Make it go away

Two months ago, my partner began a new clinical trial which we hoped would at least halt, if not reduce the cancer that was rapidly spreading through his lungs. To gain access to these promising new drugs, he underwent an open lung biopsy, suffered life threatening infections and then waited an agonising five-months to find out if he had the necessary genetic mutations. He did, and I wrote about our hopes here https://tinyurl.com/ya88fjrc

The trial meant that instead of a gruelling regime of chemotherapy, my partner took just one tablet a day. If it worked, the drug would perform the job of a defective gene and halt the growth of cancer cells, with a chance that over time the disease itself might actually reduce. We recorded every symptom in a diary, went for blood and ECG tests every fortnight and after two cycles of the drug, a CT scan was taken to assess the impact.
Three weeks ago, our Consultant told us that unfortunately, the scan suggested disease progression. My partner has a rare form of cancer, so these things are not clear cut, but on balance, we reluctantly agreed that my partner was getting worse. He could barely walk the few steps to the Consultant’s room, and even as he tried to (initially) suggest it might be working a bit, his words were lost in a bout of breathless coughing.

To my relief, we moved quickly onto what else might be done, and my partner agreed to return to the chemotherapy that had worked so well nearly two years ago. It is a tough and toxic regime that will wipe out the first week in every three and put him at risk of infections in the second. Some might wonder why he would punish his body further with third line chemotherapy, but our hope is that once again, it will push back the disease so that he can regain some mobility. At the moment, every trip to the toilet is exhausting and upsetting, and going out or driving is simply no longer an option.

My partner was getting worse by the day, and the NHS once more responded with the necessary speed and urgency. All the pre-chemo tests and drugs were administered last week, and so this Monday, he was once more sat in a chair and hooked up to a drip for ten hours, before returning home with a carrier bag full of drugs to manage the side-effects.

Friends and family have been brilliant, and many have asked what you are probably thinking now: crikey, how are you all coping? When my partner was first diagnosed, I would usually say ‘fine’. Partly because it is my personality to close such discussions down, but mostly because it was true. After the initial grief and shock, there was still breakfast, lunch and dinner to make and eat; the boys still had to go to school and do homework and exams and I had a full-time job. Life with children has a momentum to it. It’s like being on an escalator during the rush hour, where you are forced to move forward or get lost in the crush.

But the past few weeks have made me more reflective and honest. When people ask me now how things are, I say it’s hard. Really hard. Unless you have ever lived with someone with lung cancer, I am not sure you can imagine how terrifying and upsetting it is to witness someone you love struggle to breathe. It is the most basic of functions that we all take for granted: breathe in, breathe out. But when your lungs cannot expand, and your oxygen is reduced, any exertion can leave you gasping and fighting for air. All I can do is rub his back and pray these sights and sounds will not haunt our boys for the rest of their life. And if it traumatises us, what must be it be like for him? To feel yourself unable to breathe? I am writer. I imagine things all the time. But that is one thing I cannot bring myself to imagine.

It is not so much the extent of his illness that makes things so hard right now, but the length of time we have all had to endure it. My partner has been suffering with lung cancer for over two years now, although he wasn’t diagnosed until September 2016. Two years where we have swung between anxiety, knowledge, hope and despair, many, many times. Two years during which time my poor partner has been given the worst of prognoses, then to be told twice that miraculously his lungs have almost returned to normal, only for the cancer to return once more. Two years of countless hospital admissions for lung infections including pneumonia and sepsis, when my young boys have had to cope with late night, frightening admissions to hospital and the monotony of visits, disrupted routines and takeaway food.

This is not a complaint. That my partner is still alive is a testament to the skill and care of the NHS. And it has not all been misery. After the first successful round of chemotherapy, we went on a family holiday to Skye. My partner was well enough to support my eldest through his successful GCSEs and witness him going on a rugby tour to Canada as a boy and return as ‘a man’. We have had two lovely family Christmases and birthdays and many tiny, precious moments of love.

Yet it has taken its toll on us all. We are fortunate to have been offered free family counselling from Macmillan. I have never had counselling before and I must confess, if it weren’t for the boys, I would never entertain the idea. I am a ‘coper’ by nature. I like to focus on solutions, not problems, and see myself as a fixer. Likewise, my partner is a quiet, unassuming Scot who rarely talks about his feelings with friends, let alone strangers.

But counselling has made us realise and accept just how tough our lives are. When the counsellor asked me what my objective from our sessions was, I said I wanted the cancer to bring us closer together, to make us kinder and better to each other. She looked at me with a kind of appalled pity and said, ‘that’s not very realistic is it? You are going through a period of extreme trauma, and this is going to be really, really tough’.
Our counsellor then asked me how do I cope? I have been thinking about this, and I don’t think any of us really cope. ‘The word ‘cope’ implies a degree of choice or control that people affected by cancer simply don’t possess. This terrible illness is something that like it or not, we all have to endure.

My partner endures it with a gentleness of soul that humbles us all. He is not angry. He is not bitter. And he never, ever complains. But when the coughing and breathlessness gets very bad, he increasingly prays to a higher force to help him. And most heart-breaking of all, to us he whispers, ‘I am sorry.’

Of course, he has nothing to be sorry for. Every day with him is a gift, and today – Father’s Day – we will try and make him realise and believe that. And although his body is still suffering with the toxic effects of chemotherapy, we hope and pray that the cancer is suffering more, and that once again, it will be pushed right back.

There is a song in my head on a loop at the moment: This Woman’s Work by Kate Bush. It was inspired by the pain of childbirth, but the lyrics capture exactly how I feel right now.

I know you’ve got a little life in you yet
I know you’ve got a lot of strength left
I know you’ve got a little life in you yet
I know you’ve got a lot of strength left
I should be crying, but I just can’t let it show
I should be hoping, but I can’t stop thinking
Of all the things I should’ve said
That I never said
All the things we should’ve done
Though we never did
All the things I should’ve given
But I didn’t

But most of all, it is the tremble of fear her in voice, the sob of despair as she sings:

Oh, darling, make it go
Make it go away

For this is what we are all desperately hoping and praying for.

Please, please. Make it go away.

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