Are we really in charge of our own lives?

I have just received a letter from the Department of Work and Pensions, explaining that they have had a review of my personal health situation, and they consider me to be in the stream of people who will not be able to actively seek work in the foreseeable future.I can't say that I really consider this to be a letter to welcome, as, although it means that they will continue to hand me the meagre crumbs of money that I am entitled to, it also shows what they believe to be my true health situation.

We are all aware that the Government is keen to get as many people off benefit, and back to work. Rightly so by the way! But it seems to have given up on me, for the time being.This made me think again about my own future. By that I don't mean will I live or die? I mean, is my future going to be continually dictated by my unreliable health, and it seems, unfortunately, that it is.

Since my diagnosis nearly 5 years ago, my health has been up and down like a yo yo. I can only remember one period of approximately 6 months, when I had very few problems, which enabled me to lead a fairly normal life, and do some relatively short term planning, involving me taking my first foreign holiday in that time.

In the last couple of days I have just developed yet another chest infection, due to my low immunity, which will take weeks to shift. Antibiotics etc have very little effect anymore so I just have to let nature do it's work. This is all a very familiar picture. Whilst I'm trying to rid myself of one infection, I get another.

It is very difficult to live in this manner, as I never know from day to day how I will be feeling. I make arrangements when I am feeling ok, but by the time it comes round I am not feeling well. But if I don't make any plans, I will have nothing to look forward to. Sometimes I feel like a prisoner, trapped in my own life by my health issues.

Then I started to think about my life before illness and the way my friends live their lives. Assuming that your health is ok, there are also so many things that might stop you doing what you want, when you want. Firstly finances. We can only live within our means, so we must consider our income first. Linked to finances, is our work, so we have to fit things in around that. Then we have our family and friends to consider. All these things link to time. Sometimes we would like to do certain things but just don't have the time to do them.

I have some of those things that my friends don't, mainly time! But they have other things I don't have, like health and cash! In my experience, it is very rare that you have all the things that you want/need in life. There always appears to be some kind of trade off.

So how many decisions do we take in our life that are solely by us and for us? It seems that with or without health issues our  life decisions are influenced by things that are out of our control?  It really is fantastic that we feel that we are living the life we choose, but are we really??

What do you think, do you agree with me?

Fundraising, and a tribute to Claire Squires

The first thing that I wanted to do when I left hospital for the first time in 2008, was give something back to the wonderful hospital and staff, that had saved my life. They had given me a lot of difficult treatment, and had looked after me, when I could do almost nothing for myself. They wanted nothing back from me and told me that it was their job.I had never been in a world like this before. I was used to doing something in return, mostly handing over money.

After a lot of thought, I decided that as I knew a lot of people, I would go round with my begging bowl and hopefully they would be as passionate about my cause, and donate some money.I also realised, like a business you have to explain clearly what you are raising money for, so that it just doesn't go into a large pot., and you can't see what effect your money has had. I discussed this with the hospital, and their need was specialist equipment. So my own charity was formed under the St Georges umbrella, and I could decide where the money was spent.

My friends supported me, and still do, and we have already purchased one major piece of equipment for my ward,(Ruth Myles) and are well on the way to our next target. ( For details of my fundraising just click on the tab on the home page of this blog, and you can see how we are progressing)

I have been fundraising for over four years, and I was interested in the psychology, of why people start it, and why people donate. I guess I am the classic example of why people do it, as I wanted to give something back.Other people have a passion or a family involvement or event, that triggers their interest in certain charities. Some people donate on a regular basis ,others, as a one off.

I started my charity as a legacy, which my wife and boys have promised to continue, as I can never forget what the hospital did for me and continue to do. As you can see, it is online and easy to donate to. The figure keeps increasing as people make generally smaller personal donations throughout the year, and we do a couple of fun evenings to boost the total.

Ironically, the more sick I was, the more money came in! Somehow, a tragedy triggers peoples emotions, and although they cannot directly influence that event, they find themselves wanting to make a financial contribution.I have also found that fundraising in the longer term has it's own difficulties. There is an initial surge of interest, but then peoples lives change, and things happen within their families and their 'giving focus' changes.

Things have changed in the economy, since I started fundraising and people generally have less disposable income, but most people feel better about themselves after making whatever donation they can.

That brings me to the very sad case of Claire Squires, who as you know was running the London Marathon on behalf of The Samaritans, where her mum has worked for some time. That was her reason to raise funds. Her plan was to have some fun, and raise money for her favoured cause. This plan we know ended in tragic circumstances.

The fallout from what happened on Sunday, has been incredible. The world has come together for a common cause, to show their support for a woman who was raising money to help people she would never know. A truly selfless person. Ironically her fundraising has passed the £1m mark and is still rising. How did this happen so quickly?

Just Giving managing director Anne-Marie Huby described the public's response as a spontaneous, "true gesture of sympathy" by thousands of ordinary people. The huge volume of low-sum donations to the site suggested that the public, while hard-pressed financially, were giving as much as they could manage, she added.

Fundraising experts say Squires's story was always likely to unlock donor sympathy. Unpublished research by the Charities Aid Foundation shows that the single most important trigger for donors is feeling emotionally moved by someone's story. The second most important is the tribute effect – the urge to give in memory of somebody.

What was unprecedented was the way social media and digital technology helped drive donations. Squires's death happened at a public, emotionally charged event widely covered by mainstream press and TV. But Twitter and Facebook turned it into a shared story, while the simplicity and directness of online giving enabled people to give quickly and easily.
"What's remarkable is how the page was fuelled by social media, more than we have ever seen before," said Huby.

The above very sad story of Claire Squires, encompasses many of the things I have talked about in previous posts, but particularly the power of social media! Very quickly, people can be joined together under one common cause. It is an example of how one person can make a difference, and the world can know instantly!

Do you fundraise or give money to charity? What is your motivation? Please feel free to share your experiences

How to talk to a person affected by cancer?

This post is prompted by a fellow patient of mine. When we met for our regular dialysis he gave me an article from The Guardian, written by a journalist who had cancer, and was writing about some of the things that were said to her, both good and bad. We both smiled, because over the years we have all encountered instances of other peoples embarrassment, when talking to us about our illness.

When I was newly diagnosed, I wasn't sure how to communicate my situation, so I spoke to a very good friend of ours who has been through the process, and the one thing I remember from her was that, 'people will surprise you'. She said that most people will be brilliant but some, wont! She was absolutely right.

As we know, everyone deals with their illness in different ways. Some don't want to talk at all, others will only tell close friends and family. I felt that if I was going to be sick and my appearance was going to change dramatically, and I wouldn't be socialising etc, I needed to tell people and explain what was going on. That way they could understand what was happening.

The only problem with that approach is that we all take in information in different ways, so some people had a problem in understanding. Most people asked if they weren't sure, but I felt an element of caution from even some of my very best friends. What I hadn't realised was that I had given them a problem! That was that they weren't sure what to say or do. It made me feel slightly awkward too,for them.

What I wanted, and am sure most patients are the same, was to be treated as normal, but I got used to the fact that this couldn't happen for a while. I think what had happened was that I had dealt with my own prognosis, but they also needed time to understand what was happening.

Let's be honest, we all like to say and do the right things, but how can we know what to say, when something enters our world, that we have very little prior experience of? For example, how can I really talk to someone who is pregnant, about having a baby? I can't understand how they are feeling, and nor would I suggest such. Also there is a fear of silence in a conversation. People always feel that they have to fill in the gaps, where really silence is acceptable.

' I know how you feel '  This is always a common response. How can people know how YOU feel? 

 ' I fully understand ' How can they?

 ' Be positive ' No one can make someone feel positive, who isn't.

' Keep fighting ' We're not fighting, just trying to survive.

' You're so brave ' Personally, I don't consider myself to be so. A lot of people have said this to me, to which I say, that I had no choice with the issues I face. If I had gone into a burning building to rescue someone, it would be my choice, therefore I might be described as brave.

The above are just a few examples of common things that people say, I guess more from courtesy than anything else, and always meant with the best intentions.

It is very difficult to generalise about what people would like to hear from you, but I have never been shy when talking to patients, and I have found that most people appreciate an honest approach. If you don't understand something, let them know. Also I have found that if you really don't know what to say, say exactly that! It is better than avoiding things altogether.

I have written several times about the feeling of isolation that you have, with a cancer diagnosis, and the fact that some people might then ignore you, can only make that feeling worse! I know that that is the last thing that they would want, but by ignoring you, they are

showing that they don't know how to deal with the situation. It is borne more out of a lack of knowledge/experience, than anything else.

Talking to people affected by cancer, is not only about what you say, but how you say it! At the end of the day you must remember that we are all human, whether we have a serious illness or not. Just because we are sick, it doesn't mean that we are different. We don't necessarily need special rules to engage in communication, maybe just a little more thought than normal!

Can you think of any examples, good/bad of things that people have said? Please feel free to share them, on the comments section below this post.

Many thanks for your continued positive comments about this blog. Please feel free to add your pic to the members area, which is growing now, after all it is free, and you are joining a very exclusive club!

Relationships

Whether we realise it or not, our life is based on relationships,all on different levels. We have our loved ones and family, then close friends, people we know from work, and people who help us in our lives like tradesman etc.There are people that we meet at various stages of our lives, that come and go. Sometimes it is hard to admit, but we really only have room in our lives for a few close friends outside our families.Time just doesn't permit us to form too many lasting relationships.

I know that some of my younger readers might disagree with me, particular when they look at how many ' friends' they have on Facebook or followers on Twitter,but it is true. We all may know a lot of people, but that is different.

Relationships are always interesting at the best of times.I'm sure, like me you see couples and wonder how their relationship works. Two people, who on the face of it have very little in common, yet seem very happy together. So many of my friends, are totally opposite to their partners, yet they make great couples.

One thing certain to put a relationship under strain, is something like a cancer diagnosis. I have always said that when someone receives a life changing diagnosis, the dynamics of relationships change.Some don't even last the course! One minute, your life is planned in front of you and everything is as it should be. The next minute you are facing a very uncertain future, dealing with things that only happen to other people.

Once I had reached fifty, I really thought that if I was going to get any illness I would have had it by then. I don't know why I thought that, as logic tells me that the older I get, the more chance there is of getting ill! No heart or cancer issues, I never even took a day off sick. Then, out of the blue I got my diagnosis. I was very sick with a poor prognosis. My life plan was now in the bin!

My relationship changed immediately! I couldn't work,therefore earn money. I was so weak, I had to be driven around, I was eternally visiting the hospital, I was having constant treatment, which made me sick and exhausted. My appearance changed, I lost all my hair, I went fat and thin, depending on what drugs I was on. Totally lost my libido, (unsuprisingly!) I almost lost my will to live. All the roles that I was fulfilling in my relationship, I could no longer do.

As it turned out, my perception of the new me, wasn't at all the one that my wife and boys had. I felt totally helpless and relied on them for almost everything.That feeling is very difficult to imagine unless you have experienced it, but for someone as independent as me, it was almost as bad as the disease itself. I had changed from being a driver, to a very helpless passenger in my relationship.

I can really understand, how something like this puts pressure on peoples relationships. All the things that we enjoyed had been taken away, and I felt guilty, for the sacrifices my wife was making. Of course it wasn't my fault, but that is how I felt.To a degree I still feel that way today.

For me, without the help and support of my family, through these tough times, I don't think I would be here writing this, but I know lesser relationships could have crumbled. I know of partners that have left because of the illness. They just couldn't cope. Others start off ok but struggle if it is a long  term battle.Some relationships get stronger, and others collapse.When so many of the factors, that a relationship are based on are taken away, other factors can strengthen, to compensate, but that is not always the case.

I have briefly touched on the effects of a cancer diagnosis on your personal relationship. Now just imagine, the effects with your employer, and the knock on with your finances. Stress is the last thing that you need at a time like that, but that is the one thing that you will have in abundance, whether you like it or not. It will be then that you will find out, the strength of your own relationship.

Living with the new me is the relationship I find the most difficult. I'm not sure if I will ever get used to that.

This post is dedicated to my wife, Sue and boys Stephen and David. Thank you for your faith and belief in me!!

Same destination, but so many routes!

Since I have been on my personal journey from my cancer diagnosis, I initially thought that there was a fairly standard route for patients, a bit like a map that was followed, from initial diagnosis to end of treatment. If you have a certain disease, then you get a certain treatment, to produce hopefully a positive outcome. I seemed quite clear in my mind how I thought the thing would work.

I soon found out, that assumption was only for standard patients! Actually I don't think I have found a standard patient since I started. Everyone is so totally different! Yes, we might have the same disease, and even the same stage, at diagnosis, but that is where the similarities end.Some of us are in better health than others when we start treatment. Some react better than others to treatment, some have a better outcome than others from treatment.

It might seem obvious, but age has a part to play in this too. Generally, the younger and fitter you are, the more able you are to be able to tolerate some tough treatment, and hopefully, the quicker your recovery time might be.

If I take my own case as an example, there were several of us of similar disease and age. We all had stem cell transplants. Some have picked up their careers, as if nothing has happened, some have since passed away, and some like me are still having treatment for some complication or other.

With all the above information, it made me think about the diversity of the patients as well. For example we have so many different nationalities, and cultures. Male/female and children and older people. Wow!! Every case is extremely individual. How the patient, views things, deals with treatment, hospital appointments, emotional and psychological care, and family life.The effects on family and friends is different in every case

I used to work in the East End of London, and on Commercial Road, I was the only English guy, amongst so many different faith groups. I worked in that area for about 15 years, and had a great deal of fun. We all got on well and we had one common thread that joined us together, which was business!

So when I got involved in volunteering with people affected by cancer, I was interested in Afro Caribbean groups, or Asian Support groups, ladies support groups etc. I knew the very contrast of cultures involved, but I was a little surprised that the common bond of a cancer diagnosis could not do more to bind these groups together. I really do appreciate that particularly in the UK we have a very multicultural society, and I am still a little surprised that people can't get together, whatever nationality or belief

I really do believe that we will have a far better chance of improving things quicker, if we could reach a truly representative group of people. I do spend a lot of my time talking about integration and health matters, as I feel there is a long way to go yet on that matter.

Whilst talking about the above, generally I am talking about the adult population. I would also like to give a mention to a group of people that tend to get forgotten at times, and that is teenagers. They face a whole host of different problems, and although there is support out there, it doesn't seem to be as readily available as some of the support for adults.

Teens have very different psychological and emotional problems, and dealing with these problems in their developing years can be traumatic. Not just for the teens but the parents too!
In my work, I have had the privilege of meeting some teenagers, who have been diagnosed with cancer, and they are all stars. But even things like coming in as an inpatient, or having chemo, there are very rarely others of a similar age around, and that can leave a feeling of isolation and frustration. Who else can understand their problems like someone their own age?

I have now seen work starting which will improve facilities for younger patients, which is great. There is also a lot going on behind the scenes, working to improve integration amongst groups too.

I would like to leave you with a simple analogy, which I hope will demonstrate what I would like to see for cancer patients of all races and beliefs.

On a Saturday my family and I go to football along with another 15,000 people. All nationalities back grounds etc. We all talk to people we don't know, before, during, and after the game, about our common passion, football. We then all go home, and the process is repeated in two weeks time. We have only one common bond, but it is a strong one. I look forward to the day when this can happen with different groups.

15,000 people can make much more difference than my family of 4. Can you see my methodology??

 What do you think? Maybe you think things are fine as they are.? People are interested in your views so please take a moment to make a comment.

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Time to look at the ways we offer support?

During this week, I have been to various different meetings, some in hospital settings and others in office settings. I am also involved in working with people, to look at the way they work and communicate, to make their work more time efficient and effective.

I am now going to use some of the more common words associated with modern technology, so apologies in advance! More people are using teleconferencing, and Skype, so that people are not all chasing round the country for unnecessary meetings.In fact this week I watched a speaker at a conference in Manchester, via a tv link. We already use email as the norm now. We send documents at the click of a switch, and  with smart phones, you can be anywhere in the world and give and receive all the information you require.

Most people have a basic mobile these days and send text messages. Even the NHS are using this now, to confirm outpatient appointments. Smart phones and Ipads are a step up from the standard mobile, and are almost one stop communication devices, letting you see people as you talk to them. They contain a camera, radio, your music collection and you can send and receive emails. all this while you are going about your daily routine!

The way people communicate is changing dramatically. Wherever I go, I see people updating their Facebook,Tweeting, or doing emails, on trains buses, or even in pubs or restaurants. It has become acceptable to work in this way. Even in social gatherings, if there is a question that can't be answered, out come the smart phones, and there is the answer instantly!

I am from the older generation, and up to a year or so ago, I poured scorn on the idea of social networking! I guess because I had never used it, and never really understood the purpose of it. I always said that if I wanted to speak to someone, I would call them! However, I do enjoy new technology, and communicating some of my work by traditional means became very tiring. There are always so many people I meet who want to know my story and I end up repeating it so many times.

It occurred to me that so many people were using social media, that I should give it a go. So I signed up to FaceBook and Twitter, and with the help of my young and 'up with it' pals, started to use them. To be fair, anything new takes time to get used to, and they have become part of my life now. However, the most important discovery I made, was that neither of those two mediums were the correct platform, for my cancer work. That is when it was suggested to me that I start a blog. I now use Twitter/FB as my social side, and my blog is my business side. the three methods now work perfectly together.

Although using social media, is not too complicated, I appreciate that currently a reasonable percentage of the people who might benefit from this convenient method of communication, either don't have access to a computer, or are not trained enough to use it. This can be rather exclusive to a lot of your target audience. But my hope is that between us we can work together so that more people will be able to take advantage of the new stuff that is out there.

My reason for writing the above, is that it is also becoming apparent, that there is a need to change the way we think about things like support groups etc. With certain exceptions, I have seen a slow but gradual decline in attendance of different types of groups. Although people need and want support, at various stages of their treatment path, it seems they all want different things at different times. Coming to a meeting in the day is difficult, then in the evening it interferes with family life. Different cultures deal with issues in different ways. Not everyone is comfortable in a group format.Sometimes it is difficult to get the right type of facilitator for the group, and people quickly lose interest.

We must remember that generally we are running groups for people who are unwell, and therefore they maybe unable to make regular meetings.Personally, I enjoy working face to face with people, and I am definitely not encouraging, the running down of patient groups.In fact some people enjoy coming to groups, to meet like minded people outside their normal environment. But I am encouraging a more open approach to the support we offer.

In my small way, I can see that the content of my blog is read at all different times of the day and night. If people feel inclined, they make a comment, if not, they just drawer comfort in their own way.More importantly, people can remain anonymous if they so wish, but can still be part of the community! But the biggest thing I have noticed is the reach!! People anywhere in the world, can enjoy the work.

My current limitations are that I can only write in English, so therefore can only be read by English speaking people, and of course I cannot reach those people who do not have computer access.But that still leaves a much bigger audience than a standard group. Of course there are already many great blogs and forums out there, but maybe we should be looking at using this form of communication alongside our group work locally?

As usual, the above is only my opinion and views. Please feel free to let me know yours. Are you embracing modern technology, or would prefer more traditional forms of support? Do you find modern technology a help or frustration??

How do we value the contents of our lives?

I was prompted to write this post after a conversation I had with someone, one evening. Then the very next day I read an article about Simon Cowell. Yes, I apologise for mentioning that man on here, but you will understand how he is a very public example of some of the things that I am going to talk about in this post.

Several years ago, I met a very inspiring lady, at an awards ceremony. She had her own cancer story to tell and had been nominated for an award. We met purely by chance, and we were sharing experiences. The following day, we both mailed to say that we thought each others stories were incredible. Since then, we have kept in touch. She has managed to get her life back on track brilliantly, and now runs her own company. My story as you know is not like that, and I am still under treatment.

We were talking the other night, and I mentioned what great work she was doing, and she replied by saying that it wasn't as valuable as what I was doing! That really made me think about what value we put on things in our lives. What is really important to us?

Firstly, we live in a society that is dictated by money. We are bombarded these days by media telling us about the state of our finances. Almost from the womb we are open to advertising telling us that our lives will not be complete without a certain gadget, or we must buy some anti wrinkle cream, that will stop us from ageing!! We see other people buying things we can't afford, and our children are constantly under peer pressure to have the latest clothes.

Is it any wonder that we can't really see what is truly valuable in our lives? Obviously, we all live our lives differently and therefore have different priorities, but I would like to say that the core values of life, which can bring us the most happiness, are the things that we can't buy!!

It is at this stage in the post that I would like to bring Mr Cowell back in. I would say that he has more than enough money and power for one man. Yet it seems that behind the scenes he is a deeply unhappy person.He seems to have forgotten that most truly valuable things in life, have to be earned, and cannot be bought. It seems that he will never experience the true riches that come from an enduring relationship.

In my opinion the things we all need to lead a relatively normal life, will include, some or all of the following, and in no particular order. Health, friendship,loyalty,trust, love, happiness, and time. Of course, we all need money, to live, and I'm not trying to pretend that we can get by without it, but we shouldn't sacrifice some of the other things in pursuit of it.

I'm sure our priorities need to be adjusted as we go along the highway of life, to help us adapt to ever changing personal circumstances.If I use my own case as an example, my priorities were dominated by work, as I felt that money gave me freedom. Ironically I became a prisoner of money, and had to work harder to keep up with my own demands!

As you can imagine, we had to make some massive changes to our way of life, but after 5 years, I have got used to living with out earning. It is now my new way of life, and I know that I can survive ok. Ironically, I feel more free than I have for a long time. Particularly in the work I do. I look at each opportunity that I am offered, and have learned to say no. I guess I can't be called a wage slave if I don't have a wage!

Given that my health is what it is, then time is my priority. I just cannot afford to waste it, and will only get involved in things which will aid my work, and eventually people affected by cancer. My free time is spent with my family and friends. It is fantastically enriching sharing life's experiences. After all, what is the use of experience if it is not shared? Just remember that it is not solely ours to keep. It is our duty to pass it on, so that others can learn.

One of the things that I enjoy most, about the work I do, is being able to make people smile, even if they are not feeling great. My friend called them 'Million Dollar Smiles', as you can't put a value on them. A great description but they are worth even more than that to me!

What do you value in your life? Feel free to let me know. Maybe it's a new gadget? A lot of our readers will be interested to hear your views.We are all different and can learn from each other
Enjoy!!

The power of the Internet

Things have changed quite dramatically with my work, since I was nominated to appear on Channel 4 and I received my most recent programme of treatment. As I have mentioned previously, the only way I could see, to extend my reach, was going onto the Internet, and I knew that I had to have my blog up and running, by the time the show was broadcast, as I knew that a lot of people would be introduced to my work and want to know more about it.

My assumptions have proved correct, and the blog audience has increased dramatically, since it was launched, which is brilliant, but the bonus is that it is being read by some very senior people who are beginning to understand why I do, what I do. They are really starting to understand the needs for cancer patients outside the hospital environment.

As far as I am concerned, the internet is now my weapon of choice! My experience of working as a volunteer, working within large organisations has shown me that to enable effective change, can take years, if it ever happens at all! Evaluations, questionnaires, data analysis, facts and figures and bean counters, all play their part. Meeting upon meeting, about even wordings of documents. All very valid by the way, but somewhere in amongst all this analysis, needs to be some realistic time frames. I talk mostly about cancer patients, but you can also include any other long term serious illnesses.

These people generally don't have time on their side, so certain things need to move quicker than they currently do. I feel that sometimes, large organisations, get so tied up in their own red tape, HR, Health and Safety, Risk Assessment, Equality and Diversity, to name but a few, that it takes the focus from where it should be! People are so worried about doing the wrong thing that they do nothing, for fear of rocking the boat and putting their own positions at risk. Which is no good if you are an older vulnerable patient awaiting some form of action.

At the risk of being controversial, if I was talking to a large organisation about my intention of launching a blog, we would still be discussing a risk assessment etc, by which time I would have totally lost the enthusiasm! The beauty of the internet is that it is open to most people, (of course only if they have access to the web!) and it can be as independent or corporate as required.But what is best of all, is that because it's under my umbrella, we can discuss almost any subject quite openly. It retains it's independence, and I will talk about things in real terms. Not sugar coated!

It is fantastic that you are helping me create this community, which actually is a very large number of people that we need to reach.I am seeing some real positives from this method of communication, which I never thought of before. Firstly, people can remain anonymous, and receive comfort from the posts in their own home, as and when they choose. They can be as loud or as quiet as they want to be, and contribute or not, as they wish.

You can be a member of the community, in the way that suits you most, but you will still see everything that everyone else sees. No pushy emails, no marketing, and hopefully language you understand. We have come a long way in just over a couple of months, and have received our 2000th hit and we are read in about 10 countries now. The problems I talk about are the same for people in every country, as cancer shows no discrimination.

My only form of advertising is word of mouth, so if you enjoy this blog, and think it might be of use to someone you know, please don't be shy, and share it with your friends.Things are generally easier if we are working together.

Please feel free to add any comments you feel might be helpful. Is there a subject that you would like me talk about? Just post a comment.I look forward to hearing from you.

Improvement for cancer patients?

Like most of us these days I lead a busy life, and  wherever I  go, people know that I work in the field of cancer. If I am not talking personally to people about it, I am communicating through this blog, on the phone or emails etc. As people who know me will know, I can talk adequately on other subjects too, but cancer is generally a common theme.

If people are not asking me about my treatment and progress, they are talking about someone they know, who has either been newly diagnosed, or is having treatment themselves. I guess like most people too, everyone, I know, knows someone who is affected by the disease.I think we are all aware of the official stats in the UK which tell us that 1 person in 3 will be affected by cancer at some stage in their life.There are times when I feel that figure must be higher, but I guess that is because of the area I work in.

This made me think back to the times of my parents.One thing I can say for sure, is that cancer was never ever discussed in a social environment. It certainly was something that was swept under the carpet. The word cancer was rarely mentioned then, even if someone had it! There appeared to be a real stigma attached to it! For some reason it was assumed that a cancer diagnosis was a death sentence. I put this down to general lack of knowledge, consequently people felt less inclined, to talk about something they knew very little about.

It has taken a very long time for some of that stigma to be removed, and still today, most of us feel uncomfortable talking about the disease. Some of the old fashioned reactions still remain, but I think we are making good progress in that direction. I often replay some of my conversations that have taken place at parties, football or restaurants and think that these would never have happened a few years ago.

In my opinion, if you can start talking about something, that is when the fear factor starts to reduce, so that is why I am so keen to raise awareness of cancer and it's effects on everyday lives. So I take it as a compliment that people are very happy to talk openly with me about their feelings and experiences. If we as a society can maintain that progress, then some of the things that disease feeds from, will be removed.

I am still concerned though, about the psychological and emotional issues that people carry about with them and find it difficult to share.Certainly there is room for improvement in this area. I saw some stats recently that showed that the two people that cancer patients were least likely to confide their inner thoughts to were, a) Their Consultant, and b) their partner. Firstly they thought their doctor didn't have enough time, and they didn't want to let their partner know how bad they were really feeling in case that made them worse!

That means that there are still a lot of very concerned people out there. For them, treatment is improving, information about almost every subject is available, support groups and counselling are also open to them, but we don't seem very good at sharing our problems.

My personal experience has shown me that very rarely, will people I don't know, approach me if I am in a hospital environment. However, if I make the initial approach, very quickly the barriers start to lower and people feel more comfortable. This tells me that maybe a more proactive approach with patients need to be taken rather than a reactive one. I do feel that in general, health professionals prefer to say nothing much, for a fear of saying the wrong thing. Maybe this is a weakness in training or maybe certain people skills are lacking?

I have also seen various styles of cancer information centres. Some very well designed, light airy, modern and welcoming. Others very cold, sombre and unwelcoming. Sure, we need quiet rooms and areas for private reflection, but in my opinion most people would go into an area like that to have their spirits lifted. Maybe it is time to rethink how we use areas like these? I feel that they should be the hub of cancer patient care in the hospital, no matter where they are situated within the building.

Do you agree or disagree?? The above are my opinions based on my experiences. Please feel free to share yours. As I have mentioned at times previously, if there is a particular subject that you would like me to write about, please feel free to let me know.

Life with increasing tiredness and fatigue

As I have mentioned in previous posts, I have always worried about continuity of content for the blog. It went through my mind when I launched it, that there wouldn't be enough subject matter to keep the audience's hunger fulfilled. Lets be honest, if it's not interesting you are not going to read it, and I have never written anything before, unless you count failed O'levels!! But I found that I write from my heart, rather than my head and I have always found subjects that I can talk passionately about.

This week has been fairly uneventful for me. Just regular and routine stuff really, but I am being gradually overtaken by tiredness and fatigue, and these have been the dominant feelings, and are beginning to effect my life in a negative way. The disease which is affecting my tendons, is constantly at war with the treatment I am having, and therefore even though my body is sleeping, there is still a battle being waged inside my body. The result of this is that my body is aching, when I wake up in the morning.

Every minor task is difficult and it takes a great amount of effort to even get dressed! Just going up and down stairs is tiring. If I do rest and sit in a chair my muscles start to seize up, and start aching as soon as I move. This week I have had my two days of dialysis, which is improving my limited movement, but is a tiring process in itself, involving travel to and from London and then having my blood treated.
        

I have this process every two weeks, and I barely have time to recover from one treatment then the next one is coming. I thought I had got used to this regime, but if I am honest, I am finding it tough. Due to the fact that my body is so tired, I'm finding that my normal enthusiasm is waning, and I seem to be turning into an introvert! Everything seems such an effort. Even enjoying myself! I'm finding that I now don't want to go out and socialise.

It seems that I am battling myself, as I can see what is happening and I am fighting against it, so am pushing myself to do things, but I don't know how long I can keep this determination up. It is really frustrating, when you can see what is happening, but struggle to do something about it.

Tiredness and fatigue are common side effects of cancer treatments, and it is difficult to know how long they continue after treatment. If I consider my own case, I worked on average in excess of 60 hours a week, and did a lot of travelling. I soaked up the pressure like a sponge. Now, I spend one day in London and I am absolutely shattered!!! I am now in my fifth year of treatment, so what does the future hold for me??

I am as much concerned about the effect that my fatigue has on my wife's life too. She is very active, and we used to like going for long walks in the country and other healthy pursuits. Now I don't even want to leave the house. She understands, but that doesn't really make me feel any better. I am always so aware of the effect that a change in my life, has on other people's.

I am hoping that this is a relatively short term thing, although it seems to be getting worse. Prior to my illness, I always thought that we all lived with a degree of tiredness, as it was due to the way we lived our lives, but this is different, and affects your general well being. I think it is a very underrated side effect, and the difficulty is, that to a degree it is unquantifiable. In my own case, I don't know if this spell of tiredness is specifically related to my new regime of treatment, or just the cumulative effect of the battering that my body has received over the last few years.

You can read as much information as you like, about side effects like fatigue, but nothing prepares you for how you can feel. Obviously everyone is different, and will have different degrees of it, but personally I am finding dealing with this issue in the long term, very tough.

If you have experienced anything like I am going through, and have some suggestions to help, they will be gratefully received. Thank you.

How often do we make assumptions??

Isn't it interesting that no matter how many times we are told, we still do it, and that is make assumptions about people. ' Never judge a book by it's cover' my mum used to say. When we meet people for the first time I am sure that within the first few seconds we have judged that person.

How do we judge them? By their clothes, the way they speak, how they look, what they say, what they do for a living, what car they drive, where they live? Some, or all of these factors enter into our decision making process.I guess that we have to go through this 'checklist' to enable us to find out whereabouts this person is going to fit into our life.

Are we ever going to see them again? Are we doing business with them? Are they friend material? Will we be seeing them regularly (doctors etc) Are we buying something from them? Can we trust them? How do we work out the answers to all these questions in such a short space of time?

I guess our minds all work differently, and I feel that our decisions are related to our life experience. Maybe the older you get, the more accurate your assumptions are? I would like to think that I'm now making more accurate assumptions about people now, than I was when I was starting out in my work.

As most of you know, I spent a good few years buying and selling ladies clothing. I was meeting a lot of different people, and I had to very quickly work out if I could trust them or not? Could they deliver what I required, when I required it? Would they pay me on time? I did get a few decisions wrong, but generally I am not too wrong about people. My wife always laughs when I tell her that I know a lot about a person I have just met!

I mention the above because we also make assumptions about peoples health when we see them. I would like to give you a few examples of some that I was involved with. See if you have experienced anything similar?

We went shopping to our local supermarket with my eldest son, and he was watching the girls on the checkouts. He mentioned that one, didn't really look happy. I said, maybe she has some worries. He responded by saying, how could she, as she didn't have a responsible job, so he assumed that she had nothing too taxing to think about! I explained that any number of things could have happened in her life, which we didn't know about.

Several years ago now, when I was recovering from my bone marrow transplant, I used to walk daily, to try and recover my strength. It was cold and I had my Crystal Palace hat on. A man stopped me and explained that he was a Palace fan too but he had just had a stroke, which I could see, so he couldn't go to the next few games. I said I couldn't either. He asked me why? I explained briefly what I had been through and he was stunned. He assumed that of the two of us he was worse off. He didn't even imagine I was ill at all.

My last example of assumptions, was the one that happened to me yesterday and prompted me to write this post. I was travelling back from London, and as you know it is Easter hols. Standing next to me was a young mum, and her excited daughter. She was holding a bag and almost begging me to ask her about the contents. Trust me, I started a conversation!!! (I know!)

They had been to a place called M+M world, which apparently sells all sorts of over priced goodies related to the sweet brand. I asked if they spent all day there? Mum told me that in the morning, they had to go to Great Ormond St hospital for the little girl to have a pre op assessment. The little girl was so lovely and lively, I assumed it was for tonsills or similar. No. The operation she was going to have, meant that she was going to end up in a wheel chair!!! My goodness me, she was such a little darling, you would never know.

That brought a big lump to my throat, as I left the train. It summed it all up for me really. Despite what you see on the outside, you never know what is going on behind the mask that we all wear to get us through the day.

Do you find yourself making assumptions as you go through the day? Do you have any examples we could learn from? Please feel free to make a comment.

For new readers of this blog, there is a lot of interesting material in my earlier posts too so please feel free to check back. Just click on older posts, when you reach the bottom of the page.

Unfinished business

I am a very lucky man. I have a loving and supportive family, and the best friends that anyone could ever wish for. I have a social life as busy as I can cope with, and I get asked to do lots of very exciting things. My days are never predictable and to a degree, health and hospital appointments permitting, I can do what I feel like doing, when I feel like doing it. Unfortunately that doesn't include foreign holidays, as I don't feel I have the energy to take that on just yet.

For the last 5 years, cancer has dominated my life. For the first part of that, it wasn't my choice. It took me down like a bolt of lightening and before I knew it, I was enveloped in the physical, psychological and emotional feelings that I wasn't prepared for. How to deal with all the things that were coming at me, I just didn't have a clue. I made it up as I went along. It was a bit like one of those computer games where each stage you reach there are suprises coming at you from all directions. you cannot plan, as you don't know what is going to be happening.

That was probably for the first eighteen months or so. I then took cancer as a companion of choice too, for the rest of my journey. Some people find it hard to understand why I made that choice, but given the fact that there was no way I could continue in my old career, it just felt right! Sometimes we make decisions in life, not always based on logic, and this was one of those.I do sometimes contemplate being illness free and think that I might have made the wrong decision.I imagine myself writing a CV,( which I have only ever done twice in my life!!!) or trying to explain in an interview, if I could even get that far in the process, what I have been doing with the last five years of my life.

I didn't even think about how I would earn money if I was well enough to ever work again. Maybe I should have started some form of informal training that might lead me to a paid role.Too late anyway, to worry what I should have done. So where do I go from here? I really don't want to retire at all. I have no desire to sit back and take things easy. Will I ever be well enough to work again, who knows.I am aware that my main concern is my health and without that nothing else matters. So I guess that until I am in the position of being well enough for long enough, I shouldn't start thinking about it. But I do!!!

I was at a function a few days ago, and I was talking to a lady who I knew well enough to say hello to but not much more than that. She had seen the TV show and had seen some of the work I do for the first time.She said that it was wonderful what I was doing, and didn't I wish I had done it earlier? I said I couldn't really have done it any earlier if I had wanted to as I needed to earn money. She said yes, but you are getting a lot more satisfaction now. I agreed but emphasised that I am not paid for what I do. I had to explain that even good guys need money to live on!!!

So, whether or not I should be, I am still wondering what I will do as paid employment in the future. What is my worth in todays job market?? If I was in good health I'm not sure what my value would be, let alone now. But I'm not quite ready for the bin just yet so we will see what the future holds. In truth I shouldn't be here now, so should I be suprised at what happens next?

Would you really like to give up work given the choice?? I think we all need some of that routine that work brings us. What do you think???

Stepping off lifes treadmill for a few days!

Having not been able to work for a few years now, my average week has taken on very different connotations. With regular hospital visits and my weekly volunteering, and football on Saturdays, a new pattern has emerged. It is still a routine, but a different routine.

I have also noticed an email routine! I am very busy Mon-Thursday. sporadic on Friday, nothing much over the w/end.Even Twitter and Facebook go quiet then. The only emails that are busy in this period are marketing ones! It was interesting to see even this routine change, as those people that work, started finishing early on Thursday, ready for their long Easter w/end.

Is it that our social networking is now done in work time? I can see with the activity on my blog. that most of the viewings take place during working hours. Accept of course in the NHS, where social networking sites are blocked as a rule!!!

Even I have become a slave to my smart phone, and I can almost tell you what day of the week we are on by the amount of email /social network traffic. I read into this situation, that personal time is very important.Whenever I am travelling about, I see people beavering away on their phones. Does this mean that even social networking slows down when people are away from work?

I am old enough to remember, Sunday being a day of rest. People would generally  spend their day with family, going to church, and enjoying their free time together.This was a day that became dedicated to families.

Once our society decided that we needed shops to be open seven days a week, slowly our family time became eroded, and one day blended into the next. Is that what we really want? Sure it is convenient, to buy a pint of milk at anytime of the day or night, but isn't our social time more important than that? I wonder if the opportunity to turn sunday back into a free day ever came, if people would decide to change it back

I mention the above because this Easter, really felt like a holiday. Maybe because it had Fri/Mon, but I could sense that my friends who work, were beginning to unwind and enjoy themselves. Everyone I talked to seemed more relaxed. Over the four day break we managed a mixture of things. We did our normal chores, went to football, (which is a chore these days!!) spent a family day, with sons and grandaughter, and finally went to a 60th birthday party with some good friends.

It was wonderful to catch up with people and talk in a relaxed way. I am aware that we have a few Bank Holidays coming up, so that working people will again have an opportunity to unwind, but it made me think about the importance of recreation in our lives. I am not really convinced that we appreciate it's true value to our wellbeing.

We have all got used to chasing about in life, and that pattern has tended to follow us in our social lives too! How often does it now take a gap of months before you can make an arrangement with people? They're busy, you're busy, family coming round, holidays etc. It seems that we barely have time to breath.

Sometimes, you need to be disciplined, and take time, for you and the people who matter most to you. We all seem to like to tell people how busy we are, but we do need to take a step back at times and evaluate our lives. We are not machines, and we do need to be stimulated by things other than work. Yes, work is important, but so is play! We need to spend quality family time too, and not just squeeze them in.

Everyone would say that they want more time, and I for one know that it isn't going to happen. Maybe the trick to a happier life is better personal time management?? Possibly a bit more personal discipline to make more time for the things that are important. A good use of down time is important for our personal health and well being too. Lets not forget that!!

Do you agree with me?? I would love to hear from you about your views.

We all deal with things differently

I spend most of my spare time talking to people who's lives have been affected by cancer, either directly or indirectly, including patients, relatives, friends, and also health professionals. My personal experience has been an  extremely harsh apprenticeship to serve but I can understand why it had to be done, to enable me to do the work that I do now.

The skills that I developed in my business life, together with my personal cancer experience, have meant that I now have a vast back catalogue of experiences that I can call on when required. This experience was of great use, when I was talking to two people who had received a similar diagnosis.

Both people were offered a similar treatment schedule.But each person had received their information in a different way. For the first person, they had considered all their options and the effects that any decisions would have on their family. They had considered what the Consultant had told them, then after weighing everything up, made their choice.

The second person was entirely different. They were worried and confused, and therefore found it more difficult to make a decision. They felt that they needed more information to help them. but got more confused.

This is an example of how difficult it can be to find the appropriate information for you, and where we all have to be careful. Often in my work we talk about the importance of information, which is true, as it will be the tool that informs the decisions we make. However we all deal with information differently. Some of us can consume and disect a vast amount of information but others can't.

In my own case I would like to make the point that no matter how many recipe books I read, I would still be unable to make beans on toast!! Meaning that this information is wasted on me, as I have no idea of cooking whatsoever. My solution to that, is to go nowhere near one. I know my own strengths and weaknesses.

The above situation is a very typical example of life in general. How a similar thing can be said to two different people, and provoke very different reactions. That is why I am working towards a much more personal approach as I feel that although you can't make someone elses decision for them you just might be able to help guide them through the mist that they have suddenly encountered.

I sometimes feel that health organisations think that they have done their job, by filling your fist with a bundle of booklets on your condition, when you receive your diagnosis or ask for help. For me, this is only the start. It certainly is an improvement on what used to happen twenty years or so ago and we all know that outcomes can be influenced by patient knowledge. So we have to understand that some people might need a bit more help than others.

This all comes back to spending a bit more time with someone, then experience will tell you who might need some help and who doesn't. It still never fails to shock me how many people come away from appointments with professionals, that just don't understand what has been said to them. I'm sure that problem is not always down to the person receiving the information.

It is very difficult to make a decision that will affect the rest of your life if you are not in the right 'place'. That is easier said than, done I know, but we are all different and need different things to help us. Sometimes less is more, in whatever area we work!!!

A beautiful world!

(THOMAS)

Well here he is Chris, not the best photo but will send you better ones when we have downloaded them!!

"Loved the programme, the blog is inspiring i love reading it and you do have the effect of making us sit up and think, thank you"

" Re your blogs, they are the most inspirational dignified and eloquent pieces I have ever read" lolxxx

I wanted to dedicate this post to two very good friends of mine, who have emigrated to France. They have had some very difficult times over the years, and we have supported each other through thick and thin. Above is the first picture of their first born, son Thomas. I consider myself to be very privileged to receive the pic this morning.

My friends also wrote the above comments re the blog, which helped put things into perspective for me. It is wonderful to have a medium, such as the internet where we can communicate in the way we do, instantaneously, to our phones /portable devices. We can reach almost anyone, anywhere in the world.

We can read our messages whenever we like, at home, in the office, or anywhere we choose from our phones etc. What a tool this is for people like me, which is now enabling me to reach a much wider audience!

I was concerned, when I first started writing, that I would not be able to communicate emotions into words. I knew what I was feeling, and I had never thought about how I would write it. But it seems like that was a problem I didn't have to worry too much about, judging from the positive comments I receive. To be communicating with people round the world now is an incredible thing for me.Thank you to everyone who is following this blog.

I was aware that I often write about negative things that happen in peoples lives, and that is why I wanted to include young Thomas in this post. Daily, there are so many wonderful things that are happening , that sometimes we forget about those, and focus on the bad stuff. War, economic issues, law and order and petrol panicking are just a few of those things. But there are also so many good things too.

Why is it that it seems easier to be negative than positive? It sometimes feels that maybe we need to make more of an effort on the positive stuff. Sure the bad stuff is a fact of life, and needs sorting out, and sometimes, we may need to see some negative stuff to understand what good things we do have in our lives?

After all, would we appreciate our holidays so much if we didn't work to earn them????   What do you think??  Celebrations all round at the start of another miracle life I say XXXX