Sunday, 31 January 2016

Old Pals

Phil and I became friends at school. We’ve been in close touch for over fifty years. After my first wife died in an accident I stayed with him and his wife Jean for several months until I could bear to go back to the house that we had just bought. I became the first visitor to the maternity ward after the birth of their son. And I helped Phil and son Nathan carry her coffin after Jean died of cancer almost three years ago.

Phil came over from England to stay with me this past week. He is a ranger in a National Park so we did plenty of walking and wildlife spotting. We walked around Castlewellan Lake and saw plenty of Little Grebe diving for food. At Corbet Lough we saw over forty yellow-billed Whooper Swans that had migrated here from the Arctic. Beyond the old harbour at Newcastle we saw six Black-throated Divers that had also migrated here from the frozen North. And strangely enough Phil was delighted to see plenty of our local Hooded Crows, a bird that is scarce in his part of England.

Phil is also very handy at DIY and helped me to change the dripping mixer tap in the kitchen, a job I wouldn’t have felt capable of doing on my own. He hacksawed off the old pipework, removed the old tap, attached two flexible links with compression joints to the new one and the job was done inside an hour. My role was that of the apprentice: handing him tools, shining the torch, filing the ends of the pipes and making the tea.

I also did all of the driving: picking Phil up at the City Airport, taking him around Co Down and delivering him back. It was the first time I had driven as far as Belfast. I managed it fine. Although I must admit I felt pretty tired after he had gone and slept for ten hours for several nights. Being so active every day was probably overdoing it a bit.
T has now returned from her own house, having gone back there to do some sorting out (amongst other things, the Xmas decorations were still up). We are back to our normal routines of eating, walking, worrying and sleeping. The appointment for the first of my scans, the bone scan, is coming up and my apprehension is rising.
On the positive side, I have been out of hospital for five weeks now. I’m eating regular meals and plenty of snacks too. I’ve been gaining about a kilo a week and have just returned to the weight I was before surgery. However, if I carried on at this rate of increase for a couple of months I would have a problem. I can complete an hour’s good walk without getting tired and do this most days. I continue to have pain in my belly, although this is diminishing, but I still need to take regular paracetamol. Overall, I imagine this is reasonable progress given what I have been through.

Tuesday, 19 January 2016

The Oncologist

It is five weeks since my surgery and a little over three weeks that I’ve been home, under the care of T. In many ways my progress has been good. I walk every day. Ten minutes was the most I could manage three weeks ago. Now I am able to go out walking for an hour, as long as I’m wrapped up well. The disturbances in my guts have largely settled and I can now eat reasonably normally. The pain of my belly wound diminishes slowly. It does intensify over each day and I require regular doses of paracetamol.

T is looking after me very well. She makes a healthy soup for lunch-time and a nourishing meal in the evening. I’ve also been sampling plenty of Xmas goodies and have put on around six pounds of the ten I lost whilst in hospital. At first I couldn’t get through the day without a nap in the afternoon. Now I do last through, but I usually conk out by 10pm. I’m managing to sleep fairly well, with very strange dreams, although I do take a sleeping pill.

T and I have just had our first meeting with the oncologist. They are a dour lot, who don’t pull any punches. We learnt that my tumour was six centimetres in diameter and weighed ninety four grammes. We learnt that it was graded three out of four on the aggressiveness scale. We learnt that the tumour was surrounded by a thin covering of fatty tissue, apart from at the surgical line of excision where three millimetres of tumour were exposed. We learnt that I would be given a CT scan and a bone scan in four weeks time, when my system had settled down after the surgery. We learnt that the oncologist expected me to need chemotherapy, as some sort of recurrence, most likely at the line of excision, was likely.

This prognosis has been hard to bear, particularly after the long, tough journey we had already taken. Whilst some sort of recurrence is thought to be likely, it is not yet a fact.  As far as I know, I am clear apart from three millimetres of cancer cells which have become exposed to my own immune system. I believe I’m recovering well and becoming a bit better each day. However, it is difficult not to feel each twinge in the right side of my abdomen as a symptom of tumour regrowth.

T has found it particularly hard. She has been signed off work for a month due to emotional exhaustion and stays in bed longer than I do in the mornings. We have our little routines and take things one day at a time. We limp along quietly, helping each other get by. It’s not easy. We try to do our best. And keep the faith.

Monday, 4 January 2016


On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.

And when your eyes
freeze behind
the grey window
and the ghost of loss
gets into you,
may a flock of colours,
indigo, red, green
and azure blue,
come to awaken in you
a meadow of delight.

When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.

May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.

And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.

John O'Donohue

Friday, 1 January 2016

Merry Christmas and Happy New Year

Thank you very much for all your care and concern. It's great to be back home and to read your many messages of support. Thankfully, I'm continuing to improve and feel I'm getting a bit better every day. I'm going for wee walks, eating meals and plenty of Christmas goodies but I don't seem to be putting on weight yet. I lost around ten pounds in hospital, the 'eat nothing for weeks' diet does work but is not really to be recommended.

T and I postponed our Christmas to when I felt ready to celebrate it.. Yesterday became both Christmas and New Years Eve; today is both Christmas and New Years Day. We followed the German tradition and had our Christmas dinner and opened our presents last night. We began the festivities by lighting special German Christmas candles on the tree at sunset. It's been lovely.

I fell asleep around 11pm and that was a good way to see the old year out. It would be great for me if 2016 is more uneventful. And in particular, let's hope that renal cell carcinoma won't be darkening my door again.

Wishing you and yours a very Happy New Year. 

May 2016 bring you what you are hoping for.


Paul xxx

Monday, 28 December 2015

Nil by Mouth

My Xmas holiday in Belfast didn’t quite work out as planned. Like many journeys the beginning seemed to go as expected. After a light breakfast at 7.30am I had come in to Belfast City Hospital on Tuesday Dec 15th and was registered at the Day of Surgery Unit. Mine was to be the final procedure in theatre that day. I got into the gown and lay on the bed, holding hands with T.  After an anxious age the porters were there and I was being wheeled along the corridor on the bed, fluorescent lights blinking past my eyes.  T followed me to the theatre door. We blew kisses. Then she was gone.

The consent form had a long list of possible problems, but I signed it. Then I was moved onto a narrow surgical bed with ankle rests, banks of bright lights overhead and a group of people in theatre scrubs talking jocularly in the corner. The anaesthetist introduced himself, put an injection into my spine and then settled me back with a mask over my face. ‘It’s now 3.20’, was the last thing I heard him say. Then I was in the Recovery Room, mask still over my face.

‘Hello Paul, are you in pain?’ Yesssss: fire burning in the centre of my guts. She gave me a shot of morphine. Do you need more?  Yes, oh yes! She gave me another. The fire continued to burn. I pleaded for more. ‘I can’t’ she said, ‘you’ve had the maximum dose’ and went to get the anaesthetist. He asked me about the pain and then gave me some ketamine, saying ‘this might make you feel a bit disorientated.’ The room spun but the fire receded. They told me it was 5.30pm.

A couple of hours later I was wheeled into Ward 3 South. I asked a nurse to get my phone. I rang T. Soon she was beside me and we embraced. I asked a nurse for a drink of water, she brought me a glass filled with small ice cubes to suck on. This was all I was allowed. A foot-long wound sliced down my belly, looping around my belly button. And a catheter had been fitted. I was very sore front and back and extremely bloated. A saline drip was hooked up above, with paracetamol and antibiotics pumped in through the cannula on my arm. After T left I tried to sleep, but I felt so disorientated that all I could do was doze and even this was interrupted by checks of blood pressure, pulse and temperature (‘the obs’) every hour. I woke up to the recognition that I was installed in the same bed-space that I had been placed in during my last incarceration in the ward. No wonder I had been so afraid of T leaving me last night.

At the ward round on the first day (Weds) I was told by my surgeon that they had a problem with the incision into my abdomen. My small intestine was very compacted with adhesions from my major surgery in 2011 and when removing these they had caused a small tear in the bowel which had to be stitched. The good news was that the tumour appeared to be fully encapsulated in healthy cells (its disguise), was only attached to the abdominal wall and was easy to remove. He thought I was likely to be in hospital for up to a week.

I remained in bed all day on drips and munching on little ice-cubes. In the evening I was helped by T to get out of the bed and sit in the chair. It was a painful struggle to get one step from the bed. And just trying to sit still for half an hour took all of my strength as staying upright seemed to use all my very sore abdominal muscles.

I soon got used to the regular patterns of ward life (wake-up, bed-making, obs, breakfast, ward round, drug trolley, obs, dinner, drug trolley, obs, visitors, tea, obs, visitors, drug trolley, bedtime) that I remembered from my previous time in the ward in 2011. As the days went on I found I remembered many of the nurses from before; indeed, several recognised me as a returning customer.

On the Thursday I managed an unsteady little walk, aided by T who kept tight hold of my arm. I still felt very sore and bloated. I was allowed fluids and drank water and Ribena but suffered also from belching, hiccups and waves of nausea. I still felt very disorientated and found it hard to concentrate or read. Friday was similar, but I managed to get out of bed by myself and walk down the corridor on my own.  I began to cough up some phlegm and did so regularly thereafter.

On the Saturday the catheter was removed and I was told I was allowed to try solid foods. I tried an inch of vegetable soup in the bottom of a bowl. My guts felt compacted and completely bloated. It was hard to get even a tiny bit of soup down. Afterwards my belching and hiccups increased then I vomited. Despite being given anti-sickness medication, I vomited five times during the rest of the day, my temperature spiking up too. They sent me for an X Ray, the report said that there was no obvious obstruction to the bowel.

On the Sunday I was put back on fluids only but there was more vomiting with fever spikes, followed by dry retching. Exacerbated by my abdominal wound, this was very painful and distressing. But the worst was still to come. Overnight I had four hours of hiccupping. Once or twice might be amusing, but when it goes on and on and on without any break the experience is deeply purgatorial. The nursing staff could give me no relief. I rang T at 2am howling with anguish.

On the Monday, despite my protestations, the team decided to continue with the same treatment as the day before. My fever increased, as did my nausea and distress. I spent much of the day lying on my bed in a sort of hallucinatory dozing. Strange faces appeared to me, looming in front of my eyes, along with the routine sounds from the room. The nurses seemed to be avoiding me. The consultant said he would come back to see me but didn’t arrive. I spent the evening dry retching and then the hiccups started again. This time they went on for seven hours. I moaned and groaned throughout in complete despair. I pleaded for help from doctors and nurses but they said there was nothing they could do for me. At 4am in complete desperation I called out to God for help. Within a minute the hiccups had stopped.

I lay panting with exhaustion. The nurse checked my temperature, it was nearly 39 degrees. She brought me a fan to try and cool me down and began to administer intravenous antibiotics. I dozed for a couple of hours and woke on Tuesday morning feeling lucid for the first time since the operation. At the ward round they decided to send me for an urgent CT scan, suspecting some infection in my abdomen. As usual I was asked to drink a litre of heavy water beforehand. I thought I would be unable to manage it without vomiting, but strangely enough I managed to drink about half of it and keep it down.

I was taken down in a wheelchair by a porter for the scan. As I was wheeled back into the ward a doctor was waiting for me. She pulled the curtain around and told me to get up onto the bed. You have a collapsed left lung and a chest infection she said, caused by the bloating of your stomach. I need to put this NG tube down into your stomach to relieve the pressure. She produced a long coil of plastic tubing with a valve at the one end and began to spread anaesthetic gel on the other end. Then she got me to sit up and put my head back. She threaded the end of the tube up my nose and down the back of my throat. I began to gag and retch but, with some words of encouragement, she kept pushing the tube right down until I could feel the end almost under my ribs. She then got a large syringe and attached it to the other end of the tube and began to pull out the contents of my stomach. At first little appeared, then, with a gurgle, a flush of greenish fluid appeared in the tube. I gasped. Bile, she said, the liver produces it at a constant rate, so we need to drain it. She finished up by taping the tube going into my nose and around the back of my ear. Now you’re Nil by Mouth again she said. I sat on the bed confused, I told her that I had been much worse overnight and the day before.

I also need to take some arterial blood, she said, producing a small hypodermic. It’s an accurate measure of blood oxygen levels, but it can hurt a little. She grasped my wrist and felt for my pulse. Then she dug the needle in deep. At first nothing came, so she hoked around until blood spurted up into the barrel of the syringe. Finally, a nurse came in and fitted a small clear bag to the end of the stomach pipe. She put up a drip again and left me with a cup of ice with a plastic teaspoon in it.

In the next couple of hours I was visited by three concerned specialists. First, the head of the Intensive Care Unit came, who was assessing me for being transferred there. I told her I would gladly have gone to the ICU yesterday but I felt I was improving today. She agreed. Second, two general surgeons came who were assessing me as to whether I needed emergency surgery to save a major organ from failure, they were worried about my collapsed lung and the possibility that my constricted stomach might lose some blood supply. After some discussion between them they turned to me and said, well we’re not going to operate tonight. I gasped with relief. They seemed a little disappointed and strode away saying they would be monitoring my bloods carefully.

I felt exhausted and rested for much of the day on the bed, taking some small walks with T up and down the corridor. I noticed that people seemed to avoid eye contact. Then I caught sight of myself. I looked like an alien: a tube emerging from one nostril, looping across one side of my face, behind one ear and then down my neck into a clear bag with greenish liquid at the bottom. I was glad that my problem was now being taken seriously. My condition had been much much worse and the ward staff had not acted on it soon enough.

On the Wednesday morning I was visited by a specialist from Respiratory Medicine. He told me that he had looked at my scans from before and after surgery and concluded that my diaphragmatic hernia had not got worse. He thought that the collapse of the lung was caused by surgical gas distending the stomach into the lung cavity like a balloon. This meant that the problem would go away as the gas dissipated and would also improve as my bowels moved. I had been bunged up now for eight solid days. This was normal after abdominal surgery and was called ileus, bowel movements usually began again naturally. He encouraged me to walk more and do more breathing exercises, which would be good for both my lung and bowels. He told me that my blood oxygen levels were now normal.

I went out of the ward and down in the lift to the ground floor, I walked to the front entrance around the foyer and up the steps to the Cancer Centre, and then returned to the ward. The alien carrying a bag with green stuff in it got plenty of strange looks from strangers who rapidly glanced away as soon as my baleful eye was upon them. During the rest of the day, I did this three times. Each time I got farts but nothing more. There seemed to be a log stuck in my back passage that would not move.

On the Thursday morning I was given an enema. I walked up and down the corridor but did not stray far from the toilet. A wise move as I was soon in there straining away at the log, which put up strong resistance but eventually emerged.  Next the bag was taken off the end of my nose tube and sealed. This made walking around much easier. I was also told I could sip fluids and try some light food. After nine days without eating this was great news. At first I had felt so rough that I wasn’t hungry, and then I felt very nauseous so food smelt unpleasant. So not eating anything had become normal. And now I was very weak.

I first tried a strawberry yoghourt. It tasted good. I ate half of the small pot then stopped, it was a lot to get down. After about five minutes I ate the rest. It was a strange feeling to have food in my gut again. I decided to wait and see how it went before I tried some more.

A porter took me for a chest X-ray and when I got back I had tea and toast. I went on my regular walkabout a few times. Later I tried some chocolate. T arrived with a big bag of Xmas decorations. My bed soon becomes Santa’s Grotto: red lights across the back, tinsel across the top and sides, flickering candles, and a large red stocking. He certainly shouldn’t be able to miss me this year.

For tea I had scrambled egg on toast, then another yoghurt. It was Christmas Eve, a nursing auxiliary came in wearing a Darth Vader cape and a Rudolph the Red-Nosed Reindeer headdress. T and I went to the small hospital church three floors down for a candlelit service. The alien was one of only four patients in the packed room. We sang carols and took communion.

I never expected to be spending Xmas Day in hospital. But you never know how things can turn out. I woke up in the morning in Santa’s Grotto. The normal routines were happening around me. For the hospital it was just another day. My chest felt clear for the first time. I put my hand into my red stocking and pulled out sweets and lovely card from T. She’s been so very loving and thoughtful every day. I don’t know what I would have done without her. And thankfully I don’t need to find out.

My second Xmas present was the NG tube out. It was great not to have it irritating your nose and the back of your throat. My third Xmas present was to be told that the X-ray showed that my lung had reinflated. Then a porter dressed as Santa walked the ward ringing a bell and shouting: Merry Christmas.

The first meal I ate was the hospital Xmas dinner. We pulled crackers and I placed the party hat on my head. I managed some white meat, mashed spud and carrots, but felt pretty full after. I went for my normal walkabout and was very pleased to then have a natural bowel movement (my fourth Xmas present). T arrived and stayed the afternoon and evening. We spend it eating treats, watching TV in the ward day room and going walkabout in the empty hospital.

But my best present of all was being told on Boxing Day that I could go home. All in-patient treatment had been completed. All my bodily systems were fully functioning. And what I needed most of all was to recuperate. Hospital was not the right place to undertake that. It was an environment that was bright and noisy by day and by night, a place where your rest would always be interrupted.

I was given a bag with five days of oral antibiotics and three weeks of blood thinning injections to administer myself. Then T came and helped to dismantle Santa’s Grotto. We decided we would postpone our Xmas to New Year. I couldn’t wait to get back home. I’d spent my twelve days of Xmas in hospital, nine without any food and three of these nil by mouth. It was certainly an Xmas experience to remember. 

Monday, 14 December 2015

Keeping the Faith

Thank you all very much for your friendship, support and good wishes. I shall carry these with me.
I go into Belfast City Hospital tomorrow morning. Surgery is scheduled for the afternoon. I expect to be in Ward 3 South afterwards.
I will be back in touch as soon as I can.
Paul xxx

Friday, 11 December 2015

Keep the Faith

I have some bad news. My cancer has returned. After four and a half years of being all clear I thought I had escaped. But apparently the type of renal cancer I had can produce localised recurrences many years later. The lump in my abdomen was discovered seven weeks ago and I am scheduled to have surgery next week. My specialist told me that, despite a poor prognosis, I had done extremely well against this cancer the first time round. And there was no reason to believe I would not do so again.

I hope to be out of hospital and back home for Xmas to recuperate with T.

Keep the faith.

Paul xxx