Sunday, 18 February 2018

Rest is as Good as a Change

Perhaps it is an age thing, but T and I are not unhappy that we had to cancel our trip away this week. We were due to go to our favourite hotel on the shore of Clew Bay in Mayo. But I continue to be very sore with my hip injury and T is exhausted from commuting, working and studying. Despite the undoubted delights of being there, we decided that the five hour journey to Mayo was too much for us in our depleted states. We grumbled a little at first, but then relaxed into a week of rest at home. The only member of the family to actually be delighted was Rex who no longer had to go into the kennels.

I’ve been spending plenty of time doing my stretching exercises and icing my hip. But the pain remains very stubborn. Indeed it seems to have spread to my right knee. According to the osteopath, this is not surprising as I am concentrating on stretching the muscles all down my right side. The stored up imbalances are being worked on and they refer pain up and down the leg and into the groin. I’ve begun to take extract of Turmeric, called Curcumin, which is a natural anti-inflammatory. I’m not sure whether it is having a positive effect yet. But I know that I cannot take Diclofenac or any other NSAID because I only have one kidney.

Sitting for any length of time is one of the things that always exacerbates the pain. I’ve taken to using a small padded cushion at home and taking it with me when I go out. We went to the Mourne Seafood Bar in Dundrum for my birthday. The food was excellent as usual, but the plain wooden chairs were very hard on me. I try and go for regular easy walks, accompanying T part-way down the lane. She is now in charge of dog walking.

One of my presents was a Fitbit, a device which records how many steps you take a day. I was surprised how many steps I took just around the house. But the distances that it calculates for you are problematic, as the type of steps you take around the house and when out walking are very different. The Fitbit calculates the distance on a constant stride length. I’ve found that I have to set an average stride length that is significantly below my normal walking stride in order to get anywhere near an  approximate reading of how far I walk in a day (which currently is much less than I would be doing normally).

The most interesting reading that the Fitbit takes is its recording of your sleep patterns. Each morning it tells you how much time you spent awake, in light sleep, in REM (dreaming) sleep and in deep sleep. I believe it calculates the stages of sleep from pulse readings and the episodes of wakening from the motion sensor. So if you are awake and unmoving it will record that as light sleep. Each morning I look forward to seeing its calculation of the types of sleep I had. And its calculations of how little or much REM and deep sleep I had seems to correlate well with how tired I feel on waking. 

Over the week we have both been catching up on our sleep. T has been sleeping in and reading in bed till noon. Although I would tend to get up rather than lie in, I’ve taken to having afternoon naps again. There is an old saying which goes something like, when you begin to rest you find out just how tired you actually are. This week we’ve both discovered that we have been pretty run down.  We could both probably do with another week of good rest.



Friday, 9 February 2018

Greater Trochanteric Pain Syndrome and Frozen Peas

I have the results of my MRI scan. The source of the excruciating pain I’m getting in my right side is inflammation in the muscles, tendons and bursae on the outside of my hip. I’m delighted to find that my hip joints are normal. Also my lumbar spine is worn but not too much. I’m very glad about this, as over twenty years ago I was told to give up running because of a chronic back condition. Since then I’ve been very careful to do stretching exercises for my back every morning and to focus on cycling and low level hillwalking. And my back feels better now than it was decades ago. I’m shocked to learn that soft tissues can cause such terrible pain around my hip. But having an accurate diagnosis, which rules out other complications, is a good starting point.

The inflammation is in the complex of soft-tissues that surround the greater trochanter, the bony protuberance you can feel at your side. This is the knobbly top of your femur, where the leg bone turns towards your groin to form the ball of your hip-joint. And this is where the muscles from your leg, buttock, side and abdomen all converge. It also gives an insight into how my problem probably came about. Around two months ago Rex ran full pelt into my right leg, just as I was stepping forward. He caught me under the knee and forced my leg back, so much so that I toppled forward like a sprinter lunging for the line. My side has not felt right since then. I imagine that this accident pushed some of these tissues out of alignment and the inflammation has been building up.

The treatment for greater trochanteric pain syndrome is icing, stretching and gentle exercise. The osteopath tells me that he hopes I will get better in four to six weeks. He’s given me a long list of exercises to do to stretch the soft tissues around my hip. So now my morning exercise routine takes around twenty minutes to do, instead of the normal five. And he suggests that I do these all again later in the day. He also advises that I do a selected few of these before bed. I’m pretty stiff because I’ve not really stretched very much since my surgery four and a half months ago. But I am getting better at the exercises and they are helping to reduce the pain somewhat, although it is slow progress and I can see it will be some time to get everything back into healthy alignment.

Icing is to help reduce the inflammation. I can’t take anti-inflammatory medication (NSAID) as it is very hard on your kidneys; I only have one which I must look after. Instead I bought three bags of Tesco frozen peas. You don’t need fancy gel packs, the frozen peas are the very best for the job. They mould easily to your body and work quickly. You need three bags to be able to rotate them in the freezer. The recommended way is to put the peas on for ten to fifteen minutes, then let your body warm up to normal temperature for an hour or so before repeating the treatment. Just remember not to make them for tea.

Gentle exercise is to help disperse the inflammation. I’ve found that sedentary activities: sitting for over an hour, driving in the car to Belfast and sleeping all increase the pain as the inflammation builds up. I go for short walks down the lane with our mad dog and try not to sit for too long. Sleeping is at best a problem because it's hard to find a position that is comfortable. I'm afraid it has become normal for me to wake in the small hours in pain. However, I’ve taught myself not to reach for the morphine, but instead to get up, stretch and rummage in the freezer for a trusty bag of peas.




Friday, 2 February 2018

The Hard Stuff and Winter Pressures

I’m back on the morphine again. This is not because I’ve become an addict and can’t resist it; indeed, only a few weeks ago I went through the cold turkey of withdrawal. Nor is it because I have done something bad to my hernia repair, but because I’ve got a hip injury that has been excruciating, particularly at night. I tried all the normal painkillers but they just didn’t work, so I reached for the bottle that had been on the bedside table since I came home from hospital and took my first 3mg dose. After a further pain-filled and sleepless hour or so, I took another dose and then another, until I began to feel the pain receding a little and I sank into sleep for a while.

The pain in my hip had come on steadily. At first I felt an ache when lifting my right leg in and out of my trousers. Then the pain became more widespread across my hip and buttock, which felt swollen and very sensitive to touch. I went to see an osteopath who manipulated me and gave me some exercises to do at home. I followed them carefully and iced the hip, but the pain didn’t reduce. It was always worse at night. Then I woke with a severe stabbing pain in my right hip. I leapt out of bed and began to rub my side, I could hardly walk. It was a spasm; my hip was throbbing as if it had terrible toothache. I took plenty of morphine, but I was in agony for the rest of the night.

T was away, so I had to drive myself to A& E. It was Sunday. The waiting room was full already. It steadily overflowed with new patients as few were called to be seen. Eventually I was called into the clinic. There were only a couple of doctors on duty. One examined me briefly. He told me that my injury wasn’t serious enough to be treated today. He gave me a short course of anti-inflammatory tablets and sent me home to see my GP. I asked what was causing the pain? He said that to him it wasn’t that important. He was only concerned if the problem was sciatic or it stopped me peeing. What about an X-ray, I said? He said I needed a MRI to determine the source of the pain, but I probably wouldn’t get that on the NHS.

I had waited for four and a half hours in Craigavon and was seen by the doctor for less than five minutes. I drove home thinking that all the reports which said that the NHS was stretched to breaking point in A & E were indeed true. The problem was exacerbated by people misusing A & E with trivial complaints, so that doctors had to sort the long queue of patients into those that needed emergency treatment today and those that could be returned to the GP. Considering the level of pain I was in, I was very disappointed to have been put in the latter category.

I spent another painful and sleepless night. If I took enough, the morphine would knock me out for an hour. But I would always wake up in agony. I went to see the osteopath again. He said that the pain in my hip could be coming from my lower back, my sacro-iliac joint or my hip. He said he would refer me for a MRI privately at a clinic in Hillsborough. It would cost £500 but would probably be done by the end of the week. I didn’t think twice, I had to find out where the pain was coming from and what could be done about it.

After several pain-filled and sleepless nights I got in to see the GP. He reiterated the osteopath’s view on the source of the pain. But importantly he restocked me with morphine. I was now taking around 30mg a day, mostly at night. This was almost two thirds of the dose I was on in hospital. The morphine combined with severe lack of sleep left me burnt out and in a very dopey state during the day.

I got a call from the clinic and went in for my MRI. It was brand new and had been opened by Rory Best. After paying up and answering the long list of questions about metal in my body I was put inside the machine. An MRI scanner is rather narrow and noisy. They put headphones on me. Throughout the forty minutes of the scan I was assailed by the gushy and rather puerile warbling of an unrecognisable boy-band. I wasn’t able to take the headphones off as my arms were strapped down by my side. When I was released I asked if they had chosen the music especially, no they said, it was the only CD they had. I drove home with a DVD of my scan. I didn’t think I would be playing it at home this evening. But I would get the radiologist’s report the next day. The luxury of private medicine.

It was disturbing to see, at first-hand, how the underfunded NHS only really works for acute problems and how the private sector has been encouraged to expand and take up the demand that is not able to be treated. I am very lucky that I can afford to pay for a MRI privately to help diagnose my injury. Otherwise I would be in extreme pain with no prospect of finding a diagnosis or appropriate treatment anytime soon.




Friday, 26 January 2018

The Anniversaries


It has been a week filled with anniversaries: three birthdays, one arrival and one memorial. All five are family, but only two of these are still living. It sounds like a conundrum, but it is not. Let me elaborate a little.

The first two birthdays are of my late father and late brother. They were born on the same day in mid-January, thirty six years apart.

Raymond Jeffcutt was born in 1918, although his later records put it as 1917 because he lied about his age in order to join the army at 15. He ran away from home, joined up and was soon posted to Egypt. His father was badly wounded in the First World War and returned home an invalid, so all of the children, there were nine, had to leave school at 14 and work. My father got a job as a shop delivery boy: he hated it. After he joined the army he always sent money home. His favourite memory of army life was a series of long expeditions through the Western Sahara map-making. He worked hard and was promoted rapidly during wartime to Captain, commanding a squadron of tanks at the battle of El Alemain. Sent on a suicide night-attack by Montgomery, he was wounded and captured while most of his squadron were killed. He spent three and a half years in POW camps in Italy and Germany. Returning home he married, had three children and worked in a series of mundane jobs. He died in 2000 aged 82.

Robert Jeffcutt was born in 1954. Like my father, he left school as soon as he could at 16. And again like my father, he worked his way up to become a civil engineer and the head of a highways contractor. He married young and had two children. He was a good athlete and won prizes for cross-country and road racing. Like my father, he was very practical and spent much time improving and extending the family home. In 2009 he contracted a fast-growing cancer which was diagnosed too late to be treated. He died in 2010 aged 56. Had he lived, he would have seen three grandchildren.

Gillian Banks was born in 1959 and became my first wife. She was cosseted as a child because her parents believed she had a heart defect. She became a medical secretary in the NHS, got her heart checked to find that she had no problem whatsoever. She began to cycle and joined a hill-walking club in Manchester, where I met her. We moved together to Southampton in 1984, my first lectureship. Buying our first house, we moved in at Xmas 1986. A few weeks later we went away for the weekend to Snowdonia. Gill had some sort of blackout and fell to her death from the Snowdon horseshoe ridge. She was 27. I barely survived the ordeal that followed.

Amongst other things, I suffered depression and lost my job. I was glad to find another, but it was in Stirling. So I moved five hundred miles away to Scotland, a place where I knew nobody. I rented out the house in Southampton and lived in bed-sits. Within a year I met another woman (also an academic) who persuaded me to come and live with her in Glasgow. I was reluctant but still did so. I was very emotionally confused and in plenty of pain. We competed rather than supporting each other. I became workaholic, got promoted and became the head of an international research network. I began to apply for Professorships and on my third interview was appointed at QUB. I arrived in Belfast in mid-January 1998, another place where I knew nobody. She then phoned to tell me our marriage was over.

Oddly enough, Northern Ireland has been the place where I have sorted out all the problems from my past. It was a lot of hard work over the early part of the twenty years that I’ve now been here. But I’m very glad that this happened, because four and a half years ago I met my dearest T. This was at a difficult time for her; she was leaving a bad marriage. But there was that indefinable something special between us, which we both recognised. We have since thrived together, despite the many challenges we’ve faced: her messy contested divorce, my cancer recurrences. We are now stronger, closer and happier than we have ever been. I just couldn’t imagine being with anyone else.

I am writing this on T’s birthday.

Many happy returns my dearest love.




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.