by Chris Geiger
The surgeon then described the whole operation to both Rachel and myself. ‘An incision is made from around your diaphragm all the way down to the base of your stomach,’ he explained, while trailing a finger down my front to just below my beltline for added effect.
‘Once you are opened up, we will go in through your stomach, take out your insides to get to the large bowel – obviously they will be replaced after the procedure is completed. Then we’ll remove your entire large bowel and your anus.’
‘What do you mean by remove my anus?’ I felt that nugget of information needed further investigation.
‘Well, it is like an apple core. To be on the safe side, we feel it’s advisable to remove all possible areas where the cancer might spread to. So the large bowel and the anus are removed and where your anus was we would simply sew it together.’ He reiterated with a twisting hand action to emphasize the apple core motion, just in case I hadn’t got it completely the first time.
‘OK, so this was fifty years ago – what new-fangled operation have we got now?’ I knew that I was on to a loser here, but worth a try.
‘I’m afraid that is it. There are other complications that you should be aware of, though.’
‘Such as?’
‘Going in through the stomach does bring us into close proximity to your genital region, and there is a chance of infertility.’
‘That should return to normal, however!’ chipped in the consultant.
‘Indeed,’ agreed the surgeon. ‘However, there is another potential problem in that area. Running from your genitals up towards your stomach are a couple of nerves that control your erection. The surgery will be very close to these nerves and there is a chance that they might be damaged, which would therefore lead to permanent impotency.’
‘What sort of chance?’ I asked.
‘About thirty percent, i.e. one in three.’
‘You’ve never been in sales, have you?’
‘Err, no!’
‘Don’t give up the day job,’ I said. ‘That was the worst pitch I’ve ever heard!’
‘I’ll bear that in mind.’ She smiled.
‘So you’re telling me that, although in the last fifty years we’ve sent men to the moon, invented the internet and developed computers that can fit on the head of a pin, the best you can offer me is to remove my sodding arse?’
‘Well, yes. If we are to be certain of getting all of the cancer, I can only recommend this procedure.’
‘You’ll have a colostomy bag, however, which is admittedly not the same but it is not as bad as you might imagine,’ commented the consultant.
I just looked at her. This was not the kind of back-up plan I was expecting: a stoma or colostomy bag?
I don’t think so. I appreciate that there are thousands of people who live full and rewarding lives after they have had a bag fitted.
‘OK. So what would happen if I did nothing at all?’ I asked.
‘The tumour would continue to grow and eventually it would kill you,’ replied the surgeon.
‘How long would I have if I did nothing?’
‘About twelve to eighteen months.’
So there we had it. In the space of two months, I’d gone from having an innocent takeaway and throwing a speculative sickie to having colorectal cancer and being offered what we like to call in the bowel cancer community the ‘Bag or Box’ option. I politely refused their kind offer and suggested they go back to the drawing board to find another option.
Owing to my requesting alternative solutions to the ‘smash and grab’ attempt on my arse, I’d been sent details of my personal chemotherapy and radiography timetable. This, however, was all about to change.
A couple of weeks after my diagnosis, Mum was having a coffee with a friend, and talking about my situation. Apparently, her friend’s neighbour was an oncologist. In addition to this spooky coincidence, the oncologist and the surgeon specialized in – wait for it – colorectal cancers. He happened also to be the only person in the country who used a special form of radiotherapy, called Papillon, which is applied directly to the tumour. This could enable the surgeon to try an alternative micro-surgery, which would negate the need to remove my anus.
I was obviously stunned; I couldn’t believe it. If ever something was meant to be, this was it. Within three days, the first appointment was made.
I didn’t know if this was going to be the answer, as the doctors might not have been able to operate owing to the tumour’s proximity to the muscle tissue of my sphincter. I had a feeling, though, that this was fate throwing its hat into the ring and I was just going to have to see how far it would take me.
Papillon was really designed for polyps and early-stage tumours and I had a T3a tumour, which was far too big for the Papillon and the micro-surgery called Transanal Endoscopic Micro-surgery (TEM). I had asked the original surgeon why we couldn’t just shrink it and use the hole already there instead of ripping me apart and removing everything. ‘We don’t do that’ was his reply.
Well, with twenty-five sessions of external beam radiotherapy running in conjunction with 5FU chemotherapy feeding continuously into my system via an arm-mounted infuser for ten weeks, that’s exactly what we did. This traditional treatment was rough and my side effects were varied. Luckily, my hair didn’t fall out, but the radiotherapy caused me pain like I’ve never felt before or since.
After the initial barrage, I had another MRI scan to assess its progress before discovering, after months of pain and anguish, if I would even qualify for Papillon and the TEM procedures. To my surprise and great relief, it had worked perfectly. Even without the next stages, the tumour had all but gone. This was great but also annoying as this was not new technology, just standard treatments that had all but nuked a T3 tumour. I had been left in no doubt that the only way forward was to perform radical and life-altering surgery. I wonder how many people simply go with their first diagnosis through fear of cancer and don’t look for alternatives.
I had two sessions of Papillon, with a two-week break in between. The second as an out-patient only took a couple of minutes and some bowel preparation to perform it. It worked perfectly, and with the tumour all but gone I was told that I could go forward for the TEM, which would be performed two months later.
Papillon is effective because it delivers high doses of x-rays directly onto the tumour, at a very low power – oh, and some interesting positions. This means that after only a few millimetres the radiation levels are minimal with only the tumour taking the full impact, leaving healthy tissue alone.
I had my surgery on 30 January and have just passed my eight-year all clear, which in cancer terms means that I’m cancer free. I was only in hospital for a total of five days – two days before the operation eating mostly jelly and a couple after to check my normal bowel movements had returned. I pointed out that this was unlikely as I hadn’t eaten anything for days and my arse was still in shock after having a three-inch hole cut out of it, but rules are rules. I had no temporary stoma and, apart from a slight problem with my back in the first few weeks afterwards, I was all good. Well, that’s not totally true. Taking into account the hectic radiotherapy and chemotherapy regimes I had endured, and the hole in my colon, I never really had major physical problems. I had some skin reaction to extreme sun, part of the reason why I moved back to Manchester as I knew it wouldn’t be an issue there. I still make sure I know where the toilets are whenever I go anywhere, but really I am physically in a far better place than I was before I had cancer.
However, as time went by, I was aware that something was wrong. Surely I should be looking at the world through rose-tinted glasses now that I had survived. I found, however, that in London I was getting increasingly angry at the way people treated each other. I found myself getting more and more impatient and frustrated with people. This was making me an angry person and to some degree it still does.
This is not who I am or who I wanted to be. As neither Rachel nor I was actually from London,
we decided we should look at work options outside of the M25. I was soon offered a great job in Manchester, so we moved back up north, to be closer to my family and hospital, as I was still going for regular check-ups. Unfortunately, after a while, I realized that all was not well with the company. This led to an environment of fear and bullying with members of staff having to leave due to depression because of how they were being treated. If this was the real world, I didn’t want to be part of it. My empathy for others had evidently increased during my illness, probably due to the suffering – and strength in battling it – that I witnessed every day in the cancer wards.
I would become angry for no reason or end up crying at X Factor when an unknown would sing like an angel and I could see how their life would never be the same again. I was an emotional wreck really but I had no idea what was happening to me. I had survived so I must be happy – surely? I tried once more to ignore that I had changed. I so wanted to be the same as everyone else. I just wanted to be ‘normal’ and give Rachel the life that she deserved. I wanted to be happy and I thought being like everybody else would allow me to do that – get a job, get married, have kids. I wanted it so much that I proposed to Rachel while working for the company. Obviously, I loved her to bits and so this was a no-brainer. It was only over Christmas some four years later that I finally admitted to myself that I’d had cancer and needed to start to deal with it.
It took four years after finishing my treatment to confront what had happened and how it had really affected me. This obviously sounds like a very strange and possibly selfish thing to say. I found the social pressures or expectations of having survived cancer were intense. I should be more aware of life, a life where the grass was greener, the sky bluer and small furry animals would flock around my bedroom window every morning. I should be happy that I was still alive and should be training for a marathon straight away. The problem was that my landlord, the taxman and the rest of the world just sprang back into focus. They hadn’t changed just because I’d been ill; I’d just been preoccupied.
Having cancer was a release for me. I’d been driving myself into the ground with work and couldn’t see an end to my situation. The cancer, while shocking, brought everything into focus. Suddenly, the day-to-day stuff just didn’t matter any more. Then there was the feeling of isolation. I’d been in hospital every day for months, being cared for in a place where people had shown concern. For the first time in my life I felt special. That changed the day the tumour was removed.
I went from lots of social interaction and support to being home alone without an income, or a group of people to talk with. At work I was goal-focused and always had routines and plans to achieve those goals.
This helped me take little steps and not focus too much on the end goal. The problem was that I had no idea that I would feel this way and so thought that I was broken somehow and tried to ignore it completely. How dare I be depressed when I was well and so much luckier than so many others? Then I had a turning point and decided to write my own story. I found this really helped me and I hope it will help others, too. I have never really looked back since.
Cancer is scary but not as scary as I had thought. The bravest people I have ever met were in cancer wards and they shamed me with their strength and humour on many occasions. More people live long and happy lives after having cancer than ever before, and those who don’t go down fighting. It’s just a shame that as a species we are at our best when things are at their worst.
Thank you for reading my story and I hope that you learnt something from my journey that may help you in yours. Take care and good luck.
I have to go now because I need a poo!
My Story by Amanda Baird
Never Give Up
Membership: # 14
It was a summer I will always remember. I spent long, lazy, sun-filled days doing fun things with my two boys, Cameron and Cullen. Picnics, bike rides, sleepovers and a two-week holiday in Majorca. We spent the time there swimming, walking, exploring and eating too much. I guess you could say life was pretty fabulous. My boys went back to school and my husband, James, and I got busy preparing our house for the long-awaited and meticulously planned two-storey extension. We cleared junk and emptied the garage of rubbish and old furniture. We continued working on the house at the weekends, but always made time for our boys and social life, too!
One morning in September, I woke and unusually for me didn’t feel at all hungry. I just had a cuppa and prepared the boys’ breakfast. My lack of appetite continued for a couple of weeks, until James eventually noticed I wasn’t eating breakfast every day. His comments made me realize I wasn’t eating too much at other mealtimes either. I’d lost a few pounds in weight, but wasn’t feeling particularly stressed about it. I simply assumed it was related to all the work we were doing in preparation for the new house extension.
‘Go and see the doctor,’ James insisted.
So, reluctantly, I made an appointment. My doctor examined me and I explained my lack of appetite and feeling of fullness after even the tiniest meal. He prescribed Gaviscon and gave a possible diagnosis of dyspepsia, otherwise called an upset stomach or indigestion.
Two weeks later, and now with absolutely no appetite and increased weight loss, I went to see the doctor again. I’m five feet, nine inches; therefore, it was very noticeable that I now weighed just nine stone. This time he suggested I have an endoscopy. I had this done privately just a week later and there was no evidence of any blockage or obstruction. I was also now starting to experience some pain in my left side. As I’d mentioned this to my consultant prior to the endoscopy, he also arranged for me to have an ultrasound. At this point, I wasn’t especially worried as the endoscopy had come back ‘clear’.
James was worried, but I managed to persuade him to continue with his work trips to Dubai and Bangalore. Within the week, I got a date for my ultrasound in the post. As James was away, I asked my mum to come with me so I’d have some company. The sonographer squirted a cold lubricant onto my tummy and began to scan the area. I lay there for a while, thinking about day-to-day stuff like work, the boys and jobs I needed to do at home. Suddenly, I realized I’d been lying there for a lot longer than I’d expected. The sonographer had been taking a long time scanning my left side. I could just tell by her body language that there was something wrong.
‘Is everything looking OK?’ I asked weakly.
‘I need to speak to your consultant, but your pain is definitely not in your head,’ the sonographer replied.
This might sound silly now in hindsight, but at the time I was relieved as I’d started to worry I was imagining the pain. I found Mum, who was sitting in the waiting room, and told her they’d found something, but I didn’t know what. I left the hospital feeling very uncertain of what lay ahead.
I just kept telling myself I was thirty-nine, not ninety-nine, and I’d be OK. Unfortunately, James was still away in Dubai, and looking back this was one of the worst days, as my carefree life had suddenly vanished.
I tried to sound upbeat on the telephone later that evening when James called for a chat; however, he sensed immediately that something was wrong. At that instant, I really started to feel scared. I had my mum, but I didn’t have James to support me so I felt very lonely and the nights dragged on forever. It took James two days to get home. When he finally got back, we just hugged and cried but I somehow managed to stay inwardly strong. No amount of worrying would change the outcome.
My next test was a CT scan, which showed a mass on my pancreas. Then I had an MRI scan to establish the size and location and whether the tumour was operable or not. Sometimes the internet is a good thing, but in my case everything I read was doom and gloom, with very few pancreatic cancer survival stories. The pain had definitely worsened and I was experiencing incredible discomfort on my left side and through into my back. By now I’d lost over one and a half stone in weight and was barely sleeping.
I sat my boys down and told them the doctors had fo
und a tumour.
‘Is it cancer?’ Cullen asked.
‘We aren’t sure yet but the doctors think it might be,’ I replied.
‘Will you die?’
‘I could, but I’ll do everything I can to get better,’ I replied and I meant every word I said.
In late November, I was shopping with Mum, desperately trying to organize Christmas presents.
It was always my job and I was determined this year would be no different. When my mobile started ringing, I knew the outcome of this call could change my life, so answered it nervously. ‘It’s operable,’ my consultant said. I shook in disbelief and felt very excited. A whole mix of emotions rushed through my body: ‘It’s operable’ meant I actually had a chance.
I was admitted to hospital on 4 December. Within just four hours, I’d had most of my pancreas removed. The surgeons also took out my large and swollen spleen, and parts of my adrenal glands were removed, too. I stayed in the Intensive Care Unit (ICU) overnight and was then moved to the Surgical Acute Care Unit where I spent the next week. I had a catheter fitted for five days and a central line in my neck. The morphine was making me really high and causing me to itch and hallucinate. The painkillers had to be injected into my stomach daily, which I didn’t like too much. Eventually, the morphine was reduced, although a little too quickly for my liking and I spent the day in the most horrendous pain; I couldn’t even speak. Eventually, at midnight, my consultant insisted I was given a Patient Controlled Analgesic (PCA), as I was in so much pain; I didn’t stop pressing the button!
On the doctor’s ward round the following day, my drain was still full and cloudy. ‘Once you are off this drip you can go home,’ the doctor said.
That was all the incentive I needed. Within twenty-four hours, I no longer needed the morphine and started taking tablets instead. Finally, after eight days, with the drain still in place, I was allowed home.