Right here, right now.

Positive-Thinking-1bdlofy

From the very beginning of my diagnosis positivity has been emphasised at every turn. Indeed I am a pretty positive person and adopted quite a positive approach myself from the outset. At my test results appointment it was me hugging the surgeon and saying “We can do this”. Everyone tells me that positive thinking is crucial and that there is evidence that it helps towards recovery. Staying positive is generally considered to be, other than all the actual treatments, the single most important gadget in your cancer recovery tool box.

At the beginning everyone told me that I had to be positive and it seemed pretty clear that being positive meant believing in my eventual cure and return to health. I could see how this might help in terms of my mental health and committing to my treatment plan, but in terms of it actually helping me to get better it just seemed so utterly illogical. I mean for the current part of my treatment I am pumped full of toxic drugs that kill cells. They will kill the cells they are going to kill regardless of whether I am curled up in bed weeping or dancing in the sun and whistling a happy tune, surely.

I kept trying to convince myself that there were ways this could work. At one point I actually found myself arguing that all blood goes through the brain so if the brain is saying “You will be well, you will be well” then maybe the blood carries that message through the body to the sites of tumours or potential tumours and helps the chemo etc do it’s work. Utter poppycock.

The other problem with this kind of is positivity is that if you follow it through to its logical conclusion, i.e. if positivity means believing you can be cured, visualising that you are cured and working towards being cured…and then you aren’t cured, does that mean you weren’t positive enough? That doesn’t seem very fair or positive to me.

I cannot hitch my wagon to the idea that it is all about believing I will be cured. As far as I see it there are two clear problems with this idea. Firstly, I do not believe that I can simply will myself well. Secondly, and perhaps more importantly, if my cancer spreads and becomes incurable, where does that leave me positivity wise? Pretty darn negative, that’s where. I reckon in that circumstance I might need some positivity more than ever but if I’ve already defined positivity as cure then that leaves me a bit buggered.

There is a theory that focussing on the future outcome of treatment will help us endure the treatments itself. This makes sense of course: we go through the discomfort, pain and unpleasantness of chemotherapy for example because we believe it will give us a better chance of being well. We go through the pain, disfigurement and essentially life threatening process of major surgery so we might survive. Chemotherapy is hard. It’s an endurance test. It goes on for months and months and the side effects are unpredictable. It’s unpleasant at best and at worst utterly debilitating. Chemotherapy doesn’t just kill cells it attacks your very sense of self from how you look to how you behave. I used to undertake tasks in bursts of intense energy, all at the same time and at break neck speed. Now I have to do things slowly, one at a time, piece by piece. I once heard myself described as “Ashley, with the hair” now I am almost completely bald. No one undergoing chemotherapy comes out the other end the same person they were when they went in.

I have read so many discussion forums, Facebook posts and blog entries by cancer patients that say they just want to feel normal again. That they try to be positive and try to believe they will be well but that it is hard when you feel terrible. It’s hard to believe that things will be better when you have nausea, diarrhoea, bone pain etc. This makes perfect sense, it is hard. Sometimes it is unbearably hard and almost impossible to believe you will be well again. I was reflecting on this and I realised that that’s the problem. Wishing we were ‘normal’ whatever that means, willing ourselves to get through the awfulness of everything to reach that magical day when we are cured can be helpful and we all hope that we reach that place one day soon but it is not what I call positivity.

When I am really poorly I remind myself that it’s ok to be ill. That the constipation followed by diarrhoea, the pain and the mouth ulcers, the nausea and the fatigue, are ok. It is ok to be ill. I will be ill for sometime and that’s ok. It doesn’t mean I am not me anymore. It doesn’t mean my life is terrible and that everything is shit, it just means that today I am poorly. I might be poorly tomorrow but I might not so what’s the point of wondering? Just make sure there is a stock of Imodium and chicken consommé and wait and see.

Positivity is, I believe, utterly crucial in this cancer journey. I believe that my treatment is more likely to work than not but for me, the most helpful positivity isn’t about focussing on that magical day when chemo and surgery and radiation therapy is over, but about focussing on what is good about right now. It’s about being able to say, I am here, I am alive. No wishing things were different. No guilt or regrets. No blame or fear. Just right here, right now, I am here and there is some good stuff to be happy about.

Here are some positive things I have found to focus on:

  • Waking up and realising that I am not nauseous, I feel hungry and want to eat.
  • When the sun shines and the sky is blue and I walk along the beach, or through the park or just down the garden to the shed.
  • The day during my chemo cycle that my taste buds come back and I celebrate with a bacon sandwich.
  • During my last chemo my allergic reaction was hardly noticeable and I didn’t need any top up drugs.
  • On days when I feel very tired I wear my silk pyjamas and watch telly and don’t feel bad about getting through an entire On Demand box set of Bomb Girls.

There are loads more and there will be new ones.

There are positive lessons to be learnt and good stuff to be found everywhere if we look hard enough. That has been the overwhelming lesson of my cancer so far and I am grateful for it. I don’t pretend that I have found some great inner peace or achieved any dramatic level of mindfulness but I have had to slow down a bit and I have had to look a bit more carefully for the good stuff. Sometimes the good stuff is so good it hurts. My daughter singing for instance, or my wife laughing so hard that no sound comes out.

Those of us with a chance of curing our cancer spend so much time and energy focussing on a future where we are well, healthy and disease free that sometimes we can forget how to be here, now. In the end all any of us really have, for certain, cancer or no, is here and now. We get to chose whether to focus on what is terrible or what is great. Positivity just means choosing to focus on what is great, right here, right now.

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A woman of no taste.

I’m getting a bit fed up of not being able to taste things. Food is usually such a joy but so much of it is passing me by now. Chemo attacks the lining of the gullet and mouth and taste is often affected. Thankfully, it only lasts for about 10 days each cycle. About the half the time. For those 10 days my mouth is dry and sore and everything tastes like cardboard.

Last week I made a chicken korma and everyone said it was lovely. I could taste a bit of cumin but that was about it. 2 hours of cooking and all I got was a hint of cumin and the pulp of a naan bread.

Another day I really fancied a marshmallow and nothing! Couldn’t taste sugar at all and all a marshmallow is is sugar. I can taste pickled onions though so I had what we call Grandma’s stew (lamb stew) with pickled onions for lunch. It’s disheartening not to be able to taste and hard to carry on with a meal that seems to be just pulp and vinegar.

Sometimes tastes break through like the cheese in this Stilton and Steak pie my friend made for me. Oh but I am not supposed to eat blue cheese because of the risk of infection. Yeah, well.  Sometimes you just have to say sod it and enjoy your dinner.

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As a society food is everything, or at least it seems to be. Endless cookery books, blogs, cooking programmes. It’s how we define who we are and who we want to be. What explanation can there be, other than upward social mobility, for the prevalence of quinoa?

All our food must be free range, healthy, thrifty and aspirational. I am not saying I don’t go along with some of these. I certainly make sure I buy free range meat. Check out little black pig for fantastic meat!  It just seems to me that everyone has something to say about diet and being a cancer patient seems to mean you are expected to be even more obsessed with the health implications of what you eat.

I can’t keep up with it all. High protein, low carb, lots of veg, no sugar, super foods, everything brown. It seems to me that once I add it all together all advice seems contradictory. I figure if you just go along with what is actually an old fashioned notion of eating real food rather over processed crap then you will probably be ok.

I’m going with my Mum’s advice of everything in moderation.

Except the cream buns my friend brought before my taste buds abandoned me. I didn’t eat those with any sense of moderation at all.