Low Anterior Resection life

My first ever blog entry. Wondering if anyone will even find my posts about my life and recovery after failed low (also known as ‘lower’) anterior resection surgery helpful. All I know is there is precious little out there about this surgery, and that I could have done with finding out a bit about it before having the chop. So, four weeks after discharge from hospital, here goes. I’ve got my perch in my community cafe. Cake, concentration, a few clear hours and a story to tell. This is going to be a long post. Warning: my English teachers at school always called me ‘waffley’…

I am recovering from a gone-wrong surgery for a large, cancerous polyp which lurked in my rectum. It measured about 3cm in diameter. Any polyp with a diameter greater than 1cm is classed by the doctors as ‘large’. Depending on how deeply it has burrowed into the bowel wall, it is not necessarily possible to just gouge it out and remove it through the anus, leaving the rectal tissue intact. My polyp was first discovered in May – four months ago as I write – by a colonoscopy. That’s a long, hose-like, very flexible tube with a camera on the end, which is threaded through the length of the five feet or so of colon. (Note: I found this examination completely painless at the time and afterwards. I was sedated for the procedure and would recommend others to opt for that). I had been cocky and confident and pretty sure the colonoscopy would confirm my belief that my colon – including my rectum – was in fine shape. Yes – the FOB and then FIT stool tests had both shown high levels of faecal blood, but I thought this was just because I had coeliac disease. In spite of my best efforts I would occasionally accidentally eat some gluten and my small intestine would react violently, sometimes bleeding. I had reassured myself that I had none of the symptoms that BowelBabe and bowel cancer charity websites told you to look for. No blood, no weight loss, no pain. No changes in bowel habits. Just a niggly twinge in my lower back when I twisted or stood up. Nothing. So that first doctor’s pronouncement chilled me. Even though he had assiduously avoided using the ‘C’ word and talked instead about ‘polyps’ and ‘adenomas’, I picked up on the oddly-subdued atmosphere in the roomful of medics when I came round from the sedative. I was as stomach-shocked as it was possible to be when still numbed by fentanyl. That night, as I googled and studied the photo of the growth, I became increasingly terrified. Cancer happened to other people. I had so much to do still. My whole life so far had been one big procrastination, with decades of future life in which to achieve things. And it was so unfair. I was always gulping down expensive probiotics, trying to avoid meats containing nitrites, avoiding stress, not smoking or taking any drugs, barely touching alcohol, sleeping well, trying to be mindful – whatever that meant, thinking nice thoughts and pursuing creative hobbies to the best of my limited talents, and obsessively keeping an eye on my coeliac disease. I even had settled into running a business doing what I loved which involved being in the outdoors every day. I thought I had a pretty good work / life balance and many disease-free years ahead of me.

Over the next few weeks there were more tests. A CT and then an MRI scan, a biopsy and more photos of the Thing. Then nothing. The hospital just stopped contacting me. Couldn’t even get through on the number given to follow up when the first two weeks had passed. Then the colonoscopy doctor rung and told me to bear with them – I would hear soon. Terrifying time followed waiting for my case to be discussed by the Multi-Disciplinary Team. Went to bed each night imagining that speckled, evil-looking, cuckoo digging ever-further into the hard-working, law-abiding surrounding tissue and then into my lymph nodes in the tissue surrounding the bowel. A nurse eventually rung. She asked me what stage I thought I had. I said I had to assume Stage 4. She just replied I would be told my stage the day after the multi-disciplinary team meeting and that I should make sure I was somewhere quiet, and possibly in the company of a loved-one, at 11am on that day. I then had a few indescribably lonely, miserable days waiting for that call. People not in that situation could be of no comfort.

I waited for the phone call, pacing the paths of a beautiful, overgrown cemetery. The new growth was budding, bursting, bright greens all around me. I remember thinking this might be the last time I ever saw Spring and that it was beautiful and magical and I loved it. A ring! Fumbled for phone. The nurse told me my cancer was Stage 2. I would need surgery and lymph nodes would then be sent off for testing. It was impossible to tell at this stage if the cancer had spread to my lymph nodes or not, but they hoped not. Lymph node involvement would mean chemotherapy. I was given my date for surgery, which was in 16 days time. I was not told anything about the kind of surgery I would be having. Then I was told to come into the hospital the next day for sessions with the physiotherapist and dietician and to then meet her and the surgeon who would be operating on me. I felt very relieved as I had thought that I had incurable cancer and now I was being told it had not breached the rectum’s wall and had not even spread to my lymph nodes. So I might make it after all. I reasoned that I had a sister-in-law who had had Stage 3 rectal cancer and now, six years later, she was officially cured. Friends said that it must be quite a fast-growing cancer for surgery to be scheduled for so soon. These were the same friends who said, when I was waiting to hear my diagnosis, that it couldn’t be a fast-growing cancer as otherwise I would hear very quickly. I cancelled all my clients for the following day and managed to eat and sleep for the first time in ages.

The first part of the next day included an exhausting session with an upbeat physiotherapist who took me through a number of abdominal exercises and gave me numerous diagrams showing core strength exercises to mitigate the hernia-inducing effects of having an ileostomy. There was also a long session with a friendly dietician who loaded me up with a stock of easily-digestible, long-life, drinks packed with calories and nutrients and who advised me to not lose any more weight ahead of my operation: I would lose weight anyway after it. in the afternoon I met the nurse who I had spoken to the day before and the surgeon who I had thought would be operating on me. The surgeon explained that I would be having a robotic excision of my rectum and sigmoid colon and a temporary ileostomy, to be reversed after the join of the stump of my descending colon to the top of my anus had safely healed. Surgery was called a Lower or Low Anterior Resection. He also explained that he wouldn’t actually be doing my surgery: a colleague of his, who was on holiday on that day, would be. He added that they worked together closely and he might help out at the part of the surgery where the join – the anastomosis – was created. I really wished at that point that I had a loved-one with me. I have learnt the hard way, over many years, to be a very cautious person who agonises over what plumber to hire and refuses to be rushed into big decisions. Yet here I was being told by a man I knew nothing about that a robot, operated by another man who I had never met, would be removing about a foot of my colon – including my rectum – in fifteen days time. I knew that bowel cancer was one of the slower-growing cancers and yet I feared to say I wanted a second opinion as I was worried that any delay might cause it to progress to my lymph nodes. The surgeon emphasised the expense of the robot, the minimal skin scarring that I would be left with compared to having open surgery, the remoteness of the chance that a fittish, not too aged, woman like me would die during surgery. (“I reckon it’s about 1%). I felt uneasy, outnumbered – the nurse sitting in was clearly on his team, and rushed. I thought the surgeon looked bored as I attempted to engage him in discussion about what problems I could expect with bowel control after losing my rectum. He conceded many people experienced ‘clustering’. I said that I didn’t care about scarring so much as the surgery being done well. My sister-in-law had a huge abdominal scar from her open Low Anterior Resection (LAR) surgery and I would have been quite happy with that.

I went home feeling ill-informed and read and Youtubed everything I could find on LAR surgery. There wasn’t much in the way of people describing their experiences. But there were enough medical journal articles out there to alarm me with their conclusions that quality of life was often – up to 90% of the time – adversely affected for significant periods of time. My gut instinct told me this had to be the case. You have a rectum for a reason. Weeks later, after I had joined the LAR syndrome (LARS) Facebook group, I read account after account of faecal incontinence, ongoing efforts – often unsuccessful – to take all manner of fibre and nutrition supplements to sort things out, an inability to digest many nutritious foods, stenosis at the join, pain, frequent trips to the toilet, problems with hydration, careers like teaching having to be abandoned, tears in the neo-rectum, and the occasional decision to return to having a stoma. People were asking wearily, desperately, about others’ experiences with sacral nerve implants and wondering whether a rectal transplant could ever be possible. There were also frequent assertions that their surgeons had not warned them properly about these common problems before surgery.

The following week I made an appointment to meet the surgeon who would be carrying out my operation. I wanted to meet him before I saw him for the first time in the operating theatre, just before I was anaesthetised. He was confident and reassuring. I went home and spent the week before my operation informing and planning cover for all my clients, dropping my dog off with a friend, planning for my convalescence and writing my Will. I felt churlish – I should be grateful that I didn’t have inoperable cancer. I would see next Spring. What right did I have to worry about this operation leaving me incontinent when many people have to face up to advanced bowel cancer, have to have surgery worse than a LAR and still have no prospect of a cure?