“Stay Positive”

As my regular readers will know, this year is my ‘go for it year.’ It didn’t start so well, as I had a month of bronchitis just after Christmas but still managed to fulfil my commitments. This helped to focus my mind away from negative thoughts and onto all the exciting opportunities that were starting to open up. Now we are at the middle of February and that sense of achievement is growing. People contacting me from around the world with opportunities to improve the landscape for people affected by cancer. Even my own hospital are chasing me to ensure they are at the front of a new service I am involved with. Yes, the positivity is flowing, despite an emergency visit to the dentist with a broken tooth which now needs some complex work and much money spent on it! In days gone by bronchitis followed by the tooth and it’s complexities caused by my treatment, would have me hiding in a darkened room, but not now. I am coming back for more!

This made me think about some of the really early days of my treatment. Constant chemotherapy and then weeks in isolation wondering if I was going to live or die.Staying positive So many people said “you will be fine if you stay positive.” I must admit I never really felt better after hearing that, and my thoughts were “it’s easy for you to say!” I have always been a positive person throughout my life, but have never really looked at it in the way that it might actually be improving my health. One thing I have learned though, is that someone doesn’t suddenly become positive because you have told them they must be. In fact for someone who doesn’t feel positive in their situation it is probably one of the last things they want to hear.

When you are staring into a ‘black hole’ and all the evidence is also pointing that way, it can be very hard to stay positive. But what makes some of us keep faith and others not? After I was told that it would take anything up to a year to get back on my feet if I survived the treatment, that became my first target. But then, complication after complication came along and I am now eight years into my journey, having lost a lot of things both physically and emotionally, but still feeling positive. Having got past all the major health milestones, which none of us foresaw, has given me some sort of crazy freedom! I am now taking on challenges that I would never have considered when I was even in full health. Cancer and it’s treatment has made me feel empowered, and I have understood what is really valuable to me. In my life I have been very lucky and experienced so many things through my work, so my ‘bucket list’ is a lot shorter than most! My greatest ambition is to be with my wife whilst she works her way through hers, and she is in fabulous health!

Even clinicians point to positivity as a necessary factor when faced with serious medical situations, but I don’t really know what any hard evidence shows. Of course the world looks a better place when seen through rose tinted glasses, but if you don’t have a pair it can seem entirely different. Staying positive 1The psychological issues we face once diagnosed with chronic illness can in many cases, be much worse than the treatment itself. We see strong men wilt, but also mild men can appear strong. We have found over the years that our mental health is closely related to our physical health, so we are beginning to look at ‘holistic care’ which in my opinion can be the only effective way forward. Treating the mind and body as one, and us as a whole person and not just a case of medical notes.

“Of course you’re ok, you have PMA” (positive mental attitude) they say. But I haven’t had that all the time! I entered a world of healthcare which I was fortunately unfamiliar with. I had never even spent a night in hospital and quickly I was facing every treatment known to man. Watching as my features changed rapidly, losing my hair, putting on a large increase in weight and unable to keep food down. Just a few side effects to my regime of treatment, not even knowing if after all this I would even survive. During one of my many long spells in hospital they sent in a clinical psychologist. He asked me what was wrong and I said I was fed up! After a brief look though my biblical proportioned notes he replied, “I’m not surprised!”

I have been frequently on and off the ‘positivity train’ since my diagnosis, for long periods of both. It is certainly easy to understand people who struggle. With fabulous people around me, both family and friends, plus a wonderful team of clinicians, my chances are better than some. Within the last year I have had some specialist help to enable me to re-engage with my positive mind. This has had an incredible impact on me, helping me keep focussed on the many positives in my life. Yes there are still plenty of negative things occurring but I can now see them differently.

We will all face periods of negativity in our life, this is indeed normal, and of course facing any challenge with a positive outlook will help you. But it can be unhelpful if you compare yourself to others. We are all facing different challenges at different times, and only you will know what is right for you. Have you struggled to stay positive? How has positivity or lack of, affected your life? As always please feel free to share your thoughts and experiences below.

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  1. Too much! If positive thinking was a cure then that would be fabulous. That being said, I do like to be think of the cup as half full! It’s 3 years today since the two tumours were removed but still not in the clear yet. I like to support others too

    • I thought it just wasn’t me Rachel, it happened so many times this week to me. Great quote ” if positive thinking was a cure then that would be fabulous.” I’m a half full man too, good luck and thx for all you do for others.

  2. Great blog again Chris, I am nowhere near as bad as some but after being diagnosed with Pulmonary Sarcoidosis last year I hit a brick wall for a time. I felt I had to be positive as Claire has always been so strong, but now and then I just need to wallow for a while before lifting myself up. I agree, being told to stay positive is not always what you want to hear but on the other hand when somebody asks how you are, you don’t actually want to tell them how you really feel in case they think you are looking for sympathy, so you are economical with the truth.

    • Thx so much Eileen. Yes, Claire is a great role model, but I’m sure like all of us she has her down days too? It can be difficult when you look around you, particularly in the work we both do. There is no hierarchy in our illness or how ‘brave’ we appear. We all have dark times, and it can be very difficult when you see others, and start comparing your own situation.

      I know what you mean about being economical with the truth, it was like that for me at first, but I found it to hard to keep up the pretence and once I admitted to myself I was finding things hard going, life became easier.

      Wishing you well and hoping to catch up with you sometime soon, Chris

  3. Great article, Chris (‘tho sorry to hear about your poorly tooth – I DO feel your pain!) xx

    I remember my Macmillan Nurse telling me very sternly that I wasn’t to come into the hospital being miserable, that I HAD to stay positive … so I kept up my “front” of being happy, of being “OK”. Never letting my guard drop in front of anyone except my Beloved (and even then, I still put on a brave face to him) … until a couple of months after treatment ended, and I really hit rock-bottom. Clinical depression ain’t a pretty thing to go through, or be a witness to.

    So ‘tho I am naturally very upbeat and positive, I’m far more mindful nowadays of allowing myself the luxury of an odd Pity-Me-Party and letting my dear self ride with the emotions … and I’m also far more respectful of other people’s emotions. We’re all entitled to days where we want to hide under the duvet, or don’t want to tell anyone how we’re really feeling. Just as we’re all perfectly entitled to sally forth with great gusto and change the world on our good days, where positivity spirals outwards from us in huge waves!

    3 cheers for our bucket-lists! x

    • Thanks Callie! Yes the tooth thing is a problem as you know from a lot of previous treatment, they have become brittle. My dentist is great but it is expensive to do what needs doing. A combination of aggressive treatment, old age and poor dentistry as a child 🙁

      My situation was similar to yours. My feeling was if my family saw me go down, it would make life tougher, so I did my best like you. It certainly took it’s toll in the longer term. Your own example is something I’m talking about, people telling you to stay positive, which at times can be most unhelpful.

      We seem to also have similar views also about how we now go forward. What a huge learning curve we are on eh? I hope 2016 is picking up for you and showing you some positive stuff, and thanks as always for sharing your own experiences.

      Bucket list is another story 🙂 xx

  4. I do agree with you “you can’t see the world through tinted glasses if you haven’t got a pair”. I often got irritated with people who said “you must be positive”. Sometimes it felt like I was responsible for bringing on cancer by not being positive. Then I read a book “Smile or Die” by Barbara Ehrenreich and it was a relief to find that others felt as I did.

    Many, many years ago I read a book “Man’s Search for Meaning” by Viktor Frankl; he spent 4 years in concentration camps including Auschwitz, it moved me to tears. I seem to recall that he observed that a man’s disposition played a significant part in his ability to survive in such extreme circumstances. How does one remain positive in such circumstances? But it appears that some did, he even tells of a fellow doctor standing in the queue for watery soup and joking, they were in the habit of asking for a ladle from the bottom of the container as it might have a few peas in it, he said “next time we are at a medical conference we must remember not to ask for a ladle of soup from the bottom”.

    • This post came about because I was doing a filming session with people who didn’t really know my story. Once it came out, they all talked about positivity, which made me smile really, because as we all know there are plenty of times we struggle to find any positivity in our situation. Thank you for sharing that great piece from the book, what a fabulous example!

      One thing that springs to mind for me, was when you struggled to get to your volunteering interview on time, and you didn’t get the job. Look what happened after that!

  5. Another good one, Chris! Fed up! Do I know that feeling!!!

    Anyone who doesn’t struggle is lying! I read an excellent book recently-Getting Off the Emotional Rollercoaster of cancer by Niki Barr, PhD. I found it incredibly helpful in that it provided an understandable framework for the different emotional experiences that are part of cancer. As someone who has lived with cancer for 7(!) years now, I still find myself recycling various emotions, particularly as time approaches for blood tests/scans.

    All this makes me think about the role of our mind and how we can best manage our reality and does it impact our biology? No answers, but lots of questions.

    One last thing I’ll share: I have a friend who helped me put together specific meditations for some problems I was facing. One was fatigue. We constructed a skiing meditation that was so real I could feel the wind on my face, smell the air and feel the sun. I wore my favorite orange jacket. When I was dragging, I’d drop into this meditation and I’d emerge with renewed energy. These meditations were simply amazing–for me, a great tool in my cancer arsenal. Even though I can no longer ski, I still use this one for a bit of fun–and it still works, even if my body doesn’t!

    Mind/body–which comes first?!

    • Thx Pat! Yes of course we all struggle at times, and I initially saw that as a weakness, but my Consultant said, “think about what your body has gone through, it is no wonder your mind is struggling.” He was right of course, so now I see those times as normal, and come up for oxygen when I need to.

      I have also read Niki’s book it’s great and very helpful.

      Really love the skiing meditation story and so pleased it still works! Must get round to meditation.

      Great question the mind/body one, but unless they are looked at together, we will always be struggling.

      Thanks as always Pat for sharing your knowledge and experience, Chris

  6. Another excellent blog post Chris. I’d always been a very positive person until I was diagnosed at the end of 2009. Going through chemo and radio was tough but I still put a brave face on and always had a smile on my face when I went out. Then shortly after my treatment ended I was diagnosed with clinical depression. I still tried hard to look on the positive side – I was alive! Over the past 5+ years as my health has got worse due to the treatment, its become even harder to smile and try to be positive. Living in an isolated island community doesn’t help. Aftercare is virtually non existent and GP’s only seem to want to push pills on you and thats not what I want. Running WCSUK is the only thing that has kept me sane over the past 5 years. It forces me to get out of bed every morning and function. it’s a struggle sometimes but it stops me sliding further into the dark hole. I’ve managed to climb part way back up and I don;t want to slip back down again. Thank you once again for talking about a subject that is often ignored – we need to keep breaking down the walls of silence that exist in cancer care. xx

    • Thx on all counts Kaz. Apart from living on an isolated island we have much in common. A lot of what you talk about above has happened to me, and my work has done the same for me too. Like you, seeing the issues at close quarters has encoursged me to share for two reasons. Help others understand it, and help connect people affected by it. My ambition is to really shake up the status quo a bit, and help people understand they have more of a voice than they think. We are all making breakthroughs with our work, and our continued collaboration will improve that rapidly. Have an exciting project coming imminently which will open peoples eyes, stay close xxx

  7. Hate it when people say stay positive…. that won’t cure cancer….try to be cheerful yes but I agree what’s positivity got to do with it?

  8. This is such an important topic for patients AND medical practitioners (I was just told this week by my IV nurse to stay positive when I was feeling bummed). I am also a pretty positive person but sometimes there are just days where you’re in the dumps. I think we need to give ourselves permission to feel those down days, as you pointed out, in some strange way they give us a place to bounce UP from later. We know we are capable of so many things because we got through the low times. Thank you for your fantastic writing and sharing!! So glad to connect with you!! -Jules

  9. Thx Jules. It was something that I was thinking about and wondered what other people’s views were? Your example is exactly the thing I am talking about, and I have found on many occasions this is coming from medical people which surprised me a little.

    You are absolutely right that we need to give ourselves permission to have some down days, it certainly is nothing to be ashamed of.

    So pleased to connect with you too. It is what I wanted to do with this site and we are beginning to do that. It is a delight to share experiences with others around the world. I am trying to use all my negative experiences to help others and make something positive from them. Thanks so much for sharing your own experiences Jules x

  10. Mind over Matter was my interpretation of the stay positive post…negative thoughts produce negative outcomes and vice versa…a positive mind is much more likely to help heal a body…I do believe we are all capable of healing ourselves most people would disagree when it comes to cancer but we all live with cancers in our bodies

  11. That is a very common view Amanda. I’m with you to some degree there, but that makes things difficult for the people who struggle to find positivity in their situation. I guess like most things with cancer, it is what is good for you?

  12. A couple of days after diagnosis I had a call from my GP. One thing he said to me during that call was ‘Don’t be negative’. I found it interesting that a doctor in mainstream medicine believed my mindset was important at that point and thought that ‘cancer feeds on negativity'(his words). What worked for me may very well not work for others – an often quite dark sense of humour, looking for any small positive, writing. We all handle things our own way, positively or negatively or a mixture of both. I try to think that others mean well when they comment. Thankfully I don’t feel pressured to think or feel a certain way, I just deal with things my own way as I have done all the way through.

  13. Hi Deb, apologies for the delay in replying but I have only just spotted this! Yes indeed your doctors comment was very interesting, particularly the bit about cancer feeding on negativity.

    I think we all know that problems are so much more difficult to deal with when we are feeling negative, and of course cancer is no different. But as we all know, when you are the one dealing with things it can be difficult to find any positivity at times.

    There is no one who has more positivity than me, in fact even on diagnosis I refused to believe that they didn’t have the wrong file! But as reality occurred I too have a great mixture of emotions. I tend not to look too far ahead now and just deal with what life chooses for me.

    You and I have many similarities Deb, thanks as always for sharing xx

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