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.

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.