Some thoughts after my experiences in 2017

1)     Diagnosis of cancer is not an immediate death sentence. The developments in treatment in the last few decades have been phenomenal.

2)     Chemotherapy is unpleasant but manageable. Perhaps I was lucky in that my side effects were limited.

3)     Making yourself stay active during chemo and after surgery is an essential part of recovery. Get back to doing normal activities as soon as you can. It helps recovery.

4)     The NHS is an incredible service. Almost without exception, the nurses and surgeons who looked after me were totally dedicated, skilled, and went beyond the call of duty. There are still many selfless and caring people in the community. Despite the brilliance of the NHS and the people who work in it, it is clear to me from my experience of the last year, that it is grossly underfunded. Staff are overworked, waiting times are longer than in most developed countries, and the state of the infrastructure and buildings is being neglected.

5)     Having a stoma is not as bad I had thought. It can be inconvenient having to empty it 4 or 5 times a day, but it really doesn’t impair normal living. After a few weeks you forget that you have it, and so far, nobody has noticed the bulge.  I had one accident when it came loose, but luckily I was in the garden at the time. I find it easiest to kneel down to empty it. Something that no one else has suggested.

6)     Because of underfunding, conditions in hospital wards leave much to be desired. On both occasions during my stays, I shared a ward with people who were in desperate need of greater privacy. They put excessive pressure on already overworked staff, causing stress to other patients.

7)     There is waste in the NHS. Over prescription of drugs and refusal to take back unused ones is just one example. I could catalogue many more.

8)     There is an insistence by some folks today that people should pursue their own self-interest and question every decision. “Ask to see a second consultant” is advice you often hear. My experience had been that the staff invariably seek the best outcomes for you. They are the experts and are best suited to weigh up the odds of different treatments. In many cases, a second opinion will waste time and resources unnecessarily.

9)     Use the internet with care. I found many of the legitimate chat rooms are really helpful, especially soon after diagnosis. To share experiences with people in a similar situation, is both educational and reassuring. That said, there is a lot of misinformation and commercial rubbish out there too. I found that sticking to NHS, Bowel cancer UK, and similar known websites was the answer.

10   The importance of family and friends became more apparent to me as the year went on.  Regular walks with our local friends, and the phone calls and reunions with my Uni and schoolfriends were a real mood lifter throughout the year. My two children, four grandkids and my sister and her family have all been fantastic support. My youngest, 7 year old

grandson would greet me with comments like “Has your cancer gone yet, Grandad?” or “Do you still have to wear you bag, grandad?” Just great to hear.

Mostly though, it has been the support of Masha, my wife, that has kept me going. She has been there for me at every occasion: from accompanying me to my endless appointments, looking after me at home through all my moods, irrationalities and grumpiness, to even changing my stoma bag. Nobody could have done more, and I cannot thank her enough. I only hope that had our situations been reversed, I would have been as supportive. I’m not sure.

And so on to 2018. I have 2 scans booked for late January, and have to see the oncologist in February. The main thing is that I am still here, and I hope to still be around to update the blog for 2018 at the end of the year.

Recovery from liver surgery and chemotherapy 2

Two weeks after the surgery, we returned to Southampton to see Mr Armstrong for a follow-up appointment. He explained the details of the operation and hoped that he had been able to remove all the cancerous cells. He then examined the remaining drain, but decided to leave it in place as some bile was still leaking from the liver. That was bad news because the drain was becoming quite uncomfortable. I mentioned that in a couple of weeks I was going to a reunion and asked if I would be able to have a couple of drinks by then. His reply was that by then I could return to “normal drinking” I guess it depends on what he meant by Normal! The good news was that within a few more weeks my liver should have regenerated to near normal. I felt like Dr Who.

When we got home, Masha worked on the drain in my side, reducing the length slightly, and turning it so that it could drain properly. She also unblocked it and although the flow increased for a couple of days it then slowed to a trickle. I became much more comfortable, but it was still a drag and I couldn’t wait for it to be removed.

Two weeks later I had an appointment to see the oncologist Dr Harle at Poole. She seemed pleased with my progress, but recommended that I started a further 4 sessions of chemotherapy as soon as possible. Because of my previous reaction to taking Oxiplatin, she decided that this time I would only take the Capecitabine tablets, but that she would increase the dose to 4600 mm a day. Afterwards, Caroline the cancer nurse examined the drain in my side, and eventually after several indecisive opinions from others, decided to remove it. What a relief, and what a great nurse Caroline is.

At the end of that week we spent a couple of nights at Ross on Wye for a reunion with my old school friends. Although we only stayed for a short time and I couldn’t complete the longer walks, it was great to be there and to rekindle old friendships. We also spent a night at Hereford, and visited the cathedral and the Mappa-Mundi.

A week later I restarted chemotherapy. As before, I attended Wareham hospital where they checked me over and handed out the capecitabine tablets. I was to take 12 a day, 6 in the morning and six in the evening. Nicky, the head nurse agreed that I could take an extra week off after the first of four sessions so that we could take a holiday in Tenerife. So, in mid-October we flew to Tenerife and spent a very welcome week relaxing in Los Christianos. We did some walking and I even managed a few swims in the sea. The first since my diagnosis.

A few days after we returned, I started on the second session of chemo. Although I was only on the one drug this time, the dose was high, but despite that I felt reasonably OK and prided myself on being able to cope with the treatment.

They say, “Pride comes before a fall,” and in my case that was true, because as I began the third session I started to feel some of the side effects that were predicted for the drug. I felt tired and looked washed out. I began to get small cuts on my fingers and toes and my arthritic pains were worse than ever. At the end of the first week, I went to the podiatrist who poked around my big toe to try and improve an ingrowing toenail. She kept saying that she wasn’t sure she should be doing it as I was on chemotherapy. She was proved right because within a few days the toe became infected and in pain. On top of that I developed a really bad cold which seemed to come back for the third time

Consequently, I arranged to see Dr Harle the oncologist a few days before I was due to start the fourth round of Chemo. As soon as she saw me she said that she would cancel any further chemo and prescribed antibiotics for my fingers and toes. She said that I had done well to get as far as I had, and that the chemo should have had its effect by then. Looking at the comments on the internet, it does seem that 4600 m of capecitabine a day was quite a high dose.

Whatever, it was a huge relief to be taken off and to have a few weeks to recover before Christmas. 2017 was almost over, and by the end of the year I was beginning to recover and to feel more like my old self. Some effects from the chemo lingered, but 2018 began with me feeling better than I had a year before. AND, I was still alive.

Liver resection surgery

Several weeks passed and nothing happened. I was beginning to think I had been forgotten when Georgia, the cancer nurse from Poole phoned to ask what was happening. When I told her that I’d heard nothing, she seemed concerned, and said she would follow it up. True to her word, I received a letter from Southampton to say the operation would take place on Mon 22 August, just 10 days away. I felt a combination of relief and apprehension.

The following Wednesday we went to Southampton for the pre-operative tests. Sadly, before we left I received a text message from my friend Steve in which he implied that his death was near and wishing me well for my operation. It was a really moving message, in which he thanked me for 40 years of friendship, and for sharing our experiences during the previous 6 months. I was deeply moved. All went well with the tests, but when we got home, Steve’s son Robert phoned to say that his dad had died that morning. That was a real blow for Masha and me even though we had expected it. Steve and his family had been our close friends since moving to Wareham in 1976.

The previous day I had received an appointment for a PET scan which I attended the day after the Southampton visit. It involved taking a small dose of radio active material, followed by a full body scan. The radiologist told me afterwards that each scan cost over £1000. I wonder what I am costing the NHS. I am just thankful for its existence.

We had only just arrived home from the scan, when the hospital rang to say that there were shadows on my lungs, and asking me back in the afternoon for a further CT scan. It was not the happiest of afternoons for Masha and me, but when we arrived home the hospital rang a second time to say that all was clear. A false alarm, but a bit of a worrying one.

The surgery was due on the following Monday, but on the Friday Southampton hospital rang to say that the operation had been postponed because they were unable to get an anaesthetist. I was disappointed, but later in the afternoon the phoned back to say that it would go ahead on the Thursday. Only a 3 day delay.

On the Monday I began the pre-surgery diet; no alcohol and restricted food intake. On the Tuesday we went to the theatre in Bournemouth to see “Dirty dancing” to take my mind off what was coming up. Unfortunately, the storyline was not to my liking and the production was hopeless. I couldn’t even dull the pain with a few pints!

The next day I was due to report to the hospital at 3pm. We stopped on the way at a Golf-course for lunch, and the prospect of another fairly major operation, did make me feel a bit low. One of the most common symptoms of cancer is depression, but luckily I hadn’t really felt down apart from the first couple of days after the initial diagnosis. That Wednesday was the nearest I got.

When we arrived, I was put into a pre-surgery ward, but soon after Masha left, I was told that they were short-staffed’ and I was moved to the post operation cancer ward. I never understood why they called me in the day before the operation, but that sleepless night in a ward filled with moans and groans and with the prospect of surgery the next day, meant that the night was almost as bad as the one before the first operation. To cap it all, I was told late in the evening that my operation was scheduled for the following afternoon. Yet more hanging about. I think it must have been worse for Masha because I phoned and moaned at her several times and there was nothing she could do about it of course.

The following morning passed slowly, but at last at about 1.30pm, I was taken to the anaesthetic room to prepare for the surgery. Once again, the team of anaesthetics were fantastic. They reassured me that all would be well and that when I awoke I would be in the High Dependency Unit where I would be given special care before returning to the normal ward. As with the previous operation, I have no memory of passing out, and sure enough I woke up in the HDU about 7 hours later. There were only 3 of us in the ward and we were looked after by 2 superb nurses who catered for our every need. In my case it included changing my stoma bag. Not everyone’s activity of choice! By the following morning they had me out of bed, and by lunchtime I even walked down the corridor with their support.

After lunch, Masha arrived. It was fantastic to see her, and I appreciated that to get to Southampton hospital involved a 2 hour journey each way. including a car, a train and a bus journey. Despite that, she visited each day I was there which made the stay in hospital that much more bearable.

As after the previous operation, my stomach had several small cuts where the keyhole surgery entered, and one larger scar where they removed the liver and call bladder. Ironically, the scar this time was just above the pelvic bone, whereas for the bowel surgery the main scar was in the central stomach area. It all seemed the wrong way around, but I think they knew what they were doing.  Once again, I was connected to a catheter, and several tubes and drains, which made moving around quite difficult. In all I had about 14 cuts into my stomach during the 2 operations. I felt a bit like a pin cushion. Apart from the first night in the main ward, I had very little pain, and only needed a few paracetamol tablets during the first couple of days after surgery. I was lucky.

During the next couple of days, I was kept moving as much as possible. And one by one the various tubes were removed. As previously the nurses and doctors were great, but again it was clear that they were working under considerable stresses. I hope it isn’t typical, but once again I shared the ward with and incredibly difficult man. Not only did he call out throughout the day and night, but he constantly insulted the nurses, even racially abusing one as she did her best to clean him up. How anyone could be quite so unpleasant, I don’t understand. It is a credit to the nursing staff that the carry on with their dedicated work despite the likes of him.

The operation had been on the Thursday, and by Monday they decided that I could go home. Before I was signed out I was examined by My Armstrong’s assistant, who discovered that the drain from my liver on the right side was still leaking bile, and that it should therefore remain in place for another 10 days. He arranged for me to see him at Bournemouth on the following Wednesday. That seemed OK, but it was uncomfortable to have a second stoma type bag next to the original one.

As ever the fantastic Masha was there to pick me up, and for the second time in a couple of months it felt great to be going home. They had warned me, but for the first few weeks after the operation, I felt totally exhausted. As with the previous operation, I made myself walk a bit further each day, and gradually my strength returned.

Two days after I came out of hospital, Steve Cooper’s memorial service took place in Bere Regis. I was sad to miss it, but Masha along with 200+ people did attend, which was a measure of his popularity. Since our diagnoses were just weeks apart, and because of the time that we had time spent together, I have really missed Steve, and realise how lucky I have been to survive so far.

Recovery from bowel surgery

My recovery was swift and on the Saturday morning during the daily Doctors’ rounds I was told that I could go home later that day. What a relief. I packed my belongings, phoned Masha to tell her the good news, and awaited her arrival. A few minutes later a new Dr arrived and told me that he would like me to stay for another day just to make sure that my stoma output was OK. We were disappointed, but when the nurse told me that the Dr had come in especially to see me on his day off, I knew that he had acted in my best interest.

After 5 days, on the Sunday, I finally went home. They say, “absence makes the heart grow stronger” and in the case of Masha and the house, that was certainly true. I missed small things like having a cup of tea together in bed, and really appreciated them more on my return.

That isn’t to say that my stay in hospital was awful. The nurses and other staff were incredible, working as they were under considerable stress after 7 years of austerity and Tory governments. There is no doubt that without the skill and dedication of Dr Querishi and his colleagues my life would have been shorter and unpleasant. I am greatly in his debt.

That said, the experience of spending 5 days in a cancer ward was not an enviable one. The constant noise throughout the day and night means that sleep is a best short and irregular, and when you do manage to dose, a nurse invariably appears to take your temperature and blood pressure. On top of that I had the bed-neighbour from hell. He insisted on watching television at all hours of the day and night with the volume turned up, and constantly swore at himself, the staff and all those around him. Despite that, at times I couldn’t help feeling sorry for him, as he was suffering from a stomach wound that was reluctant to heal. But how the nurses managed to deal with him in such a compassionate way in despite his hostility towards them, I will never know.

It was great to be home and to know that the bowel cancer had been removed, but the euphoria was dampened by the knowledge that I would soon have to undergo it all again with the liver surgery.

The next few weeks were a time for recovery. At first I could only manage a few rounds of the garden, but within 3 weeks I was back on my bike, and after 4 weeks we went to the Athletics grand-prix at the Olympic stadium which I had booked before my diagnosis.

Also, in early July, Lena and family came to stay for nearly 2 weeks. Because I was still recovering, they stayed in a nearby caravan park, but we met up each day for walks or visits to local events. For a couple of days Steven and family also came, so all 10 of us were together, One evening we went for a meal at the local Claypipe inn. It was just great to have everyone there, and to realise what great grandchildren we have. Daisy has suddenly become a mature and attractive young lady, who is doing very well at school. Rufus is as loving as ever and still gives his grandma and grandad great cuddles even though he is now 12 years old. Immy is as effervescent and full of life as ever, and like Daisy takes part in a whole variety of great activities. Isaac is just loveable and honest. His opening greetings when he meets me are: “Has your cancer gone Grandad” or “Have you still got your bag grandad?” From the mouths of babes…. It was really great to all be together and I’m sure it helped to speed up my recovery.

Early in July, I went for another MRI scan at Poole, and a week later we had an appointment to the oncologist Dr Harle. That turned out to be one of the low points of the year. She told us that the liver cancer had grown since the last scan, and that a second tumour had appeared on the other side off the liver. Since this was close to a major blood vessel, she thought it unlikely that the liver surgeon, Mr Armstrong would be able to operate. If not, then my life expectancy would be only 2 years. This really came out of the blue, and left us both quite depressed. Poor Masha hardly slept at all that night.

 Midway through the next morning, the cancer nurse Georgia, phoned to say the Mr Armstrong had agreed to do the operation. In the words of the song “What a difference a day makes.” Our spirits lifted, but the prospect of further surgery moved a step closer.

The next week was a busy one. On the Tuesday we saw Dr Quereshi for a follow-up on the bowel operation. He seemed pleased and talked briefly about the Stoma reversal procedure that would follow in due course.

On Wednesday we went to Poole again for a CT scan, and on Thursday we drove to Southampton to see Mr Armstrong the liver surgeon. He was a likeable man who explained the surgical procedure in detail. He showed us the CT scans and pointed out where the 2 tumours were. To us they were difficult to distinguish, but he explained that the original tumour could be removed by taking a wedge from the right side of the liver. The other had developed so close to the blood vessel, that it required the whole of the left side of the liver to be removed. He reassured us by telling us that this was a normal procedure and that the liver was the only organ to regenerate, and that it would regrow in a matter of a few months. He reassured me that the left side was smaller anyway. Finally, he added, “Oh, and while we are at it we’ll also remove your gall bladder.” Would there be any of me left?

Bowel surgery

The four weeks waiting for the bowel surgery were long ones. It was a combination of apprehension about the unknow, whilst at the same time wanting the whole experience to be over and done with. Deep in my mind I also knew that when it was over I still had to face major surgery on my liver and possibly another round of chemo, before a final operation to reverse the stoma. I tried hard not to dwell on that.

It is also difficult to avoid the “what ifs” crossing your mind: what if I get a bad cold, what if the surgeon falls ill, what if there is a power-cut during the operation, and so on. In the end, it was an unpredicted what if that caused the problems.

At last the day of surgery approached. My operation was due on Tuesday 6^th June, and on the Sunday before I could only eat “light meals.” On the Monday morning, the laxative/energy meal regime began. The plan was to take 3 doses of powerful laxative and 4 high energy drinks at set times during the day. I had been warned by a neighbour that Maxilax lived up to its name, and he jokingly said that he expected to hear the results from his house! I think it was a joke!

When nothing had happened by lunchtime, I was surprise, and by teatime I was beginning to worry. At 6 o’clock I was sick for the first time, and by midnight I was retching continuously, but nothing was happening at the other end. That night must rank as one of the worst of my life. On top of being continuously sick, and suffering from awful stomach pains, I became convinced that they wouldn’t be able to operate in the morning. At 3 am we even phoned the hospital, and the rather bewildered nurse simply told us to come in as scheduled. It was a bad night for me, but must have been equally difficult for Masha who just had to sit, watch, worry, and clear up the sick.

At 6.30 we set off for the hospital where we were due at 7.15. Incredibly, as we entered the doors of the hospital I felt the first movements below, and rushed to the nearest toilet. Whether my neighbour who was now 7 miles away heard the resulting explosion I don’t know, but the relief was indescribable. In the next hour before the operation began, I had a further 3 equal episodes, and the pre-operative nurse reassured me that the surgery would go ahead, and that all would be well. He then went through the now familiar list of questions: name, date of birth, have you false teeth, etc etc.

Before that, Masha had left me in the day surgery ward, and so she faced the whole morning, uncertain of whether the operation had gone ahead. It was only when she phoned in the afternoon that she was told that I was in the theatre.

At about 8.30, the nurse led me down to the operation area where I was taken into the anaesthetics room. There were 4 anaesthetists present and they explained what was about to happen in a friendly and reassuring way. At one point the door to the operating theatre was open and I was surprised how many people were there, and how high-tech the whole place looked. 

        The next thing I remember was being in the recovery area, and then being trolleyed to the ward where I would spend the next 5 days. On arrival, the porter told me that I had the best view in the hospital, and indeed my bed which was in a ward of 4 did overlook Poole park, with the harbour beyond. The time was 6.30 which meant that I had been out of it for about 10 hours. I later learnt that the operation itself had taken about 6 hours.

At about 7pm Masha arrived. I think she was as glad to see me as I was her. She had had a really difficult day. Having left me at 8 that morning, it wasn’t until early afternoon that she knew that the operation was going ahead. She then phoned the ward several times to be told that they expected me but that I hadn’t arrived yet. Finally, at 6.30, they said I was there and that she could visit. Probably because of the drugs I had been given, I remember feeling on quite a high that evening. It was just great to have Masha there and to know that the operation had gone ahead, despite the problems of the day before.

The following morning reality set in. On nurse’s orders, I did manage to sit up and eventually get into the bedside chair. It was then that I realised just how sore I was, and how many tubes and bags I was attached to. If you are squeamish you might want to skip to the next paragraph at this point.

I had been told about the catheter up my willy and the stoma before the operation, and fortunately the catheter was inserted under anaesthetic. What I hadn’t expected was a tube up my bum which was stitched in, a drain into my stomach, and a drip into my arm attached to a bag on a walkable trolley. When the surgeon suggested that I tried to stand and take a few steps, I wondered if that was possible with all the attachments that I had. On a follow up visit to him a few weeks later, he laughed at the thought of me carting all those bags of unpleasant looking liquids around the ward with me.

Later that day the stoma nurse arrived and explained and demonstrated all about the stoma, and how to look after and change the bag. As I found with all the specialist nurses, she was kind and encouraging and offered follow up help should we need it. Apparently, many people are upset about having an ileostomy (The medical term for a stoma), but despite the inconvenience of regularly changing and emptying the bag, I have not found it to be a huge burden. Someone once described it to me “As having your bum in a different place,” and I think that is the way you need to think of it. Hopefully it will be reversible at some time in the future.

Over the next few days, I was encouraged to walk around the ward and corridor, and by the Friday, Masha and I were able to walk to the hospital café for a coffee. One by one the tubes were removed, which was a huge relief, especially when they unstitched the one from by bum.

The first Chemotherapy

On the following Monday, 6^th Feb I phoned nurse Caroline and she told me that she had booked my first chemo session for Fri 17^th, following an appointment with the oncologist Dr Harle on Monday 13^th. The following day I received details of the chemotherapy medicines and their possible side effects; not particularly easy reading! The drug they are proposing is called Xelox, and is a combination of oxaliplatin and capecitabine. Sounds harmless enough.

The following 12 days or so seemed a long wait. Although you don’t look forward to the chemo treatment after all the scare stories about it, once you have been diagnosed with cancer any days of inactivity, worry you that the tumour might be spreading.

That Thursday I saw Dr Spring for our pre-arranged appointment. He was supportive and offered any future help that I might need.

On Monday 13^th Feb, Masha and I saw the oncologist Dr Harle at Poole hospital. Caroline and Georgia were also present. After a series of questions, she explained exactly what I could expect in the future. She was honest and efficient, but at the same time, compassionate and understanding of the feelings and worries that we had. Most of what she said was reassuring, except perhaps the statement that the “cancer will never be completely cured”. I consoled myself with the phrase people use that it has goes “into remission”.

My “pathway” to recovery was about to begin.

Friday the 17^th Feb. C-day. Masha dropped me off at Poole for the 9.30 appointment, and I was immediately greeted by my Chemo nurse Emily. Like everyone I have dealt with so far, she was great. She explained what would happen over the next 3 hours and then took me to the treatment room where 2 ladies were already plugged in. Having been given a number of anti-nausea and steroid drugs we were ready to begin. A cannula is inserted into the lower arm, and then the Oxaliplatin is infused into the arm over the next 2 hours or so.

During that time, I got into conversation with one of the other ladies there. She was about 60 years of age and had suffered from lymphoma several years before. This had gone into remission after chemotherapy, but the cancer had recurred during the Autumn. She had had a course of Chemo before Christmas, and incredibly managed to continue working with her pre-school group throughout. Today she was on a six-hour chemo session to be followed by several weeks in hospital to undergo stem cell therapy. She was one brave lady whose predicament put mine into perspective.

As the session drew to a close, Emily appeared with a carrier bag containing the pills the I would need until the next hospital visit in 3 weeks. It was like a visit to a pill factor. Apart from the main anti-cancer drug, capecitabine, of which I had to take 5 tablets twice a day, there were steroids, anti-nausea pills, diarrhoea and constipation tablets, and the oncologist had even prescribed sleeping tablets if they were needed. The two ladies being treating in the ward with me were almost jealous of the sheer number of pills that I was being given. Obviously, all chemotherapy treatments are not the same. For the next two days, I took 19 tablets on each day. No wonder chemo affects the way you feel. Masha claimed I rattled.

After about two and a half hours, Emily unplugged me and I was free to go. A quick phone call to Masha, and within minutes she was waiting for me in the hospital pick-up area. Her first words were “My God, you look so grey.” It reminded me of the old song “My word, you do look queer.” Probably not the words that I wanted to hear, especially since I felt so good. It must have been the steroids kicking in. Despite the comment, it was lovely to be back with Masha and to be heading home. Whatever lay ahead, I at least felt that now thing were on the move.

Dr Harle had suggested that I underwent 8 rounds of chemo in total; possibly 4 before the bowel surgery and 4 sometime later depending on the results after the first group. Each session lasted for three weeks, starting with the infusion described above, and followed by 2 weeks of daily tablets. You are then given a week off to recover before the next infusion and so on.

Luckily for me, they had recently introduced chemotherapy treatment in our local hospital in Wareham. Not only is it much easier to reach than Poole hospital, but it has more of the small town, friendly atmosphere. The treatment was administered by the same lovely nurses as in Poole. They came to Wareham to save us travelling.

Understandably, people tend to grimace at the mention of the word chemotherapy, and to be honest it’s not a bundle of fun. However, you do need to bear in mind that it is an attempt to prolong your life, and no medical intervention is carried out for pleasure. Most people are also unaware that there are many different types of chemo, each of which affects people differently, and of course we all react individually to any treatment.

In my own case, the rounds of chemo produced several unpleasant side-effects. The most noticeable and longest lasting was the stinging sensation in your hands, feet and face whenever they became cold. I remember going to fetch the paper after my first dose, and feeling what were like mini electric shocks all over my face. For several weeks, the fridge and freezer were no go areas. Several days after each infusion I suffered from really debilitating stomach cramps. On one occasion, they were so bad that I rolled on the floor in pain. When I took my first bite of breakfast each morning my jaw was really painful- poor Masha would wonder what was wrong when I yelled out. Incredibly by the next bite it would be gone. Finally, I once found that I just couldn’t breathe. Luckily the nurse had warned me that this could happen, and that the solution was to completely relax and assure yourself that things will soon return to normal. Fortunately, they did.

So, for me the first 4 rounds of chemo were unpleasant but bearable. During those 3 months we managed to visit Lena in Scotland, and even went on a jive weekend in a Bournemouth hotel.

Life soon returned to normal, but after a couple more scans and a visit to the oncologist, I had an appointment with Prof Qureshi the surgeon who was due to do the bowel surgery. He explained that he would remove the cancerous section of the rectum, re-join the two ends, and create a temporary ileostomy or stoma to protect the bowel after the operation. He then examined my rear end and said the he would personally like to do another sigmoidoscopy before he could finally decide on what action to take. He thought the whole operation would take about 4 to 6 hours if they were able to use both keyhole and robotic surgery, and that all being well the operation would take place in 4 weeks on June 6^th. Both Masha and I felt reassured by his positive approach, and trusted in the Dr’s abilities. He seemed a decent person.

After the appointment, I was whisked around the hospital for a series of Pre-operation tests, and at the end of these I was given a large bag of “goodies” to take on the day before the surgery. I was also given fairly detailed instructions on what to expect before and after the operation. Not particularly encouraging reading with still over 4 weeks to go.

The examination of the rectum was due at 10.45 on May24th, and immediately I arrived I was asked to change into a hospital gown and take a seat in an open waiting area, leading me to believe that the whole thing would be over in half an hour or so. As usual, Masha had taken me to the hospital and she had gone to the shops to await my phone call when it was finished.

I began to understand why they are called “waiting” rooms, as 11, 12 and 1oclock passed without any sign of the good Dr. Eventually at about 1.45 I was called in for the examination. Apparently, an emergency had occurred which had delayed Dr Qureshi. That was perfectly understandable, but it would have been nice if someone had just come to explain the reason for the delay during that 4-hour wait. Sitting in a hospital gown for that long in what is virtually a hospital corridor with the public wandering by, wasn’t my idea of a bundle of fun. But I guess worse things happen.

As promised Dr Qureshi carried out the examination himself, accompanied by the now normal observing students. After just a few moments he smiled and told me that the tumour was in a position that would enable him to remove it, rejoin the two sections, and eventually return my bowel to normal having replaced the stoma which he would create during the operation. More of this later. Apparently, if the growth is closer to the anus, then the whole rectum has to be removed, and the stoma is permanent. A bit of luck at last!

Being told the date of your operation is reassuring, but when it is still over 4 weeks ahead, it does give a lot of time to contemplate it, and especially to dwell on the possible repercussions. My whole mental/psychological response to the cancer has been interesting. Like most people I have experienced dark periods in my life, and the thought of being told that I had cancer always filled me with dread and the fear that I might descend into depression. In fact, that has not been the case, partly I think because the nurses, doctors and Masha have been so positive and reassuring, despite the seriousness of my situation. I always try to concentrate my thoughts on the more positive things about my life, especially my very supportive wife and family, and the idea that Masha and I will begin to travel again once all this is over. I’m sure Masha will tell you that I have moaned a bit since all this started, but I don’t feel that my complaint level is much higher than before. You will have to ask her!

I mentioned earlier that my close friend Steve Cooper was diagnosed with terminal cancer just a couple of weeks after my own diagnosis. Steve was a great guy with a very positive attitude to life who gets on well with almost everyone. During those few months, we met up fairly regularly at the sports centre when he took his disabled son Michel for spinning (Exercise bike) classes.

During those weekly meetings, we discussed and moaned a bit about our respective illnesses and treatments, and inevitably talked about our futures. Very early on, he was planning ahead for the future of his wife Jill and Michel, after he died. He also set out his detailed ideas for his memorial service which he thought might be attended by a large number of people because of his background and interests. He was proved to be right when more than 250 people came to commemorate his life. Because Steve’s cancer had spread from his oesophagus to his liver, he found it increasingly difficult to eat. Consequently, each time we got together, Steve was a bit thinner. Having met at a sport’s centre everyone commented on how fit he looked. Sadly, we both knew differently. Despite everything, even during our most intimate discussions, Steve remained positive and cheerful. I doubt whether I would have remained so upbeat had our positions been reversed. Looking back, I certainly feel that our meetings helped to put my situation into perspective. I only hope that Steve may have gained some benefit from them too.

My reaction to other people and their response to my illness has also been interesting. I think that about 90% of people that you meet greet you with either “How are you” or a similar phrase. The answer “Bloody awful, I’ve got bowel cancer” doesn’t really seem appropriate to a relative stranger who is simply trying to be polite. “Fine thanks” is therefore my normal response.

Most people who are more than just an acquaintance, I have tended to tell and if they express an interest I will explain in some detail. Most are kind and sympathetic, but to just a few the cancer word seems just as offensive as the other C word. They immediately change the subject, and don’t mention it next time you meet. To a few people it seems that the fear of cancer is so engrained that it influences their whole way of thinking. That seems sad to me.

Nearly everyone you meet and who knows about your situation tells you how well you look. This is really reassuring until you met them several weeks later and they say, “You look really good, but last time you looked awful.”  I’m sure they mean well.

Checks and diagnosis

The thought of an internal examination of the rectum doesn’t fill one with enthusiasm, and for several nights I woke at 3 or 4 worrying about the possible outcomes. Eventually the appointment time arrived on the 11^th and having changed into the inevitable hospital gown, I was shown into the theatre where the examination was to take place.

A lady Dr introduced herself and asked whether I minded a student Dr being present during the examination. I said I didn’t, as long as they didn’t speak too much about my situation in words that I would understand. The Dr examined my notes and said that in view of the various previous examinations, she expected the findings to be a healthy rectum. As soon as the probe entered my body I could tell that her concern rose, and when I heard her ask the student to take 6 biopsies I knew that my worst fears were confirmed. After several minutes, the probe was over and I turned to the Dr and said “You have found something haven’t you.” She replied “Yes, but I will talk to you later”. With that I dressed and returned to the waiting room to await her report.

My first thought at that time was that I wanted Masha to be there when the Dr explained what they had found. She had dropped me off at the hospital and then gone to the shops in Poole. So, I immediately phoned her and for once both mobiles worked. I explained the situation and she said she would come immediately.

The waiting room where I was sitting was separated from the main waiting area by a partition, so I walked through to the other half and asked the receptionist to tell Masha where I was when she arrived. I just hoped she would arrive before the Dr called for me. The journey from the shops should have only taken 10 minutes, so when she hadn’t arrived after half an hour I became anxious and decided to ring her again. As soon as the phone rang, I heard her voice from the other side of the partition. She had been waiting there for 20 min wondering what had happened to me.

We met just in time as the Dr and 2 nurses called us and led us into a small room. The Dr wasted no time, and explained that she had discovered a growth at the top of my rectum, which had stopped the colonoscopy from probing any further. She said that the biopsies would confirm the situation, but that she was sure that the growth was cancerous. She explained the likely outcomes in a factual but sympathetic way and then went to carry out further sigmoidoscopies.

We were left with the 2 specialist cancer nurses, Caroline and Georgie. Both were exceptionally caring but professional in their approach. They had clearly been well selected and trained for their role as cancer nurses. They described in detail the various tests that I would need to undergo in the next couple of weeks and explained what the outcomes would be, depending on the results of those tests.

They then told me that I needed to eat a fibre-free diet. This was almost the hardest news of all because it involves cutting out all the foods which I most enjoy, including nuts, seeds, hot chilies, vegetables and anything else containing fibre. What was left is mainly white bread, cheese, most meats and pasta, which sounds OK until you try to think of what to go with the pasta that has no fibre. At least beer and wine were not on the list.

The real irony was that Masha and I had gradually moved us towards a diet containing high fibre and low meat intake over many years because we believed that it was good for our health.

Before we left the hospital. Caroline explained that I would be called for MIR and CT scans in the next couple of weeks. The following afternoon we were due to attend a neighbour’s funeral, and minutes before we left, the hospital phoned to ask if I could come in for an MRI scan that afternoon. Since the appointment wasn’t until 4.30, we could go to the 3pm funeral and still make the appointment.

The lady on the phone asked a series of questions to ascertain that I had no metal objects such as joint replacements, which can cause problems with the scan, and finally asked if I had had any recent operations. I told her that I had a hernia repaired about 10 years before.

After the funeral, we made our way to Poole hospital in a downpour, and a few minutes after we arrived, the nurse called me to the reception and began to go through the same questions that I had been asked on the phone. I explained that I had answered the questions on the phone, but was told that the nurse had to go through them herself, as any metal object could cause me real harm. When I mentioned that I had had a hernia operation 10 years previously, she enquired whether they had used any clips in the repair. As I wasn’t sure, she tried to find my notes, but when she was unable to track them down she told me that the scan would have to be postponed. I was disappointed, but more surprised that hospital records are still kept on paper files. At least those of a certain age are. 

The nurse said she would phone me during the next day, and true to her word, she called to make an appointment for the following day, which was a Saturday.  Not all nurses seem suited to the job, but “Lizzie” whom I was to meet again during the year was outstanding.

An MRI scan comes as a bit of a shock if it is your first. Having changed into a hospital gown, you are laid onto a moveable slab. The nurse explains that the process will be noisy and gives you earplugs and offers earphones and music of your choice. I chose 60s pop, and with that I was moved into the cylinder chamber which gives the MRI scan. The nurse who has withdrawn from the room can communicate with you through the earphones and after a few moments warns you that the process will begin. Years ago, before university I worked in a wire product factory, where a number of noisy machines produced a series of bangs and screeches. The MRI scan reminded me of a combination of those sounds of the past, combined with those made by the Tardis in Dr Who.

The nurse had told me that the scan would last about 20 minutes, but in fact I was in for double that time as she had to repeat some of the scans. The whole process was a bit claustrophobic but otherwise not too unpleasant. I was then able to go home, and wait for the results on the following Thursday, when the cancer group would meet to discuss the next step. This is a group of all the Drs and nurses who are involved in your case.

For the next few weeks, it was the waiting which was the most difficult thing. During the day, I tried to get on with my normal life, but when I woke at 3 in the morning, it was hard not to dwell on all the possibilities that might lie ahead. I probably averaged only 4 or 5 hours sleep during those few weeks.

Despite, or perhaps because of all this I had to keep reminding myself how lucky I was in several respects. Firstly, I have Masha as my ever-present companion and support. It is in her nature to be positive. She always encouraged me to think positively, and supported me throughout in every way including: accompanying me on my hospital visits, looking after my dietary requirements and putting up with my downtimes. I often needed to remind myself that these days must be almost as difficult for her as they are for me.

My 2 children Lena and Steven were also supportive throughout. I decided to tell them as soon as I knew, and although they were clearly shocked, they too remained positive.

Sadly, one of my best friends of 40 years was diagnosed with cancer just a week after me. Steve was told that he had between 3 months and a year to live, and he died in August, just 7 months later. Steve was a great guy who was a fitness and health fanatic. In his 60s, he ran marathons in under 4 hours, and took part in a variety of sporting and gym activities. He was just 66 when he died. There is no justice in life and death matters.

 I had taught with Steve back in the 1970s, and he and his wife Jill devoted much of their lives to looking after their severely disabled son Michael. Masha and I kept in touch with all the family because Mike’s favourite event is coming to the Purbeck Gateway club for people with learning difficulties which we help to run on a Thursday evening.

Thursday of the next group meeting eventually arrived, and late in the morning nurse Caroline phoned. She said she had generally good news. Firstly, she confirmed that the biopsy showed that it was cancer, but that the MRI scan indicated that the cancer was contained in the lining of the bowel and hadn’t spread into the surrounding tissue and lymph glands. She said that this would mean an operation in the next few weeks but that first they needed to do a full body CT scan.

This was arranged for the following day, which was a Friday. The CT scan was less onerous than the MRI scan. Having donned the now inevitable hospital gown, you are laid in a table and a moveable scanner passes over your torso to scan the organs inside. You are injected with a liquid dye through a cannula in your arm to highlight the vital organs. After only about 20 minutes I was told that I could go home.

The wait for the results on the following Thursday was worse than for the previous week. Somehow, I sensed that all was not well and that I was in for a shock. The nurses had given me a booklet on rectum cancer and I had noticed that the cancer could spread through the blood as well as via the lymph glands. The fact that my close school friend Bas had died from liver cancer just a year before didn’t help me to sleep well. Bas had only become aware of the cancer a few weeks before he died. I even dreamt being told that there was a problem with my liver on the Wednesday night.

Sure enough, the phone rang and Caroline answered. Having exchanged pleasantries, she explained that there was “one small blip” on the previous plan. They had discovered an unexplained patch on my liver. My heart sank despite her reassuring words that all the rest of my organs were clear. She then told me that I would need to go for another MRI scan, this time on my liver to ascertain the extent of any growth. Another week of waiting.

Within an hour of Caroline’s call, the phone rang again. It was from the hospital inviting me for a further MRI scan on the following day. So far, the NHS is proving its worth in times of real need. Everyone I speak to has nothing but praise for the NHS when dealing with serious illness. At least that is the case here in Dorset. Minutes later, Caroline phoned again to check that I had received the appointment time. Another kind step beyond the call of duty.

Like most things in life that you don’t relish, when they come around a second time, they seldom seem so bad. I knew what to expect of the MRI scan, and this time I was only in the cylinder for about 20 minutes. Then it was home for another week’s wait.

The following Thursday, Caroline phoned earlier than usual. Her news was much as I had expected. The MRI scan showed a single blot on my liver. Caroline explained this meant that I would now need to undergo chemotherapy, both to kill the cancer in the liver, and to reduce the rectal cancer before they will be able to operate. She said that the growth may not in fact be cancerous, but if it is, and they try to remove it, then it could cause it to spread. She arranged for me to see the oncologist (cancer specialist) in 10 days’ time, and said that I would need to have another blood test to decide on the most effective treatment. She said that I could have this done in the pathology department at any time and that she would leave the relevant form in reception after 12noon.

As ever, Masha had driven me to the hospital, but when I enquired at the pathology reception, the form had not arrived. The receptionist didn’t know who Caroline was, and suggested that I went to the oncology department to see if they could deal with me.

My first visit to oncology was a bit scary. I guess it is something you hope you will never have to do. However, everyone there was pleasant and helpful, and within a few minutes they had managed to locate Georgia (Caroline’s partner) and she immediately came down with the relevant form and explained that they could do the blood test in the oncology department, as they were experimenting for a week to see whether they should offer blood tests there on a permanent basis. Luck was with me because the whole procedure was over in 5 minutes. Judging from the queues in pathology it might have been a long wait there.

A quick phone call to Masha and she arrived to pick me up and off to lunch at the Wareham golf club. What a tremendous support Masha has been throughout. I dread to think what it would be like without her backing, and I am very aware how difficult it must be for people to face this situation on their own.