Into the Bowels of Beauty - A cancer journey
Introduction
It is going to be a long one, so grab yourself a cuppy. As I write from the heart, honest and open about my story, it did take me quite a while to get to this point. Here in 2018, I feel I can tell my story. If this blog helps just one person going through something similar or helps a family member, then that is all I could ask for.
Diagnosis: January 2016
January 2016 is a good place to start when I was diagnosed with bowel cancer. To say it was a shock to the system is putting it mildly. Was I hearing correctly? I was expecting to hear after my colonoscopy that I had a really bad case of piles. But I just knew when I passed out seeing blood in the toilet it was not quite right. The nurse hugged me and told me “they have found something” I just knew! There was no fluffing about; “we have found a tumour and I am sorry to tell you it is cancer.” Nothing ever prepares you for that and the craziness that follows.
Symptoms
The question I always get asked is: What were your symptoms?
If I am honest with myself, I started getting symptoms a good year prior to the six months where I just could not ignore it anymore: extreme constipation and blood when going to the toilet, extreme tiredness, and pain in my rectum and abdomen. Weight loss was easy to explain away; I thought I was super healthy with a balanced diet, running 5k regularly and dipping in and out of my karate training. So the weight loss I never associated with anything more than getting fit and eating healthy…ish.
Surgery
Let’s jump forward six weeks and I am undergoing an eight-hour surgery to remove a 6cm tumour. I had the most wonderful surgeon and was told I would need a colostomy bag, but whether it was permanent she would not know until I was in surgery. The surgeon would try her best for a temporary one, but it all depended on the safe margins around the cancer.
The Fear
I remember the fear of having to walk down to surgery with my compression socks and gown into the unknown. I was the first surgery of the day, and as I sat alone in the waiting area as they prepped, I had an overwhelming emotion, feeling like a small child alone and scared. The floodgates opened. A nurse noticed and told me to hold on; she was going to get someone. Next, one of the anaesthetist’s came to see me. His kind words and holding my hand meant the world as he prepared me for what to expect, but also reassured me that I would be okay. He made me laugh, and I was ready for “cocktail o’clock” as the drugs were administered.
Post-Surgery
Colon surgery, full rectal removal and it was cheerio butthole as it was sewn up never to be seen again. As I woke from surgery, I freaked out. I was so hot and tried to rip off all the blankets; I think they knocked me out again. The first question I asked when I awoke was, “Is the bag on the left or the right?” as I slurred through the anaesthetic. The left, so from that moment I accepted it was there for life. If I am honest, I was relieved—no more surgery and, more importantly, no more colonoscopy and that vile prep liquid they make you drink to clear out your bowels so your squeaky clean. It certainly puts a different spin on “a bag for life,” but the most important thing is I had life, denied to so many, and was ready to grab it with all my worth.
Coping with Humour
Retaining my sense of humour, which would be sorely tried over the months, I cried—oh yes, I cried from pain sometimes for no reason at all as I embarked on the emotional rollercoaster. Humour, when I could muster it, was important. Too many inappropriate jokes about “the bag” to my friends. A morbid normality that friends must want to have a look at my new stoma. I mean, to me, it took on various guises: from looking like a strawberry, to a mini bum, to a wee brain. I was always surprised when they said, “No, it’s okay, Marianne, I don’t need to see it!” My bag is just an outcome of saving my life, and hey, I save a fortune on toilet paper these days. Please don’t blame me for the smell in a room—I am all contained. Not guilty!
Treatment and Recovery
My cancer was initially thought to be stage 1 or 2, but it actually turned out to be stage 3. So being classed as young at 43, they decided to throw the book at me as far as treatments went. I had two weeks in the hospital and rarely was able to get out of bed. Want to get bet me out of bed and sit in the day chair? You are having a laugh, how was that possible when I was in constant pain. Once the morphine was taken away after 3 days it was “hello” oxycontin my daily friend. But when I did push myself to get up as the saviour care assistants would take me to the shower and wash me. Giving me some dignity and cleanliness as I felt like I was in a sci-fi movie with all the drains coming out of all parts of my body. I got quite good at shuffling with my zimmer frame. I befriended some of the OAPs on the ward, being a wee whipper snapper, of course. Helping them fluff up their pillows and enjoying the daily chats, but they knew to leave me alone when I hid under my blankets trying to hide that I was constantly crying. I just could not keep a hold of my emotions, because that’s what brave Marianne does—hides behind the mask. But the pain I was in, I decided it was time to let go and stop being such a dam super hero.
Chemo and Radiotherapy
Six weeks after surgery, feeling like I had a sanitary towel shoved between my bum cheeks and not being able to sit or eat much, I lost more weight and felt like a stick. I lived off dry crackers and those horrible creamy protein drinks they give you. So now it was time to start the dreaded chemo. I started my initial three cycles of chemo out of five. Into the five-day unit for four hours of chemo, then sent home with my chemo pump attached. It looked like a baby bottle with a condom inside that gradually deflated over three days as the chemo trickled into my body. Then I would get a break and start all over again. After the three cycles, it was then onto chemo tablets and five days a week for five weeks of radiotherapy, then a further two cycles of chemo, and I completed my program. All while still recovering from major surgery that I was told would take at least two years to recover from (yeah, and some).
Chemo was not too bad. I had a tiny bit of thinning of my hair but retained most of it. However, radiotherapy managed to zap my lady garden (yay to no more self-administered Brazilian waxes—always a bonus!). I can put up with anything, but nausea is my nemesis. But thankfully the oncology team will help in anyway they can to make you feel as comfortable as possible. The anti-sickness drugs and anything else that was sore, you had no fear to ask and they delivered. The wonderful doctors and nurses had you covered in their complete control. I was in awe of these angels. Total superstars, looking after you and experts in their field. The cancer team, doctors, nurses, and even down to the tea lady just don’t get enough recognition as far as I am concerned—they are amazing.
Side Effects and Challenges – Radiotherapy
Radiotherapy was a different story, and due to the type of surgery wound, I had my radiotherapy targeted to the pelvic area. I even got some tattoos—nothing fancy, just three permanent blue dots so that I was all lined up with precision each time I got zapped (you actually don’t feel a thing). With chemo and radiotherapy, my rectal wound didn’t really get a chance to start healing, so it started to break down with a whole other range of side effects. If you are reading this while awaiting or going through something similar, remember my story was extreme and not typical. Everyone will go through their own regime and stages, and I was so surprised from talking to the nurses about how many different cancers there are (too many in my book) and with that a whole range of different individual treatments. The planning that goes into your treatment by the hospital is huge.
Support System
I have the most amazing oncologist, Dr. Ian Sanders, and the team took all my worries away. My beautiful friend Rhona, who went through a whole heap of cancer treatments, was a godsend and took some of the fear away from stages of CT scans that made you feel like you had ‘pissed’ yourself with the hot contrast fluid. To me visualising MRI scan was like being in an underground rave with the thump of the techno base. It all made a difference to me with reality and humour all rolled into one. Her showing me her ostomy bag, even though was different to mine. But I am glad there were some things I did not know about. Sadly, I lost my dear friend Rhona as I was completing my treatments and I miss her so much. She always made me look at the other sides to a story and look at the other alternatives to a narrative.
Final Stages of Treatment
By my very last treatment of radiotherapy, my side effects were so bad that I could not make it. I was totally burned on the inside and out as the effects are cumulative. Scared to drink water because I could not pee, having to strip off every time to go into the shower and hold myself as I passed what felt like shards of glass on skin that literally was peeling off. As I was wheeled out of the car being sick and straight to ward 32, I was told under no uncertain terms I was being admitted and a much-needed catheter fitted. There I was for two weeks, and at this point, Marianne’s strong walls just gave in. I was never more relieved to be in the care of the hospital. Fluids, painkillers, and a constant flow of morphine were eventually given through a driver.
Hospital Life
Of course, by this point, my oncologist was totally regretting my persuading him to remove my PICC line from my arm after the third cycle of chemo as one of the side effects is collapsed veins, a common side effect. So a port was administered into my chest. Despite it all, I managed to have some laughs and amazing conversations with patients and staff, all having a common bond in that ward 32—so many stories. The other patients used to sneak me chocolates, and that’s how I knew I was starting to recover.
It took me a while to find humour in things, but it was a solace at times, believe it or not. The other patients used to laugh at my nightly routine: closing the curtains, quietly crunching on crisps even though the thought of food turned my stomach, settling down with a million pillows to get comfortable, and watching the horror channel for some light entertainment or zoning out with meditation music. The twice daily Fragmin injections to prevent blood clots and constant taking of blood for tests made for some impressive bruising.
Don’t even ask about the disasters I had with my new colostomy bag. I often stood and bawled my eyes out while the staff, ever calm and understanding, took it in stride. I remember Rhona telling me when emptying your bag (they gave me drainables at this time) to put tissue in the toilet to prevent splash back. So I did, flushed and then the horror of what was like the magic porridge pot over flowing as I edge towards the door. Trying to hide the fact that it was me that flooded the bathroom and tried to blame it on someone else before me. They knew it was me but not a lid was batted. I was determined to manage even simple tasks like emptying my own catheter, which I had for three weeks due to a severe urinary infection. Those nurses are true angels in my eyes.
My extended stay in Ward 32 delayed my last two cycles of chemo. I became a warrior tried to be a martyr, no-one told me to ease myself off the meds. I just stopped and went cold turkey. Was this how junkies felt! Lesson learned don’t self medicate and come off things so abruptly cause your inner warrior tells you so. But I eventually got through it. By mid-August, I was done, and remarkably, I was back to work by October 2016. Completely bonkers, I know!
Family & Friends Rocks
At the time, I never questioned, “Why me?” It just was. Cancer felt like a separate entity from the moment I was first told. I had it, and now I don’t. I think this was my way of coping. I often hear, “Oh, you are so positive,” but I wish it were that easy. My physical, mental, and spiritual being took a knock, but for some who go through cancer, an inner strength emerges from nowhere. There were many times when I let people see only what I wanted them to see; they had no idea. Old friends came out of the woodwork with tea and sympathy. Friends who I had known for years, either ignored me or wanted to meet for coffee when I was “all better.” No, I don’t think so! How could they possibly understand unless they had been there themselves? But I was still me, so a good clear out was in order. It drove me nuts when people said, “Keep your chin up, oh you look so well.” Inside, I was thinking, “Aye, whatever,” as I closed down my circle of friends and family, unable to bear it. My inner sanctum of rocks surrounded me. My tolerance for people loosened off my tongue, and I had no control over it; it was actually quite liberating. Trivial stresses melted away. Life was important, even though I struggled big time at times.
Recovery and Acceptance
Recovery is a slow process, but as I write this, I know how strong I am and how grateful I am to my family and friends who were there for me through my tears, depression, when I went to sleep hoping I would not wake up. Losing my temper as I tried to come to terms with my new self and, of course, my bag. When you go through all of this, you go into survival mode, and you think, “yeah, I can handle this,” and I did. But it’s what comes after—the acceptance and the healing emotionally and physically that’s the tough bit, the reality of it all.
Spiritual Cravings
As I took time to recover, I focused entirely on myself. However, after months of physically not being able to do much, I started to get bored being away from work. It’s true that you can’t go through cancer and not change your life. It was like a tap on my shoulder saying, “Hey Marianne, you couldn’t have continued how you were—stressed, overworked, and letting life pass you by with all work and no play.” I had no option but to change, and with time on my hands, I needed something to distract me from how awful I felt.
After surgery in the recovery ward, I had a profound spiritual experience , some say it was the drugs but I was convinced I was dying. I could hear and see things that were so real it jolted me back to the now. It was time to reconnect. I embarked on a series of online courses and couldn’t get enough of colour, angel, and crystal therapies. I explored shamanic healing and even completed my Reiki training. I didn’t do this for my business but for myself. I was like a sponge, thirsty for knowledge and eager to escape my own headspace.
Reflecting on my journey, I realised that the old me would have laughed at the future me for embracing what I once considered “airy-fairy” ideas as I demanded science and facts. This transformation was a revelation, and I was loving it. It provided the distraction I needed and enriched my life in unexpected ways.
Henry
While away from the business to recover, I developed a thirst for knowledge and reignited my passion for painting. At our first oncology appointment, I met Henry, a man whose influence on my life would far surpass any connection I had felt before.
Henry and I, despite being the same age, had experienced similar treatments, although he battled secondary cancers. As a professional medium and artist, we quickly formed a deep friendship, becoming what he fondly referred to as “chemo buddies and soul family.” Henry’s encouragement led me to pick up my paintbrushes after 25 years, and here are some of my works on my Art by Marianne FB. His art inspired me to just do it and don’t overthink. Together we frequented the local craft shops, engaging in profound conversations and restoring our spirits.
Our regular “dirty chai” meet-ups in town were filled with laughter and discussions about life’s quirks, including our experiences with colostomy bags. In Henry, I found someone who understood and defied cancer alongside me. Sadly, Henry passed away in December 2016, leaving a void that still weighs heavy on my heart. Yet, the brief time we shared was the most enriching period of my life, marked by a concentrated friendship I will forever cherish.
Henry continues to inspire me daily, his presence felt despite his physical absence. Unafraid of death, he welcomed it as a return to the universe, his “home.” Even on the last day we saw each other in ward 32, he maintained his humour, joking about “haunting” me in the future as he knew I loved horror films. His daily vlogs and wise words continue to impact many, preserved on his Facebook page, “Who’d Have Thought It!“
A Refreshing Break in Edinburgh
In November 2017, after adjusting to working only two days a week due to persistent exhaustion and navigating through the challenges of early menopause induced by cancer treatments, I decided to treat myself to a few days in Edinburgh. I meticulously planned every detail of my getaway, ensuring ample relaxation time, reunions with old friends, and a chance to indulge in tourist activities. During my chemotherapy recovery phase, I had found solace in regular massages and reflexology sessions locally which provided much-needed relief. However, the idea of visiting a spa during my chemo and radio treatments was not appealing as the thought of someone touching me was a no no. Just the idea of physical tough when every nerve in my body was screaming, would not have happened. Despite my nerves about trying a new therapist on my solo trip, I booked a facial and reflexology session at a spa well in advance. The anxiety of even travelling on my own was immense but I just put my big girl pants on (literally) and off I went on the train.
Upon arrival at the spa, my excitement quickly turned to shock and dismay as the senior therapist informed me that she couldn’t perform reflexology due to my cancer history. Her outdated and insensitive remarks threw me back into the emotional turmoil of my cancer journey, stirring up intense emotions. Despite feeling shaken, I opted to proceed with the facial, declining the offer for a manicure.
Throughout the session, the therapist’s discomfort was palpable, and her attempts to engage with me afterward felt insincere, solely focused on selling products. This experience prompted me to vow that no one should ever feel as I did that day. It underscored the importance of prioritising customer experience in my own business, ensuring that all clients feel respected and valued, regardless of their backgrounds.
Enhancing Client Care: A Collaborative Effort
Reflecting on my disappointing spa experience, I collaborated with Jennifer Comiskey, the owner of The Sunflower Room. We trained together at college in 1992 and wanted to explore ways to enhance our salon and spa offerings. Through extensive research and consultation with industry experts, we identified specialised oncology well-being treatments and skincare by Jennifer Young as an ideal fit for our clientele.
Bringing together ten therapists from our respective businesses, we arranged for post-graduate training. The experienced trainer flew up to us from London, specialising in oncology well-being. With my experience as having had cancer, being a client and a therapist gave a unique perspective to share in training. The training equipped us with the knowledge and skills to cater to clients undergoing cancer treatments, ensuring their safety and comfort during spa sessions. We meticulously established protocols to provide a safe environment for clients undergoing active and post cancer treatments. We are super proud to have been the 1st in the area with Jen and her staff to offer these treatments.
Appreciation and Moving Forward
So here we are in 2018 and we have completed our specialised training I am in such a unique position as a patient, client, and therapist. I understand some of the physical and mental aspects that cancer can bring and the effects it can bring on the skin. I am by no means an expert but I do understand as does Ellie, Inner Balance therapist as she has seen me through all the stages. She was an amazing support letting me recover without the worry of keeping the business going. She stepped up, grew up, and is such a beautiful soul and I am so proud of her. So we created a quiet space to focus on your well-being, just a small step to bringing a little bit of normality that we crave when going through cancer. I had moments where everyone and everything was driving me bonkers and I just wanted to say to everyone… bugger off just leave me alone which I actually did say on many occasion, it was a way of coping with the whole reality of my own situation.
All we need now is for the beauty industry to catch up and join the growing salons and spas wanting change in this industry. I, of course, could write so much more on this topic but this is just the beginning and I am grateful for every day.
A final note
It’s quite surreal to think that despite bowel cancer, my family history is actually cases of breast cancer. I’ve been diligent about getting mammograms and regular check-ups since the age of 30, and now, at 46, I continue to see my oncologist every six months following a CT scan. Their care extends beyond just physical well-being; they provide invaluable support for my mental health as well.
The importance of awareness cannot be overstated. Listening to your body and recognising any changes that from the norm is crucial. Don’t brush off symptoms and push concerns to the back of your mind. If something feels off, don’t hesitate to seek medical advice. Cancer doesn’t discriminate based on age.
On a final note, if you’re over 50 and have been putting off that dreaded poop sample test, please take action now. And if you’re younger, don’t follow my example of delaying a visit to the doctor.
Embrace life fully, let go of unnecessary stressors, and cherish your loved ones above all else. In the grand scheme of things, it’s the meaningful connections that truly matter.
With heartfelt affection,
Marianne x
