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.

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.

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.

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!

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.

Retinal Tears

I’m writing this with wonky vision due to having a patch over one eye. Yesterday I had an operation on my left eye to repair three tears in the retina. The problem began seven weeks ago when a branch whacked me in the face as I was mowing the lawn. I went to my optician with black floaters and blurred vision. He sent me to the Eye Hospital in Belfast, where a junior doctor said he could find no damage to my retina and sent me home. I was called to a follow-up appointment with the consultant earlier this week. Mr Chan examined me and found a tear in my retina which needed an urgent repair.

T drove me to the Eye Hospital first thing on Friday morning. The nurses went through the normal admissions procedure, even though I was a patient for a day procedure. In the room were two other patients, both in wheelchairs; due to diabetes they had more serious eye problems and would be taken first. After getting me to sign the consent form, which (as usual) contained a long list of potential problems, a junior doctor drew a purple arrow on my left forehead.

I was dilated with eye drops and we sat for a couple of hours until a nurse arrived to escort me upstairs. I declined the wheelchair she proffered and she pushed it along carrying just my thick purple folder of medical notes. I’d refused the chair because I had bad memories of being wheeled in to my four previous major operations. We took the lift to the top floor and entered the anaesthetist’s room. My heart sank, it was just the same as in each of my previous operations. He got me to lie on the table and put supports under my neck and both ankles. He then fixed a clip around my left eye to hold my lids open and squirted in local anaesthetic. It stung a little, but not too badly. I breathed a sigh a relief. But the next step was worse. He took a syringe and injected anaesthetic into either side of my eye. ‘It’s just like being at the dentist,’ he joked. I felt the pressure of the needle going in, but no pain. I lay there, trying hard to be calm, and felt my face and left nostril freezing up.

I was wheeled in to the operating theatre. The bright lights dazzled. Someone put a sticky apron over my face. It had an open patch over my left eye, but all I could see was starred lights. I could hear people talking in low voices. Then a man wearing a headset with two beaming lights came into view. He placed a lens above my eye and looked down. I heard more muttering and then Mr Chan spoke. ‘There are three tears in your retina, I’m going to fix them now.’ I felt some pressure on either side of my eye for a while. Then he spoke again.‘That’s it, done.’

A patch was stuck over my left eye and a nurse helped me off the table and into the wheelchair. Mr Chan was filling in the surgeons report for my file. He explained that it was difficult to examine the back of the eye fully in outpatients as it would be too painful. But under anaesthetic he could examine my retina thoroughly. He told me that the three tears were in different parts of my retina. He also explained that he had chosen cryoplexy (sealing the tears by freezing with an extremely cold probe) because of where the tears were located. I might see some white spots at the edge of my vision after this surgery or I might not. I thanked him. It didn't seem a big price to pay, I’d had white spots in my peripheral vision since the episode with the tree branch.

A nurse came and wheeled me back down to the day procedure room. My eye was a little sore, but it was nothing like the after effects of my previous big operations. I was given tomato soup; it was very good and tasted like it had been made from fresh tomatoes. A threat to your vision is very scary. Yet another brush with my own mortality again emphasised the everyday pleasures of life

I was told to keep the eye patch on for 24 hours then put in antibiotic eye drops four times a day. I was also told to take it easy for the next week; no bending, lifting or running in particular. My left is my dominant eye, so with the patch my vision was blurred and somewhat wonky. It was hard to judge distances, you need both eyes for that. T held my arm and escorted me down to the car park. I was very glad of her unwavering support, not just today but for the past six years. In the car I felt my eye getting sorer; I was looking forward to getting home and having a nap.

Retirement

I’ve recently retired. Not from my day-job, I left that some years ago. I’ve retired from the Board of Concern Worldwide, a great organisation that has been helping the poorest of the poor for fifty years. I was elected to the Board in 2005. It was the year of the Boxing Day Tsunami, the horrifying consequences of which I saw at first-hand in Sri Lanka.

I enjoyed my time as a Director and Trustee. I certainly learned a huge amount. And I met colleagues who I now call friends. I’m proud to have been part of such a well run charity, which spends 90% of every penny it gets on helping the poor in 25 countries worldwide. By law, each charity has to report annually how much they spend under different headings. When you check this out, you’ll find that most spend much more than Concern do on fundraising and administration.

With two long-serving Directors retiring, there was a ceremony in Dublin. The Chairman of the Board, John Treacy, characterised my contribution to the Board as ‘asking searching questions’ and ‘opening up necessary but difficult issues’. I’m very pleased to have achieved that, as effective scrutiny is the cornerstone of good governance.

The past 14 years haven’t been easy for any of us, Concern included. It is a complex organisation with 3000 employees across 25 countries on three different continents. There have been plenty of challenges, but through them Concern has always learned and developed, becoming more focused, more capable and more resilient.

I’ve of course had my own challenges over these years. None greater than 8 years ago discovering I had a large tumour which required open–heart surgery to remove. Despite a poor prognosis, two recurrences and three major operations, I’m now almost three years clear of cancer. Throughout this enormous ordeal I received great support and encouragement from both the Board and Management of Concern. I will never forget their care and concern.

It’s strange. I’ve had 14 years of having to get up at the crack of dawn on a Saturday morning to drive down to Dublin for Board meetings. I didn’t expect to be sad at not having to do this anymore. But I am.

After the presentations, I left them with a gift – a poem. It was inspired by Concern’s reports from Bangladesh and a news video I saw. The poem is called Breakfast in Kutupalong. Kutupalong is a temporary camp with a million Rohingya refugees. It is by far the largest refugee camp in the world. The poem is dedicated to colleagues at Concern Worldwide.

I’m sorry that I can’t, at present, post the poem here, as it is being considered for publication, But I have been invited back to Dublin next month to record Breakfast in Kutupalong for the new Concern website.