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.

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.