Sunday, 24 November 2019

An Impactful Week

Our dramatic week began with a car accident and ended with a visit to my oncologist to get the results of my latest cancer surveillance scan. T was driving home from work and stationary on the M2, queuing to get onto the Westlink in Belfast. An elderly driver whacked into the left rear of her car. She was jolted backwards and sideways, but thankfully suffered no serious injury. The elderly man got out of his badly damaged car and wandered over to her. She wound down the window but he just collapsed in floods of tears. Fearful for his safety on the motorway, she called the police.

The police arrived quickly and sorted things out very effectively. The elderly man admitted responsibility for the accident. His car was a write-off. T’s was badly damaged but just about driveable. After they made sure she was okay, she was escorted along the Westlink by two police cars with blue lights flashing. When she got home she was exhausted but unhurt. The next morning she had a sore shoulder and bruised ribs. I wanted her to go to hospital for a check-up, but she wasn’t keen.

Her car was a mess. The rear bumper was bent and hanging off. The rear side panel was badly caved in and one rear wheel looked wonky. We took photos and sent them to a mechanic friend. He said that it looked like the car had suffered structural damage and warned us that it could be written off. We were shocked because the car was only six years old. Indeed, we had just spent almost £2000 on new timing belt, water pump, radiator, tyres and shock absorbers. The work on the car had been completed the day before the accident.

The insurance company agreed to provide a courtesy car. T’s car would be taken away for assessment of the damage and the cost of repairs. We read up about write-offs and learnt that if a car is repairable but written-off because the repair costs are too high (as a proportion, possibly 50%, of the book value of the car) you can buy it back from the insurance company. But you shouldn’t go down this road without an independent professional opinion on the extent of the damage and the cost of repairs. We called the proprietor of a local body-shop and he agreed to come and check the car over the next morning. We were keen to hear his verdict, but he didn't turn up. The day after a wee man from Belfast came in a low loader. He delivered a shiny new courtesy car and T’s poor damaged car was dragged away.  

Several hours later we were sitting in the Bridgewater Suite of the Cancer Centre awaiting a different call. A nurse escorted us to the doctor’s office. It was the Registrar instead of the Consultant. This was a good sign. He began, as usual, by asking me how I felt. As I replied, I looked at the printed page he had taken from the file in front of him. The scan report was about three-quarters of a page of writing. This was a bad sign.

He smiled. Your scan report is fine, he said. We gasped with relief. He gave me a copy. The report was long and detailed, comparing my recent scan to the one done in May. It concluded with the key words - ‘stable appearances’. I had now been clear of cancer for 3 years and one month. Despite the car problem, we could go home and sleep a little more easily.

Sunday, 10 November 2019

Mallorca Return

We are not long back from Mallorca. I’d never been there before, having been put off by its reputation for crowded holiday resorts. But late October is rather quiet, and you will encounter many more locals than tourists. And the weather is still good, with many days of clear blue skies and 25 degrees. Mallorca is a large island with a great variety of places and landscapes. True, there are still some big resorts, but we steered clear of them, staying in a small village in the southeast corner, about an hour’s drive from the airport.

Our rented house had a garden with a pine tree, a palm tree, a trellised walkway covered with pink flowers and a veranda. I opened the shutters each morning whilst T walked to the local shop to get our order of freshly-baked baguette and croissants. We then sat and scoffed them with greengage jam and coffee, with some papaya and melon on the side. It was a good way to start the day and entirely in keeping with the climate. At home, I would normally take porridge.

The village was built on cliffs. The houses seemed to be mainly retirement or holiday homes. The languages you most often heard were either Catalan (Mallorca is part of Catalonia) or German. Our house had satellite TV, but all the channels were German. When you walked about 100 yards to the end of our street you ended up amidst pine trees beyond which were sandy-coloured cliffs with the blue Mediterranean crashing about 100 feet below. Going the other way took you through the rest of the village and down to a wooded cove with a sheltered sandy beach that was great for swimming. The local markets were especially good. There were huge ones on each Saturday and Sunday in two nearby towns: Santanyi and Felanitx. We revelled in all the different foods there were to try, from the jujube (the odd-looking fruit of a tropical tree) to the amazing fruit and nut breads of the artisanal bakery.

I arrived in Mallorca still feeling groggy from the dose and coughing a good bit. But warmth and brightness are great healers, and by the end of the first week I was fine again. I’d brought my bike with me and I went on some great rides, whilst T sat and wrote or painted. Mallorca is set up for cycle-tourism as there is a network of back roads across the island that take you to every town avoiding traffic. You cycle between drystone walls, past small farms with sheep and goats, and orchards of fig, almond and olive trees to sleepy towns where the tallest building is the local church. On other days, I wrote as well, or just sat and thought.

We had remained here during the summer as T was studying and completing coursework. It was our delayed summer holiday and we are already looking forward to going back to Mallorca. But the return transition was very tough, for we came back to the leaden skies, cold and damp of winter. Leaving the airport, it was just one quarter of the temperature we had been in. What I noticed most of all was the dullness. Within a few days my solar powered watch had stopped. It was suffering from SAD too. And then I had to go for my cancer surveillance scan, something that would give anyone a chill.

Monday, 7 October 2019

Double Dose and Hallucinations: A Warning

Having spent the best part of the past two years without catching a dose, I’m just emerging from my second dose in four weeks. I realise that this is the time of year for doses, but to get two in such a short space of time is bad luck. At first I wondered if it was the same dose coming back, but I’m sure it wasn’t for two reasons: I was well for a week in-between the doses and the symptoms of the second one were quite different from the first. Ironically, I’ve just received an invitation from my GP to get the annual ‘flu jab next weekend.

I went down with my second dose just 24 hours after going into several opticians to try on different spectacles. Viruses remain alive for several hours on surfaces in warm rooms. I assume that other people who were infectious had visited the same optician earlier that day and left their legacy. Whilst the first dose was fairly mild but long lasting, the second was most virulent. I was laid low in bed and couldn’t move for several days with a severe throat and sinusitis. Then the chest infection kicked in.

I took the standard treatment: paracetamol and oral decongestant tablets along with nasal decongestant spray. But at night I found myself with insomnia and catastrophic imaginings. I saw terrible car crashes with me driving into huge lorries and then looking around to find my dearest T dead beside me. After several similar nights, I was completely exhausted but too anxious to relax and sleep. We checked the information leaflets on the decongestants. They both described possible side effects of insomnia, bad dreams and hallucinations. Beware, this decongestant tablet (Sudafed) is exactly the same drug that is included in Lem-Sip, but at a higher dose.

I stopped taking the decongestants and my night-time symptoms improved. I became able to rest and sleep. But lying down was bad for my sinuses, which without the decongestants were more bunged up. I began to inhale steam from a bowl of warm water and this helped clear my nose for a while. It also seemed to help move phlegm from my chest. As the week wore on, I sneezed down and coughed up surprising quantities of yellow-green mucus. Slowly the sinuses and lungs got clearer and I was able to sleep better at night as well as to take naps in the day.

But as I slowly improved, T went down with the dose too. She had the sinusitis thankfully without the chest infection. Instead of her tending me, the roles were reversed. She chose to avoid the decongestants and seemed to be making a quicker recovery than I was. Outside it was rainy and cool. I wrapped up to make an emergency dash to Tesco for more food. Autumn storms came and went. We both steadily improved. What we really needed was a warm weather holiday. It was a good job we had one already booked.

Sunday, 15 September 2019

The Mental Big Bad Wolf

For the past few weeks I’ve been feeling much more anxious and sleeping badly. I was waking in the small hours and obsessively turning over problems in my mind. But these were minor problems that had escalated in the night. I tried mindfulness relaxation and deep breathing exercises, they brought my heart-rate down but I still didn’t sleep. In the morning I would feel exhausted and chide myself for being so obsessed with such minor matters. And earlier this week I began to suffer from a cold as well. Yesterday I sat down with T (who is now a qualified therapist) and talked all this through. Last night I managed to sleep for six hours.  

Although T is newly qualified, after four years of study for a counselling degree, she possesses great emotional intelligence. She gently probed the concerns that I described to her and I ended up learning a great deal about what is troubling me. The relatively minor problems that were disturbing me at night were stand-ins for a bigger problem that was more difficult to expose and address.

The big problem was, of course, to do with cancer. But this time, it was not the fear of recurrence itself; although, that is always there. Especially when you’ve had a type of cancer that is known to recur up to 20 years after the initial tumour. The big problem was how to live well alongside the fear of recurrence and the pervasive sense of vulnerability that are your inevitable life companions when you are a cancer patient.

In the early days of cancer treatment you are like a soldier in the front-line. You are wounded, in pain and it feels that death could come easily at any moment. It seems to be quite arbitrary that you are still alive when others around you, family, friends, neighbours, have died.  As time goes on, you manage to move away from the front line; but despite it being out of sight, it is not out of mind. On the other side of the hill the grass is green and the sun is shining but you can still hear some explosions and know that you could be catapulted back into the horror of the front-line at a moment’s notice. How do I know? Because it has happened to me three times.

Living with this sort of PTSD seems to be the norm for cancer patients. My last return to the front-line was almost two years ago and after that I was walking wounded and on morphine for three months. Since then I have been steadily building up my strength. This has gone well and over the past few months I’ve been regularly cycling three or four times a week and have managed some long rides again. My longest ride has been 77 miles and I’ve regularly been cycling over 150 miles a week. Just two weeks ago, as described in my last post, I was discharged from the lung clinic with well above average lung health.

The source of the problem suddenly became clear. Alongside this rebuilding of my body I had also been creating expectations about the rebuilding of my mental health. That this physical rebuilding, which was intended to take me back to the level of physical health I had pre-cancer, would somehow be accompanied by a rebuilding of my mental health – enabling me to regain the sense of casual self-confidence and lack of vulnerability that I had pre-cancer. Despite my physical progress, I was still plagued by anxiety and fear. So, plainly, my mental health hadn't been able to be restored to where I was before. This loss and apparent failure left me feeling additionally disturbed.

However, such a return cannot happen. You can’t go back to who you were before you were catapulted into the front-line. You can only go on to be who you have become, having survived thus far. You can’t escape the PTSD, but you can learn to live well with it; with all the capabilities (endurance, patience and resilience, to name but a few) that you have gained.

It won’t be easy. But with a partner like T I know I will have healing love and huge support on the journey ahead. Thank you T for helping me to see the wood from the trees and to find where the wolf lay.

Friday, 30 August 2019

Thank You Dr Riley

The lung clinic at the City Hospital is always jammed with people, many are coughing and spluttering. It is beside the front entrance of the hospital, where you usually see patients in dressing gowns smoking fags with portable drips in their arms. Yesterday I went there for a review of my lung functioning with Dr Riley, my consultant.  At our previous review, a year earlier, no breathing tests had been done because I was still experiencing significant pain in my ribs after the major operation to repair my left diaphragm in September 2017. Indeed, this pain from damaged nerves had only recently eased. I was also hoping that the large mesh patch in my diaphragm was now secure enough for me to safely try the strenuous breathing tests.

I was taken to another room by a nurse who sat me next to a machine with a bellows and a large display screen. Coming out from the machine was an arm which held various tubes and ended in a mouthpiece. I would be doing two tests. In the first my lung capacity and flow would be tested. In the second my ability to transfer oxygen and carbon dioxide through my lungs into and out of my blood would be tested.

I sat forward in the chair, took hold of the mouthpiece and breathed normally. The rise and fall of my lungs made a wave pattern on the display screen. At her command, I took in a sharp, deep breath and immediately pushed it out as fast as I could and carried on exhaling hard. Keep going, she shouted, gazing at the display screen. I kept exhaling. Keep going, she shouted. I kept exhaling, even though I couldn’t feel any air coming out. Keep going, she shouted. I began to get a little lightheaded. That’s it, she shouted, and I let go of the mouthpiece and began to breathe normally.

Now we need to do it again, she said. I smiled, very pleased that I’d managed to do the test and that my ribs hadn’t felt sore. We’ll select the best of three attempts, she said. But take your time, we’ll only go again when you feel ready.  I took a minute and then repeated the test. Both my next attempts felt much the same as the first. Then we turned to the second test, which was done on the same machine but involved a different setup.

This time I took in a deep breath and held it for 8 seconds before breathing steadily out. On the inhale, the machine gave me a small dose of test gas (a mix of carbon monoxide and helium) which would mark the transfer of oxygen and carbon dioxide in the capillaries of my lungs. Despite the apparent complexity, this test was a good bit easier to do than the first. The only real challenge was to take in a large enough breath, it had to be at least 90% of your lung capacity for the test to be done accurately. It was again the best of three attempts.

I was given a printed report with two sets of figures on it and went back into the clinic. Dr Riley was very pleased. We don’t often see results like this, he said. My overall lung capacity had increased by 50%, measured against the tests I had done before the operation. I had some minor airway narrowing, due to having been a regular smoker from 14 to my mid-30’s, but this would not require any medication. My lung functioning was at 123%, measured against the average for my age, weight and height, while my oxygen and carbon dioxide transfer was entirely normal. I would now be discharged from the clinic.

I was, of course, delighted. Then I confessed to him that last year I had stopped using the inhalers I’d been given because I didn’t feel they were doing me any good. Dr Riley smiled knowingly. I thanked him for all his help and advice over the past six years. This was no lip service, I genuinely had a great deal to thank him for. It was he who had advised me to take the surgical option as a last resort, because it could only be known if a repair of my diaphragm was possible after I was opened up. Furthermore, it was his prompt action of sending me for a urgent scan after I complained of a pain in my abdomen whilst he was examining me in 2015 that resulted in a large, malignant tumour being found which required emergency surgery.

Thank you again, Dr Riley. Despite the pressures of the NHS, you are doing a fantastic job.

Saturday, 10 August 2019

Cyclists' Secrets

After several weeks of inactivity, I got the call to see the eye consultant for a review of my recent operation. He told me that the three retinal tears had been repaired successfully. I asked him if my blurred vision would reduce. He said it might. He told me that my still bloodshot eye should clear. He also said I could fully resume normal activities. I was itching to go cycling again. So I thought this was a perfect opportunity to offer a little inside information about my favourite outdoor pursuit.

What do cyclists carry? For me the joy of cycling is the sense of freedom and independence. You can go where the spirit and the road or path takes you. But you definitely need something to drink. In my water-bottle I have a home-made electrolyte drink, dilute coconut water with a pinch of salt. It is refreshing and tasty, so much better than the industrial flavoured offerings you can buy. You also need some essentials to enable you to keep on going if you don’t find a cafe or a shop when you are hungry or to get you home if something goes wrong. You don’t need to be skilled in bike maintenance, but you do need to be able to change an inner tube if you get a puncture. I have a seat-pack that fixes under the saddle and holds my food essentials, rain jacket (usually wise to include in this country), spare inner tubes, mini-pump, tyre levers and a small multi-tool.

What do cyclists eat? The short answer is plenty. On a steady cycle ride, at 12mph, I burn about 700 calories an hour. So I stop and eat regularly, at least every couple of hours. I prefer real food, such as peanut bars, oat bars, bananas and malt loaf. On longer rides I also take fruit and nut mix and some cubes of cheese. Some cyclists only eat carbohydrate gels, which come in small sachets to be consumed as you ride. I think they taste disgusting. And a ride is not a race. Surely the point is to enjoy the environment you are travelling through, by stopping every now and then for a wee rest and something to eat.

The best place to stop is a good cafe. My favourite is Petty Sessions in Poyntzpass, Co Armagh, where Helena and Peter provide excellent fare, particularly the home-baked fruit pies made by Mrs Copeland. My next favourite is The Bookshop Cafe in Kells, Co Meath, where you can get excellent meals and home-baking whilst reading something from the hundreds of second-hand titles they have on display. Before a long ride in a new place I check Trip Advisor to see if there are any cafes en route. In the sparsely populated parts of rural Ireland cafes and shops can be few and far between. Several times I’ve found that the listed cafe had closed, so I always take some spare food with me.

What do cyclists wear? When you are travelling through the air at 12mph you are always going to be cooler than standing still. And usually there is a wind blowing against you, so you can be a good bit cooler. I normally wear a merino wool vest, a fabric that keeps you both warm and cool, and a windproof top (short-sleeved in summer, long-sleeved otherwise). What about underwear? A long day in the saddle will give you a sore bum. I wear padded undershorts and put on Vaseline before every ride. To help the bum recover I put on Sudocrem when I get home. Now you know why cyclists’ bums are as smooth as a baby’s!

Monday, 22 July 2019

Sugar Anniversary

T and I met six years ago today. We were both taking part in the John Hewitt Summer School. Instead of attending the scheduled literary events, we spent the afternoon talking over coffee in the square. And the rest, as they say, is history. This chance encounter made such a huge difference in my life.

Our journey from then to now has had to face some significant challenges. For me, it was two cancer recurrences and three big operations. For T, it was the protracted divorce proceedings from a bad marriage. But we overcame them together, each of us supporting the other through the difficult times. We drew upon a deep well of love and care. You can cope with pretty much anything when there is someone you trust completely by your side, holding your hand. And each challenge surmounted has served to intensify and strengthen our bonds.

We have been living together for four years now. We are quite different in many ways and very similar in many others. There is real richness and great depth to our compatibility. And our relationship is getting better as we learn more about each other. We are maturing together.

An anniversary of six years is called the sugar anniversary. That is very appropriate. Our relationship has all the richness of dark muscovado and we stick together like treacle. T is so ever-present in my life that I cannot now imagine a time without her. Thank you again for the past six and may there be many more years, dearest T.