I have to say that as a stoma bag user on a daily basis... Mind you, it’s not like you can take a day off, or just go back to the good old times - no, such flashbacks are sadly the stuff of dreams these days. Although, unless you have been through this malarkey, it is very hard to imagine a situation where you wish to recreate a close encounter with an Armitage shanks.
Mind you, a few weeks ago, when I was part of a little stoma research group, I was quite surprised at how a few members did wax lyrical on how much they missed the good old days, of going for what used to be called a Number 2. The thing is that we take everything for granted until we can no longer do it, and then the tide of distortion and happy memories fills in gaps that sometimes are not utterly accurate.
This blog is deliberately focusing on what some might in fairness think is a taboo topic, which is about living with cancer. In my case, living with level 4 bowel cancer, and also about living with a stoma bag, and accepting these challenges that actually allow you to live a rich and full life if you choose to accept and overcome the challenges and pitfalls. And that ultimately is the simple choice.
Of course, every single person's journey is unique and individual and we all deal with it differently. I chose my own journey from the moment I was diagnosed.
I never doubted that I was no matter what simply going to give up or give in. That is not the person I am. Indeed, I feel very blessed that in my life I had so many positive and good influences that over the years helped shape my attitude to life, and everything that goes with it. Possibly the biggest influence was my passion with Shotokan Karate Do.
I have thought long and hard about this. Especially in those long insomnia-filled nights where your thoughts can be at their most evocative, but also rich and creative, and occasionally quite dark, if you are not resolute. I think sometimes: how would I have coped if I had not been training for all these years? Would I have survived the initial tumour operation? After all, I was only apparently 4 weeks from death, so I was told. Of course I had no idea, and maybe just as well looking back. However, as my surgeon Dr Karen, and cancer consultant Dr Peter confirmed, because my fitness levels were good, it was without doubt a big help, not just in coping with the surgery, and the sepsis scare that followed it. But, it was also in the speed of recovery, and the desire to get back walking in the hills, as soon as I could stand up. The same desire to get back in the dojo within 3 weeks from the operation and train in karate, even though walking was a challenge. I did not care, it was about mindset, goals, and the will to live. And this is the funny thing, when you are suddenly in this brave new world, there is no point of reference, you have to learn as you go along and that is it.
Indeed, for me a key part of writing these blogs is to try and demystify some of the myths and fears that naturally accompany getting cancer and having a stoma bag fitted. One of the practical challenges is actually being able to change the bag when out in public places. To be fair to the wonderful NHS, they do equip you very well for what you need to do.
You get a special plastic credit card, stating that you have a medical condition and you can request priority access at a public toilet. Now, if honest, I have never used it, and unless in dire circumstances, am far too British to think of breaking ranks and seek to push in, that as they say would never do, or would it?
To be fair, I have always been very fortunate. I have had very few experiences where I needed to change the bag in a public toilet. Indeed, on those occasions, it has actually been very tricky. After all, you need to carry certain props that require bespoke space. In public toilets they do not exist, and then there is the whole question of cleanliness, or actually an utter lack of it, in virtually all that I have been forced to use. Disabled toilets, of course, are so much better, bigger, well designed, usually much cleaner, and you get your own key to access any disabled toilet when you get your stoma bag and its internal goodies.
In my experience, again I have not attempted to use a disabled toilet, again maybe it’s because I don’t feel like a look disabled. I am familiar with stoma people being abused as they have used a disabled loo. Utter nonsense really, as it is, of course, a disability. It just does not appear in public. So it seems as if the stoma bag lot, as Gilbert and Sullivan famously said, like a Policeman, is not a happy lot.
Or is it? Well, I have seen the promised land, as Martin Luther king famously said and I take my hat straight off to Sainsbury’s supermarkets. They are taking inclusivity to a new level, with special hooks and apparatus inserted for stoma customers. This initiative was instigated after discussions with members of the stoma community. It really is a good idea, if for no other reason than it will hopefully reduce the chances of having to use the toilet floor to store your kit.
Truly nothing good about that, quite obviously. But sometimes necessity is, as they say, the mother of invention. So, even if I was not a Sainsbury’s fan before, I certainly am now and I truly hope that other supermarkets will join in soon. Trust me, it could also turn out to be a nice little earner. Not that I have any demographics about the disposal stoma income bands, but surely we will gravitate, out of convenience, towards Sainsbury’s against others who have no such facilities.
I will, of course, monitor and comment, on cases of good and bad practise to try and make all our lives that little bit easier. In the meantime, keep focused and positive! And remember: never give up, never give in!