but ‘strangers’: people from twitter who sent us personal messages of support and as you wrote about here, extraordinary, precious gifts. https://johoganwrites.wordpress.com/2016/12/04/somewhat-bigger-than-a-christmas-card

It truly made a difference, giving us energy, hope and warmth when we needed it most. When you are once again consumed by the negativity of news and the minor irritations of work, do not forget that people are essentially good. In fact, do not let yourself be consumed by work again. Your boys need you more than your office does (see above re love is all that matters).

There is a lot of loneliness out there. Do not forget that the world you inhabited and the future you feared is still there for many, many people. Remember how the high street filled with a silent army of people like you after lunch and before the school rush, frail, widowed and bereaved people wandering around Boots seeking compassion and conversation. How you wept silently in the aisles of Waitrose as you stared at all the lovely food he could no longer eat. https://johoganwrites.wordpress.com/2016/10/15/firsts-and-lasts

Never forget that every day in every supermarket, probably somewhere between the crisps and the biscuits, someone’s heart will be breaking. Reach out to these people. And remember that single parents are superheroes. When it was just you working full time and doing all the cooking, cleaning, caring and waiting for the dryer to finish at 1am, remember that single parents do this Every. Single. Day. They don’t get a fraction of the sympathy and support you were offered, so when you are able to, be the person who makes that offer.

Be thankful. As one of my partner’s favourite song says, just be thankful for you’ve got. We may not have a Cadillac but we do have the gift of more time together. I am not sure who or what we should be thankful to for this precious gift. When we were told the results of the scan, I said it was thanks to the NHS and our wonderful consultant. My devout 16-year-old said it was thanks to God. My partner said it was thanks to the blanket someone had so lovingly knitted for us. Either way, do not allow this state of thankfulness to be lost in the minutiae of everyday life. Feel it, say it and most of all, show it.

My love is this fear. You are in a better place now than ever seemed possible five months ago but the future is shadowed with anxiety and fear. Every cough will stop your heart. You will monitor his breathing, watch his appetite and measure his weight in an eternal vigilance against illness. To love someone is to live in a constant state of fear. But you knew this. Colours by Yvetushenko became ‘our’ poem when your partner copied it out onto a brown paper bag and stuck it to your student wall twenty-six years ago. You were and are love’s slipshod watchman.

But enjoy the colours whilst they last.

 

When your face

appeared over my crumpled life

at first I understood

only the poverty of what I have.

Then its particular light

on woods, on rivers, on the sea

became my beginning in the coloured world

in which I had not yet had my beginning.

I am so frightened, I am so frightened,

of the unexpected sunrise finishing,

of revelations

and tears and the excitement finishing.

I don’t fight it, my love is this fear,

I nourish it who can nourish nothing,

love’s shipshod watchman.

Fear hems me in.

I am conscious that these minutes are short

and the colours in my eyes will vanish

when your face sets.

 

Yevgeny Yevtushenko

 

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8 thoughts on “A Note to Myself (on my partner’s cancer)

  1. “Never forget that every day in every supermarket, probably somewhere between the crisps and the biscuits, someone’s heart will be breaking.” So true – the world can seem such a sad place where you’re attuned to such things. Happy to hear your good news, Jo. Best wishes to you all

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  2. Hi Jo. I’ve been sat racing through your blog for the last fifteen minutes trying to find out what happened with you and your partner. I’m so so glad he is better!
    I just want to send love and healing.
    But also – I know you probably know this from all your research – but don’t let him eat ANY sugar (including the small amounts in fruit and carbohydrates), cancer cells eat and thrive on it. My dad is a doctor and has been researching this for a long time.
    Sending you all the best,
    YOU CAN DO THIS
    you both can
    x

    Like

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