Wednesday, 17 January 2018

The Results

We drove through several inches of snow to the Cancer Centre in Belfast and sat in the waiting room. We stared at the electronic board which tells you which room you have to go to for your appointment, then out of the window at the blizzard. T was wearing her wellies, it looked to be a sound choice. Suddenly my appointment was announced. We walked rather agitatedly to the designated room to find a new doctor. We sat down side by side and held hands. She introduced herself as the new Registrar and went straight to the bottom line. My CT scan showed no evidence of recurrence. I squeezed T’s hand and we both breathed a huge sigh of relief.

This turned out to be the most thorough review I’d yet had. The new Registrar was talented and extremely capable. We were with her for about half an hour. It marked quite a change from the Consultant, who often dealt with me in five minutes. The new Registrar was younger, on the way up in her career and not yet burnt out by the demands of the job. I’m very glad of this because we learned a great deal and were told some important information that I’d never been given before.

First we talked about my history: a primary cancer in 2011, with a metatastic recurrence that was found four years later. The initial surgical removal of the new tumour did not have a clear margin, so it regrew at the same site within six months. A second surgical procedure removed the tumour, but with a very fine margin of just 1mm. I’d had four clear scans over a period of 16 months since then. Each time I’d been worried about the tumour regrowing at the same site. So was it now unlikely that the tumour would regrow there? This was my biggest fear and I was hoping for some reassurance.

She told me that my cancer, Renal Cell Carcinoma, was different in its behaviour to many other types of cancer. She said that time was not a key factor for this cancer, as it had been known to recur up to 20 years after the primary. My heart sank. She went on. I was still designated ‘high risk’ and would be regularly checked by CT scans for years to come. My next scan would be in four months. Over time they would balance the risk of the interval of the scan with the accumulated radiation I would be exposed to. I thought to myself, as I’ve already had loads of CT scans since my initial diagnosis (more than 15), plus a series of MRI’s and PET scans, not to mention all of the X Rays, I was probably glowing in the dark already.

She also told me that I ought to be examining myself regularly for lumps. I was shocked; no-one had told me this before. She said the neck, armpits and groin were the most likely sites. She also said that as I’d had a bowel resection I should also be particularly vigilant regarding changes in my digestion and the nature of my stools. She gave me the card of a nurse specialist in the Cancer Centre to whom I should report any problems. And if necessary I would be brought in early for my next scan. Again this was important new information and marked a pro-active approach that was reassuring and most welcome. The card said that the specialist nurse was designated by the Friends of the Cancer Centre (a local charity) so perhaps this post didn’t exist previously.

Finally, we spoke about my recent surgery to repair my diaphragm. I explained that my recovery had been going steadily until a month ago when I had twisted back awkwardly and pulled muscles in my left side. Since then the left side of my ribs adjacent to the surgical scar had been very sore and I was worried that I might have damaged the repair. She turned to her computer and looked up the pictures from my latest scan. The scan gives a series of sections though your body and you can move finely between each section of the image with the wheel of the mouse. She examined the scan closely, pointing out features of my anatomy to us. Eventually she turned to me and said she could see no evidence of a tear in the repair. I breathed another sigh of relief.

We thanked her for her considerable help and set off for home. The blizzard was still going and lots of new snow had fallen. The motorway south was crawling along and the road into the Bronte Country was treacherous. I drove as carefully as I could but the car skidded twice on the way back. We were delighted to actually get home that evening. We closed the door and sat down, thoroughly exhausted. 


Saturday, 13 January 2018

The Wrong Trousers?

I’ve been home from hospital for just over three months now. For the previous two years I’d had strict limits on what I could eat and how much I could eat. I was regularly crippled with bad gastric symptoms. After my stomach was successfully repositioned into my abdomen, I’ve been eating well and trying all sorts of foods that I couldn’t eat before. I’ve discovered that I can pretty much eat anything again. This is a delicious new freedom to enjoy and I have done so with little restraint. Before Xmas I had to go out and buy new trousers as none of my old ones fitted me. But when I went to put on my trousers today I found that I couldn’t do them up. I double-checked. Were they the wrong trousers? Unfortunately not, I’ve put on 12lbs and four inches around the waist since September. Even my new trousers don’t fit me anymore.

T says I shouldn’t worry. In a few months when I get back on the bike I will slim down again. I’m not so confident. The joy of being able to stuff any sort of food into your mouth without having to worry about the intense pains I used to get in my guts is very seductive. I have a particular weakness for German gingerbread pastries, called Lebkuchen, traditionally made in Nuremberg. They come in all sorts of varieties, with different shapes and fillings. Lidl have a good selection. They were selling them off after Xmas and we bought twelve packets. At the current rate of consumption I may need to send off to Germany for more soon.

In other news, my cold turkey seems to be finally over and I’m sleeping relatively normally again. The agitation and insomnia were quite an ordeal for the best part of two weeks. I’m going to be very wary of taking opioids for anything other than the short term in the future.

I’ve also just had my cancer surveillance scan. These are happening at four monthly intervals this year. The last one was in September, a couple of weeks before my surgery. Now I am again waiting for the results. Most people try and minimise this anxiety, saying ‘don’t worry, you’ll be fine’. But when you are waiting to hear the news your mind plays tricks on you and any strange pain becomes the throb of a new tumour.

I’ve had years of practice at this anxious waiting, but it doesn’t seem to get much easier. I’ve found that you have to grit your teeth and not ask too much of yourself. A date is set for your appointment with the Oncologist in the Cancer Centre. So you look towards this date and, one at a time, you tick the days off. I find myself trapped in a terrible emotional mix of hope and fear. Little by little I do my best to get through it. I growl, walk the dog and reach for another Lebkuchen.


Thursday, 4 January 2018

Sleep, Storms and Stan

I’ve had eight agitated nights filled with insomnia on the bounce. I’ve tried a mild sleeping pill, but I just couldn’t relax in bed. I shifted my position by twisting and turning, but I couldn't get comfortable however I lay. My head was full of anxieties. Often I would get up and read until my eyes became heavy and I yawned repeatedly. Then I would go back to bed. I might sleep for an hour or so and then wake up agitated and unrelaxed, or I might have to get up again without sleeping at all. This interminable process repeated each night. I might get perhaps a total of four hours of fitful and disturbed sleep. I realise this is the amount of sleep that Mrs Thatcher regularly had whilst Prime Minister, but she became completely mad.

I’ve had a series of exhausted and distracted days with bad headaches, and only my agitation to keep me going. I don’t know how I would have managed if this had kept up for any longer. Two nights ago I managed to get to sleep and, despite waking regularly, I slept fitfully until eight AM. During the day I again felt headachy and exhausted but I was less agitated than usual. Last night I again slept fitfully, but this time for a little longer. This morning I felt a little less exhausted and I didn’t have a headache. You will also be pleased to learn that my diarrhoea has stopped. I’m now fervently hoping that I am coming to the end of my cold turkey from opioids that began on Christmas Day.

It’s certainly made me realise how strong and dangerous these drugs are. Their great capability is that they interrupt and alter our perceptions of pain in our body. Opioids do this much more effectively than any other class of drugs. So when you are coming off them, your perceptions of your body seem to remain distorted. I felt agitated and unable to find a comfortable position in bed, however much I tried. I very much hope I have come down fully now and am back in touch with normality again. I certainly feel pretty worn out from it all.

One positive of becoming partly nocturnal is that I have been getting through my Xmas books at a great rate. I devoured TS Eliot’s Book of Practical Cats early one night and went on to The Running Hare by John Lewis-Stempel. This is a great piece of nature writing, set near the area I grew up in, which gave me great tugs of recognition as he spoke about local landscapes and landmarks. I moved on to a journal and handbook of Stoic philosophy, which was most appropriate and very useful. The only one I didn’t start was Lincoln in the Bardo by George Saunders. Oddly enough this might have been the most appropriate for the peculiar half-waking and half-sleeping state I was in each night.   

Our New Year has also been without phone or internet. This is not a dramatic resolution to detox ourselves from the modern world. Storm Dylan on New Year’s Eve did the initial damage and this was compounded by Eleanor, whose winds roared just as threateningly as Ophelia. Along with plenty of branches from the trees that form a hedge along one side of the garden, the phone line was brought down. We are waiting for an engineer to come and fix it. Not having a landline is not difficult when you also have mobiles, but the lack of the internet is a big problem. I have been watching TV news, but it is very uninformative, even the supposedly detailed BBC News Channel. And of course there is the lack of contact with friends and family through email and social media. I do not have a smartphone and would only check these from time to time each day via my computer. Missing a day or two is manageable but any longer gets extremely difficult as so much communication is now only electronic.

This morning I got a text from BT Openreach telling me that engineer Ryan would be attending to our  job today. We waited and waited. He arrived at 4.15 and set about it. He checked our internal cables through the house and in the roof-space using a tester and a strange little sensor that could detect where the cables were under the loft insulation. He climbed up the gable end of the house and attached one end of a new external cable. He then went to the telegraph pole at the end of the garden and attached it there. He completed most of the outside work in the dark by the light of a head-torch. At 5.30 we were connected again. He said he shouldn’t have been doing the outside work after dark, but he wanted to get the job finished today. I said that’s well beyond the call of duty, thank you Ryan. He smiled and said his name was Stan. Our repair job had been reallocated. Well done Stan.