Friday, 18 January 2019

Tests and Results

It had been a long four weeks over Christmas and New Year waiting for the results of my biopsy and for my next gastroscopy. I’d done my best to put it all to the back of my mind, although it did keep coming up and catching me unawares. While there is always plenty to distract you at this time of year, it is also a period for reflection on what has gone before and what is to come. Cancer patients are by nature apprehensive. You get tested more often than others and you know the devastating consequences of a bad result.

So, T and I again went to the South Tyrone Hospital. It was easy this time, we knew the way. I had been fasting overnight and my gastroscopy would be done in the afternoon. It meant missing breakfast and lunch. Not much of a hardship. Indeed, three years ago I had been made to fast for 12 days when my lung collapsed after surgery in the Belfast City Hospital. The first part was the hardest, but after a few days you began to lose interest in food. After 12 days, with only fluids, you had to learn to eat again.

In the small theatre, I found a new team doing the procedure. It was certainly more uncomfortable than the previous time. The doctor seemed to push the endoscope in more rapidly and there was some sensation of choking for a while, but nothing like as bad as the first time I’d had it done. Happily it was also over fairly quickly. My stomach was empty and they got down as far as my duodenum and took another biopsy.

They found nothing untoward in my stomach. There was some inflammation in my duodenum and the biopsy was to check for the presence of a virus, H pylori. I was told that the biopsies taken four weeks earlier showed that I had ulceration in my oesophagus. This was caused by acid reflux. Importantly, the lab found no sign of cancerous or even pre-cancerous cells. I gave a sigh of relief. I might be one of the few people who were happy to be told that they had an ulcer. In the short-term I would need to have a course of high dose acid reducing tablets (a PPI), which I might need to take in a low dose for the rest of my life.

I was taken to a small recovery room and was monitored for pulse and blood pressure. Then a nurse came and told me that the biopsy they’d taken today was negative for H pylori, another good result. She then did my discharge from the hospital, which included a long list of what I should and should not do in the next few hours. This concluded with one of the most unnecessary pieces of medical advice I’ve ever received, ‘if you start to vomit blood go straight to A & E.’

I can only hope that my run of test results continues, for I have my regular cancer surveillance CT scan next week.

Monday, 31 December 2018

Beirut, Berlin and Beyond

According to my cycle computer, I’ve cycled on 105 days this year (since April) and travelled a total of 3362 miles with 47500 feet of ascent. That’s the equivalent of cycling from here to Beirut. I’ve averaged 89 miles a week on the bike and 32 miles per ride. Over the same period, I’ve walked 1142 miles (an average of 22 miles a week). That’s the equivalent of walking from here to Berlin. After years of poor health and incapacity, I feel I am getting some of my strength and fitness back.

2018 has been the first year, out of the past four, in which I haven’t been in hospital for major surgery during the autumn. At this time a year ago, I’d been taking opioids for three months following surgery and was about to embark on several weeks of cold turkey (not the festive fowl). Three years ago, I was in hospital on Christmas Day. This change for the better is undoubtedly cause for celebration. Long may it continue.

My last big operation (September 2017) was to repair a problem caused by previous surgery. Thankfully the op was successful and I now have two fully functioning lungs again. The best recovery is walking. Nursing staff force you to get out of bed the day after surgery, and then help you to take tentative steps. When you can walk to the toilet unaided (and do your business) you are discharged.

At home I walked every day, however painful my ribs and abdomen felt. At first this was just around the house, T supporting me. Then we managed short walks outside. Eventually I could walk unaided and embarked on short trips down the lane. After some months, I had graduated to easy walks in Castlewellan and Tolleymore Forest Parks.

As my strength improved, I tentatively began cycling. I started out on easier rides along the canal towpath, making a habit of stopping at the excellent Petty Sessions Cafe. Then I graduated to hillier rides through the lanes and drumlins of South Down. Eventually, in the good summer weather, I took the bike on the car to Louth and Meath for longer rides. My longest ride of the year was in August, a loop through Meath of 63 miles. Normally, I would stop cycling in the winter. But because it has been relatively mild, I’m still heading out two or three times a week and riding 40 miles or so at one go – just because I can. If the mild weather continues, I could soon be in Kabul.

None of this activity has been without pain. My new surgical scar has joined my four old scars and together they can ache pretty badly. I have learnt to accept this chronic pain as the price of survival. I need to use pain relief and grit my teeth, then rest up. I know that attempting activities on consecutive days is out of the question.

I’ve come a long way over the past year in more ways than one. I'd like to thank all the friends and family who have encouraged and supported me on this journey. Your help has been invaluable. Thank you so much. But most of all I’d like to thank the ever dependable and resourceful T, who has been with me every step of the way.

A Happy New Year to one and all.

Saturday, 22 December 2018

Christmas Presents

I received an early Christmas present from the NHS this week. It was an appointment for an investigation. And it wasn’t on my list for Santa. Remarkably, the appointment date was just three weeks after my GP had referred me. Given the extra-long waiting lists in NI, which are worse than in Britain, this appointment appeared at the speed of light. At last it seems there is an advantage to the bad medical history I’ve acquired over recent years – I get put to the front of the queue.

The investigation was a gastroscopy, a camera down into the stomach. I needed this investigation because I’d been having a range of gastric problems since the surgery a year ago to repair my diaphragm, and return my stomach from my thorax to my abdomen. I wasn’t looking forward to it at all. I’d had a gastroscopy seven years previously in the City Hospital and I vividly recalled plenty of gagging and choking.

We had to go to a hospital that was an hour’s drive away, the South Tyrone in Dungannon.  I took an early breakfast then fasted and we arrived at lunchtime. Even though I was having a single investigation, the full admissions procedure was followed: medical history, allergies, next of kin, etc. I was then led from the waiting room into a small theatre. I sat on the table and the doctor sprayed the inside of my throat with anaesthetic. I lay on my side and they put a bib around my throat and connected me up to check my vital signs. I was given a mouth guard to bite on. I began to think of the rudimentary operations that take place in Western films with the patient biting on a piece of wood as their body is cut open. However, the guard had a hole in it and the doctor began to insert a long black tube into my mouth. I tensed myself for the ordeal.

But there was no gagging and choking. The tube slid down easily, almost without sensation. The doctor and nurse were looking at a screen and saying encouraging things to me, like ‘almost there, you’re doing well’. Then he stopped inserting the tube into my mouth. ‘We’re just going to take some samples’, he said. The nurse fed a long thin cable down inside the black tube. ‘There’, said the doctor. The nurse clicked the end of the cable and I felt a slight pinch. They took another sample then he withdrew the long black tube.

The doctor told me that they couldn’t complete the investigation because there was still food in my stomach, despite my breakfast (a bowl of porage) having been over six hours ago. Either I had a slow digestion or it had been slowed by my anxiety about the procedure. They decided I would be rebooked for another gastroscopy in early January, but this time I would be fasting overnight.

What they did find was that I had significant inflammation at the end of my oesophagus. The samples would be sent to the lab to investigate the cause. The most likely explanation was that it was due to stomach acid reflux. But it could also be caused by a range of other things, such as infection. At home I looked up the other possibilities, only to find that the inflammation could also be cancerous. That was a festive present I hadn’t bargained for.

Monday, 10 December 2018

Secret Dublin

We’re back from a day out in Dublin. The city was thronged with Xmas shoppers. T joined them. I spent four hours in a Concern Worldwide Board meeting, which discussed the implications of Brexit for the charity’s work. Every scenario was negative and a distraction from the core mission of helping the poorest of the poor. Afterwards, to clear my head, I went walking in Iveagh Gardens, one of Dublin’s secret places. On the way home, we visited two intriguing exhibitions at the Irish Museum of Modern Art.

The Iveagh Gardens are hidden away between Camden Street, where Concern’s offices are located, and Stephen’s Green. Entirely surrounded by buildings and a wall, it is a small public park in the centre of Dublin that is always peaceful and quiet. The space was once the private garden of the Earl of Clonmel, who accessed it via an underground passage from his Georgian townhouse so as not to have to encounter the great unwashed. Later the gardens were sold to the Guinness family who kept it as their private domain until it was donated to the State as a public park. Iveagh Gardens contains lawns, mature trees, statues, a waterfall and a maze. There is a sunken lawn, which is Ireland’s only purpose built archery field, under which is reputed to be buried the body of an elephant that died in Dublin Zoo.

My walk was bracing, it cleared my head from the madness of Brexit very effectively. Unfortunately, I knew this would only be temporary as the lunacy would keep on going all around us. Cool rain fell and spattered the gravel paths which were already somewhat puddled.  It took me about ten minutes to do a circuit of the park and I saw no-one else. I decided on another lap. The only sound was a bell, which I took to be from one of the trams in the street outside, but it kept tolling until I realised it was the bell of the park keeper who was about to lock the gate.

IMMA at Kilmainham is a little out of the way, but always worth a visit. The two current exhibitions are interestingly related. Mary Swanzy was an Irish Cubist who exhibited at the Paris Salons alongside Pablo Picasso. This retrospective covers the range of her work from cubist pieces to more recent symbolist and allegorical paintings. Wolfgang Tillmans is a German photographer who won the Turner Prize in 2000. His work is intriguing, odd landscapes and portraits that are framed in unusual ways. I really enjoyed his large-scale images from Africa, the USA and South America, especially one of the Sahara. He also had one room sparsely filled with smaller images of an open-heart operation. Several were close-ups of machines with complex arrays of piping, filled with blood, that were keeping the patient alive. Having had this operation seven and a half years ago, it sent a shiver down my spine.

Sunday, 2 December 2018

The Joys of Winter Cycling

Despite the winter weather, I’m still cycling regularly. Two or three times a week, depending on the conditions, I put my layers on: four on my top and feet, three on my legs, two pairs of gloves and a fleece-lined cap that covers my ears. It takes me about a quarter of an hour to get all of this kit on. I feel a little like a medieval knight preparing for a tournament; I wish I had a squire to help me. And why am I doing this? Because, I can.

For each of the past three years I have had a major operation in the autumn. This means that I’ve spent each previous winter in recovery, each spring building up my strength and each summer doing activities, such as cycling and walking. All with the prospect of having to go back into hospital to be cut open and having to cope with the pain and incapacity of it all over again. 

I’m delighted to say that I’m still all clear and there is no surgery on the horizon. So this is the first year that the pattern has been broken and I am celebrating that fact by continuing my cycling into the winter. I don’t know how long I will keep going. I’m not masochistic, I’ve only been going out on the bike if the temperature is above 5 degrees and it isn’t raining. But with the relatively mild winter so far, that has made many days possible. I’m glad to be able to do it at all and I can feel the strength coming back into my legs.Unfortunately, post-operative pain is cumulative and I have now amassed a variety of scars on my torso which regulate how much I can do and how often. 

There is a fellowship of winter bike riders. Even on the busiest routes, such as the Newry Canal Cycleway, you don’t come across many people braving the conditions. We give one another a cheery wave or a greeting and stop to check if we see another rider with a problem. Yesterday on the cycleway I saw only two other riders, one of whom I know well as he is also a member of the Sing for Life Choir. It had been a drizzly morning. I set off at midday, trusting the Norwegian Weather Forecast (which is usually very accurate) that it would soon clear. Unfortunately it didn’t subside until mid-afternoon and by then I was damp and cold, despite it being 8 degrees, having had to go though some shallow flood water on the cyclepath from Scarva to Portadown.

When cycling, you are always colder than the actual air temperature because you are travelling through it at speed and get steadily chilled. In the summer, this is lovely and cooling, particularly when the temperature is above 25 degrees. In the winter, you need to stop regularly and walk around to heat up, or better still go into a warm cafe and have a hot drink or soup. My favourite stopping place is the Petty Sessions cafe in Poyntzpass. Currently they have a very large fir tree in front of the cafe complete with Xmas lights. You always get a warm welcome from Helena Gamble and her helpful staff. The food is great, they do fine soup and Irish Stew as well as fantastic fruit pies (made by Mrs Copeland). Admittedly, it is sometimes hard to motivate yourself to go outside and get on the bike again.

Sunday, 18 November 2018

With John and Yoko in Mayo

We were booked to escape to our favourite West-coast haunt, but I had been in bed for three days with a bad cold. After some debate we decided to go. T did the long drive, whilst I consumed throat lozenges and Lemsips. After a fine evening meal in the Nephin restaurant and a good sleep, I felt I was starting to improve. We spent much of the first day in the leisure centre using the sauna and steam room and relaxing in the heated pool; we pretty much had the facilities to ourselves, it was a stormy November and there were few guests.

The Mulranny Park Hotel was opened in 1897 as a railway hotel on the Westport to Achill line. Unfortunately, the railway line was not a success and was closed in 1937. The building then went through various incarnations, being completely refurbished and reopened as a four star hotel eight years ago. The hotel’s most famous guests were John Lennon and Yoko Ono, who spent a weekend there in June 1968 (fans need to ask for room 238).

In 1967 John had bought an island in Clew Bay for £1700 at an auction. He wanted it as a retreat from the pressures of being a Beatle. After this success he came to Mayo with his then wife Cynthia and their son Julian. He bought a Romany caravan, painted it psychedelic colours and got a local man to take it to the island for him. John, Cynthia and Julian went to the island by boat; it is not known how long they stayed in the caravan, or indeed if that was John’s first visit to Mayo. This little bit of local history was the inspiration for a fine recent novel by Kevin Barry called ‘Beatlebone’.

John then left Cynthia for Yoko and after working on what would become the White Album, they flew to Mulranny and then on to the island by helicopter. It seems that John and Yoko didn’t have a good experience there, it was nesting time and the sea-birds that had inhabited the island undisturbed for ages, dive-bombed the new arrivals. Yoko, in particular, took against the place. They returned to Mulranny by helicopter and left for London the next day.

John kept the island for some years, but he never returned. Instead he offered it to a hippy friend, Sid Rawle, who set up a commune there. The Romany caravan was joined by a collection of tepees as around twenty hippies came to live there. But de Valera’s repressive theocratic Ireland was not a hospitable place for them, even in a remote part of Mayo. The commune did not thrive and eventually the island was sold.

For the remainder of our stay at the hotel we split our days between the leisure centre and short walks along the greenway. I think it was the combination of the sauna and the steam room that helped me the most. The fine meals and good sleeps were very important too. By the second day, my sinuses were clearing and my aches began to leave me. On the final day I ventured into the hot-tub. It was great to lie back in the fresh air, watching the clouds scudding in from John Lennon’s erstwhile island and to have warm water bubbling all around me. By the time our wee break was finished, I was fully recovered. Although it didn’t prove to be a sanctuary for John and Yoko, it certainly worked for me.