Everyone I’ve met deals with this disease in their own way, many very differently to me. These are some of the things I do to cope ;
You’re not alone. The Cancer Club is bigger than you think, full of people that want to help, many of them professionally trained. When I got my latest prognosis, I was devastated. My wife found The Mulberry Centre (a local support organisation) and they psychologically picked me up off the floor.
I also found the forum at Bowel Cancer UK – that has been unbelievably helpful – just talking to other people going through the same pain has been very comforting, aside from all the practical help you can find. A few places you can go for help…
I have struggled with this a bit. Not sure if it’s a man thing but I’m used to helping others, giving advice, supporting my family and others etc. So, when other people are nice to me, or offer help I’m not really sure how to handle it. Suffice to say, when people offer, there is no shame in accepting kindness and any practical help that comes your way
This is an important one for me. But I am careful what I read; I don’t google too much, and definitely don’t look at mortality rates and other depressing information. I know the odds are not in my favour.
I have tried to look at for more positive material. Looking for inspiration and hope. Seeking out ways to increase my odds.
There is so much information it can be overwhelming, so I have focussed on material that resonates with my belief on how to live with this disease
Some of the books and websites that have helped me in different ways;
Radical Remission, Kelly Turner. www.radicalremission.com
Everything you need to beat cancer, Chris Woollams. www.canceractive.com
The Rainbow Diet, Chris Woollams
Anti-Cancer, Dr Sevan Schreiber
F@&% You Cancer, Deborah James
Heal Your Body, Louise Hay. www.hayhouse.com
Make a plan
I love a plan, can’t help myself. Also love a list. I’m one of those types!
The thing for me is that if I write things down, I don’t have to remember stuff. And I enjoy crossing off the things I need to do, it’s a visual thing and gives me some satisfaction.
I have a few plans – a long term, I want to live until I’m 90, plan, with every major event like 18th birthdays, 21st birthdays, graduations, possible marriages’, possible grandchildren, 50th birthdays, golden wedding anniversaries, places I’d like to visit, work and life goals that I want to achieve, hobbies id like to do, projects I want to complete. It’s a strong reminder of why I need to keep living
I have a 3-month plan which is simply based on my chemo cycles. I typically have 6 fortnightly cycles, a scan, the results, and then hopefully break of about 8 weeks. It’s the break that I try and plan some nice things in – a holiday, a party or two, the theatre. Just something to make sure my “time off” has some things to look forward to.
The last plan is fortnightly, revolving around the chemo. I’ve tried to create a routine around my awareness raising work, treatments, (chemo and alternative things like HBOT and reflexology), exercise, meditation, and social events; I try and make sure I get out with my pals once a week, and with my wife and kids once a week. I try and play golf once a week and go to yoga a few times.
I’m also aware that plans always seem to change, especially on chemo, and some days I just want to sit and stare. Which is ok too!
Again, I’m not a great talker. I’m very happy with silence, I tend to use as fewer words as possible. I like my own company too, very happy eating dinner with a book somewhere. I think I’m quite shy. I like to be under-stated, hate attention. I’ve really struggled with doing the website and the social media activity – it’s just not me but the desire to try and do something positive overrides my embarrassment at being a little exposed publicly
However, I am trying to improve my ability to talk to other people about what I’m going through. I’ve tried to find other people, typically men of a similar age, so that we can share our stories. And guess what, in the few cases where I’ve succeeded in doing this, it has really helped.
One of the important objectives I’m trying to pursue is to get more men talking about their cancer. I am so admiring of the way the ladies have, for example, made breast cancer so ingrained in our psyche. Most of the people I meet with cancer have been women, nearly all the senior management at Bowel Cancer UK are women. Us men need to step up a bit and break down the stigma we have in openly discussing our problems and challenges. It really is “good to talk”
Sense of Purpose
I made a decision to stop working following my “incurable” prognosis in March 2018. I have worked non-stop since I was 17, pretty hard in my opinion, and have been reasonably successful. Most of my career has been is some sort of sales capacity, in the tech industry, I have worked in small, medium and large companies, including starting and running my own business on a couple of occasions.
I made the decision to stop simply because I want to spend my time healing, cutting out as much stress as possible, and to spend as much time as possible being with the people I love and doing things I enjoy.
However, I am discovering that it’s not that simple, and a gap in my life is appearing and growing. I am missing the sense of purpose and routine traditionally delivered by my work. I am missing the camaraderie and banter with colleagues. I wasn’t expecting this – I figured I’d be happy in my “retirement”
And so, I’m getting busy, I’m finding a new sense of purpose (apart from trying to survive this annoying disease) and its starting to take shape in the form of raising awareness of Bowel Cancer and helping to ultimately reduce the number of deaths from the illness. I’m also loving the creativity – I find it is a stress reliever – I love editing movies and coming up with ideas on where I can take this project
Possibly a bit cliché, and a little obvious and I’m not entirely sure where this goes, but it has certainly awakened a fire in my belly and something to get really excited about.
Do things I enjoy
I thought this would be very straight forward, but I really had to give it some thought. When you boil it down, the most important thing is to spend quality time with the people you love, and to spend quality time with myself doing the things I love.
Focus & Balance
You can’t do everything well in my opinion. I set off on a mission at first, trying to have every treatment, taking every supplement, doing every eastern exercise possible, eating the strictest diet, and drinking nothing but water. It was simply not sustainable.
So now I try and focus on what works for me – there is still a lot to do, but now I give myself a bit of slack – I have ended up with a simple routine and a balance between the right level of exercise and treatment, and a diet which is more 80:20 between healthy and a bit naughty. Back to the concept of doing many things slightly better to create marginal gains and increase my odds of survival.
Get on with It
At the end of the day. I need to live my life as best as I can, with as much positivity and enjoyment as I can. I know what I need to do, the diet’s stuck on the fridge door, the treatments are scheduled, and the lists and plans are written. I have a view on where I need to go to emotionally, what goals I want to achieve and so now It’s time to get on with it
Live Love Laugh