The most profound things in my life that have happened since my last post haven’t happened to me but to others around me. The best was the wonderful news that my mother’s scan showed she is clear of the breast cancer which she and my father have dealt with so courageously over the past year, the ‘all-clear’ immediately extinguishing our family’s worst fears and allowing us to have a fantastic get together last Saturday when we celebrated her 70th birthday.
Another fabulous thing was attending the wedding of Robin’s brother Andy to our lovely new sister-in-law Katy on Easter Monday. That was an incredible day; sunny, full of joy, enhanced hugely by meeting Katy’s funny, warm and friendly relatives and friends from Portsmouth, and all the sweeter as the original dates of the ‘on-off’ rib resection could have meant I would have been in hospital and unable to attend. We were just overjoyed that we there to share the day with the McKechnie and Mitchell families. Andy and Katy are due to emigrate to Dubai shortly and we’ll miss them lots.
The worst thing that has happened was our dear friend Charlene being rushed into hospital last week for an emergency operation at 2am to remove two discs from her spine. This after months and months of excruciating pain. Charlene is a young mother, devoted to six year old Josh and 10 month old Marlie, and I cannot even begin to imagine how terrifying this experience was for her partner Simon and their close knit family. Charlene is out of the hospital now, facing a difficult recovery at home. I am looking forward to visiting her tomorrow but am wholly frustrated that I am unable to offer much in the way of practical help.
I haven’t been very busy of late. After that early April flurry of socialising I ran out of steam somewhat. Since then, despite a determination to stay reasonably active and gregarious, my life balance has been very much tipped in the direction of rest and recovery. The fatigue has been very pronounced. Most evenings I sleep for 12-13 hour stretches, waking at noon. Every afternoon lunch with friends or family dinner seems to be followed by two days of almost total inactivity. A bravado cycle along the prom meant two days in bed.
I am tolerating the increased morphine well in terms of not being sick but am definitely feeling the impact in terms of mental focus and clarity; I can find it difficult to, well, to think, to have coherent thought processes. My memory, previously very sharp, is a little fuzzy around the edges and I am particularly frustrated by the odd inability to pin down the right word – all of which has made me reluctant to blog. I’m leery of seeing the evidence of my disjointed thinking. I don’t mean to overstate that – it’s not so bad. I’m certainly not living in a mental fog and I am still taking huge pleasure from immersing myself in good books – lately I’ve juggled an audio version of Jonathan Franzen’s Freedom with a Kindle version of The Corrections.
My toenail fell off when we had Karin, Mike, Soni and Syd around for some lunchtime snacks and drinks before the latter’s departure to a new life in London. I am sure I revolted my guests with my gleeful relish of my new gory toe – I was so glad to see the infected nail go. The infection subsequently cleared up and although the tips of my fingers have been a little numb and the nails on my hands have become soft and rip easily I’ve had no new side effects.
Mind you, there is a reason for that – I’ve been off the everolimus (Afinitor) for over a week now. While the last trip to Manchester, mid April, was reasonably cheering – Professor Hawkins reckoned the scan showed stability from the previous one and the questionable lymph nodes were no longer enlarged – there was a problem. Administrative rather than medical. The drug company hadn’t delivered the everolimus to the pharmacy for my new prescription. I still had 14 days left of the previous batch and was assured that a new lot would be couriered to me before I ran out. It wasn’t. Apparently the drug company never delivered the drug to The Christie. I ran out of tablets last Tuesday. We’ve waited in for the past three days for a delivery – which finally just arrived this afternoon. It was all pretty frustrating and I’ve no idea what kind of impact this break from the drug might have on my next scan.
However I’ve felt far from negative as a few days ago I got a letter from the Professor telling me the surgical team are now back on board – and have agreed an operation IS feasible. I’ll be discussing the pros and cons with the surgeon on the afternoon of my next visit to see Professor Hawkins – Wednesday 18th May. There was some other cheering news – before our last trip to Manchester I discovered that the Scottish Medical Council (SMC) has approved parzopanib (brand name Votrient) for use for rcc. This means that if the op doesn’t happen/doesn’t work and if I ever have to come off the trial there will be an alternative to Sutent.
I’m not massively up to speed on how effective Votrient is for papillary rcc. I’ve become less pro-active about medical research than I envisioned. I do think it is important to be informed. I get really despondent when I am not totally in the loop about what is happening to my body and have hated these past few months of ‘limbo’ time when the enticing offer of an operation has been snatched away only to be waved back in front of me again without anything actually proceeding in any way. However, I’ve now withdrawn from the daily emails about new research and discoveries, recognising that piecemeal and ad-hoc immersion in the medical arena is of little help to me. It’s also extraordinary wearying. I can watch, somewhat wistfully, as American peers debate the benefits of expensive gene testing and urge each other to switch specialists, but my options are limited to those provided by the NHS. I’ll always keep my eye on new developments and would never opt for any treatment without investigating its benefits as thoroughly as possible but I am increasingly happy to place my trust in the professionals.
Of far greater benefit than updates on international research projects have been the confidences and experiences shared by others with rcc. Whenever I question whether I should continue with this blog I remember how helpful I’ve found reading the blogs of others – for practical tips regarding side effects but mainly for the uplifting boost of reading of others getting on with their lives in a myriad of ways. The flipside to that gain is absorbing the sadness of the inevitable deaths. Sometimes in those final weeks people just drift off radar, as did Marilouise Hagarty, a 32 year old American whom I exchanged emails with via the ACOR network. She posted that she was continuing with everolimus (Afinitor) in February then all went quiet until her husband posted to the papillary rcc email group that she had passed away on 23rd March. I was profoundly shocked by that news.
Some rare individuals, with the assistance of spouses, blog to the very end. No matter how positively you deal with this illness your anticipation of the future is always tinged with some trepidation about how your final days will play out and I always felt huge respect for Jane Thomson for sharing, with such candour, her every experience with rcc. Now I also, with regret, salute Bob Jakubiak who passed away at 3.30am this morning.
Until today I didn’t know Bob’s second name – he once posted a comment on this website as Bob JK, which was his user name on the UK Macmillan site. There his daily blog for the past three years on his experience of rcc attracted a massive and loyal following. He was always incredibly honest and very humorous about dealing with rcc, although underlying the ongoing gags was the very real pain of having to face not being there for his wife Linda and 10 year old daughter Kate. The increasingly sparse accounts of his final days were deeply moving; he brought so much comfort to so many rcc patients and I hope Linda doesn’t mind me posting his photograph here as my heartfelt tribute to a very unique man. RIP Bob.