At 54 I was diagnosed with stage 4 bowel cancer. It was May 9th 2016. The day after Mothers’ Day. The prognosis…. 2-3 years, maybe 4 with chemo.
Right from the outset, I didn’t buy into being a ‘statistic’. In a bag full of apples, not every apple is the same.
My husband and I had separated 2 years earlier in 2014 – after 30 years together. For this 1st two year period, I was getting over the grief of lost dreams, and working tirelessly at ‘finding myself’ again. By February of 2016, I was feeling empowered and on top of my life – spiritually, emotionally, and physically.
I had started regular juicing detoxes, so when my bowel motions became pencil thin, I thought it was due to juicing. Although my diet was always pretty good, I had never eaten much fruit and now it was a regular part of my diet, so I went from a lifetime of moving my bowels twice a week, to now going to the toilet every other day.
Again, I credited the juice. Detoxing also meant I was losing weight, but not alarmingly so. Everything was good. There was a logical reasonable explanation for all the physiological changes taking place.
Having gone through menopause at 50, some intermittent vaginal spotting over Xmas of 2015 concerned me enough to seek medical advice. My pap smear was clear, my blood tests were clear. An ultrasound found a novarian cyst which necessitated a simple curette, and we supposed it to be the reason for the bleeding. Now, restored to health again, I quit my job at the university in February 2016 and headed to India for a month. It was my plan to enjoy a semi-retirement traveling the globe.
The light spotting continued while in India, so after returning, my gynaecologist suggested a hysterectomy ‘just to be on the safe side’. During the total laparoscopic procedure, my ovaries looked irregular and enlarged. A week later I was told there was wide metastatic adenocarcinoma of both ovaries and cervix.
Three days later, the day after Mothers Day, a colonoscopy found the primary tumour in the Transverse colon, a second tumour in the right hemi, and another on my appendix. TNM Stage: pT4a, pN1c, cM1b. Stage Group: IVB. I was scheduled for surgery the same afternoon.
I had a right-hemi colorectomy and appendectomy. No colostomy bag was needed, and I recovered quickly.
Three weeks later I commenced 12 rounds of Folfox Chemo through a port which had been implanted under the skin of my chest. Generally, a few hours sitting in the chair and a bottle to take home for 2 days. My mother-in-law made me some groovy pouches to carry the bottles in – big enough to fit the chemo bottle, my iPhone, and money, so I looked ‘normal’ when out and about.
Lucky me, I handled chemo really well. I was given plenty of medications for anti nausea ‘in case’ I needed them, but I never had a problem with nausea. It was June when chemo started, so very mild neuropathy in my fingertips was a problem if I went walking without gloves on when it was cold or if I picked up cold items from the fridge section at the supermarket. Oh, and I tried to eat ice-cream once, but my entire mouth went numb! So I dribbled the ice cream from my gaping frozen mouth.
Also, in the beginning of my chemo, I had a bad reaction during one session, (felt faint and sweaty and nauseous) so the oncologist adjusted the dose accordingly and I was good to go again. At every chemo session, the nurses closely monitored what was happening and the oncologist adjusted the dose. I always felt very confident in the medical team that looked after me.
On another occasion, one of my legs went completely numb for a couple of hours following chemo. I had to drag it behind me as I walked, which felt very strange, and fortunately only happened once.
I rinsed my mouth regularly, which they say to do after every meal, to prevent mouth ulcers. If I did get ulcers, I rubbed some ‘chemists own’ brand of antiseptic cream in my mouth and it worked instantly. That’s probably not a good recommendation, but it worked for me. My oncologist said to rinse with bi-carb and salt in a small amount of water – the bi-carb is a wonder.
Initially I experienced a mild metallic taste in my mouth on day 5 of chemo. As the side effects of chemo are cumulative, by the time I finished 6 months later, that metallic taste was lasting all day for 5 full days at a time. It was the only side effect to really bother me. Even water was unpalatable! I would stay in bed nearly the whole time so I wouldn’t have to eat anything, and of course this made me lose lots of weight.
On my good days, I ate as much as I could so that I would compensate for ‘no food’ days – this meant some extra carb loading, and abandoning my otherwise fruit and veg based diet. I wrote a blog about all the things that helped me ‘diet wise’ during my chemo, so check out the link that’s attached below.
While I was undergoing chemo, most people didn’t even know I had cancer. I still looked good and felt great. Physically and emotionally. My diet remained reasonably healthy, and I often exercised up to 2 hours per day. Not frantic gym junkie style exercise, but a daily walk to my yoga class and back home again, yoga was an hour, and I used ‘resistance bands’ to add muscle strength to my routine at least 3 times a week. If there were days when I really didn’t feel like exercising, I at the very least did the resistance bands.
I live near the ocean lucky me, so my daily exercise routine always took me along the waterfront which meant my emotional well-being was also being catered for.
So chemo finished November 2016. And life got back to normal. In 2017, 3 months after chemo finished, I again headed off to India for one month – this time to an Ayurveda Hospital, to detox from the chemicals of chemo.
Ayurvedic medicine (“Ayurveda” for short) is one of the world's oldest holistic (“whole-body”) healing systems. It’s based on the belief that health and wellness depend on a delicate balance between the mind, body, and spirit. Its main goal is to promote good health, not fight disease. Again, I have written a blog about my Ayurveda Panchakarma experience.
When I returned, my ex husband was diagnosed with lung cancer. I nursed him until he died – 5 weeks after his diagnosis. Despite being cancer free for that whole year, the stress of this was huge, and in January 2018, my cancer returned. I’d maintained such a positive attitude throughout, that when it returned I was shocked! I’d actually convinced myself that I was capable of beating cancer. I still believe that.
My attitude is, I can’t control the fact that I have cancer, but I can control how I approach every day going forward. It’s about knowing what I can control, and letting go of what doesn’t serve my highest good.
I also have a blog that talks extensively about my attitude towards cancer. Cancer has created so many blessings for me. My entire life changed for the better. You’ll have to read the blog to find out why…..
So… while tending to my 3 grieving children and managing my husband’s complex estate, I began chemo again. This time Avastin was added to the mix. Fortunately, I only had 4 rounds before surgery started. Unlike the Folfox, Avastin caused my hair to start thinning really quickly, so I cut it really short.
June 6th, 2018, I underwent a targeted chemotherapy called HIPEC (liquid chemo poured into the stomach cavity). Normally an operation that lasts 8-12 hours, I was out after 5 hours! I had an Omentectomy, Cholescystectomy, Right & left iliac fossa Peritonectomy. In other words, I lost my stomach lining! The good news is that there were 7 tumors found, but 5 of them were non-malignant! I swear, somebody is looking down on me and sending miracles my way.
To be honest, this operation knocked me around a bit. For several months I had to get used to eating very small meals several times a day, and severe acid build-up in the stomach left me vomiting more than I’d like to admit. I simply felt ‘blah’ and my usual positive disposition was greyed somewhat.
By January of 2019, I was fully charged again and ready to embrace life. In April I spent a month travelling through Eastern Europe, and now have been planning my workshops, getting back into my counseling work, volunteering around town.
Is there anything I wish I knew at the time of my bowel cancer diagnosis? I’d say do enough research to understand the language being used by your medical teams. This will help you know what questions to ask and help you understand what they’re talking about – you can be in a foggy head space so it’s easy to miss all the details. Take someone with you to your appointments so that you have a second set of ears – better still, ask permission to ‘tape’ what they say so that you can listen back later. Did you know there’s a recording device on your iPhone?
Don’t get upset with people who make stupid comments because unless you go through this experience personally, you simply don’t understand. Be prepared for people to abandon you during treatment, but accept that there are many reasons why this happens and you need to not take it personally.
If you don’t have a good support network around you that will allow you to speak openly about what you’re feeling (anger, grief, despair etc.), then call Bowel Cancer Australia, or join the many FB groups offering support to cancer survivors and their family members. If you have children, they will all respond differently depending upon their ages, so don’t expect to have their support, but seek an open discussion if possible.
Also be prepared to experience some depression when treatment is finished. During treatment, your whole life seems to revolve around your cancer. You may have more attention lavished on you than you ever experienced normally in your life. So when treatment finishes, and everyone sighs relief and they go back to their normal lives, you can be left feeling alone. It’s quite a weird experience.
Be sensible and get your affairs in order - Wills, Power of Attorney, Advanced Health Directive. With the administration side of dying now taken care of, you can begin making all the changes necessary to heal the relationships around you. Who needs to be forgiven? Who needs to hear “I’m sorry”. Did you tell the important people in your life that you love them every day? Are you grateful for all the little things that bless you from the moment you open your eyes?
I have to say, I’ve felt extremely fortunate all the way through to have the most amazing team of specialists working with me. I’ve never had to wait for procedures to be performed, have experienced little in the way of negative side effects, have a genetically inherited strong constitution that allows me to recover quickly, and… I have stoic resilience in bucket loads. This means that I look for the blessings in the adversity I face and recover quickly on an emotional level when life throws me a curve ball.
I also have a belief that death is as much a part of life as birth, so I’m ready if it’s my time. Again, how I choose to spend my days is what I have control over, and I’m not wasting energy on anything negative.
I wish you all the best on your own journey
If you want to read all about the blessing I found through having cancer, check out my blog ~ - https://idleconversations.wixsite.com/rosmcmaster/blogs