The joy of sharing!

The last 2 weeks have been quite difficult for me, as we are now reaching the festive period, but unfortunately my chest infection means that I am very limited to what I can do. In my life before cancer I was a party animal. When I wasn't working I was socialising, both privately and in a business capacity. This aspect of my personality has not changed at all, as I really am a people lover. However, gone are the all night parties and late night drinking. No more dancing till dawn.A lot of my physically energy is lost to constant treatment, I am unable to taste my food, or drink alcohol! I am absolutely exhausted by about 11pm.This made me think seriously about what joys in life I had left! 

But then I had a 'light bulb' moment! My life is not only about me. Yes it is my life, but I am connected to so many others and I am in theirs too. I am part of my friends history, we have done so many things together over the years.Birthdays, Christmas's, marriages, births and even deaths. We have shared experiences together. I have just returned from a Christmas party, which we have attended for many years. There are more than 100 of us celebrating together. Unfortunately I have missed a few of these in recent years due to bad health. But even though I was unwell, I knew that I had to go this year.

So many people were pleased to see me and there were many smiling faces. Some very moving private conversations too! My conclusion is that my joy now comes from sharing. All the highlights in my life have been shared with others. Anything I have achieved, has only really meant something, when shared, with people I care about. Nothing would mean anything without sharing it. 

Thankfully, I am around in the social media era. This is a tool that is perfect for sharing. Facts, figures, crazy quotes, pictures, information and support, can all be found, and shared easily. I know that if I see an interesting article or some helpful information, I am only too happy to share it.I feel some form of satisfaction, that I have been able to share the work of the writer, and also possibly by helping someone find the information they might need. I guess I am like an internet signpost for people affected by cancer. 

However, sharing doesn't come easy to many. A lot of people prefer to be very private with their thoughts and deeds. That is fine too, but I can't help feeling that they would find life much more pleasurable by talking to others, even about their problems. When I started this blog, my intention was to share my journey publicly and openly, to encourage other people to think about their own life. This is happening, and I am so pleased to hear from people who find this blog helpful. What is also happening is that by writing, a lot of negative emotion is coming out, and being replaced by positivity, as I see the audience growing rapidly.  

The real value of my life, is sharing what I have left, with others. My time is now about making memories. I am very lucky, and have many wonderful people in my life.Most of them haven't just arrived, but have been their for years. Even my 'cancer club,' friends have been with me since I started this epic journey.My doctors and medical team, and all the people I work with in the charity sector, are now very much a part of my world.

In my business world, sharing just wasn't really done, in case your competition stole your ideas. But since I have entered the world of cancer, I have given, and received, so much joy. If by sharing, I can improve someones life, I am a happy man. I am told I have a gift for talking to people. Whatever talent you may have, if you don't use it to the benefit of others, it is wasted. Why do we have experience, if not to help others? Hopefully other people can learn from what worked, and what didn't work, for you.

I have tried to take a personally negative experience, and make it a positive one for others. The part you all play in this, is also very important! It relies on you being the sharing type too! There is now a new  'Chris's Cancer Community' Facebook site to aid sharing. It would be much appreciated if you could click the LIKE button, and SHARE :) Tu for playing your part!!!

Are you a sharer, or a more private person?  Do you get similar benefits to me when u share? 

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?