Thursday, 30 August 2012

Cancer and our physical relationships

I am writing this on a very quiet day, and I was reflecting that I have now written over 80 posts since I started this blog. I thought that I must have written about most subjects connected with cancer, but I realised that there is one important subject that I haven't  touched on, and I don't really know why! I thought that maybe because it is such a sensitive subject, I have avoided it, but that isn't really my style at all, and is a very important part of our lives, so here we go.

In most cases, our physical relationships are very closely linked to our mental well being. If things are good in our lives, happy days, our sex lives are great! When things get tough, then our physical relationships tend to suffer as well. This is ok, if your tough time is only temporary, but if you have been diagnosed with a long term illness, it can be very tough to keep sex on the agenda.

When cancer is diagnosed, there are many things to be discussed at the hospital. Amongst  points on that very ominous check list, are questions regarding your private life. All very important I might add, particularly if you are unfortunate to be requiring treatment, when having children is on your horizon. Questions about fertility, and reproduction are critical at this stage, so not only are you worried about your own health, you must start making crucial decisions that can affect the rest of you and your partners lives. This may even happen when you don't  have a partner!

I remember my own meeting, with my Macmillan Nurse. She was telling my wife and I about what we could expect in the way of side effects from the chemotherapy and bone marrow transplant. Whilst I was taking in things like, losing my hair, putting on weight with steroids, and urinating luminous toxins, she then asked me if I was still sexually active! I said "I was until you mentioned all those things"!! We all laughed, and she discussed the need to use condoms where necessary, which again, was very important, and I wouldn't have thought about.

We all like to look and feel attractive, which are both ingredients in a happy and fulfilling physical relationship. However, it can be difficult at times, when your life is at risk, and you are on a regular regime of tough treatment. For some cancers, there can be life changing surgery involved, and a lifetime of drugs to take, which can change your physical shape, and your own perception of attractiveness.

Sometimes, the battle can be about how we see ourselves, not how others see us. If we are not happy with things about ourselves, it is going to be difficult, to understand how others can find us attractive. These problems, cross the gender divide, and are common to both men and women. With some treatments and surgery, men can lose the mechanics of an erection, either temporarily or permanently. For woman, there can be various different physical and psychological issues to face.

When facing life or death situations, your physical relationship, probably doesn't score highly on the to do list, but if you are lucky enough to come through that experience, how fully does your life proceed? I have had many discussions with my fellow patients over the years and in a lot of cases this subject produces laughter! My opinion is that people affected by cancer feel comfortable talking about these sort of issues, to someone who has experienced the same kind of things. This is because, they are the only people who can truly understand what is involved.

We all find it difficult to talk about our relationships, and that subject is up there alongside personal finances, in terms of subjects that are almost taboo for chit chat.But in my opinion, getting that side of your life up and running again, is a massive step forward for your general well being. I also feel that it is a part of your recovery that is totally overlooked, when you are outside the hospital environment. After a cancer diagnosis and treatment, it can feel like you are left alone to pick up the pieces of your life.

For life to get back on track, a lot of psychological issues need to be dealt with, to enable the physical issues to happen naturally. There are a lot of pieces to put together, before you can see the complete picture. If you are reading this and you are lucky enough not to have experienced any of the above, maybe you know someone who has, and this might help you understand some of the situations involved. If you have experienced anything similar, maybe you would like to share your observations?

Friday, 24 August 2012

Finding strength from adversity

Without fail, in every week, I meet people that totally amaze me. In my work,it is mostly people affected by cancer, but there are also lots of other people,who have different issues, which they are struggling to deal with. One of my favourite sayings is that 'there is no hierarchy in problems'. By this I mean that to each one of us, our big problem is big. There is no point in comparing your own issues with someone else's.

I constantly hear very moving stories, and in my mind, I feel I know which the most moving one is, but inevitably, fairly soon, I hear another one, which is more so than the other.This week I met a man, who's story I will struggle to beat for some time I think, and it made me think of the strength that we have in us as humans, even if we don't know that we have it.My personal experience of cancer, and that of many people I have met, has shown me that at times, nature gives us tools to help us deal with our situation. We can obtain, courage, strength, patience, humility etc, even if we didn't think that we possessed those particular characteristics in the first place.

I met this particular gentleman, by chance, as he wanted my help with something. He had fled from war torn Afghanistan, to England. Here, he was diagnosed with stomach cancer, and has had most of his stomach removed. He has been recovering for a year, from a very gruelling time. Not only is he struggling with his illness, he struggles with the language too. Trying to make his way in a very unfamiliar culture, on his own, with language difficulties and a serious illness to treat.

Why did he want my help? He wanted to give something back to this country!!! He was grateful for what had been done for him, but was struggling to find an opportunity to help people.This was a very moving experience for me. People always tell me that they find me inspiring, ( an over used word sometimes) but this man made me feel very humble in his presence.

He had found strength from his illness, and there was no obstacle too large for him. So many people I have met, that have been touched by illness, in one way or another, have found strength to deal with their numerous problems. Sometimes it can take a life changing event, to find the real us. This doesn't always happen immediately either. Sometimes we get weaker before we find that inner strength.

We all have problems to deal with, that are out of our control, and things that maybe we are facing for the first time. It might be that this problem is the toughest thing that we have faced.But we generally are able to deal with it, even if it takes a long time. It might feel that it is never going to end, but it does. Generally we come out from that experience, stronger in one way or another.These situations help form our personalities and make us the people that we are, and whether we realise it or not we are constantly evolving.

A very current example of the sort of thing that I am talking about is the Paralympic Games. All the competitors have turned their disadvantages, to strengths, as they concentrate on what they have, and not what they don't! They take what they have and make it better. I have heard interviews with some of these guys, and some were born with their disability, and others got it in later life. Look how they have transformed their lives.

I am very aware that this is not the case for everyone, and some people struggle in adversity, but in most cases that I have experienced, people have eventually come out of the process, stronger in many ways.For a lot, their lives have changed completely.

Are you facing some tough times? Financial, job, health, or relationship issues? Do you feel weaker or stronger for those experiences? Where are you in the cycle? Please feel free to share your thoughts.

Monday, 20 August 2012

Is stress increasing, in our lives today?

In the last five years, so many things have happened to me, both physically and mentally, that I often lie in bed, and struggle to come to terms with it all. When I look back, before my diagnosis, although I was approaching 50, in the pictures that I have, I appear to be relatively care free and full of life. Since then, the numerous pictures that have been taken, show me in various different sizes, due to treatment, my hair thinned by chemo, my features gaunt through constant treatment, and a relatively serious face. These weren't posed, just natural, and these show me quite clearly, the toll that has been taken on my body.I can't really change any of this but, it does explain why it has happened.

I have always felt that I have dealt with stress quite well in my life. In my business life I found that it motivated me, and again, on reflection I was under an awful amount at times,as being self employed, I had to succeed or I earned no money! But I was younger then, and maybe I didn't really recognise stress, and certainly wouldn't admit to it!

In the work that I do now, I am much more conscious of the existence, and effects of stress on people, particularly those that are affected by a long term illness. However, I have also noticed the effects on many friends and colleagues. So many conversations revolve around problems at home, work, financial, health etc. Certainly we are all getting older, and those subjects are now more likely to enter into our discussions, but it is definitely much more common.

Anxiety and stress can be very slow to take hold, but they do damage over a period of time, bit by bit, until your body finally starts showing some physical signs. Exhaustion, constant infections etc that you find difficult to shift, or maybe worse. The biggest problem is that we all struggle to recognise the signs. Once any sort of condition has a real hold on you, then it is always more difficult to resolve.

When I was younger, I used to imagine that life would become easier as I got older. Why shouldn't it? In theory your debts would be decreasing, your children would be growing up, your career would be organised, and your pension would be building. Just a question of how to spend it, to worry about eh?? Some of those parts didn't work out for me, neither are they for my friends/colleagues.

Why hasn't our life become easier? We have computers that can almost do anything, modern homes, fast cars, fancy restaurants, labour saving gadgets to do most tasks we don't want to do. So much better than the life we had as kids? We have fought to help our children not ' suffer as we did, growing up.'

Is it that stress has always been there, and we just got on with it, but now we recognise it as a medical condition? It can be the cause of many serious conditions, and if it is triggered by getting ill, you can see how difficult life can become.We can all tolerate different levels of it, and what is stress to one person, is normal for another, that is why it is difficult to recognise at times, and particularly difficult to treat.

So the big question is how to relieve it? Again, the answer is different for all of us, but in most instances, stress is related to work in one way or another, and how do we resolve that? I'm sure that even people doing what might be considered to be simple tasks, suffer an element of stress. Work involves dealing with bosses and colleagues, where you will always get a mixture of opinions, and on top of that, there is the pressure that you bring on yourself, as we all want to be as good as we can, and get upset if we can't achieve what we are capable of.

Like a lot of conditions, the symptoms and treatment are very individual, and also, for a lot of people difficult to understand from the outside. How can we truly understand what is going on in someone else's head. We all deal with things differently, so how could we?
During the Olympic Games, I'm sure all our problems just didn't disappear, but it felt that everyone was so happy The weather has been good for a few days, and we are all out and about smiling again.But then after a few days, back came the economy, bombings round the world, politicians, and generally bad news.

Since I became unwell, I have tried to remove ' the aggro factor ' slowly from my life. Now I am no longer able to work, I don't have some of those issues, but different ones because I want to! I got rid of my second car, my house is as maintenance free as I can make it, and I only get involved in projects that I want to, as a volunteer. I don't have any fancy job title, or career to worry about, only how to fill my time in between hospital visits. Apart from my health issues, I certainly lead a much more simple life than I did. I could start thinking about finance, but I can't work, or change my situation so, although it has taken me many years to accept it I have to live with it!

Do you consider yourself affected by stress, and if so, how do you deal with it? Do you have any suggestions for other readers?

Thursday, 16 August 2012

" I don't need help, I'm a man! "

I have always been an obstinate man, and  thought that I knew best. To be fair, I have always listened to what others have had to say, but have generally gone with my own judgement in the end.

 When you are a young man, all the testosterone is flowing, and no one is going to tell you what to do. You think you are invincible, and when people talk about looking after your health, and start thinking about pensions and the future, you just laugh! At no stage in my life, have I felt out of step with my peers, as we laugh and joke about our aches and pains, so it seems that we are all similar. "Go to the doctor, you must be joking! It will get better, it always has. I can't afford to take any time off work. The doctor is always busy, he won't have an appointment."

Generally,men have very few close friends, and personally I have found it very difficult to discuss my health issues, particularly, before my diagnosis. My wife recognised that some of my symptoms were serious, but I never even mentioned them to my friends. I just said that I felt tired.

On reflection, I still can't believe, that I had so many things wrong with me, and I yet didn't go to the doctor until it was nearly too late. I had night sweats, rashes on my legs, aching joints, a sore throat, and unusual bowel movements. I thought they were all unrelated, but no, how wrong could I be! I was actually covered in tumours, and my Mantle Cell Lymphoma, had reached stage 4!!

My example is probably fairly typical, of a lot of men. That is one of the reasons why cancer survival rates in the UK are poorer than most of Europe. By the time a lot of cancers are diagnosed, they have spread through the body, and are very difficult to treat.Things are slowly improving, and it seems like every time someone famous is affected, we have a temporary purge on that particular disease and symptoms.

A couple of the most common cancers that men suffer from, are testicular, and prostate. In a lot of instances, some of the early symptoms are recognisable, but we still feel loath to go to our GP. There have been a lot of campaigns to help us recognise the symptoms, so things have improved there

This issue with male attitudes to help/support does not stop here. It seems that it also applies to going to the dentist, and any form of emotional support. Men just do not seem to be able to ask for support even if they actually need it! I always remember if I was navigating, and my wife was driving (pre satnav!) even if we were lost, I would even hate asking for directions!

With the amount of information these days, so readily available, you would imagine that it would be the GPs complaining, about the never ending queue of men requesting a check up.But still we have the same issue. Man's resistance to support. It seems that this attitude is extremely difficult to change. In certain cultures, this problem, becomes worse.

Personally, I have now learned my lesson and can recognise any abnormal symptoms. I work tirelessly raising awareness of all issues around cancer, and have extended my reach by writing this blog. However, when talking to groups, in various different settings, the men are still in the minority.Maybe social media, is a new way of getting men to understand their issues? Certainly there is a lot of work to be done, because I know that even amongst my friends no one really thinks it will happen to them!

Is it fear, machismo, lack of knowledge, pressure at work? Do you find it difficult to ask for help and why?

Sunday, 12 August 2012

Volunteering, and the power of working together.

I'm sure that during the last few weeks you will have either read about, or experienced personally, the incredible work done by the volunteers and London Ambassadors, at the Olympic games. In many reports that I have seen and heard, it has been said that this was one of the most memorable things about the games. How everyone was so friendly and helpful, and how professional the volunteers were.

As I am directly involved, in volunteering, in several different areas, this came as no surprise to me! Every week, and in many contrasting environments, I see people, bringing their very different skills, to a cause they believe in, to help improve things. Without these people, a lot of organisations wouldn't be able to provide the services that they do.

The true power of volunteers, in my opinion, is that because the cause that they are working for is close to their heart, they come with a passion and energy, and come from a different direction to paid employees. Our time is very valuable, and we all choose very carefully how we spend it, therefore if we volunteer time to a cause, we must really believe in it.

If this energy is captured and built upon with relevant training and encouragement you can see what a valuable part a volunteer can play. However, I sometimes feel, that because people work without pay, that their role is slightly undervalued at times, so I was very pleased to read the recent Olympic reports, which have put volunteering back in the headlines, and will hopefully encourage more people to get involved.

I am very fortunate in the things I do, as I work with charities, both local and national, and the N.H.S, and of course I am a patient, so I get the opportunity to see cancer care from many differing perspectives. One of the things I feel that needs to improve is, how we work together. This is something I am keen to encourage in the work I do, so when asked, by Macmillan Cancer Support to talk to a new group of interns about life as a cancer patient, I was excited. I have always felt that this would help people understand the real reason, we raise money, and help them to understand how their work fits in to the bigger picture.

When feedback from the induction was presented, it showed how useful they had found my talk, and I was pleasantly surprised to be approached a week later by four interns who asked if they could find out more about cancer, and the work I do. I spoke to several professionals at St Georges, who were very keen to set up an information sharing afternoon, and having confirmed with Macmillan, I organised a trip for the team to see a Macmillan Information Centre in action. We also visited a couple of wards where people are treated, and St Georges charity, where I and many others raise money for the hospital.

What a fantastic learning experience, this turned out to be for everyone concerned! Obviously, the Interns experienced a lot of things for the first time, but they could now fully understand the effect of the work they do. They also saw the contrast of a local charity, and how different it was to Macmillan. More importantly, they understood better, more of the problems that people affected by cancer, face.

The professionals were absolutely thrilled to be able to talk about their work, and were very proud to be a part of talking to people from Macmillan h/o. I know that they really wanted to play their part in helping them understand more. In fact it was a great opportunity for them to learn first hand, what different people do at h/o.

The interns were telling me how so many of their colleagues would like to also take part in a trip like they had done, and I would like to think that this is something that we could offer in the future. What I took from the day was the feeling of togetherness, that happened very quickly.Although we were all doing different things, very quickly, we became a team, and could all understand how our different work all fitted together.

I would like to thank both teams at Macmillan Cancer Support and St Georges in Tooting for making the trip happen, and thank the Interns, for thinking proactively, and asking to learn more. We have seen in the last few moths of what can happen when we all come together. The Jubilee, the Olympics etc. Something has ignited the feelgood factor, so let's do our best to keep it going!

Tuesday, 7 August 2012

How inspiration fuels our lives.

The subject for today's post has been incredibly easy to choose! The word inspiration has been used frequently in recent weeks, particularly in regard to the Olympics. Maybe it is a word that gets over used these days, and we all use it slightly differently, so I found a good dictionary definition that sums up my understanding of it.

" To be so successful, or to deal with a difficult situation so well, that other people admire you and want to be like you "

I have been watching day after day, as a lot of seemingly normal, emotional human beings, achieve things beyond their wildest dreams. They all look in great physical shape due to continual training, and are peaking, for their chosen event.But behind a lot of that success, are a lot of incredible, personal life stories, of overcoming huge challenges, both mental and physical.

As in everyday life, how you deal with those situations, can determine the outcome of your life. There are several competitors that have had personal tragedies in their recent past, but have been able to use those in a positive way, and have gone on to achieve unbelievable things. Also,there are others that have struggled with the weight of expectation and have not quite achieved what they hoped for.

There are some very famous athletes competing in the games, but you are not born with a gold medal. It is something that has to be worked for. Yes, there are riches that will undoubtedly follow success, but that all has to be earned and sacrifices made. I am sure that many of us can see that these guys are not much different to us. They had a dream, and were fortunate to be able to follow it. Their determination to succeed is what has inspired me the most.

Old records are being broken and new ones being set. This is because the new competitors are continually inspired by previous achievements, and want to improve on them.In all walks of life, we want to improve on what has been done before. Our fathers have inspired us to go faster and further.

Coming away from the Olympics, I am constantly inspired, by nurses and doctors I meet, who make many personal sacrifices to put their patients first. Also my fellow patients, a lot of whom, battle on against all the odds, with a continual smile. They know that their life will never be the same again, but make the most of what they have.

What I have truly understood, about inspiration, is that we all use it to drive us on. Also in some small way, we can be  an inspiration to others. It is something that we both give and receive. I am not really sure how many of us realise that! Even in some very simple circumstances, we may be inspiring others to reach for greater things.

When we are at work, or out socialising, we should be aware that people are looking at what we do or say. Maybe they think that we are an example to follow, maybe not! I have always believed that we are all good at something, and I am always inspired by people who can do things well, that I can't do at all!

If I see someone do something special, it inspires me and gives me hope that possibly I can do something too. It tells me that within reason, things are achievable if you try. This is all relative, as we are not going to be Olympic Champions, or Premiership footballers. But we can be inspired to do realistic things that are within our grasp, by looking at what others have done. By understanding that a task really can be achieved, it might drive us to achieve more.

Thursday, 2 August 2012

Time, and how we choose to use it

Until my diagnosis, back in 2007, I was amongst the many people who never really gave time too much of a serious thought. I suppose that I was so busy in my own little bubble. I never really thought that it was limited! I imagined that it would always be there. Of course people die, but I wouldn't be thinking about that for a period of time, and I was going to continue enjoying my life!

I had a bit of a life plan, meaning I knew roughly which direction I was heading, but was always aware that as I was getting older, my career options were narrowing, and I did have an end game strategy to finally give up work. My business was a young mans game and I was aware that I couldn't go on too long.

However, when nature stepped in, all my decisions were taken away from me.It wasn't my choice that was dictating any more, it was my health situation.This was a very alien situation to me. It meant there were things I had to do, before things I wanted to do.As things went along my situation has meant that I spend a lot of my days in a hospital environment, for either treatment or tests and check ups.

This has ensured that I revalue my use of time. I try and prioritise things differently now. I can now equate my medical life, to a job. Something I have to do, whether I like it or not. So I am not too dissimilar to many readers. A proportion of my life is spent on something that is not my choice. Now the choice issue opens up. For me, the most important way to spend time is with my family and friends. Maybe it is an age thing, but special times with friends mean so much more than material things.

Even though many of my friends have retired now, it is still difficult to make a plan, due to either our, or their commitments. Months can go by, when we don't see each other, and if you aren't careful, you can get out of the habit, and then years go past.Everyone leads busy lives, and I know that it is difficult to arrange to see my own son and his family, as they work, and their weekends are full of social arrangements.

This got me thinking about social media. A lot of people use it now. Certainly, for the younger generation it is a way of life. Some of us older guys are just getting used to it! Does it add to our lives, or take something away? I wonder whether it is taking away our social skills, because it is certainly easier to communicate by computer.I notice much more frequently that people text, or email, rather than pick up the phone. Even I have started doing that! Maybe it is a good thing? It is certainly a new style.I worry that people think that because they spend ages updating Facebook etc, or Skypeing their pals, that this is what a good relationship is.

We all let each other know how busy we are, I don't know why, but we gain some comfort from that! However, I have seen, particularly in recent times, with The Jubilee celebrations, and the massive summer of sport that we are having, including the Olympics of course, that people can find time for things if they really want to. Wimbledon, Euro2012, golf, cricket etc. a lot of my friends and colleagues got tickets to go to these various events, as they were considered 'must do's'. I fully understand that, but my point is that there is always time to do something that you really want to. You will find it!

How we spend our time is our choice, that is the fun of life, and that is what makes it interesting. The fact that we are all different, and have different priorities. What is the answer? Do we ' live for the day, ' ' there's always tomorrow ' ' worry about tomorrow when it comes '  Maybe not thinking too hard is the answer!! Just be happy being lost in our own bubble? It was working well for me. Sometimes, ' ignorance is bliss '.

From my various experiences about the value of time, one saying sums it up for me, and that is " Don't put off till tomorrow, what you can do today"

How do you spend your time, and does social media, enhance your life?