This week I have been absolutely consumed by my work, the highlight being my session working with health professionals at St Georges Hospital in London. I was really delighted to be invited to attend some training days and help the staff understand better some of the psychological and emotional issues that people affected by cancer may face. It was a very lively session that we all learned from, and there were several suggestions that came from it, that hopefully may be introduced in the future. I have been working towards improving communication channels between patients and professionals, and although it has taken a long time I can see that we are heading in the right direction.
All of this has made me think that my own plan was to stop all of my active work, to concentrate on my writing and domestic life from the end of September! It is extremely difficult as the opportunities that are occurring are progress from my past work, and if I don’t do them the chance will be gone. I have also just received two very special invitations so it looks like I will be continuing until the end of November. I am extremely happy that these things are happening, but I am becoming aware that I really do have to draw the line.
I was asked recently if I had considered the effects of what I do on my own health and emotional wellbeing, and the answer I gave was “rarely.” Certainly when I started I gave no thought to it whatsoever, I just saw a need and tried to help. But that was before things really got going and only now am I realising what is happening. My ‘working life’ is starting to feel like a runaway train, with so many different opportunities occurring to help people in different ways. Of course it is the direction I have been working for so many years, and there were times I wondered if I was really going to make a difference in this vast world of cancer support, but it seems I am, and after all the years of ‘seed planting’ I am now starting to see the harvest.
But what effect does this have on my own well being, and for others like me, supporting people whilst going through their own treatment? Like most things in life, we will all deal with it differently, and I have got used to it now, having been doing it for many years. Am I really the best judge of how I am dealing with things though? My wife knows how strong willed I am and doesn’t argue with me, as she knows this is now my passion. My doctors also know how important this is to my life, but we are all quietly aware of what may happen. I tread a very fine line between staying well and getting sick, but why was I given a second chance of life if not to use it?
Logically I know, that with all the emotions involved in helping people affected by cancer day in and day out, I can be at times mentally exhausted, but I have never really done what I have been told throughout my life, and I guess I am too set in my ways to change now! What about my peers on social media, how do they feel? This is a relatively new issue, as the common use of the internet has enabled people to share their experiences with others, and online support communities have quickly formed. Of course you can do as little or as much as you are able, but even as you have your own treatment, it is difficult to switch off from the situation of others.
Recently I was contacted by someone because they felt they weren’t doing as much as me, which made me worry a little. There are so many wonderful people out there giving support and sharing experiences with others. Willingly giving their time, when they could be using it to look after themselves. But it’s hard to switch that emotion off once you have started, and there is no better feeling than knowing that you have been able to help someone. This area of support has become vital for many, filling a massive void in ‘official’ services, there is no doubt at all of the value that it serves.
But do we really see the down sides of ‘giving’ in this way? I imagine most people would feel how I do about it, but it is so important to consider our own health in all of this. I know there are many people out there much more disciplined than me, and I admire that, it is an area I really struggle with, although I am improving slowly. As the reach of my work increases I have a window into the issues of cancer support around the world, and I am increasingly shocked, as the financial reality of health care around the world is brought into my own life.
Cancer support means so many different things to everyone, and my experience shows me that we are all touched by cancer in our lives, directly or indirectly. It is a massive job, that we will all have to get involved in really, helping friends, family or dealing with it personally. It will be impossible to expect any service to provide what we require, as many more people survive cancer, but live with treatment side effects, and more of us are directly affected by it. However it is important that we all learn our own boundaries, in how much we can give of ourselves. None of us can change things on our own, but if we all do what we can, the world will be a better place.
Do you use your experience to help others, if so how does that impact on you? Would you like to do more, or do you think you do too much? Have you ever considered the impact on yourself, of what you do for others? Maybe like me, you can’t change the way you are, so I would love to hear your own support experiences.
If people never pointed it out to you would you stop and think it yourself ? I think it’s just natural in some people to help and support others, and a beautiful trait that I wish more people had x
I didn’t really think much about it Nikki that is true. It was just about helping others, but as my work load has increased dramatically in the last year, it is something that has been mentioned to me by many people now, and I know that I cannot keep up this pace, so will plan a new strategy for the new year. As you say there are many people that are natural givers, but something to consider when your health is not with you. xx
Brilliant Chris! I have spent my life giving and caring for people as a nurse and am finding it very hard to switch that emotional button off. My blog helps as i know i reach others who gain from my writing but My lack of energy stops me doing more but once that improves who knows…!! X
Dawn, you do brilliantly, and I know that your blog makes a difference. I started my blog for a very similar reason as I wanted a focus and something I could do when I was stuck in doors.
My work has expanded as the years have gone on, and it is only now that my health has improved to enable me to do more. But as you know it can quickly regress, and as it has taken 7 years to get to this point I have to be careful. It is a very fine line to tread, but your body will tell you what you need to know 🙂 Chris
strange question ist it. i do so much supporting and campaigning that sometimes i forget i to am fighting. we lost a peach yesterday 32 who i was supporting and she wanted me to meet her before shes died unfortunaly i never got to fulfil her wises but it hit me harder than most was it because she was about same age as me? was it ebcause it made me think boaut my own cancer my own mortality? but at teh same time i dint make me feel retracted from supporting others but more determines to find strength to up the game and support more and campaign more so others are aware. People asked me if i do my blog or publicity work to gain ‘fame’ or ‘celebratiy staus’ btu when i say would you like to come to next radio session wiht me its ‘oh i cant talk about my vagina on tv or radio’ lol. i never went into this going oh ill do this for me to gain friends or opportunites or fame adn stardom not that i am fanmour or a celebratiy but more in the concept of helping people understand what was really going on in my jpurney and the reality of it all, i also knew if i was to do it it had to be honest the higs and the lows and good and embarassing parts. there are times i feel i cant believe you jsust said that, or thats bit graphic but then im a firm beleiver in knowledge is key to everything and if we are not given the truth how can anyone understand of know realitys if not given the knoweldge behind it. AS i work as a chaplain its imprtant to know about limits i ahve heard some dreadful expereinces in my life but know supervison is important something unfortanaly my las job did not excel at. now i am trying to learn teh art of stepping abcak or ‘breathing spcae’ but this can be hard. i guess i have to keep telling myesef ‘i cannot change the world for everyone but i can cahnge it for one pesron’ and then hope it ahs a catelist effect and ripple through to others.. hope you know your limits and look after yourself too xxxx
Wow, tu for sharing your incredibly moving experiences. The things you describe above are exactly what I am talking about. I’m so pleased you understand the benefit of supervision in your work, I also know the necessity of it. However in the wider community people give so much of themselves without due consideration for their own health.
The work we do cannot switch on and off by demand, and we are constantly aware of it, whether we like it or not. I think what you peach sisters do is incredible work, and I cannot imagine what life would be like for those people if you weren’t doing what you do.
If I can help at all with anything please let me know. I know I don’t know my own limits, but am aware I should! Thank you so much for sharing your thoughts and experience! xx
….You are touching many buttons here. Such a fine line as you say between caring for others and ourselves at the same time. Balance isn’t a word I’m good at! I think the cancer makes us want to do more with our lives than we are sometimes ready for or able. I’ve also found that listening to my body, often means that I haven’t listened soon enough and by the time I do I’m back being exhausted. My husband said something wise to me yesterday….’your body’s been drained of all reserves through the harsh treatment, your tank is empty. You are not like you used to be. When you get a small infection these days it takes a lot for your body to cope with it. When you consider those sells and the work that they are having to do to keep you well.’
Our immune systems are weak…no matter what we do to change that with a healthy lifestyle, diet, fresh air, avoiding chemical etc etc. We must learn new ways to stay on top of things. Rest is vital for our recovery and something that I am not very good at doing. Another is asking people to share the load!
Stay well Chris and put yourself first. Your health must always be your first priority.
Take time out every day in someway is my new motto!
I recognise everything you talk about above! After two days of treatment this week I spent Wednesday in London at meetings. I was so tired when I got home, and my wife asked why I was surprised.
Personally I am not a good ‘rester’ and the torture for me is that my brain is always giving me new ideas, but my body can’t react any more. Also I don’t know about you but I hate asking people too!
Your motto is a good one, and it will take discipline to maintain. I think you touched on a key point earlier when you said that how we use our time has changed since cancer entered our lives. It certainly is a fine line to tread 🙂
Stay well yourself Tricia, and thanks for sharing your very wise thoughts, Chris
As always Chris, another thought provoking blog post. When I started WCSUK I never envisaged that it would turn into what it has now but I’m glad it has because it is clear that there was and still is a need for something like this.
It takes up a lot of my time but I do it because its something I believe in and I know how lonely and scared I felt when I was diagnosed. I know that many of the women who come to WCSUK feel the same way and therefore what WCSUK achieves in helping and supporting these women makes everything worthwhile.
However, I have become aware recently that at times it has become to take over my life somewhat and my whole life seems to revolve around what I do with WCSUK.
I will admit that when I lost my Mother suddenly to cancer right at the end of last year, I felt that I had had enough of cancer in my life. I felt drained and exhausted and contemplated walking away from everything, then I realised that this was exactly WHY it was important that WCSUK existed – we need support, all of us.
Without the work that you and I, and countless other committed people do, there would be hundreds, if not thousands of cancer patients and carers out there, feeling alone and scared, just like I did when I got that phone call on 23rd Dec 2009 to tell ne that I had cancer.
But we need to understand that in order to be of use to, and be able to help others we need to look after ourselves – that not being selfish, its just realising that a car with no oil in the engine isn’t going to get very far. xx
Thx Kaz. We both tread very similar paths in many ways. I often look at the amount of work you do in amazement, and also forget at times that you have your own issues to deal with too. I also wasn’t aware what I had started with my own community.
It often crosses my mind that I should stop what I do for the benefit of my own health too, but think the same as you. I am often looking to collaborate in my work, but find it so difficult. Few people can see the benefits, which makes it difficult to share the load.
Both of us clearly understand that we cannot give effective support if our health is compromised, so I will be making some big changes to the way I work next year, and try taking a breath 🙂 Until then our crazy world will continue. Thanks as always for sharing your incredible personal experience, which we can all learn from, Chris