Into the bowels of beauty
It is going to be a long one, so grab yourself a cuppy and as I write from the heart, honest and open about my story, it did take me quite a while to get to this point, and here in 2018 I feel I can tell my story. If this blog helps just one person going through similar or may help a family member then that is all I could ask for.
January 2016 is a good place to start when I was diagnosed with bowel cancer. To say it was a shock to the system was putting it mildly. Was I hearing correct? 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 after 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 goes from there.
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 6 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 well that was easy so I thought I was super healthy and was 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.
Let’s jump forward 6 weeks and I am undergoing an 8-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.
I remember the fear of having to walk down to surgery with my compression socks and goonie 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 as I felt like a small child alone and scared and the floodgates opened. As I dipped my head trying to hide this from the nurses and staff walking about a nurse clocked me and told me to hold on she was going to get someone. Next one of the anaesthetist came to see me, his kindness of words holding my hand really meant the world as he prepared me for what to expect but realness in his words that I would be ok. But made me laugh and I was ready for “cocktail o’clock” as the drugs were administered. So colon surgery, full rectal removal and as I woke from surgery and I freaked out I was so hot and tried to rip off all the blankets and I think at this point they knocked me out again. The first question as I awoke again I asked 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 as no more surgery and more important no more colonoscopy and that vile liquid they make you drink. 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.
Retaining my sense of humour which would be sorely tried over the months and cried, oh yes I cried sometimes for no reason at all. Humour for me was important when I could muster it and 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, times a mini bum to a wee brain. I was always surprised when they said: “na it’s ok 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 and please don’t blame me for the smell in a room I am all contained – not guilty!
So 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 I very rarely was able to get out of bed. But when I did and could shuffle with my zimmer 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 cannot describe even doped up on meds.
Six weeks later after surgery and 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 which I wasn’t looking back. Living off dry crackers and those horrible creamy protein drinks they give you. So now it was time to start the dreaded chemo. I had started my initial 3 cycles of chemo out of 5. Into the 5-day unit for 4 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 3 days as the chemo trickled into my body, then I would get a break and start all over again. After the 3 cycles, it was then onto chemo tablets and 5 days a week for 5 weeks of radiotherapy then a further 2 cycles of chemo, and I will have completed my program. All while still recovering from major surgery that I was told would take at least 2 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 and the anti-sickness drugs and the wonderful doctors and nurses had that well under control. 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.
Radiotherapy now 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 3 permanent blue dots so that I was all lined up with precision each time I got zapped (you actually don’t feel a thing). Of course with chemo and radiotherapy my rectal wound didn’t really get a chance to start healing so started to break down with a whole other range of side effects. If are reading this while awaiting or going through something similar remember the story I was told was extreme and not typical so I will just touch on something but feel free to skip past. 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. I have the most amazing oncologist Dr. Ian Sanders and the team took all my worries away. My beautiful friend Rhona that went through a whole heap of cancer treatments was a godsend and took some of the fear away from stages of CT scans to MRI it all made a difference to me so showing me her ostomy bag. But I am glad there were some things I did not know about. Sadly I lost my dear friend Rhona and I miss her so much, my friend that always made me look at the second sides to a story and look at the other alternatives to a narrative.
So by my very last treatment of radiotherapy, my side effects were so bad that I could not make I was done. 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 certain terms I was being omitted and a much-needed catheter fitted, there I was for 2 weeks and it 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 was eventually given through a driver. Of course, by this point my oncologist was totally regretting my persuading him to remove my pic line from my arm after the 3rd 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. It took me a while to laugh at things but it was a solace at times believe it or not. The other patients used to laugh at me for my nightly routine of closing the curtains, and crunching as I tried to eat quietly my crisps as the thought of food turned my stomach as I settled down with a million pillows trying to get comfy as I watched the horror channel for some light entertainment or just tried to zone out with some meditation music. Don’t even ask about the complete disasters I had with my colostomy bag as I just stood and balled my eyes out many a time while the staff just took things as a matter of fact as I flooded the bathroom and tried to blame it on someone else, even though they knew it was me. Also the sheer determination of simple things like emptying my own catheter which I had for 3 weeks. Those nurses are true angels in my eyes. So my added stay in ward 32 delayed my last 2 cycles of chemo but I eventually got through it and from the end of February until mid-August I was done and back to work in October 2016 – I know completely bonkers eh!
You know at the time I never questioned why me, it just was. I had cancer a separate entity from when I was first told. I had it and now I don’t anymore. I think it was my way of coping. I hear often “oh you are so positive” but I wish it was that easy. My physical, mental and spiritual being took a knock but for some those that go through cancer find this inner strength from nowhere. Yes, there were so many times when I would just let people see what I wanted them to see they had no idea. Old friends came out of the woodwork with tea and sympathy. I even had friends of many years that ignored me and then 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? It used to drive me nuts that people said “keep your chin up oh you look so well”. Inside I was aye whatever as I closed down my circle of friends and family as I could not bear it, so an inner sanctum of my rocks was around me. My tolerance to people certainly loosened off my tongue and I had no control over it, it was actually quite liberating. Trivial stresses just melted away, life was important even though at times I struggled big time.
As I took time to recover I totally focused on myself but after months of physically not being able to do much, I started to get bored being away from work. It is so very true you can’t go through cancer and not change your life. It was a wee tap on my shoulder to say “hey Marianne you could not have continued how you were, stressed, overworked, and floating through life as it passed by all work and no play”. I had to change I had no option and with time on my hands, I needed something to distract me from how crap I felt. I had a very strong experience after surgery that made me look at the more spiritual aspect of my life, it was time to reconnect. I embarked on a series of online courses and I could not get enough of colour, angel, and crystal therapies. I was looking at shamanic healing and I even did my Reiki training. I did not do this for my business but for me, I was like a sponge thirsty for some knowledge and out of my own head space. What was happening I thought if the old me had looked at the future me, it would have rolled about laughing at things I would have classed as “airy fairy”, give me science and give me facts. This was all a revelation to me and I was loving it and it was the distraction that I needed.
A thirst for knowledge and painting as I spend time away from the business to recover. I met the most wonderful man at our first oncology appointment and I knew we would be destined to meet again, little did I know the influence he would have on my life. His name was Henry…
We were the same age and went through similar treatment but he had secondary cancers. A professional medium and artist we were destined to be great friends with a common bond as we became “chemo buddies and soul family” he used to tell me. A great teacher and he encouraged me to take up the paint brushes again after 25 years (here is some of my work). I was inspired by his paintings and on many a trip together we took to the local craft shop for supplies and put the world to rights. Our regular meet-ups in town for a “dirty chai” and the endless talks about poops and our colostomy bags There was always something positive out of the most surreal of situations. Having someone that I could talk to that could relate and stick two fingers up to cancer. Sadly Henry passed away in December 2016 and I still miss him terribly. But the short time we had was the most richest part of my life a real concentrated friendship that I will always cherish. He inspires me every day and even though he is not here physically I feel him around teaching me from wherever he is. We were not frightened of dying he was happy to be going back into the universe and “back home” as he put it. His humour was right until the last day I saw him when he was omitted to ward 32 and he knew it was the last time we would see each other physically. But he told me he would see me again as he was coming back to “haunt” me. That still makes me laugh to this day as he knew what a massive horror film fanatic I am. He vlogged his story every day and was an inspiration to many and had so many wise words, his Facebook page is still up “who’d have thought it!” and you can find it here.
So let’s jump forward a year and it’s November 2017 and my routine at work are 2 days a week. Still exhausted but having to accept my body’s limitations and the joys of going through forced early menopause, is a book unto itself for another time. I spend the rest of my time working on the business and not so much practical in it. I could feel my old bad habits of overworking returning and doing too much so I decided to take myself away and booked myself a few days to Edinburgh. I had planned it to every detail, chill time, meet up with some old friends and just be a tourist for a few days. After I had finished my chemo when I was up to it I had been going for regular massage and had some reflexology it was so good as the thought of going to a spa during treatments was not appealing at all. So going to someone new for my wee trip was extremely nerve-racking as I had developed a bit of a fear of being out on my own. I spent ages looking for a spa and had booked well in advance a facial and reflexology would just be the ticket. After walking all day I could not wait. I got to the spa early all excited as I sat and took in the surroundings and looked at the nice products as I thought to myself I will purchase after my spa treatments. As I filled out the consultation card I just noted that I had a colostomy bag not that they needed to know but that is totally honest and real. I noted I had cancer and my last chemo was 15 months prior and hormone imbalance with menopause as I am sure the therapist could tailor my treatment.
So as I was taken to the treatment room but which was to happen I did not expect. “I am sorry but I will not be able to do your reflexology as you have had cancer and I will have to adapt your facial.” I won’t go too deeply into the conversation but it left me feeling shocked and upset at the ridiculous comments that were coming out of this senior therapist’s mouth. It made me jump right back into my cancer time. It brought such emotions to the surface, I was me and I did not want cancer to dictate to who she thought I was. Outdated, misinformation, and policies and I was shaking with emotion. I wanted to run out of there and cry but instead, I had the facial and declined the offer of a manicure, the damage was done I just did not want to be there. The therapist was oozing awkwardness and only at the end when she wanted to talk to me she just wanted to sell me products. Mmm, I think you will find that will be a big fat NO! I made a promise to myself that day that I would never ever want anyone to feel like I did. I pride myself on our customer experience but this was just horrible. Although I am grateful in a strange way for this experience as it made me look at my own business and what I could do to enhance what we offered to our amazing clients no matter the background.
I carried out extensive research with my fellow therapist Jennifer Comiskey owner of The Sunflower room as we got our heads together to look at what could be done. We researched other spas and companies until we found the exact fit for us and the way we wanted to move forward in our own salon/spa. With lots of planning, we got 10 of us therapists together combining our businesses we were delighted to welcome a trainer from London from Jennifer Young. Specialised oncology well-being treatments and skincare designed for those living with the effects of cancer and beyond in the post-graduate training and having me able to give lots of real facts to the training gave us all a different understanding. We set up one of our treatment rooms to follow strict protocols to keep any of our clients who were going through active treatments that they would be safe with us.
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 my 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.
The bizarre thing is even though I had bowel cancer, I have a family history of breast cancer, and I have been getting mammograms and checked since I was 30, I am now 46. I now see my oncologist every 6 months after a CT scan and they take such good care of me not just physically but mentally too. Awareness is key, listen to your body and changes out of the norm, don’t do what I did, and put it to the back of your mind. Please don’t hesitate to see your doctor as it may just save your life as cancer does not pick an age group. So on a final note if you are 50 plus and you have had that dreaded poop sample test to do, please do it now! If you are not of that age please, please don’t do what I did and delay seeing a doctor.
Grab life, don’t stress about the silly things, and remember to keep those close that is the most important. You can have lots of pebbles but all you need is a few rocks.
Much love,
Marianne x
