Not long after my last post I went through a bit of a slump. I felt tired, a bit yucky, just pretty weary. The weather mirrored my mood, grey and dank, and I developed an unnatural fondness for my quilt. It became Robin’s bête noire; his spirits would dampen each time I’d loll towards the bedroom, muttering “I’m off to hang out with quilty.”
When the mid-May visit to Manchester loomed I finally rallied, snapped out of it, bounced out of bed and reminded myself it was time to get on with living. The title of this post is from a remark by a patient on the American ‘Cancer Compass’ site “Living above the grass rather than below it.”
To truly achieve that you have to be pretty self-propelled. From early diagnosis it seems there has been a bunch of people willing to “help with my dying” (as one oncologist put it) when what I have been really interested in is meeting anyone who can help me with my living. Of course that is the core purpose of the clinical trial but other than popping those pills, which can feel like a frustratingly passive act, there isn’t a lot of additional support.
Sure, the local GPS will see me anytime to discuss my palliative pain control. Yes, I’ve been invited to visit the local hospice (me; “No way José”) and the Maggie’s Centre kindly offered a counsellor to help me explore my feelings. If I wanted to I could avail myself of a myriad of complementary therapies. Head massages, group therapy sessions, relaxation masterclasses, ‘expressive art’ and such like are all practically on tap to terminal cancer patients – presumably to ease the process, provide distraction and soothe you into a state of calm acceptance.
I’m not knocking any of that. Refining pain control is essential to achieving any quality of life, the periods I met up with a counsellor were extremely helpful and I’m not underestimating the benefit of the odd aromatherapy session. However I had been hoping for something more concrete – desperate for someone to say “do this!” (e.g., eat flaxseed, munch berries, quaff alkaline ionised water) or “don’t do that!” (caffeine, mobile phones, dark hair dye), as if the medical profession had some secret ‘top tips’, some superior knowledge about all the anti-cancer theories swilling around the world wide web, which they would now deign to share with me.
Of course it doesn’t work like that. At a time when you are profoundly interested in lengthening your odds the medical profession can do no more than shrug and direct you to the most up to date stats on your condition. As one oncologist put it to me “We can accurately predict what will happen to a thousand patients with stage iv kidney cancer but we can’t predict what will happen to one individual, to you, Sharon McCord.”
When I was first diagnosed with a tumour on my kidney I read up on rcc and every bit of literature suggested that my multi-disciplinary team would include a physiotherapist. This made sense. After such a big operation it seemed critical to have some advice on how to get back to physical fitness. Never happened. Indeed the day I was discharged the nurses flipping ibuprofen at me looked affronted when I asked what I should do to rebuild my physical stamina. Over time my GPs have simply suggested that I should exercise but shouldn’t overdo it – i.e., nothing more than general common sense. Even I know I should avoid becoming a bedsore-encrusted couch potato but probably shouldn’t tackle serious weights at the gym.
Less than a year later, when I got the stage iv diagnosis I reckoned I might get some professional steer on diet and lifestyle. Nada. I gradually discovered that NHS cancer nutritionists are almost solely fixated on helping patients to fight weight loss so every cancer nutrition leaflet is full of tips on boosting the calorie content of meals.
My ‘Nutrition’ page on this website has never developed beyond the original sarcastic content (the apple) because ten months on I don’t feel massively more informed about that issue. I recently privately corresponded with a fellow cancer patient on this topic and realised that I had introduced a lot of changes to my diet. This has been on the basis of various bits of research but mainly the changes are just doing what has instinctively felt right. I may do an update soon covering this in more detail but I’ve been reluctant to post anything which could add weight or credibility to what could be spurious.
This week Robin and I are travelling to Manchester to attend the James Whale Patient Day on Wed 15th June as guests of the charity, which has generously offered to cover our travelling expenses and hotel accommodation. We’re looking forward to learning as much as we can from both the expert speakers and fellow patients. I recently realised that I haven’t actually met or had a face to face conversation with a fellow rcc patient yet so, although the ‘group hug’ ethos is anathema to me, it will be interesting to share experiences with others in this setting.
A quick update on my medical progress – on the last visit to The Christie I met with Professor Noel Clarke, the esteemed urological surgeon, who confirmed that his team are now prepared to operate to remove my twelfth rib and the tumours, which I only recently learned are in my peritoneum. This information is more enlightening than the original patronising “you have some tumours in your tummy” diagnosis. Frankly I hadn’t even heard of the peritoneum before – I’ve since discovered that only 1% of kidney cancer metastasis occur there. Professor Clarke assured me that he didn’t need to see another scan and that the operation, which will involve a 7 to 10 day hospital stay, would be scheduled quite soon.
We went home buoyed with excitement. When we began the trial at The Christie I was assured that there was no cure around the corner but this operation could provide me with remission – and more time to hope for the next big medical advancement. It is a wonderful injection of positivity although, as I’ve been disappointed about this before, until I am on the operating table there will always be a sceptical bit of me holding back from totally embracing this new hope.
Indeed despite assurances that the operation would be scheduled imminently weeks went by with no further word. Kerry, a clinical nurse at The Christie has since investigated and discovered that the operation is pencilled in for Monday 4th July but we’ve had no confirmation of that so we continue to live in this frustrating limbo, constantly ‘on stand by’ and unable to make any plans – but of course, that’s a small price to pay for what could be a remarkable opportunity.
We also met with Professor Hawkins during the 18th May visit and while he did feel that an operation would be my best option he was careful to point out the downside – which is opting out of the RAPTOR trial for everolimus (Afinitor). If the operation is unsuccessful the drug is not available in Scotland and is only available in England and Wales through an appeal for funding. It’s a dilemma but I can’t walk away from the glittering possibility of remission which only the surgeon’s knife offers. I know it’s a big operation, involving the removal of muscle as well as the rib, and will involve a difficult recovery but the prize at the end of all that is just too tempting.
Afinitor has been wonderful for me; my tumours may have grown but the cancer hasn’t spread to other areas of my body and, overall, I have tolerated the drug well. My latest side effect was an episode of folliculitis (inflammation of the hair follicles which results in an itchy scalp rash and can lead to permanent hair loss) which was ghastly but quashed by a week of high dosage penicillin before the hair loss got out of control. I’m so grateful I was able to participate in the trial, and for all the assistance from all the medical team associated with it, particularly Professor Hawkins, but I’ll be glad to stop taking the daily pills and to hopefully get rid of the fatigue of taking the drug long-term, a fatigue exacerbated by the daily regime of 90mg of morphine and 1200mg ibuprofen.
I’ll stop taking the drug a fortnight before the operation – so if the Independence Day appointment is confirmed I’ll pop the last pills on June 19th. In the meantime I’m scheduled for another CT scan at The Christie on June 17th – here’s hoping that doesn’t throw a spanner in the works. Bad news now will definitely drive me back into the embrace of quilty.