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. If you are reading this on your mobile then I apologise you may get rsi in your finger from scrolling. So let me begin…
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 any more. Extreme constipation and blood when going to the toilet, extreme tiredness and pain in my rectum and abdomen. Weight loss well that was easy I was super healthy and was running 5k regularly so the weight loss I never associated with anything more than getting fit and being super healthy in my diet.
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 I knew I would have to get a colostomy bag. The surgeon would try her best for a temporary one but it all depended on the safe margins around the cancer and we would not know until I was on the operating table. The initial findings of being either stage 1 or 2 in actual fact turned out to be stage 3. Due to my age being rather young at 43 they decided to throw the book at me so to speak as a precaution. So colon surgery, full rectal removal and as I woke from surgery the first question I asked was “the bag it 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 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 its 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!
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 had started my initial 3 cycles of chemo out of 5. Into the 5 day unit (oh 5 is the magic number I think) 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. So many things to say about the chemo I had but I will do another blog at another time.
After the 3 cycles of them it was then onto chemo tablets and 5 days a week for 5 weeks 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. Although 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 the anti-sickness drugs and the wonderful doctors and nurses are super stars at looking after you and experts in their field. The cancer team, doctors, nurses and even down tho the tea lady just don’t get enough recognition as far as I am concerned they are amazing.
Radiotherapy now that 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 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 my story is a bit extreme and not typical so I will just touch on some things. Everyone will go through their own regime and stages and I was so surprised from talking to the nurses 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 was lucky that I also had a friend that went through similar and she took some of the fear away from stages of CT scans to MRI it all made a difference to me. But I am glad there was some things I did not know about.
So by my very last treatment of radiotherapy my effects were so bad that I could not make I was done as I was wheeled out of the car and straight to ward 32 and was omitted and a much needed catheter fitted and there I was for 2 weeks with burns inside and out among other things. I was never more relieved to be in the care of the hospital. Fluids, painkillers and a constant flow of morphine through a driver. Of course by this point my oncologist was totally regretting me persuading him to remove my pic line after the 3rd cycle of chemo as one of the side effects are collapsed veins a common side effect. 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. If took me awhile to laugh at things but it was a solace at times believe it or not.
The other patients used to laugh at me with my nightly routine closing the curtains, crunching as I tried to eat quiet 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 on many a time while the staff just took things as a matter of fact. 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 cycle of chemo but I eventually got through it and from end of March 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 hear often “oh you are so positive” but I wish it was that easy. My physical, mental and spiritual being took a knock but those that go through cancer you find this inner strength from no where. Yes there was so many times where I would just let people see what I wanted them to see how could they possibly understand unless they had been there themselves. It used to drive me nuts people saying “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 were around me. My tolerance to certain 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 me but months of physically not being able to do much I started to get bored being away from work. It is so very true you cant 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, over worked 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 from how crap I felt. I had an experience after surgery that made me look at the more spiritual aspect to 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.
I met the most wonderful man at our first oncology appointment and I knew we would be destined to meet again and 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 and I have never met anyone so posh in all my life, “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. I was inspired by his paintings and 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 and there is 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 the 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 his him around teaching me from wherever he is. We was not frightened of dying he was happy to be going back into the universe and “back home” as he put it. His humour right until the last day I saw him 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 inspiration to many and had so much wise word, his Facebook page is still up and you can find it here.
So lets jump forward a year and its November 2017 and my routine at work is 2 days a week. Still exhausted but having to accept my bodies limitations and the joys of going through forced early menopause, that is a book unto inself 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 over working returning and doing too much so I decided to take myself away and booked myself 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.
So going to someone new for my wee trip I spent ages looking for a spa and had booked well in advance a facial and a 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 me 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 what 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 wont go to deeply into the conversation but it left me feeling shocked and upset at the ridiculous comments that were coming out of this therapists 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 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 a 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 from The Sunflower room as we got our heads together to look 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 getting 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. Let me tell you a little bit about her background:
Jennifer Young has a BSc (Hons) in Biology and is an experienced Micro-Biologist, a qualified Nutritional Therapist, an Associate Member of the Royal Society of Medicine, qualified Aromatherapist, Beauty Therapist and Product Formulator.
Jennifer uses her nutritional knowledge to inform her skincare formulations. Jennifer’s expert comments are often seen in National Newspapers and magazines. Her book, Recognise Yourself, was published in September 2015. The guide to beauty, hair,style and well-being for cancer patients is the most comprehensive ever published.
Jennifer started working with her local hospital to create the Defiant Beauty product range about 8 years ago. The work was done at their invitation; some ladies who were going through treatment at the hospital asked her to create a skincare range for cancer patients. The lead nurses for chemotherapy and radiotherapy helped.
So here we are in 2018 and we have completed our specialised training and 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. A quiet space to focus on your well-being is 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 occassion 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 to 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 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 to the back of your mind. Please don’t hesitate to see your doctor as it may just save your life cancer does not pick an age group. Also on a final note if you are 50 plus and you have had that dreaded poop sample test to do, please do it now!
You will find some useful info on Bowel Cancer UK website.
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