Sharing a cancer experience

Having been unwell for most of December, and early January, I made a deliberate plan to not chase any more commitments for the new year. I had cleared my diary, and had completed my work. Although I had few speaking engagements on the horizon, my blogging and social media work, quite quickly fill up the gaps in between my treatment sessions, so there is always plenty to do. I wanted to give myself some time to think about the coming year.

However, my speaking engagements are really what helps my work come alive, and makes my blogging etc feel real. It is an opportunity to hear other peoples experiences, who, through me sharing my story, have felt able to talk about their own. I have been doing presentations for many years now, and the beauty for me is that each one is unique. I talk to health professionals, and patients young and old, also at fund raising and business functions. From every presentation I give, I learn something new.

This week I had the pleasure of sharing my experience, with a large group of interns, coming to work for a UK cancer charity.For many of them, it was their first ever in depth look at the effects of cancer on someones life. Although, it is never safe to assume that even with a young audience, there is no one who has a personal or family experience. That has happened to me several times.

After this particular presentation I had time to think about things, as I went straight to a session of treatment.The audience was very receptive and enthusiastic, and many spoke on Twitter about how they had learnt a lot from it, which is great.However my thoughts turned to the frequency with which I share experience and information about cancer.I now speak or write about it, daily. Not only that, I am in a cancer environment for 5 days every month, having treatment, during which time I am talking to both professionals and patients.

I am aware that I have become 'comfortable' talking about almost any aspect of the disease. However, what struck me this time, was that people may not be so comfortable listening to certain things. What has become 'normal' for me, is far from normal for most people. Obviously, if you attend a presentation where someone is talking about cancer, to a degree you know what you are going to get. Also, if you don't like the content, you won't read a blog. But I was thinking also about my social life.

Maybe people don't want to know some of the content, that I tell them? Most will not be used to hearing some of the detail. My natural way of communicating is to tell people the facts. My thinking behind that was to help people understand what was happening.

Sharing something like a cancer experience, is a very personal thing. Some people don't do it at all, not even with their partners! Others keep things within the 'friend and family network.' Some like me share most things, and more. I happen to feel that talking about these things publicly, will help raise awareness of the issues, and improve things for the next generation, but not everyone would agree. 

Blogging has become one of the most popular ways of sharing experience. Even in the two years I have been writing I have noticed, a vast difference in the quantity, and detail of what people share. It has become much more acceptable to share very intimate details of treatment and emotions. But of course, in this instance you have a choice, whether you follow a particular blogger or not, if you like that open style of communication. 

Face to face work is very different. But in many respects I find it easier. I can generally feel a mood in a room, and by looking at peoples body language as I speak, I am able to tailor the talk to suit, the audience. But one of the biggest hurdles to overcome in a group situation is that many people are still uncomfortable talking in public. Always when a talk gets opened up to questions there is normally a slight hesitancy from the audience.Afterwards though, many people want to talk!

The beauty of the platforms available on social media,is that people can take as much or as little as they require.They can stay anonymous if preferred, or go public if comfortable. They don't have to enter a situation where they feel uncomfortable. It is important, psychologically, to share things, even if it is only with people on the Internet. We never stop learning, and for me, hearing other peoples stories, really helps me to make sense of my own. If I can do the same for others, I will be a happy man! 

Do you find it easy to share your experience? Is it of benefit to hear from others about theirs? How important is the internet, in how you give and receive support? 

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The Importance of cancer support via social media

Since I was introduced to the world of social media, I could immediately see how powerful it might be. Certainly, like any new tool, you have to learn how to use it properly, to get the best from it. Which takes time. With trial and error you will find what it does well, and what it does, not so well.

Coming from a business background, and attempting to always keep things simple, I couldn't see what wasn't to like, by connecting like minded people, across the world. Once I found myself taken hostage by cancer, I applied similar rules here. If I can't find physical help for what I need, let me look on the net!

I couldn't find what I felt was required, so I thought I would try and create something. People often ask me why I spend so much time on a project that doesn't pay. But I know, how much difference these blogs make to people affected by cancer. How much they can relate, and how they help to remove that terrible feeling of isolation. Some things are not about money!

Below, I have copied comments, as they were published on my previous post. They moved me so much, that I felt obliged to share them with you. Psychological and emotional support for people affected by cancer, is still desperately lacking, and in a lot of cases, the issues are barely acknowledged. People are carrying this burden constantly, along with their physical problems.

It's not only patients that are gaining from our writing, but I know personally, when I speak to members of my own medical team, how shocked they are at some of the things, they read on my blog, that are happening to me. We are all still learning, but we need to accelerate things. Time is one thing that is not on our side!

"dear chris,

first some background of what I believe has given me a clue about feeling lost. both my husband and I had cancer at the same time - his was multiple myeloma, mine was ST IV meta BC, amazingly, we both achieved remission, also at the same time! we decided to mix the "new normal" and live "life-reinvented", gloriously and to the fullest.

sadly, only 9 months into remission, hugh died -
very suddenly. I found him next to me in our bed with no respirations or pulse. after 3 days in cardiac ICU, he was removed from life support, and I was a widow.

two months later I was diagnosed with uterine cancer, ST 3 with mets to the cervix. I am starting tx this week.

it's my belief that feeling lost is really grief. I know grieving for my husband is a separate (though certainly overlapping) process. but I have spent a great deal of time in retrospect, and now realize that what you spoke about reflects what hugh and I lived when we were in remission - a desire to live on our own terms and not on cancers' term. now, as I navigate towards tx with a new cancer alone, I can reflect in a more realistic way on what both hugh and I might have suffered post treatment - and I know we did feel tremendous grief at the loss of so much. but you see, it was we two, still crazy in love , desperately wanting to celebrate life. there were times we hid our pain and fears and losses - our grief - to help one another be happy.

as I grieve profoundly for my beloved, I feel extremely grateful for all those nine months we had, as well as the time we had cancer together. it almost seems a meant-to-be-ness that we became so utterly entwined and in love with each other, and a same meant-to-be-ness that we were able to live so happily those 9 months - ignorance was truly bliss.

in retrospect, as I read your post, I ponder what all would have befallen us had we not been a couple with cancer, nor achieved a robust remission together, and not flung ourselves head long into a life of adventure and delight. my conclusion is that eventually grief would have had it's way with us, I've wished many times to be able to bring clarity to so many mixed emotions, chris. sometimes my widow's grief is the overwhelming force in my life - hugh has only been gone since may 5th. but as I near treatment for the next gauntlet of cancer to go through now I am more typical of the individual who will face it alone; and even if one has faithful and supportive spouses, family, friends, and whole posse of good doctors - there is still the loneliness, insecurities, fear, and feelings of helplessness.

the big question is how in this day and age, could the medical community dismiss the element of grief from our care. the bigger question looms with more urgency - when and how will the message be delivered, loud and clear, and be dealt with by clinicians who simply give no validation to their patients, leaving them bereft and feeling lost and grieving.

chris, I can't thank you enough for sharing your story in this post. for months I've had such niggling and confusing feelings about insecurity, fear, and at times, just wanting to walk away from all things cancer, thoughts that are so foreign and disturbing. being able to comment meant I had the task of trying to figure out the very bewildering and sad and overwhelming issues you brought to the forefront. and I am so grateful to have had your post to finally be able to have clarity.

I am so sorry for all that you have had to go through. you are amazing, and a wonderful resource for superb support and the education you give so generously to others. I hope with all my heart it will all come back to you a thousand-fold. keep writing - you do it so well, and your are helping legions of other's whose hearts, minds, bodies and souls are hurting.

much love, and lots of warm hugs,"

Karen, TC


My heartfelt thanks and good wishes go out to Karen, and thank you for sharing.

Supporting people affected by cancer

Normally, I like to have my new blog post written and launched by Friday each week, but since the increase in my treatment regime, and prior engagements made long ago, this week and next are particularly difficult and will find me writing at the w/end. However, another reason for my time issue, is that I have had contact from 3 people, who I have encountered in very different situations, and have asked for various forms of support with their issues.

This prompted my thoughts for this post. All of these people are unfortunately, 'experienced patients,' with family, friends, and medical teams around them. However they have chosen to contact me, regarding their issues. I wrote last year that it was 'time to look at the ways we offer support' but I also wonder if some of the support we need as patients, is just not there at all? Maybe we don't even know what we need?

Giving and receiving support is extremely difficult in a lot of cases, particularly when something like cancer is involved. There is no rule book, to guide either party. You as the patient, don't really know what you need until it becomes apparent, and your loved ones/friends can't understand what you are going through. Also if you are anything like me, you hate asking anyone for anything!

Experience has shown us that most people don't feel comfortable discussing certain concerns with either their clinicians or loved ones, for a fear of 'burdening' them. It is also extremely difficult to have to admit to people you know well, that you are finding things tough. Particularly if you are the person that people normally look to when times get difficult for them!

I have met a lot of people affected by cancers similar to mine, and many that have gone through a stem-cell transplant, like mine. However I can say that without question, everyone's situation has been unique. Personal circumstances, treatment regimes, health prior to diagnosis, complications after treatment, and the psychological effects on them from the whole process.

The word support means different things to us all, and we can offer it in different ways. One increasingly common method now, is by giving information. Surveys have shown that informed patients are more likely to take control of their care pathway, which will result in improved outcomes. This is great, but speaking personally I do not feel supported at all, by a handful of booklets! This is only a small part of the story. Knowing what may happen to you, and what the treatment is likely to do, is helpful, but also frightening. What do you now do with that information?

As my life has taken me in this direction I spend a lot of time in the company of people affected by cancer. Not only patients, but professionals, family, friends, and organisations working to improve things. I also have a lot of communication with people who contact me via social media. I am still shocked, how many people cannot find the support that they are seeking.

Why is this? Possibly, because what we require, can change from day to day. As our world goes through the 'high-low' process, our needs are constantly changing. Many things that occur for us, are outside our personal experience boundaries, and we have no 'back catalogue' to drawer on.

It seems that my personal experience, is the major qualification, in the support process. One of the reason's that I started doing the work that I do, is that I 'get it!' Much as people tell me about different schemes and projects that are starting, or already exist, there is no credible 'official' system that caters for what is required.

 

Maybe, a chance conversation, or a blog post stimulating your thought process, may prompt
the support you have been looking for. Social media has opened up the support arena greatly, and there are millions of us sharing our experiences with the world. I know I have received huge help from this area.

In summary, I'm very happy to be able to help where I can, and feel privileged to be invited into very personal areas of peoples lives. Unfortunately, I am unable to offer a solution to the professionals who ask, how can we improve things for you guys? I am not convinced that there is anything 'official' that can. Cancer will always create different 'grey areas' for all of us. Definitely a place where 'one size does not fit all!'

Do you feel that you are able to access the support you feel you need?