Hope is a thing with Protein Inhibitors

Eighteen months ago, my partner was diagnosed with a rare and incurable form of lung cancer. It is impossible to convey the number of journeys our family has had to make between fear and hope during that time. I’ve tried to capture some of the headlines in my posts before and I’ll try and summarise them here before explaining where we are now.
When we first met our Consultant Oncologist, things couldn’t have been bleaker. The nature and extent of the cancer made it inoperable, my partner had none of the bio markers that would make him eligible for some of the new immunotherapy drugs, and a needle biopsy had failed to yield enough tissue to enter the promising gene matrix trial. Our only hope was an aggressive chemotherapy regime that typically reduces the cancer in about a fifth of patients. Thankfully, my partner turned out to be one of those 20%, in fact he was a ‘super responder’, as the chemotherapy pushed the cancer right back until his scan looked almost normal. (It is very hard to write about this without using the word ‘lucky’, but as I have explained before, much of what happened to my partner was not due to ‘luck’ but the result of the skill and expertise of doctors and nurses, thanks to historic investment in the NHS and research).
That was last spring, and we celebrated by going on a family holiday to the Isle of Skye, something we had always wanted to do. Alas, within just a few months of stopping treatment, my partner grew increasingly breathless and the dreaded cough returned. On June 8th, whilst the country waited for the results of the General Election, we received the results of his CT scan which showed that the cancer had spread across both lungs. Once again, he underwent a gruelling chemotherapy regime, only this time, there was just a one in ten chance of it working. Yet again, against all odds, the cancer was pushed right back. Thanks to the NHS, my partner was able to walk and live an almost normal life once more, although this time we were much more cautious. We were warned it was probably a question of ‘when’ not ‘if’ the cancer came back, and one consultant suggested that because he had had two lines of chemo and two failed needle biopsies, there was nothing else to be done.
Despite this, my partner refused to give up hope. He asked our lead Consultant whether he could have an open lung biopsy to see if he had one of the 28 gene mutations that would make him eligible to take part in the Lung Cancer Gene Matrix trial, so that if the cancer did grow back, he would at least have some treatment options. Following consultation with colleagues, it was agreed that yes, despite the difficulties and risks involved, the expert team caring for my partner were willing to carry out an open lung biopsy. That was last November. The initial operation planned for Christmas was cancelled because of an infection, before going ahead in the New Year (when again he was admitted with another infection). Whilst we waited for the results (which we were warned would take 8-12 weeks), it became clear that the cancer was again progressing, and my partner was admitted with life-threatening infections (sepsis and severe pneumonia in both lungs), which I wrote about at the time.
Sepsis kills over 40,000 people a year, and patients like my partner admitted with severe pneumonia generally have a mortality of rate 30%, yet still he survived. And I am delighted to tell you that after all the waiting, drama and anxiety, just over three weeks ago we were finally told that yes, he does have one of the genetic mutations that make him eligible to participate in the clinical trial and that he has recently started taking the new medicine, a daily drug that in patients with particular genetic mutations, blocks and inhibits the growth of cancer cells. It is already in use for some patients with breast cancer, so this trial will assess its effectiveness for lung cancer. The doctors seem fairly confident that it will inhibit further growth, but we are also testing to what extent (if at all) it will reduce the cancer that is already there.
For us this is a real and pertinent question. Eight months have passed since his second round of chemo and five months since he agreed to an open lung biopsy, and during that (necessary) time, my partner has become dreadfully disabled. Our house and his body once again shudders with the debilitating force of his cough, and his life has been reduced to (exhausting) trips to the bathroom and an occasional foray into the garden. But as ever, we have hope. We have been here before, and he has got better before, and just writing this summary of our journey makes me realise just how amazing and resilient he is.
My partner was admitted again this week with another chest infection, where because our fabulous local hospital caught and treated it early, his breathlessness and cough are already showing signs of improvement. In fact, the day after he was discharged, he was even well enough to marry me, his partner of twenty-seven years. (Now before you ‘congratulate’ us, I have to tell you that as a feminist, I don’t agree with marriage at all, as my personal view is that it is an antiquated and patriarchal ritual based upon the transfer of property. But although I have ensured we have wills and other legal arrangements in place, I have had to accept that my partner simply isn’t well enough to even decide what to have for breakfast, let alone justify and explain our arrangements to bank managers and lawyers. So in the interests of our family, we agreed to swallow our principles and get married).
It was a very simple affair in a Registry Office with just two witnesses (my brother and his wife) who doubled up as our only guests. I expected to sulk or weep my way through it, but in the end, despite my fears it was a precious and joyous day. The tone was set by the usher who took one look at our aging faces and boring work suits and quipped, ‘I take it you’re not the bride and groom then?’ To his mortification we burst out laughing and said yes, actually, we were, and basically, we didn’t stop laughing throughout the rest of the ceremony, (where apparently, I said at least ten times to the lovely Registrar that I don’t believe in marriage). My brother and his wife spread out and filled the hundred seats with jokes, huge smiles and their memories of us when we first met twenty-seven years ago. We then met up with our two boys and had a lovely family lunch where we ate, drank and laughed some more. Against all our expectations, it was a truly authentic, joyous and loving day and even now we are still glowing with the memories that we made.
I still don’t believe in marriage, however, so please do not offer us ‘congratulations’. Our anniversary will always fall on the day that we first kissed, not the day we signed a piece of paper. I believe in the love I have for my partner, the twenty-seven years we have spent together and the many years I hope we still have before us thanks to the continued efforts of the NHS, the good wishes of friends and ‘strangers’, and the power of protein inhibitor drugs.
And if you or a loved one have cancer, then please take this post as my tossed bouquet, with all the luck, love and best wishes in the world.


5 thoughts on “Hope is a thing with Protein Inhibitors

  1. Totally agree about marriage. We eventually gave in and got married in much the same way – quickest wedding they’d ever had at Bodmin Registrar’s Office, apparently! In and out in less than 20 minutes, just two witnesses from my husband’s work, plus our jointly acquired five children, and the one I was carrying in my tummy. No reception, and only one night at a B&B as a token ‘honeymoon’. One of our baby twins had been seriously ill and hospitalised a few months before, which was when we discovered his father would have no say in treatment unless we were married. So we too swallowed our principles and married, both divorcees, both gun-shy about doing it again. Luckily, it took, and we’re still together, and just celebrated our 15th wedding anniversary (though we’ve been together eighteen years). So good luck with your journey. Wishing you both strength and joy. xxx

    Liked by 1 person

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