If tears are never far away… Make them tears of laughter.
Question - Jigsaw puzzles and lower back pain… What do they have in common?
Answer - A long weekend & Me time with 3 x 1,000 piece jigsaw puzzles and a couple of bottles of red, the beginning of my cancer journey…
August 2017 - Happily I settled myself in for some quality ‘no contact’ time with the outside world and immersed myself in the world of visual problem solving, but by Tuesday my butt was numb and I had a nagging ache in my lower back. I assumed that it was just strain from sitting too long and ignored it for 4 weeks waiting for my body to ‘get over it’.
My regular GP was off, so I saw a relief doctor who recommended yoga to relieve the problems. Four weeks later I was back again, and this time bursitis was diagnosed with a recommendation of anti-inflammatories.
October 2017 – My GP was back. Yay! Off I trotted with my pain in my back now a constant pain in my asset… 2 weeks with a doughnut cushion and anti-inflammatories, with a follow-up, was the recommendation. If there was no improvement my insides would attain the rather doubtful experience of being photographed.
In my mind, and my GP’s, it was still not a matter of importance. I was 46 years old and relatively healthy, why would it be of pressing concern? A referral for an X-ray was issued at the end of November 2017, my fault; I let 2 weeks become 4. I was working as an orderly and was concerned that I would lose hours if I took time off for testing. We were also coming into the Christmas season and I was determined that I would not be a burden to a health system that was winding down for some well-deserved time with families, so I waited until the 2nd week of January 2018 before hauling my now throbbing asset into the glare of the X-ray eye. A large, ‘probably benign’ tumour was identified on my coccyx. A mild case of ‘bugger’ with a huge side of ‘meh’…
My GP was not so sanguine. A flurry of paperwork ensued with a referral to a colorectal team. It was the first time I saw the words RECTAL CANCER in relation to me and to be honest I was more perturbed by seeing my age ‘46 years old’ in writing than the idea that I had cancer. It’s funny the things that go through your mind as it tries to cope with something outside its purview. I remember laughing and saying that I was not impressed, my GP was supposed to make me better, not make me feel my age. Within 2 weeks I had my first appointment with the man who was going to know more about my insides than other person, both then and now.
Dragging my reluctant anatomy into the consulting room I underwent a DRE (digital rectal exam) without the benefit of flowers, dinner or even a getting to know you cup of coffee!
A ‘scope was also performed with the reassuring words, “I think that the X-ray images dictate we take a closer look”. I was still rather unconcerned, more embarrassed over waving my nether regions about than fearful of the upcoming colonoscopy. Little did I know of the mind blowing, bathroom paint peeling, and snivelling ordeal that was to follow… Feeling drained, and slightly
turned inside out; I slunk into the hospital ‘ready for my close up thank you Mr DeMille’. The outcome was a 5cm adenocarcinoma, 5cms from the anal verge. Yikes, cancer!
More imaging with MRIs CTs, blood tests, etc., followed as they began the arduous task of staging for treatment. My employer was extremely accommodating during all of this. I was being treated at the hospital I worked in so I’d pop upstairs for testing/scans during my breaks and return back to the emergency department. cT3N2 was the end result and what was, in the immortal understated words of my CR specialist, an interesting abnormal expression in my MSH2 and MSH6 proteins. I was one of the lucky ones(?) who had been born with a faulty DNA spell checker, aka Lynch Syndrome (a genetic predisposition for cancer). Within 4 weeks of my first appointment with the Colorectal Unit I had been diagnosed with Stage 3 Rectal Cancer and Lynch Syndrome, plus had joined the ranks of a frighteningly growing number of cancer statistics.
Chemoradiation for down-staging began. After 5 weeks of dragging my recalcitrant rump in for a long course of zapping in the microwave and the doubtful pleasure of Capecitabine (Xeloda) chemotherapy tablets 5 days a week, all efforts to save my sphincter had been deployed. If you’d have asked me at the time “how fond was I of my tail end?” I’m not sure what my answer would have been. Distressing URGENT! diarrhoea, midnight laps to the ‘loo and bed linen changes became my norm. This did settle down a couple of weeks after treatment was completed, thank goodness.
A discussion then ensued. With my lifetime 52-80% risk of developing another primary colorectal cancer and a 100% risk of endometrial cancer due to Lynch Syndrome, a complete proctocolectomy (removal of the whole rectum and large colon) with a permanent stoma was offered. Ummm, no thanks… We settled on an Ultra-Low Anterior Resection, Total Abdominal Hysterectomy with Bilateral Salpingo-Oophorectomy which basically meant butt, partial colon, ovaries, uterus, fallopian tubes… everybody out!, with a covering temporary loop ileostomy to allow my bowel time to heal and to minimise the risk of complications from surgery.
Ten weeks later and I was off to have my insides played with. They removed 35cm of my colon and all but 5cm of my rectum, while another team took permanent possession of my reproductive organs - I didn’t really need them anyway, so why not? Alas, being a problem child, I developed complications. An anastomotic leak, with Peritonitis and Sepsis, decided to throw its hat in the ring 4 days after my operation so I was whisked back under the knife to redo the bowel join and washout the abdominal cavity followed by a bout in ICU and an extended hospital stay.
Again my dicky DNA had decided to play a part and I was one of the very few (~6%) that had a susceptibility to permanent radiation toxicity so I lost another 1cm of my rectal stump and another 45cm of an ischemic colon. Complications meant I was unable to complete adjuvant chemotherapy.
At 18 months, I’m currently in remission from cancer but I’m still fighting complications from pelvic radiation disease and have an anastomotic sinus, a presacral abscess, a fistula and chronic sepsis. My CR team have been wonderful in thinking outside the box to find a way to reverse these conditions. At one stage I had more bags attached to me than a handbag display rack! To date I’ve had V.A.C. (vacuum assisted closure) therapy, subcutaneous drains & transanal Foley drains and now Medical Hyperbaric Oxygen Therapy as the latest attempt to encourage healing of my pelvic region.
The best thing to come out of all this is the knowledge that our family carry a gene mutation on my mother’s side. I always wanted to be a member of the X-Men but I would have preferred powers like Storm or Wolverine not the ability to grow tumours at the speed of light (an average of 3.2 years). Other members of my family carry this mutation as well and now have the option to undergo prophylactic surgery and ongoing surveillance to both minimise their risk and hopefully to diagnose any sneaky cancers in the early stages. One of us has already been spared a uterine cancer diagnosis because of this, so perhaps our family tradition of having a shortened lifespan has been broken.
The worst thing to come out of this… Haggis.
Haggis is a loop ileostomy, an obedience school dropout and the torment of my life. What was supposed to be a 6 month fling while I had ‘mop up’ chemo has become a long term relationship. Cupid, in the form of radiation disease, has meant that Haggis is going to be my bit on the side for a little while longer.
I’m trying my best to remain positive and I’ve already proven myself to be an obstinate rule breaker in that I’m showing ‘infinitesimal signs’ of healing contrary to accepted and proven medical experience. As part of my self-prescribed therapy I started Haggis Happens, a Facebook page that pokes fun at the rather uncertain life of an Ostomy-Mate and those times when I lose out to Haggis in my continuing battle to maintain the upper hand. There are some things that you can’t share with your family, only empathetic ‘strangers’.
It is estimated that of the ~1 in 280 Australians who have a Lynch Syndrome mutation, only 5% have been diagnosed. Don’t let a shortened lifespan be your family legacy. Your diagnosis may save your life or the life of a loved one. If you have any abnormal bowel related symptoms, do yourself a favour. Regardless of your age or life-style, haul the misbehaving organ in for a check-up. Perhaps if I hadn’t been so concerned with my dignity we might have found my cancer in its early stages, I wouldn’t have needed radiation therapy, and I would not now be ‘entertaining’ my specialist team on an almost monthly basis.