I have been really moved by the comments and messages of support some of you have been posting on the site. To date I haven’t published these simply because a lot of the content has been quite private and some of you have asked me not to! I welcome comments though and will publish them if you indicate that you are happy for me to do so. Otherwise, be assured that they won’t be read and appreciated by anyone other than yours truly. I also need to apologise for my delay in replying to messages – I’ll get on top of that within the next few days.
I’ve also been pretty tardy about updating the blog. Having created this information source I appreciate I should continue to feed it and I’ve been gently chided by a few of you about this recent uncharacteristic silence. While we were on holiday we didn’t quite achieve the nirvana of that Macmillan television ad slogan - “today was a good day, today I didn’t think about cancer” – but we did have plenty of days where we didn’t think about it much and when we arrived back last Thursday (30th Sept) I was reluctant to get back in the cancer zone.
I was also disappointed not to have heard anything about an appointment with Manchester, fearing that I would continue to be frozen in this treatment-less limbo state for months to come, but that changed on Monday (4th Oct) when Robin called me at work to tell me I had an appointment set up for 11.30am on Wed 6th Oct – which necessitated last-minute juggling of work responsibilities.
Fortunately my boss, Neil, kindly agreed to rearrange his schedule to take over an engagement I had in Stirling. Work (I’m Neil’s Deputy, helping to run the Royal Incorporation of Architects in Scotland) has been amazing actually, really flexible and understanding about my need to prioritise medical appointments. Everyone there has been incredibly supportive. I have the most amazing colleagues and the members are just the best. A lot of my family and friends have expressed surprise that I continue to work full (-ish!) time but I love my job and it not only keeps me motivated but also provides sufficient distraction from the surreality of a terminal diagnosis to keep life relatively normal.
There wasn’t much normal about The Christie, which is a leading cancer hospital and is one of the three English hospitals participating in the Everolimus clinical trial for papillary rcc. I guess I was so swept up in the excitement of getting on the trial that I forgot about the grimmer reality of why I was going to Manchester but walking into the main outpatients department of The Christie was a particularly stark reminder. It was totally different from the soothing and intimate surroundings of the HEBA clinic at the Western General in Edinburgh. My first impression of the reception area of The Christie was that I had walked into an aircraft hanger of very sick people, many clearly desperately ill and in wheelchairs.
It was a busy clinic day and there were literally hundreds of people being ‘processed’. That was what it felt like – a great big cancer-patient processing factory, an impression exacerbated by the fact that when you arrive you take a ticket from an electronic machine and wait for your number to light up to go and have your blood taken. I was number 68. Large plasma screens could provide some distraction for patients waiting around but instead simply show a loop of bullet points of impressive but ultimately soulless stats – The Christie deals with 40,00 patients a year, 81,000 radiotherapy treatments per year, 3,700 surgical operations, the cafe serves 150 sausages per day, 120 eggs, 50 kg of chips…
I’m wary of sounding critical. I’m so deeply grateful for the opportunity to come to this hospital. I’m conscious that behind those stats are the life stories of thousands of people and their families who will have a special place in their hearts for The Christie and certainly every staff member I encountered was pleasant. On reflection I could see that the Argos style ticket system of blood and ECG tests was a briskly efficient way of dealing with everyone with maximum speed and ease but the looping Powerpoint presentation, surely the work of some number-crunching administrator, seemed to blithely ignore the humanity of staff and patients. Robin kept insisting it wasn’t that bad. I was probably just being over-sensitive and touchy.
The consultant in charge of the trial, Professor Rob Hawkins, was great. The conversation was completely straightforward and he understood my desire to start treatment immediately rather than delay it until the cancer was more advanced, noting that the determination to use meds to fight it as soon as possible is typical of patients my age. In theory he is agreeable to my joining the trial but there is a process to go through first. He explained the trial and potential side effects in detail and gave me information to take away to ensure I was making a considered decision. I will see him again next Thursday if I want to give him my signed consent form – I’ll definitely be doing that but there has to be a time lag.
There are no certainties yet. I have to undertake a series of tests, including a CT or MRI scan which has yet to be scheduled. I have to have good lung function. Ironically, if the tumours have shrunk for any reason (the effect of all those prayers! the gallons of green tea! sheer willpower! the benefits of two weeks on a beach in Estoril!) then I won’t be eligible at this stage and when the tumours increased the trial could be closed as they are nearing capacity. It was clear that in such a scenario it would be a case of ‘when’ and not ‘if’ they increased, with comments about the inevitably of progression, reminders about the incurable nature of this disease and a particularly expert but stinging comment on the fact that at the moment there is no miracle cure on the horizon in case we had been hoping for that (err, yes, we had. Our current fantasies entirely revolve around that scenario).
So, overall a good day and I am a step closer to the goal of getting everolimus. The most recent trial showed it “significantly extended median progression free survival from 1.9 to 4 months”. That bald fact may not sound great – effectively an average of an extra 2.1 months of progression free life but it does mean a lot. That trial was for patients who were taking it as a second line treatment so presumably they had already been stage 4 for some time and, of course, a median result means plenty of patients would have been progression free for much longer than 2 months. Some patients have been progression free for 18 months on everolimus.
So, to get a chance of getting everolimus I need to hope the tumours haven’t shrunk. It will probably be about a month from now before I find that out. The prof introduced me to the specialist clinical nurse just before we left and she said, “oh, we’ve heard all about you, a few people have told us you were coming” which left us baffled, bewildered and pretty intrigued. Perhaps it’s not just family and friends who have been reading this and the online community has been at work. Sorry this is such an epic post. I will post more regularly from now on. Promise!
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