Sharon’s final words

Sorry it has taken so long to put Sharon’s words on the blog. It has been a tough time and doing these personal things for her makes it all the more final which has been hard to bear. Thanks to everyone for all the support. Robin.

my ‘ last words’;
“My family have always claimed I had a rubbish sense of humour which always annoyed me, it’s because I was over-sensitive to criticism and couldn’t bear to have them take the mickey out of me. I was always ‘touchy’ about that. They all said I was too serious and I’m about to vindicate their theory because I want to relate a few things about them now and its all serious stuff, with no gags to lighten the tone.

From my dad Jimmy I learnt a love of music, he introduced me to Johnny Cash! That appreciation was instilled in me from an early age and it’s a gift which gave me great pleasure throughout my life. It’s been invaluable in recent years, its helped me find a way through pain and confusion.

From my beautiful, loving mum Patsy I was taught compassion, although, stupidly, I didn’t recognize it’s importance and value until later years. She’s the most kind-hearted person I’ve ever met.

There was no pressure and no criticism in our McCord household. We were raised to the mantra of “Do unto others as you would have them do unto you” and kindness and respect to others was what was valued. Both my parents taught all their children that the most important thing in life was to be happy.

In my youth I pursued that happiness selfishly. I didn’t really understand where happiness was to be found and I took many errant steps, making mistakes which cast long shadows on my life. Achieving the happiness which my parents hoped for me proved difficult.

Then happiness came effortlessly into my life – but more of that anon. In fact, in the past few years I’ve realised it’s actually very easy to be happy – you simply have to properly value those who love you. That’s where profound happiness is to be found.

My older sister Jackey introduced me to the love of reading, a passion which has sustained me though highs and lows. I’ve also marvelled at her kindness. Few people know how much time and money she has always devoted to helping others. A few years ago she gave me an extraordinary gift, a donation to the Kiva charity. She opened my eyes to the rewards of selflessness. I tried to follow her example and be a kinder person myself.

I was always close to my wee sister Louise. When we were younger I made the effort to be brave and look out for her. If anyone threatened her I wanted to tear them to pieces, and frequently tried to do just that! In return, as adults she has always looked out for me so I have always known and been comforted by the fact that no matter how bad things were she had my back. She gave invaluable support to Robin & I at a difficult time in our lives and we were always so grateful for that. She may have been the wee sister but she has the courage of a lion. Ive always known I could depend on her, she would fly to be by my side if she could.

I couldn’t have been prouder of my brother Jason. He was the longed for son and brother but he survived the weight and pressures of such heavy expectations to grow into an outstanding and accomplished man whose humanity has never ceased to astonish and inspire me. I always regretted I hadn’t been a greater part of his life but he has always held a special place in my heart.

The most important thing about my family is that they could never be disappointed. They were always a haven. We have all been able to count on support and loyalty from each other. It’s been unconditional love all the way. That’s more precious than any amount of material wealth.

That support was also always there from our extended family. I benefitted from that hugely as a child but again, I didn’t truly appreciate it until I was an adult. I was so lucky to have such loving aunts and uncles, and I also took such pleasure from the affection and support of my cousins, in particular from my ‘Facebook cuz’s’ over the past few years. One of the very best things about our wedding was being enveloped by family love – and of course not just the love of the McCords, Timmins’, Aldridge’s, Pedens, Reynolds and Gaffneys but also the love of my other family, the McKechnies – Robin, Joan, Andy & Katy and all my new aunts, uncles and cousins from that family. I cherished that.

That wedding day was also a wonderful reunion of so many good friends. Not all were there. Throughout my adult years I’ve been dazzled by my friends qualities; Roz’s luminosity, her sensitivity, Paul’s charisma, Alison’s compassion, Karin’s grace, Soni’s loveliness, Tracy’s support, Carol’s conversation and listening ear, Wattie’s generosity, Eilidh’s big heart, Helen’s sweetness, Colin’s warmth, Charlene’s empathy, Neil’s kindness…

Well, I can’t name all my friends or all the qualities they have brought to my life – I can simply state that they have all made it golden. I’m so glad that I had the time in the past few years to re-establish some older friendships, Our friends have been the source of great comfort to Robin and I.

Anyone who knows me knows my aversion to cliches (Neil can attest that I hate puns even more) but I don’t know how else to express this simple fact; I have been rich beyond my dreams. I’ve had a loving family and such caring friends but better still the love of my life synthesized family and friendship completely.

Words are just too inadequate to express how fortunate I always felt to have met my greatest friend; I cherished every day I spent with Robin. It wasn’t always plain sailing but even in the stormiest of times I never doubted that I loved him fiercely. We count ourselves lucky to have spent the past few years marvelling at our special connection and there wasn’t a day when we didn’t tell each other ‘I love you’. Robin has the biggest heart, the most sensitive soul and the most amazing sense of humour. He always made me laugh and he made me a better person. He never judges other people & he taught me that lesson. He taught me so much and he cared for me with such tenderness but he never let me feel guilty that he prioritised me so much. We literally fell in love at first sight. He was my partner and then my husband but first and fundamentally he is my soulmate

Some people live a hundred years and never know the astonishing delight of such love. Since meeting Robin I never doubted my good fortune. He was my religion. I put my faith in him and it has proved to be a faith which was well rewarded. He was the greatest gift life could offer and loving him and being loved by him was my greatest joy. ”

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Sharon McCord 26/2/1967 – 11/11/2012 Rest in Peace

Sharon’s ‘Final Words’ will be posted following her funeral on Friday 26th November.

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While I still can…

I can’t believe it’s been over two years since I set up this blog in August, the date I received a terminal prognosis of stage 4 kidney cancer (after a nephrectomy of my right kidney and the gruesome 18cm tumour, a papillary renal cell carcinoma, in September 2009). Shamefacedly, I also can’t believe it has taken me almost three months to update the website. My original intention was to keep up a reasonably consistent flow of info and hard data relating to my symptoms and indeed to symptom control. I would need to exercise candour and be blunt at times.

Over the past two years I’ve often meandered from those loftier intentions but I’ve been happy to go with the flow. Its been a time of such rapid changes to our day to-day lifestyle that Robin and I have learnt that flexibility is the most important weapon in our arsenal. We have to adapt, we have to keep looking forward and know beyond doubt that there’s no point in wasting time feeling sorry for yourself because with every new side effect or disease progression, there is a whole new array of stuff you can’t do any more – I’m long past the jealous lump in my throat stage when I see someone racing along the beach helter skelter, now its more a case of mournful sniffs that I need  to conduct a military style campaign to somehow slide a sock onto a numb right foot, without setting off a barrage of nerve pain down the right calf.

Yes, pain has become a new, very attentive, visitor. But more of that anon. Let’s dwell on the good stuff for a bit. We actually had an incredibly jolly summer. This was kickstarted by a huge degree by the amazing bolt of affection and support Robin, my sister Jackey and I received for the Challenge Scotland Walk, in aid of Maggie’s Centres. We raised over £3,500. Indeed, with Gift Aid the final tally for the charity should be over £4,000. Thanks hugely to everyone who supported us. I know I still haven’t managed to contact and thank individually everyone when has contributed but I am on the case, I promise!

We did have the amazing summer we planned, filling days with visits to and from family and friends; a hilarious, nostalgic afternoon of reminiscing with Paul (on a whistle-stop lunch in Glasgow via London), Wattie, Stuart and later Abigail; the Rankins treated us to lunch in a fab new gastropub near them; yet another amazing lunch at Angels with Bagpipes with Carol, our hilarity-filled afternoon was completed when her generous spouse David showed up and insisted on covering the bill; a sunny lunch with Helen on the prom seats of the Beachhouse Cafe; drinks with Soni and Mike; an overnight stay with Tracy and Graeme, which felt akin to being pampered at a luxury hotel; an impromptu family fish supper party at my folks after our plans for a restaurant celebration of my wee sister Louise’s birthday were stymied by my mother accidentally gashing her leg in the morning, meaning we’d all spent the day at St John’s Hospital’s A&E, dashing in and out to get updates on the Wimbledon final scores.

Both Paul and Eilidh and Grant made a few trips up from London, hanging out and cheering us up. Neil and Josh hosted a couple of great lunches, including one with Carol and David.. Wattie, Stuart and Abigail bravely made the trip east from Glasgow to join us in a meal at our beloved Espy bar on the prom, as did Colin, Susan and their dog Ronnie the previous week. Our other favoured local eaterie, the Birdcage restaurant in Musselburgh also saw plenty of action, I met my colleagues Lorraine and Louise for a very long Friday afternoon lunch and Clan McKechnie convened there when we all met up for Andy and Katy’s summer break from Dubai. We had a few very enjoyable days with the bro and sis-in-law, peaking, for me, at the moment at the end of an arduous afternoon of putting on our usual links course overlooking North Berwick harbour when my ultra-competitive, golf-playing brother in law, Andy had to concede his walking-stick impeded, gormless sister-in-law had just beat him.

There was a previous moment of glory on our favourite green: a few weeks before, as the Percy Mussett family force annihilated Robin and I’s game I managed to pull a hole in one as a feeble distraction against our mortifying scores. It didn’t make sense, we had spent the whole day on an illuminating visit to the East Lothian Museum of Flight. The plan had been to exhaust them, trailing around Concorde and endless hangars of classic aeronauticals, then spring the putting on them. We hadn’t anticipated that we’d be leaden with exhaustion while they all skipped merrily around, Alison putting in a score sheet of starry victory.

We also indulged in the experiential; highlights including attending a spine-tingling, choral performance of Beethoven’s Ninth; in one of the last weeks during which I was still relatively mobile I also managed to see one of the best shows on the fringe, courtesy of Alison’s excellent contacts, the festival sensation, an acclaimed South African Mies Julie, a sensual, blistering interpretation of the Strindberg classic which I’d never seen before, and which I was exceptionally grateful to Alison for getting the tickets and taking me along to.

Most amazingly we managed to get our timing right and just as I was starting to struggle to walk we scheduled our anniversary gift from Paul and Josie, a trip on a small seaplane from Cameron House over Loch Lomond and across the West Coast. It was stunning, simply sensational and we savoured every minute of it.

Robin and I also finally made good on a promise to avail ourselves more of the incredible range of National Museums and Galleries in our home city, Edinburgh. Over the summer I spent various days exploring the wonders of the converted National Museum of Scotland in Chambers Street. With Eilidh and Grant  I saw an astonishing collection of contemporary Scottish tapestries in the stunning Festival exhibition at the excellent Dovecote Studies; it’s an incredible conversion of the old Infirmary Street Baths by Malcolm Fraser Architects and a fantastic business model incorporating a shop, cafe and spaces for corporate rental around a central gallery where you can actually view today’s tapestry artists at work.

I also spent a day with a dear friend drifting between the modern art gallery in Belford Road and the National Gallery at the Mound, taking advantage of the courtesy bus linking the two, although admittedly we ended up spending more time in the respective cafes, scarfing on rolls, soup and cakes, than we did perusing art. At the end of a great day I hobbled at a click along Princes Street Gardens, heading to La Piazza Italian restaurant on Shandwick Street where I was meeting a bunch of girls from work for what turned into a very enjoyable, chilled, yet chatty evening. At one point I nipped out to lift some money from my bank card and was horrified to discover how weak I was, how difficult I found it to simply…walk.

The following day Paul, who had arrived for a quick visit, accompanied us back to the Modern National Gallery complex where I purchased a funky new walking stick – matt black and covered with day-glo colourful whorls. Inviting this new accessory into my life was potentially hazardous but I was determined to be stoic about it.

Compromises are constantly snatched from you. Your task, and frankly it is for your own good as well as the peace of mind of those around you – is to accept it. Accept it and move on. Accept a door is closed. Acknowledge that deep down you knew this would happen…one day. Do not get depressed about it. I’m been pleasantly surprised to discover that I’ve pretty much got a good store of positivity mounted up.

However, reasonably early on in our post-Sutent celebration we were kicked into the dust at one point by a new development of the disease which I found particularly traumatic to deal with. I developed vaginal metastases, which at first caused several bleeding haemorraghes. My new GP, at the same practice as before, reckoned that I should not seek treatment, as that experience could be more traumatic than simply learning to live with this new blight to my body.

Just as the oncologist had insisted during the June appointment my new very lovely GP advised me to spend my remaining time doing what I wanted to do most. Disheartened, and more than a little shocked and traumatised for a week I dived headlong into a state of fervent denial and organised a whirlwind of social activities, including a two night stay in the beautiful Glasgow West End flat of our friends Alison & Iain, who had generously offered its use while they and their children toured America. We spent the next few days catching up with Glaswegian and West-based mates, seeing Peter, Stuart, Abigail, Colin, Susan and Allan. I finally caught up with an old friend from Glasgow University I’d been trying to meet up with for some time and I found it very moving, and a great privilege to meet up with her again, and indeed meet her husband and beautiful baby girl.

We had a great week, and at the end of it my folks and my brother joined us for a meal and an overnight stay with us in Porty. As I feel weaker I find myself wanting to prioritise seeing family and they have all made an exceptional effort to totally accommodate us, visiting me at home, bringing lunch with them, and in the hospice at very short notice. I’ve spent some very important and moving time with them all.

The following morning I was bleeding heavily again. By the next day Robin insisted we go to the hospital so we called and got slotted into my old oncology clinic. The registrar recommended emergency radiation to try to kill the tumour and to stem the, what was now being described as ‘life threatening bleeding’, and I received that two mornings later.  I was also immediately prescribed Transaferic Acid Tablets which stem the bleeding, I’ve been taking them more or less constantly since then, and they are very effective.

Aware and wary of radiation symptoms I kept a sharp but thankfully unrewarded eye out for damaging side effects.  I needn’t have worried, I was fine. No gory  lesions or sunburnt skin, I wasn’t vomitting. We were told it would take about six weeks for any side effect to emerge. After about a month I was feeling cocky.

Then, out of the blue, a burning cold toothache enveloped my lower right leg. The pain was intense. It began to dominate, despite my massive pharmaceutical intervention. I was making great use of my high daily breakthrough pain relief of liquid morphine but it wasn’t dampening this pain at all. I started to think of it as a tsunammi of pain. It overwhelmed me, smothered me in its grasp, blocked my ears. After a few particularly gruesome days of demented suffering I called Lorraine, the community palliative nurse at St Columba’s Hospice and asked for help.

The Hospice Stay

My first stay in hospice did not go well. I was admitted to a busy ward, the female ward adjoining a male ward on the bustling ground floor of the hospice. I’d expected peace and tranquillity but instead encountered a quite frantic vibe. This was heightened by the fact that, as they simply wanted to observe my pain levels on the first night, my nerves were also somewhat fractured by pain. I ended up getting a bit overwhelmed and emotional in the middle of the night and by the morning, after a totally sleepless night I was literally begging to get back home. The entire staff could not have been more lovely and desperate to get me calmer and happier, I was awash in assurances that they wanted what was best for me and it was agreed that if I did return to St Columba’s it would be to a single room.

I felt overjoyed to be home but over the next few days it became obvious that though my pain meds had been significantly changed it wasn’t enough to get me through the night. It started to become harder and harder to simply make my way across our flat, even with my new walking stick. It also became harder to simply lie down in bed; I couldn’t find any comfortable position. Despite my intransigence just a few days before I quickly ended up back in the hospice as a day patient, calmly, and indeed enthusiastically, agreeing to return the following day and be admitted as an in-patient while they introduced a new weapon in my pain artillery – kethamine.

This time the stay went completely differently. Most importantly I had my own large, airy room on the first floor, overlooking the pleasant garden and the countryside beyond. This was critical, allowing me to emotionally block off what was going on with other patients. I just wanted to focus on what we were trying to achieve, get on top of the pain.

I adapted into the hospice routine of pills, shower, meals and visits (thanks to everyone who came and for all the incredible bouquets, they really brightened the room up). I actually spent an enjoyable afternoon shopping during a great visit with my folks and in-laws, courtesy of the small gift display in the Iona Room on the ground floor. Joan, my mother-in-law, purchased a beautiful silver dove, the logo of the hospice, while I slated my ever present thirst to spend money on silver and turquoise earrings (for yours truly) and an enamel stone ‘Circle of Life’ pendant for my sister Jackey’s 40-something birthday the following day. Mum and I continued the shopping spree with the purchase of some quirky gift bags made from pages of Indian newspapers while Dad couldn’t resist a Meerkat gift card; like half the country he and my younger sister, Louise, are locked into a labyrinthine, mirthful joke about the ongoing antics of Sergei and Alexandre.

Mind you, at one point I was shocked to discover I had been there for almost a week and at that point again lobbied to get back to normality. Again it was wonderful to get back home. Robin and Joan have loaned us the amazing gift of a reclining leather chair with footstool. This is my new throne. It swivels all the way round allowing me to spin from uplifting sea view round to excellent telly view, with ease. To be honest I haven’t been watching much TV or movies as my concentration is decimated. Mainly I’m sitting around in a heightened ‘day dreamy’ state. It has taken over two weeks just to try to assemble some of my meanderings for this blog. I’ve tried to strip out typos but am cringingly aware that the writing is erratic.

Lorraine, my community palliative care nurse from the hospice, has been amazing. She has visited and calls often. She has also made appointments for counselling, physio (I now use two walking sticks instead of one) and another meds review, as a day patient, with Dr Duncan Brown. We discussed my recent experiences and he suggested I slightly increase my kethamine but also slightly decrease the amount of slow release morphine, to try to rid me of the spaced out sensation.

He reckons the next option will be for me to return as an inpatient (fingers crossed, with a single room) to manage a change to a combination of methadone with kethamine: does this mean my late stage cancer is turning me into a junkie? Almost but not quite. The new dose of steroids in my pharmaceutical mix has ensured I continue to eat. I’m not wasting away yet.

There have been a few other things going on, e.g., the assimilation into our apartment of a hydraulic hospital bed (yippee!) but I’m going to draw this over-lengthy post to an end now and try to update more frequently now. While I still can.

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Team McCord – Strolling for Maggie’s

6. Team McCord1.The Start2. Off we go3. Lagging behind4.Just over the line Sharon and Robin5. Great support
7. Beloved Supporter

Team McCord – Strolling for Maggie’s , a set on Flickr. Click on an image above to view a slideshow of some pics from the day.

Our fundraising walk during the Challenge Scotland event at Holyrood Park, Edinburgh on Sunday 24th June 2012.

Neil, Josh and Lily showed up to cheer us on and ended up joining Team McCord for our ‘epic’ stroll! Hence Lily’s special medal.

When we set off we were all so busy chatting that we ended up lagging behind all the other Golden Milers, including those on crutches and pushing wheelchairs. Ooops!

Robin and I completed our ‘Golden Mile’ and Jackey strolled on for another few miles and ended up coming back at the head of the Three Milers.

The sharp eyed amongst you will spot the different coloured medals – that’s because we were originally given ‘Toddle for Scotland’ medals. That seemed right to us but apparently those medals were intended for the infants walk later that day so we had to hand them back in exchange for Walk for Scotland medals.

Soni and our friend Justin joined us at the Finish line at the end of a perfect morning. We know that many of you were there in spirt with us, especially sister Louise who was a big part of the fund-raising team.

Thanks hugely to everyone who has supported our VERY humble effort! We really have been so overwhelmed with the incredibly generous and big-hearted response and I have been so moved by the messages of support.

The donation page will remain open for the next month so if you want to support a very deserving charity, Maggie’s Cancer Caring Centres, please visit Team McCord’s fundraising page at www.justgiving.com/Sharon-McCord.

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Wow!

Dear friends

Two thirds of Team McCord

Team McCord is completely flabbergasted at the incredible response to our request for sponsorship for the Maggie’s Cancer Caring Centres. We can’t believe our humble effort has generated this staggering flood of donations – but we are delighted, as it is for a very deserving charity.

Your outpouring of support and love has really filled our hearts to bursting. Personally I haven’t cried often over the past few years but I have been moved to tears on many occasions over the past twenty four hours in reaction to your exceptional generosity. I will try to reply to everyone individually after the event so please bear with me. To those who have donated anonymously please accept our heartfelt thanks. Know that in the meantime I have read and reread every message and have taken such strength from your support.

Donations have flooded in from good friends and family, from Jackey’s mates and colleagues at West Lothian Council, from the offices of Standard Life (thanks to the fundraising efforts of my younger sister Louise who cannot participate in the Challenge Scotland walk due to back problems), from my beloved colleagues and from the amazing members of the Royal Incorporation of Architects in Scotland (RIAS), who have answered an appeal by my ever supportive boss Neil Baxter in a typical, generous fashion. I have discovered over the past few years that architects are professionals with a finely honed humanity.

Someone must have tipped off my folks who are on holiday as a donation arrived from them and my Aunt Kathy and Uncle Tom from Gran Canaria. In fact we’ve had donations from across the globe, including generous amounts from supporters in Canada and Australia. This has blown us away but I’ve been particularly astonished by the response from the big-hearted people of Fauldhouse, my hometown – you have dazzled me guys!

As Neil highlighted to RIAS members the  motivation for this walk was partly inspired by the death earlier this week of the indomitable Jonathan Speirs FRIAS. Jonathan never let the shadow of death dampen his enthusiasm for life and my hope is to live the rest of my days in a similar fashion.

I have talked about hobbling around my mile but I am so bouyed up with energy from all your positive vibes (and prayers) that I suspect I may be skipping around Neil and Josh’s back garden (ie. Holryood Park) on Sunday.

We shattered our target of raising £200 within the first few hours of fundraising yesterday. At the moment over £1400 has been raised. We haven’t adjusted our target as we want it to remain clear that we only ever intended our badly-organised, relatively spontaneous challenge to be a modest undertaking – as the money floods in Robin keeps panicking and asking “Are you quite sure you made it clear you are only walking ONE mile?” Incidentally Robin’s participation is particularly amazing as it involves him missing coverage of the Valencia Formula One Grand Prix. Anyone who knows him will understand just what a sacrifice that is for him!

Our effort may be minor but your charity is major. You can keep up to date with the fundraising total via our page on the JustGiving website, using the button below. The fundraising page will be open for the next month and we will be very grateful for donations received at any time. I will continue to provide updates via this blog, including some photos from tomorrow’s event.

Thanks from the heart to everyone who has supported us!

Sharon McCord Hon FRIAS

JustGiving - Sponsor me now!

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Goodbye Sutent, Hello me!

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.

Why?

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.”

Robin McKechnie

My champion!

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.

Jonathan Speirs FRIAS

Jonathan Speirs FRIAS, pictured with his RIAS Lifetime Achievement Award, photographed by Malcolm Cochrane

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.

Sharon McCord

Me celebrating life on the putting green at North Berwick

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.

Jackey and Louise at the National Museum of Scotland

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!

JustGiving - Sponsor me now!

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Lifeline

Cat Face... it all becomes clear twelve paragraphs below. Yep, be warned, this is a LONG post.

I’m a rebel at heart. Rules are made to be broken… even, nay, especially, my own strictures, such as the one about updating this blog at least once a month. I’ve been taking some stick about my online absence. I’m not sure why I haven’t posted much this year. It could be down to the strange cycle which the six-week Sutent schedule imposes; your energy seeps away during the four weeks of popping pills, culminating in a veritable bedfest, and you then have a few frenetic Sutent-free weeks, rushing around seeing friends and family, trying to make up for the lost time and being oh, way too busy to pause to blog. Then again it may be that I’ve immersed myself so fully in distractive activities that I’ve found it impossible to pull my nose out of my kindle or switch the blu-ray player/iphone off (Robin could feasibly sue for divorce naming the Tetris app as co-respondent). It might be that after over a year and a half of ruminating on my desperate fight for survival and my, oh so sad, plight of imminent demise I feel slightly embarrassed to erm, still be here, ruminating on my desperate fight for survival.

I’m that new kind of patient; the terminally ill individual whose illness starts to seem more like a chronic condition than a fatal disease. All thanks to the new life extending drugs. Sure, the oncologists would politely clear their throats at this point, take me aside and remind me not to get carried away, that Stage IV kidney cancer IS terminal, that while medical advances are being made they won’t benefit me (reliant as I am on the cash-strapped NHS Scotland) and, that, unfortunately, the ‘miracle’ cure has yet to be discovered. I know that but I’ve also learnt that it is impossible to live your life at a dramatic pitch. Yes, our lives have been transformed in undreamt of, unwanted ways.  Yes, I am now reliant on my husband to an independence-belittling degree but these days we’re pretty placid. We’ve traversed through the churning waves of denial/anger/grief/ bargaining/ ‘splurge all your savings on fancy restaurants and Clinique cosmetics’ and popped out in calmer waters.

Of course that current inner tranquility has been aided and abetted by our own minor medical miracle – and as I always argue that this blog is not just a navel-gazing, gossip column of ‘Where Sharon Went For Lunch This Month’ but hopefully also a helpful guide to other renal cell carcinoma patients of what to expect, particularly papillary rcc patients who have less options and are badly served by Big Pharma- I do feel slightly guilty about not updating on my experience with Sutent. Otherwise known as ‘my precious.’

Lifeline - my daily dose (50mg) of Sutent

As the title of this post implies Sutent has given me not the desperately hoped for stability but has actually turned the clock back on the cancer within me, with an overwhelming result of SHRINKAGE! Sure, it’s not the Holy Grail we cancerites lust after of a NED (No Evidence of Disease) diagnosis but it is definitely the next best thing and more than I dared hope for from this drug which, while being the gold standard for clear cell kidney cancer dudes, rarely delivers shrinkage for papillary patients.

After two cycles of Sutent on the full 50mg dosage (yay, I am HARD CORE!!!) a CT scan at the beginning of February revealed I had considerable reduction of disease. It was amazing to finally see a radiographer’s report. For the first time in my Stage IV experience I had a clear(ish) statement of my status. The past year has been one of confusion and contradictory opinion from the medical profession as to the proliferation of metastasis in my body.

This report listed black and white comparisons between the CT scan on 29th November (taken seven days after starting Sutent following two-months of limbo after Afinitor) and a CT scan from 7th February 2012.  True, I was rather aghast to discover the damned cancer had more of a grip on my organs than I had known about and it was troubling to find out just how rapidly it had advanced during the drug-free period I had been forced into while the NHS Scotland bureaucrats argued over my right to treatment (see earlier post).

We were horrified to discover that my biggest tumour, the one inextricably entangled in the ileopsoas muscle, the source of my debilitating pain, necessitating the daily ingestion of a rainbow of opiates, had reached the frankly terrifying diameter of almost 7cm at the end of November. Robin and I also paled when confronted with the evidence that the cancer HAD reached my lungs but we were very much heartened by the news that Sutent has been reducing much of the disease to rubble.

I won’t reproduce the report here. I may have described it as ‘clearish’ but that is just relative to the usual impenetrable medical lingo. I recently came across an American blog by fellow rcc patient, Chris Battle. His sly satire makes mincemeat of rcc and unlike my meanderings he is also genuinely informative. He dissects the jargon of radiography reports with surgical precision in his post ‘Of Diseased Livers and Uteri; How To Read a Radiology Report‘.

I’ve translated mine into the following bullet points, giving all measurements mentioned;

  • tumour in the ileopsoas muscle has decreased from 6.7 x 6.8cm to 6.1 x 5.8cm,
  • tumour at the site of the nephrectomy has decreased from a diameter of 1.6cm to 0.9cm,
  • peritoneal tumour in the vicinity of the distal descending colon has decreased from 4.2cm on the axial plane to 2.2cm,
  • peritoneal tumour  has decreased from 2.7cm to 2.0cm,
  • peritoneal tumour in the vicinity of the hepatic flexure of the colon has decreased from 2.5cm to 1.6cm,
  • tumour in the lower lobe of the right lung has ‘almost completely resolved’,
  • tumour in the middle lobe of the right lung ‘is significantly smaller’,
  • tumour in the lower lobe of the left lung is stable compared to previous scan,
  • the right paratracheal lymphadenopathy is stable compared to previous scan,
  • the right hilar lymphadenopathy is stable compared to the previous scan.

Amazing eh? I have so longed to hear ‘shrinkage’ over the past year. So, I apologise for not blogging about the good stuff. I was too busy celebrating. At the end of February we had an incredible lunch at Room in the Town restaurant (a nod to those of you who read this purely for the culinary tips; expect great food, service and value and best of all it is BYOB). It was a triple celebration, toasting the shrinkage, my birthday (45th, hurrah!) and our first wedding anniversary. We were just shocked and awed by the efforts our family and friends made to share the day with us and we had a hilarious time. We were also showered with gifts and largesse and are humbly grateful to everyone (an impressive twenty two) who made the effort. Love you all.

A week later we headed west to celebrate the return of our darling friend and bridesmaid Karin from Doha. She threw a fabulous dinner party in Glasgow and we had an incredible evening with her and other close mates. It was so good to greet Karin with some good news for a change! It was a whistle-stop visit for her and by the time she had flown back a few days later my socialising spate was over as fatigue really did floor me for the last ten days of my third cycle of Sutent.

Side effects of Sutent
I have, touch wood, been very lucky not to experience the side effects I dreaded on Sutent. I haven’t been sick. As I take so much morphine I haven’t been troubled by the typical bouts of diarrhoea. My hands and feet have been mercifully free of the sore, red blisters (Hand Foot Syndrome) so many experience and while some of my eyelashes and eyebrows have turned white my hair hasn’t. (The ugly silver roots I am sporting at the moment are just evidence of my normal grey coming through as I’ve been nervous of dying my hair while on the drug). My tastebuds haven’t been destroyed although they do become ludicrously sensitive in the final few weeks of the drug, returning to normal a few days into the drug break.

Moon Face and lovely friend Paul at the celebration lunch

Moon Face and friend Paul at the celebration lunch

My gums bleed incessantly so I chew fruity gum to dispel the constant stale, iron taste in my mouth. My eyelids swell monstrously and my face becomes moon-like in the final fortnights. When I walk the sensation is that my huge head is bobbing along, attached to the rest of my body by a piece of frayed string (think Cat Face, Weebl’s incomparable online animation).

Vanity would normally prevent me from publishing this unflattering photograph (of me! Paul looks delovely as usual) but I’m trying to honestly document this experience, fat face, grey roots and all. I’ve had some pretty chilling experiences of reflux. It’s a relatively harmless side effect but the incidences have freaked me as they have spooked me awake during the night.

My main side effects have been hypertension and a low thyroid count. Sutent can play havoc with blood pressure so I indulged in a pricey automatic BP kit and periodically play nursey on myself. It’s been highish (150/100) but not disastrous.  I’ve also had a very low white blood cell count, dropping to 1.4 by the end of the third cycle (if you have less than 1.5 you cannot go ahead with chemotherapy). This has contributed to intense fatigue. Actually fatigue is too insipid and half-hearted a word to describe the leaden exhaustion which increases as each day of the 28 day pill cycle passes. Last month there were days when I slept from midnight until 5.3opm the following evening, surfacing from my coma state only for toilet and pill breaks.

When I did get up I was positively lizard like. Inert. My heartbeat measured 56 bpm which would be fantastic for an Olympian athlete but not so much in my case. I had to draw on every reserve of strength to limp into the shower. I focused on the reprieve of the two-week break although a few days into that I was stricken with labyrinthitis which made the world spin around and put paid to any partying, although I was immensely cheered by a visit from my Aunt Marion and cousin Alex during the recent surprisingly sunny spell. Incidentally, for those of you aware of rcc’s appetite for cerebral treats we are confident this lack of balance is not connected to brain mets as I have no other neurological symptoms.

I’m not complaining about the downsides of the drug. Far from it. Strikes me that a a few days of hibernation is a very small price to pay for the results I got and hope to continue to achieve. Such side effects are mere bagatelles compared to the distress most chemo and radiation patients endure. When I described the tiredness to my oncologist Dr McLaren at the Western General on my most recent visit he did voice ‘quality of life’ concerns and discussed reducing the Sutent to the more usual 37.5mg dose but he understood and endorsed my determination to continue on the 50mg dosage. I take three pills, one 25mg and two 12.5mg at the end of day and have been cautioned to reduce dose if the side effects are too overwhelming.

Sutent works best at the beginning. Over time its effects diminish. I had hoped to complete at least one cycle at 50mg. Following the euphoria of the scan my concept of ‘beginning’ shifted. The promise of that last scan offers such a tantalising lifeline.

Speaking of lifelines the eagle-eyed amongst you may have spotted in the pic above that my ‘lifeline’ has a distinct gap and then restarts on a parallel line. In palmistry this is indicative of gloom and doom but Robin recently tenderly traced the line and postulated that, in my case, the gap might mean a fresh start after an illness. Of course we don’t place credence in chiromancy or other desperate hope systems but for now we are firmly putting our faith in Sutent. Our hope is that the big guns of a 50mg dose will obliterate my cancer into dust.

PS: This is a week of anniversaries so salutations and birthday hugs to my dear father-in-law (yesterday), my fab dad (tomorrow) and my gorgeous pal Helen (Saturday).

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Requiem

Gran at our wedding in February (c) Wattie Cheung

2012, the allegedly apocalyptic year, did get off to a grim start for us. While my family continued to mourn my Uncle Dougie, my Aunt Marion and my cousin Alex having to face the harsh daily grind of grief, Robin’s family were confronted with a death with reverberations throughout generations when his much loved grandmother, Joan’s mum Marjorie, died suddenly after a brief hospitilisation.

Marjorie Williams, always known as Madge, may have been 89 but her death was unexpected and a very great blow to her family. Robin’s cousins Yvonne and Alison were particularly close to her, as were Yvonne’s children Scott and Katie. Madge, who had attended our wedding and Andy and Katy’s last year, had been very active right until the last few months of her life and had a huge circle of friends. Her funeral at Paisley Crematorium was busy, a fitting testament to her popularity and a proper celebration of a life richly lived; one replete with family, friends and neighbours. It was a sad day and, thanks to some terrible but unavoidable timing, a painful birthday for Robin’s mother Joan.

I was too tired after that trip to be able to make it through to Glasgow the following evening. We had intended to attend a memorial tribute for the distinguished Scottish architect Isi Metzstein at Glasgow University. Isi had also died earlier in January (The Scotsman obituary of Isi Metsztein by his son Saul), Isi was immensely respected throughout the international architectural community and also hugely liked, especially amongst Scottish architects, many of whom he had taught with his design partner Professor Andy MacMillan. Through my work with the RIAS Robin and I had been fortunate to meet Isi and Andy and their respective spouses Dany and Angela several times over recent years and we were disappointed we didn’t make it through to ‘Toast to Isi’ to pay our respects.

This past month seemed to be filled with news of tragic deaths, too many to properly note here. During a visit Neil noted that a doctor friend had told him this surge of deaths in early January was an established medical phenomenon, one anecdotally believed to be due to people “holding off” dying until after the festive season. Whatever the reason these first days of 2012 have been a period of sombre reflection, a sorrow which was compounded towards the end of the month when I heard of the death of Mary McDermott, the mother of childhood friends, an excellent teacher, an inspirational activist and a woman who made a big impact on my life. Before she and her sister Ellen emigrated to Canada they taught me that you are never too young to be introduced to political awareness. Strong woman, who forged careers alongside motherhood, their example means I have never shirked from calling myself a feminist (as so many young women now inexplicably do). Mary was only 64 when she died and her family are heartbroken.

Despite such striking reminders that “in the midst of life we are in death” I haven’t felt overwhelmed by a sense of mortality or impending doom, although as an atheist I am mindful of the challenge of a non-religious requiem (and yes I am aware that the pedantic may consider that phrase to be an oxymoron). Robin and I are not ones to dodge harsh reality but we have always procrastinated that particular conversation. In fact its not so much the elephant in the room as the elephant in the room next door because right now we are very fixed on living and looking forward.

As usual I am writing this blog at the end of the month. I’ve just taken the last Sutent pills of this second cycle, again at the maximum 50mg dosage. The side effects have been bearable although over this last week the fatigue has been quite extreme. The balance however is still very firmly tipped towards good, nay great, quality of life.  I may have days when I am drained, when I wince at the bathroom sink filling with blood every time I gingerly brush my teeth with a soft toothbrush and baby toothpaste, when digestive mayhem has me practically tethered to the toilet or random light fevers have me shivering under a gigantic duvet for fourteen hours but I have never doubted that what constitutes that good quality is having someone I love so much in my life, always at my side.

So what if I am inert quite a lot of the time… I may not have the energy to do much but it is not only easy it is downright wonderful to while away so many hours with my adorable husband, chatting, laughing, watching movies, debating politics and just being together. We don’t need a Bucket List. Every hour I spend with him is better than any fancy restaurant, summit view or spectacular sunset.

My gorgeous husband. The reason I get up in the morning... or rather the afternoon.

It’s Robin’s birthday tomorrow (or rather, considering the late hour, today.) I am a rubbish wife. Even with all this time on my hands I haven’t thought of an ideal gift to get him. He won’t care. He will tell me that his perfect present is spending time with me. He makes me feel valued in a way which enriches my life so much it makes cancer seem feeble. I love him with a strength which cancer cannot touch. So, even though so many people feel sorry for us just now, and even though in matters of spirituality I am one great big black hole, I nonetheless think we are truly blessed.

Mary McDermott’s daughter Kirsty told me the other day that her mum would say “live, laugh, paint, dance and sing, every day” which I think is a pretty unbeatable philosophy and one which I reckon, thank you Mary, will see me through to the end of my days. I predict many more to come. Thankfully Robin doesn’t mind if I sing off-key.

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Absent Friend

Life has been rather hectic since I last posted. Like most of you we have been busy shopping, socialising and visiting or hosting guests over the festive season and I wouldn’t know how to begin thanking all the family and friends who have helped us have such memorable times. A huge thanks from Robin and I to you all.

Medically I got off to a great start on Sutent. After the initial funding fiasco (see previous post ‘Extra Time‘) my oncologist at the Western General in Edinburgh was happy to prescribe the drug, while noting some concern over low haemoglobin levels. This will be monitored and if it drops too much I may require blood transfusions. It’s the reason I look increasingly pasty and have bouts of fatugue. Otherwise my blood counts and general well being were decent so he started me off on the full dosage for Sutent – 50mg daily for four weeks, followed by a two week drug-free break.

Few patients tolerate this optimum dose so I was relieved to make it through the cycle with tolerable side effects, although I discovered at the end of the four weeks that my blood pressure had shot through the roof. Over the two week break period it deflated. When we saw the oncologist again just before Christmas he was heartened by my hypertension and low thyroid count as recent research has indicated that these can be biomarkers of Sutent’s efficacy (published info on hypertension and Sutent). He was optimistic that the drug IS having an impact on me and recommended I return in a week for another full blood count. If levels had normalised he was happy for me to continue on the full 50mg dose, hopefully for at least another cycle – research also indicates that patients who can tolerate at least two cycles on the 50mg dose are linked with the best results. When I returned to the hospital this morning all was deemed acceptable and I picked up enough tablets for another four weeks on the 50mg dose, to be recommenced on Tuesday.

Hopefully I can get some shrinkage and not just stability from Sutent. The results of the scan I had at the end of November indicated that there had been considerable growth while I was off treatment. The largest abdominal tumour, which gives me a lot of pain and trouble, is now over 6.5cm and the Edinburgh radiologist report indicated that there are cancerous tumours in my lungs and a cancerous lymph node in my chest. Fingers crossed the Sutent can not only halt but reverse this creeping decline.

Dougie and his daughter Alex dancing at our wedding earlier this year

I should give more detail but feel disinclined to list the minutiae of my disease at the moment. The last few paragraphs seem like an absurd self-indulgence. The big things in life, the truly important stuff, were brought into very sharp focus for my family on 13th December. Since then we have been numbed with the shock of the loss of my uncle Dougie, a relatively young man at only 55 years of age, whose death from a heart attack was brutal in its suddenness.

Douglas Peden was a decent and, as properly lauded at his moving funeral, steadfast man, one whom many turned to in time of crisis for sage counsel. He was also known for a great sense of fun and humour and enlivened many a family gathering with his wit and good cheer. Respected and liked by his many colleagues and dearly loved by his family and friends his death has left a gap in many peoples’ lives.

He leaves a yawning chasm in the lives of those precious to him. Sudden death, with no opportunity to prepare for the loss, creates particular problems. My lovely aunt Marion has been instantly abandoned of her very best friend and cherished life companion. His daughter Alex is now bereft of the love and and wisdom of a caring and devoted father. They have borne their shock and loss with a terrible dignity but they are suffering a challenging onslaught. Hopefully the memories of Dougie – his legacy of strength and compassion, effectively his living memorial in those influenced by him – will help them to withstand this dreadful grief.

Dougie, as noted by one of his good friends at the crowded funeral, would always toast ‘absent friends’. A number of our relatives are going to gather at New Year to raise a glass to Dougie. We will try to celebrate his memory and there will be some lightness and laughter, as he would have wished, but amidst the smiles there will be a great sadness in all our hearts; every family occasion from now will be one blighted by absence.

I’ve experienced the melancholy of a few losses of cancer compadres this year but those were dull pains compared to the sharp sorrow of losing a dear uncle. So today this blog pays tribute to Dougie, our much loved absent friend.

Douglas Peden 17/04/1956 – 13/12/2011.

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Extra time – a benefit or a burden?

My new life preserver

Just over a year ago I was frantically doing everything I could to avoid taking Sunitinib (trade name Sutent), the gold standard treatment for kidney cancer, a ‘life extending’ multikinase inhibitor which has had such an impact on halting the advance of kidney cancer for so many patients that it has been hailed as a ‘wonder’ pill (Sutent is taken daily in tablet form).  So, why would I turn my back on such a miraculous drug?

At the time of my Stage IV prognosis last summer my initial research suggested that Sutent might not be effective on my form of kidney cancer, papillary rcc, which only an estimated 10-15% of rcc patients have. The oncologists at the Western General in Edinburgh agreed it was not the optimum treatment for a papillary rcc patient and I fought hard and successfully to get on the RAPTOR clinical trial for Everolimus (Afinitor) at The Christie hospital in Manchester.

Everolimus is licensed in the UK only as a second line treatment for rcc and is not routinely funded by the NHS. The RAPTOR trial was investigating Everolimus’ possible effectiveness as a first line treatment for papillary rcc patients and, fortunately, my ‘fresh meat’ status, fitted the bill. There were numerous other conditions but I managed to tick all the boxes. Only 12 patients were being recruited throughout the UK. Anyone who has followed my cancer story knows the massive relief I felt to get on the RAPTOR trial. Participation in it offered me an opportunity to access a drug which might be most appropriate for me AND left the possibility of NHS- funded Stutent for the future. It was reassuring to know that there was something powerful waiting on the shelf.

As my hopes for Everolimus dwindled in the face of the ongoing, if thankfully slow, growth of my tumours my attitude to Sutent radically changed. Over the course of the year a new study emerged which demonstrated that Sutent CAN deliver some results, at least some progression-free months, for papillary patients – view info.  Does this all smack of a drowning woman clutching at straws? Sure, just pass me the lifebelt.

As my options diminished, as each two-monthly scan revealed that Everolimus was not halting cancer spread, as the possibility of a curative operation was snatched away at the last minute, as I learnt that various new experimental drugs supposedly achieving results in American were not progressing beyond initial clinical trial phases due to unacceptable levels of toxicity (side effects sometimes resulting in death) it is certainly true that Sutent, even with its attendant horrible side effects, looked so much more beguiling.

It became even more alluring when it looked like I wasn’t going to get the drug. During my initial appointment with an oncologist back in Edinburgh on November 1st Robin and I were horrified to learn that despite Professor Hawkins discharging me from The Christie with a letter of recommendation that I be prescribed Sutent NHS Lothian was refusing to fund the drug for me. Dr McLaren was putting forward an Individual Patient Funding Request to a fortnightly committee -and warned me that every request for cancer treatment was turned down.

I was aware that kidney cancer patients in Scotland can only expect one run of treatment from the NHS but at that point I hadn’t had any treatment since my original nephrectomy funded by the NHS. I was staggered that my participation in a clinical trial was being regarded as first line treatment. Everolimus has no approval as a first line treatment. Fortunately several clinicians agreed with my view that I had instead received experimental treatment. An important principle of volunteering in a clinical trial is that it should not prejudice your access to the standard treatment for your disease.

We had a very worrying few weeks but the clinicians on the committee won the day and Dr McLaren’s request for funding was approved. While the Cancer Drugs Fund in England and Wales is financing second and sometimes even third line treatment for people with kidney cancer, patients in Scotland cannot get funding for second line treatment – I’m concerned that patients in that particular predicament may take heart from my funding approval and have to emphasise that the only reason I am getting it is because I have not had prior treatment on the NHS.

It’s a horrific situation. Robin and I jumped through hoops and went to strenuous efforts to travel back and forward to Manchester for ten months to enable my participation in the trial, as a way of getting two bites at the cherry. There are a few life extending drugs now available in the UK but, as yet, there is no way to predict which drug will benefit an individual patient. If your oncologist prescribes Sutent and it doesn’t work for you you can then try Everolimus (trade name Afinitor), Temsirolimus (trade name Torisel  and, like Afinitor, an mTOR inhibitor) or perhaps even Pazopanib (trade name Votrient, works in a similar way to Sutent) IF you have private health insurance, IF you can afford to pay for it or IF you live in a health authority area in England or Wales which will pay for it from the Cancer Drugs Fund (it is not automatic down South, a postcode lottery is still in operation).

All of the above drugs may offer precious cancer progression free time but if you live in Scotland and are dependent on the NHS you cannot have them. I rely on the NHS.  I spent my life blithely assuming, like most of us, that our national health service, despite its faults, would be there for me in time of need. Now, in time of peril, I have discovered that it just isn’t necessarily so.  If Sutent doesn’t work for me there is nothing else on the shelf. Patients who aren’t fortunate enough to access a clinical trial face a dead end when their first prescribed treatment fails. You are ineligible for the majority of clinical trials if you have already had treatment.

Through a window of opportunity I accessed Everolimus and now have Sutent – but only after two quite stressful months. It felt like a dangerous amount of time to spend off-treatment. Any qualms I had about side effects have been swept away. I am just so grateful for this drug, my precious! I am on the full strength dosage for now – 50mg, taken daily for the standard 6 week cycle (four weeks on, two weeks off). I’ve been taking it for a week now and to date, have not experienced any debilitating side effects.

As a society we need to have some difficult conversations about end of life care and treatments. Of course I find it difficult to write objectively about that. Cancer research has made incredible advances but those advances have brought about challenging issues – the elusive cure has not been found but the amazing new drugs of the past few years can give patients valuable extra time. However, instead of being celebrated as the incredible benefit it is this extra time is often perceived as a burden to our health care and is frequently presented as such by the media and politicians.

I’m going to write soon about the current iniquities in the UK’s health service provision and try to unpick some of the myths around cancer treatment for the terminally ill. It chills you to your spine when a price is put on your life.  At the moment mine costs approximately £100 per day. As a taxpayer are you happy to pay for that?

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