A few days ago we were driving back from our latest trip to the oncologist at the Sutent clinic at the Western General hospital in Edinburgh. As we stopped at a traffic light Robin eyed me warily.
“Now I want to say something but you have to promise not to slug me ‘cos I’m driving,” he announced. I raised a suspicious eyebrow. “I think what you just did was very ‘brave’,” he said and flinched.
I pulled my punches. I might even have smirked. “Yes,” I conceded. “For once I did feel quite brave.” What I had just done was walk away from treatment: I turned down a prescription for an expensive drug which last year we had walked over hot coals in an effort to secure.
It’s a little complicated. I haven’t updated in a while. Partly that is because there wasn’t much new to announce but mainly it was because Sutent drained every last ounce of mental and physical energy from me and, latterly, was making me incapable of stringing a sentence together. I had been a little nervous of side effects such as nausea, white hair and blistered hands. I hadn’t expected the erratic blood pressure, plunging platelet count and a non-functioning thryoid.
I felt bloated, exhausted, confused and, occasionally, thought I was about to have a stroke. A few Sundays ago , when I overslept, Robin admitted he was scared to come into the bedroom and wake me up as he feared I might have died in my sleep. A little voice in my head started questioning the wisdom of persisting with this ‘life-extending’ drug and suddenly the quality of life versus quantity of life issues snapped into sharp focus. Sure, the drug was keeping the cancer at bay but it was taking a significant toll on other aspects of my health. My so called ‘precious’ drug was starting to feel like poison. I loathed the thought of dying from a side effect of Sutent and realised that, despite the length of time we have spent living with this terminal prognosis we were in no way prepared for my actual demise.
The routine CT scan of last week loomed large in our diary. I entered the consultant’s room as a walking mess of conflicting emotions. The scan wasn’t good but it wasn’t terrible either. It showed quite significant growth of the previously stable diseased lymph nodes across my chest and growth of the largest tumour, the one entangled in my ribs and spine. I wasn’t surprised, I had been experiencing more pain and had recently had to slightly up my morphine dosage. My consultant explained that he was prepared for me to continue with Sutent for a little while longer, but only on a continuous dose, without the two week break I had come to depend upon.
My foggy brain suddenly cleared and I was suffused with crystal clarity. “I’m going to stop now,” I told him. He smiled. I think he was relieved. He admitted that once Sutent stops working it is usually a case of diminishing returns and estimated 75% of those who pursue this dosage experience growth at the next scan. Robin immediately focused on the 25% who remain stable but I felt past clinging onto morsels of hope.
I refute absolutely the notion that I am “giving up.” It’s not even just about quality over quantity. I firmly believe that I will live longer by stopping Sutent, halting the horrible toll it was having on my metabolism and foccussing on keeping myself as healthy as possible. I appreciate that decision may be difficult for some. I am not looking into going on another clinical trial or lobbying for another drug. I want to pour all our effort and energy into making the most of the time I have left.
The oncologist feels I am not in immediate peril, my liver is in good shape and the cancer hasn’t spread to new areas. He is confident I have months, rather than weeks ahead of me but counselled it would be unlikely to be as much as a year’s grace. I no longer need to be immersed in a world of hospitals, onocology clinics and CT scans. I will simply be under the care of my GP who will handle my pain control. Eventually I will come under the care of the local hospice. If necessary I may end up having some radiation for the lung lesions if my breathing is overly compromised.
“What is the best thing I can do for myself now?” I asked. He smiled “Quite honestly it is just to make the most of every day from now on. Go on holiday.”
So, that is what we have been doing. I knew it was the right decision as I practically floated out of the surgery, I felt light as air. Robin struggled with the loss of hope at first but conceded he has hated how Sutent had destroyed me.
Over the past few days my health has visibly improved and he has sighed with relief to have his wife back at his side. Now that I have been off the drug for a few weeks I have lots more energy, much more lucidity. My face is ‘unpuffing.’ I am laughing again and I am spending less and less time in bed.
I am no longer struggling to find obvious words. I’m gradually re-emerging as a participant in conversations (although I still flail a bit during hubby’s lengthy diatribes on the lunacy of our existing taxation system) rather than a detatched onlooker.
Truly, I am really savouring life now. The day before the visit to the oncologist I had been very saddened to hear of the death from cancer of Jonathan Speirs FRIAS, the Scottish architect and celebrated lighting designer of Speirs + Major. Jonathan and I had met a handful of times over the past few years, rarely talking about our shared terminal prognosis. The first time, in recent years, was when I was still working and profiled his practice for a cover story for RIAS Quarterly. It was one of the last significant pieces of work I did and was a bit of writing I was quite proud of, although it was quite a struggle to compress all his incredible achievements into one article. (You can download it from the Speirs + Major website).
The last time I met him was by chance, we both waited for hours one evening in February for a CT scan at the Western General. We discussed the home he was completing in New York. There was only one occasion when we discussed cancer, when we were slugging red wine and propping up the bar at the RIAS Fellows Dinner in 2011, joking about being the last men standing while all the healthy bods had toddled off home. Jonathan was a lovely calm presence, very likeable. Neil, my boss, paid fitting tribute to him in this obituary in The Scotsman.
When I heard of Jonathan’s death I felt an urge to celebrate life. We had lunch with Charlene and Soni then drove to North Berwick for a round of putting. We came home and pulled out a bottle of champagne we had been saving for months. To hell with procrastinating pleasure. No more of that. We popped the cork and toasted Jonathan.
This surge of vitality and new lifeblood has lasted all week. On Wednesday I met my sisters Louise and Jackey for a lovely wander around the National Museum of Scotland. This astonishing refurbishment by Gareth Hoskins was the fitting recipient of the 2011 RIAS Andrew Doolan Best Building in Scotland Award. That night my colleagues toasted the launch of the inaugural RIAS Awards at an event in Glasgow. I felt such a pang not to be there, such an overwhelming sense of life moving on without me.
The following day, after returning from a course on relaxation at the Richard Murphy designed Maggie’s Centre in Edinburgh I resolved to join Jackey in raising funds for Maggie’s Cancer Caring Centres. Jackey, Robin and I will be participating in the Challenge Scotland event at Holyrood Park in Edinburgh this Sunday. It’s not exactly an overly ambitious endeavour – I’ve called it ‘Strolling for Maggie’s’. I am going to attempt to hobble around the park for a mile. As Robin, as ever, will be at my side, I suspect I may be leaning on him in more ways than usual.
I’ve put together a sponsorship page for our modest endeavour.There are more details at http://www.justgiving.com/Sharon-McCord. It may seem feeble but I am excited that I am once again making plans and looking forward. For a while there there wasn’t much of that going on.
I know it’s hard to keep digging into your pockets in this difficult economic climate but if you can spare a few pounds we would be so grateful for your donation. It’s for an excellent cause; Maggie’s Cancer Caring Centres have significantly improved the care for cancer patients in the UK and they have fundamentally transformed expectations of patient environments. Through my career at the RIAS I was fortunate enough to meet Charles Jenks, the husband of the late Maggie Keswick who founded the charity. You can read more about the great work of the Maggie’s Centres, which originated in Edinburgh and have since blossomed across the UK, on the charity’s website.
Please help Team McCord to raise some funds via our Justgiving page using the button below.
I promise I won’t ever ask you for money again!