Since I started 2016 and threw caution to the wind to broaden my work reach, the time has absolutely flashed past, which has been fantastic, as I have been involved in so many exciting projects around the world. Most importantly I have now started my own charity, which has opened up many different opportunities. The massive positive I have found is that my mind is fully occupied and I have very little time to consider my own health, which is a great bonus. Of course I realise that I can’t do things in the way that most healthy people can, but if I’m honest I have got fed up with living my life in such a cautious way. Not doing many things I want to, and being tired all the time. Constantly worrying if I am going to get an infection to set me back again. It has often felt that I am being kept prisoner in my own body!
In a few days I am doing a very important national conference and then we are taking our first ever cruise, which is a bit of a bucket list thing, but will be lovely! I had to go to hospital yesterday to get my medication and have a check up before I go, and that is when all the uncertainties started coming back. A cough has started and I’m full of catarrh, leading my Consultant to ask if I had been overdoing things. “Of course I have,” I replied and he looked to the skies. So I left hospital with a large bag of meds in case things get tricky while I am on the boat. That visit just reminded me how vulnerable I really am. Today I spoke with someone about a project and she said that she had totally forgotten I was a patient, and until yesterday so had I!
This year has been the most productive year for me since I got sick. I am now really confident with what I do, and there is a very steady stream of interesting projects to think about. Alongside my own charity work, I have started to write a book about my experiences, since I got cancer, which seems to be getting longer the more I think about it. My work is now established around the world and particularly in America. But there is so much more that can be done and I find it hard to quench my continual thirst for a challenge!
The value of time is so very different now to what it was before my illness. I have been incredibly lucky and remain indebted continuously to my medical team, family and friends who support me unquestionably. During my recent conversations at hospital I discussed the importance of ‘satisfying time’ rather than time just resting. Everybody talks about finding a happy medium, but that is easier said than done. My body can only do so much now anyway, which is getting less as the months go by. All the statistics show me that I am lucky to still be here, so what am I saving myself for?
Everyday I feel grateful for the things I am able to do, and the incredible people I can help. I know that the sensible thing is to slow down, and take things much easier, but I have never really done the sensible thing so far and I guess I am now too old to change. There is a constant feeling of not wanting to waste time and miss the opportunities that are coming along now. I have missed a big chunk of my life because of this illness and I don’t want to lose any more! Although working with the handicap of unreliable health is extremely difficult, and at times requires a massive effort, both physically and mentally, I do get an incredible feeling of satisfaction, which is now beginning to block out some of the negative feelings I have.
My psychological settings have been altered forever since my diagnosis, which still feels like yesterday, and despite a fading memory I can still remember every word of that conversation! Unable to keep that shock from my head I rely on sleeping tablets to switch my brain off now. It is very strange, the cocktail of emotions I live with daily, ranging from elation to depression, and guilt to pleasure. Too much thinking complicates life for me now, so I tend to rely much more on my instincts, what feels right. Being busy, feels mentally right, even if my body struggles with that. It might not be the right way for everyone but it fits for me now.
After the early days of my illness, to make 52 was a major step, now I am applying for my London travel pass as I approach 60 in the next few weeks! What has happened to me in that time has been incredible, some really dreadful lows but incredible highs too. Of course I have been unbelievably lucky, and I don’t know how long that can continue, but I know that I will not slow down unless my body forces me too. As each day passes my gratitude increases. The extra time I have been given has allowed me to correct some of my mistakes, and live a much more fulfilling life, with totally different priorities to before. Of course there is no right or wrong, just what works for you. Keeping busy is working for me right now, so that’s how I will continue until nature tells me otherwise!
As always, above are my thoughts and experiences and please feel free to share yours below. How has illness affected you psychologically? Have you managed to get your life back on track?
Good luck at the conference, Chris, and enjoy your cruise and your 60th birthday! Deb 🙂 xx
Thx Deb! It’s a big conference with some of the very top people from N.H.S and I am opening speaker. Really pleased that they want to discuss the patient perspective so openly.
Yes the cruise should be good,it’s our first ever. More than anything it will give Mrs L a nice break 🙂
Great to see that your own work is getting out there, well done! :)x
Thank you! 🙂 xx
A very happy 60th Chris and have a wonderful cruise.
Thx so much Susan. Time seems to go so quickly these days! Best to you from us both xx
Hi Chris… and many happy returns for you approaching birthday!
I always enjoy reading your blog and today is no different, other than wishing to comment on the raw psychological aftermath that continues to effect me. It was somehow reassuring that you also feel these extreme emotions. I keep thinking that ‘I should’ be over it by now… but I’m clearly not.
I have moved twice since my diagnosis, (from London to Cumbria) and treatment back in Guy’s and St Thomas’s. What has been so difficult for me is having to meet a completely new health team, new consultants, new specialist nurses, different hospitals, and GP’s. On top of this my records have not moved with me despite my attempts to request this. (Did I just dream patient electronic notes system?!) I therefore take copies of my note for the new hospitals to photo copy and keep in my file, though these are clearly not read. I appreciate as I was told back in St Thomases that ‘I am no longer a priority’. But nevertheless, I am a person, who still has medical needs, and has gone through a very traumatic experience.
I am drained by having to explain a ‘short summery’ of the difficult journey that I have been through. The new specialist whom I met last week, stated ‘I don’t need to hear all the details, that’s not important!’ Well it is to me and anyone else that is living with a diagnosis. I came out of that appointment in floods of tears.
I think the emotional trauma of cancer is very difficult, it seems that is the part of the wound that never gets to heal. The interactions, our relationships and the professions ability to communicate and listen with integrity, empathy and reassurance make all the difference in our ability to manage our health. I appreciate this is a lot to ask but really, need it be?
I’m beginning to rant so I shall stop here. But I just want to thank you Chris for listening and for all the great work you do in getting our views across and making change happen.
Wishing you a wonderful year.
Yes indeed I do still feel those extreme emotions, and like you I don’t think I will ever stop experiencing them now, which is why I wanted to write about it. Exactly as you describe they feel like a part of the wound that will never heal. In many cases that side of cancer can be more painful than the physical part.
Unfortunately the experiences you describe above are still all too common, despite the amount of awareness raised. Personally I received and continue to receive exceptional care. But I feel that part of the reason is that I have had the same team for so long and we know each other well.
Your comments were not a rant, and this site is a platform to share experiences, which is vital for me when I attend meetings as an influencer, to understand fully how other people are experiencing cancer care.
In fact I am guest speaker at an important meeting on Thursday where I will be talking to the N.H.S about this very issue! They do want to understand what they can do better.
Thanks so much for your kind wishes and sharing your very personal experiences. Please feel free to continue to rant as we can all learn so much from sharing, Chris xx
Good luck at the conference Chris. Hopefully the NHS will listen to you and start to see patients as a whole rather than as a diagnosis or illness. As we know, a cancer diagnosis can change your life forever and affects not just us as patients but also our families. The effects can last a lifetime and they are not just physical but emotional and also psychological and these are often overlooked.
The physical scars of a cancer diagnosis may fade over time but it seems the emotional and psychological scars can last for many years and often we have to bury these feelings because we are expected to “get over it and move on”.
Hope you and Mrs L enjoy your cruise and Happy upcoming 60th.
As you know Kaz I agree with everything you have written, and I’m pleased to be invited to talk at this conference. They have given me a big slot as they want to host a question and answer session after I talk about my experiences.
The psychological issues are so common and is where most of my work is concentrated now. Thanks so much for your kind wishes, and neither of us can believe that we will be celebrating my 60th together.
Thanks as always for your support Kaz!
Thank you Chris for your reply and for all the work that you’re doing. And very best wishes for the conference. It is heartening to hear that the NHS are listening, responding and recognizing patients needs and wanting to improve services. Indeed you are opening the conference, and this itself this speaks volumes!
I can only thank you wholeheartedly for speaking up for us all.
Best wishes. Tricia xx