In my early to mid-40s I experienced a lot of diarrhoea. A few trips to the GP saw me have several FOBTs, blood tests for inflammatory bowel markers and Coeliac Disease, as well as standard blood tests for everything else. All came back Normal. Time and time again. I had an endoscopy at about 45, and was diagnosed with Grade 5 Reflux Oesophagitis and Gastritis. We thought we had found the problem, and I was given appropriate medication.
It didn’t quite fix the problem, and I still had bouts of diarrhoea lasting days on end. FOBTs still normal. I had just turned 50 and was planning on having a colonoscopy at 50, when my father was diagnosed with a small but nasty bowel cancer at age 76. Prior to him, there was no bowel cancer in the family. My paternal grandmother had died of ovarian cancer, and I had lost both ovaries at 21 due to giant dermoid cysts, a condition that seemed to infiltrate the females in my father’s family.
After my dad’s episode, I had a colonoscopy. I was quite riddled with polyps, some being very large, one claiming the grandiose title of “Giant”. All biopsied benign, but there was a problem as to how we were going to deal with them, as they were too big to get out in a regular colonoscopic procedure. I was sent to a specialist who was performing a new (at the time) procedure, Endoscopic Mucosal Resection (EMR), who said he THOUGHT he could get them, but would take two goes. It seemed a kinder option on my body than a colectomy, so off I went.
He told me I was a bit of a novelty, as most people see him for only one of these very large polyps and here was I with eight. I felt quite special! I ended up having FIVE EMRs over the course of 12 months to get these things out. Six lots of bowel prep in 12 months, yuk! The aptly named “Giant” gave him trouble and I had to undergo two procedures for that alone, as it had to be resected piecemeal. Like I said, I felt special! What’s more, new tissue was appearing in the scars of the removed polyps only months later, yay me.
This doctor thought I may have had a condition, and I was sent for genetic testing. Meanwhile, the last EMR (which should have been The End for a while anyway) showed that new tissue was growing in the scar of The Giant, and it was malignant. Instead of coming to the end of a year’s treatment, I was to begin a new chapter. Bowel cancer. I was 51.
To be honest, I wasn’t that worried. Well, I was a BIT worried, but I figured 1: it can’t have been there long (oh really?), and 2: if my dad could have a hemicolectomy at 76, I could do it at 51. I assumed I would be in for a left hemi, my dad had had a right hemi, between us we could make one whole bowel!
I saw a Colorectal Surgeon a few days later. He had reviewed my case, and advised that he would have to take my whole large bowel. I was a little taken aback. What? Why? His answer: I was growing these things fast and they grew big, if he left me with any bowel he could guarantee I would be back (only in doctor-speak of course). I had about two seconds to digest this information.
I watched a colostomy bag float across the front of my eyes (figuratively of course), and that was my first question. Will I have a bag? He thought not, I was young (why thank you!), I was fit, my rectum wasn’t affected and he felt I would be fine with an anastomosis (in other words, he would join my small bowel straight to my rectum, no bag). I wasn’t sure if I felt any better about that to be honest, it sounded quite precarious! He assured me that my body would adjust and that my bowel would settle eventually. All that was going through my head was, “my WHOLE bowel, my WHOLE bowel, oh- oh, this ain’t gonna be pretty”. But, having had major abdominal surgery before, I was also quite sure I wasn’t coming back for a repeat performance! So that was that.
The next scary thing I had to do (well apart from digest everything that had gone on in the last week) was to have a CT to see if the cancer had spread to any other parts of my body. Something about that made me cold right the way through. This was REAL, this was actually happening, and they were checking it wasn’t anywhere else. Reality check. Cold fear with nowhere to look except straight at it. I passed (if you can call it that), and surgery was scheduled for a week later. I had a week to get my head sorted. Never mind the rest of me!
I thought it wouldn’t be pretty and it wasn’t. Enough said. Bowel surgery sucks! I renamed the bathroom in my hospital room My Office, and told anyone who cared to listen that that was where I would be for the best part of the day. And night. I started to think of a colostomy bag with fondness, there was a turn up for the books. I felt like I was going to live the rest of my life as a recluse in my home, never even coming out of the bathroom. My surgeon thought that was quite amusing. I didn’t!
Well, it was over, it was done, onwards and upwards as they say. Couldn’t get much worse.
Well actually it could. The biopsies came back didn’t they? There was cancer in three lymph nodes wasn’t there? I was going to have chemo. If I thought I was scared before, this news put fear in me like nothing had before. “Seriously? You have got to be kidding! How can we go from polyps, to a bit of tissue, to a total colectomy, to cancer in my lymph nodes needing CHEMO???????” I was terrified! The words ‘chemo’, and ‘oncologist’ were ones I never thought I’d hear at this stage in my life. THAT took me six weeks to get my head around, and even then my head was not completely au fait with it.
So, six weeks or so of recovering from my total colectomy, most of it spent in the loo I might add, I had a port-a-cath placed in my chest and began chemo. The Day Infusion Unit of a hospital is the most wonderful, bright, positive, life-giving ward there is! Well it was where I went. The nurses are angels on earth. The ancillary staff and the volunteers are wonderful. My oncologist is a hero. Instead of doom and gloom, the place buzzes with life. OK, chemo itself isn’t exactly a barrel of laughs. I had quite bad nausea (which was treated well), I had peripheral neuropathy in my hands and feet, and my FACE (they cut the dose a bit after I confessed that), I was cold, I got tired, my platelets didn’t cope AT ALL, and lets not talk about the diarrhoea because quite frankly I was soooooo over it that colostomy bag was still looking more and more friendly.
But, for all the awful bits, there were gifts I would never have received had I not had chemo, and I wouldn’t change what happened if I had the chance to go back and do so. Every fortnight for 24 weeks, there we were trekking back and forward to the hospital, leaving with my bottle of chemo drugs plugged in and hung round my neck, back 46 hours later to be unplugged from it all and set free to get over it (slower the longer I went) and to get strong for the next blast and do it all again. What an adventure. What fantastic, wonderful people I met, all of us being infused with some cocktail or other, all of us being treated with such care, kindness and love, all of us on a journey probably none of us would have volunteered for if anybody had asked. It kind of helped me sort out my priorities I can tell you!
Once I was all done, of course there were the obligatory three-monthly checks, which went down to six months, which are always scary, and remind me of it all. A yearly CT for a while, always scary.
I was lucky to be asked to go on a clinical trial about exercise post bowel cancer, which takes 3 years, and was fantastic for getting me back up and going after the effects of chemo.
I am now nearly four years post treatment, fitter than I was before the whole cancer shebang, and living life well. The best bit is that I no longer spend half my life in “My Office”, my bowel did settle down, but it did take a while.
I still always know where the toilet is though, and probably won’t be backpacking around South America any time soon, but I manage, even if my diet is a little boring. Who cares?
I lost some parts of my life that I had before cancer, but for every loss, there was a gift, and I am living life in a different way now, and the changes are good because I choose it to be that way.
To quote a beautiful friend of mine no longer with us, “Life is good”.