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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One Response to While I still can…

  1. Charlene says:

    I love you with all of my heart, you have been an inspirational part of my life. I will miss you forever. Please reast in peace. Xxxx

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