Thursday, 26 July 2012

Positivity, do you have it?

One of the most common phrases used by people talking to cancer patients is, " You must stay positive!"  This is something that not only applies to people who are unwell, but everyone really.It has become a bit of a throw away line now, as it is said so frequently in many different scenarios. My comment on this phrase is that you really must consider the person that you are talking to before you use it.There are many people who just do not feel at all positive about their situation, no amount of telling them to be positive will change that. In many instances it just makes them feel worse!

On my recent visits to hospital for my treatment reviews, I have been told that I will need my treatment to continue, at least until Christmas. As you know it is a very harsh regime, and my Consultant has been amazed what my body has withstood.( Me too if I'm honest!) It is every two weeks but some people have it only monthly. I told them that I wanted to continue on my current cycle, so that I could complete it as quickly as possible, as I wanted to try and get on with my life.She said I had a very positive attitude.I didn't really see it like that. I just want to get to a stage in my life, where I can start living by some choice, and not dictated by my health.But I guess that I always have to remember, that I'm grateful to still be here moaning!!

I have always been a positive person, as I have mentioned in some previous posts, but it got me asking why? What makes me that way? Why can't people become like that when they need to, and logic tells them that it would be in their best interests? What an incredibly interesting species we are. You can put people into an identical scenario, and you would have completely different results.We all understand things differently, hear things differently, and say things differently.Some people will be positive, and others will be unable to see any.

Regarding my own positivity, I have a few ideas where that came from as I most definitely wasn't born with it! I was very poor at school, so when I left, I was under the impression that I was heading for the scrapyard. But it turns out that I was good at something, and achieving in the business world became routine. That in turn gave me confidence, and I started to believe that whatever I touched would turn to gold. In most instances it did, and the more times it happened the more my confidence grew.

Age, also goes hand in glove with experience. So as I got older, I had dealt with a lot of major challenges in my life, and felt that I could handle most things that came my way. Thus my confidence grew further. Why shouldn't I now be confident? I thought I could conquer the world!! It seems that nature has decided otherwise.

Even when given my very poor prognosis, I was still positive. My life experience had shown me that even under the most difficult circumstances, I had come through.I have to keep thinking like that. I have seen all the facts and figures about my disease and treatment, and I have had almost every possible complication there is, but I still believe that there will be some life for me, after all this is dealt with. I feel that I have come too far, to give up now.

I make people smile, when I say that I look at life as a game of Snakes and Ladders. I have spent a long time, getting half way up the board, and although I have gone up a few ladders, I have certainly landed on a few snakes! This time I aim to only get the ladders.

Positivity. Are we born with it, can we learn it, do you have it or not?  What do you think?

Tuesday, 24 July 2012

Three words that can change your life forever!

I have now just passed the fifth anniversary of receiving my diagnosis and prognosis. I know that as the doctor told me those three words, I really didn't comprehend the full impact that this would have on my life. Mr Lewis, " You have cancer ", was not what I was expecting to hear. After all, I thought I had only gone to get my throat checked out after a routine removal of my tonsils.

I had previously never had any health issues, and anyway, I am a lucky guy, so it can't be that bad! 'Tumours', 'Incurable', 'at least a year to recover', were all things I recall, but I was in such a hurry to get out of the hospital, the news hadn't really sunk in. I was talking about work and my wife was crying! It really felt so strange, that I thought I would wake up and it would all be over.

It wasn't, and a new chapter in my life had opened. In the space of a 15 minute meeting, my life had changed forever. I still wonder today, just how many people that doctor had to give similar news to, in a days work.The contrast in my life now, just couldn't be more different than it was.

 I went to lunch with my ex work colleague this week, and we were recalling some of our more memorable moments.I remember doing those things, and having such fun, but it almost felt that we were talking about a different person. The people that I work with now, just would not believe how I earned my living.Due to the vast contrast I mentioned earlier, I am still trying to adjust, and there are still flashes of the old me that come out!

I have chosen this subject for today's post, as this week, I met a lovely man, who was having some treatment for the first time. I am an old hand, and have been having it for 7 months, so I was talking to him to explain what was going on. As the session went on, we started exchanging stories. This seems to naturally happen when I am around!! Apologies to my fellow patients who want to have a restful afternoon.

This gentleman was 3 months out of his stem cell transplant, and was beginning to get some of the side effects that I had already faced. He was a big strong guy, and he mentioned that he had a tough manual job, but had just been made redundant, due to his illness! He was worried what the future would hold for him. He was 40 and looking forward to a long and happy life with his family.

It reminded me about my early feelings, although he was 10 years younger than I was, and they told me that 50 was young to get the disease I got! I was lucky in many respects as my children were grown up and working, and most of my mortgage was paid, by the time I was diagnosed.His problems are tougher.

For everyone hearing those three words, there are many common emotions. Fear, isolation,  confusion, bitterness and financial worries are just some that spring to mind.Most people ask, "Why me?"  Some people I talk to actually expect to hear it, as their parents were affected. But once you have been given that news, how do you make a plan? So many things start happening that are out of your control.

Therefore that steady path, you thought that your life was taking, has been re routed, into uncharted territory. It certainly feels like someone has taken away the steering wheel, and is driving for you. It can be a very uncomfortable place.Even after 5 years, I find that I am unable to plan too much, as my health can be so up and down at times. It is difficult to live this way but I have just learned that 'Que Sera Sera, whatever will be will be'. Bring on tomorrow!!

Saturday, 21 July 2012

Taking resonsibility for our own health

I seem to have watched several tv programmes in the last few weeks, that have investigated the reason why people in Britain are becoming obese. We already know what is happening in other countries, but it appears that we seem to be following the trend. Even my son, remarked that in documentaries from the 60s and 70s, he rarely observed people that appeared overweight.

I am sure that we will all have differing opinions on why this is happening, and I have listened to many over the period. Three for me stood out. Firstly, marketing and flavourings etc, from food companies. Delicious, calorie filled attractive looking food, targeted at children initially, who will develop a taste for that type of food as they grow up. Secondly, people blame lack of time to prepare a meal, so they go with fast food. Thirdly, people feel that Government should put certain restrictions on food companies to force them to comply with guidelines that are currently voluntary. ( Ineffective and meaningless!!)

To add to issues around our diet, I was then involved in discussions regarding patients and medicines, combined with attendance for appointments.The role of hospitals was discussed, and duty of care to the patient, was a commonly used phrase. Despite the fact that some patients didn't collect their medicines as they should, or even attend appointments if requested, there was still a duty of care on behalf of the hospital and GP.

All of the above prompted me to think about what our society is becoming. Are we creating a society, where we need the Government to tell us how to do everything? Why are we always looking to blame people for problems, that we could solve ourselves? This just seems the easy way out. It seems that when something happens, it is always someone else to blame. Surely there comes a time when we must be responsible for our own choices.

Many years ago, when we didn't know what certain products would do to our bodies in the long term, I could understand why people continued along their path, happy in ignorance. But today, all the facts and figures are laid out in front of us, yet many of us choose to ignore them. Smoking, drinking, lack of exercise and poor diet, will almost certainly create health issues in the long run. If we then do not even attend for a hospital appointment or take medicine as prescribed, what can we expect to happen?

Life is about choice, and I think we couldn't imagine it any other way, but so many people seem to make wrong ones in certain key areas of their life. I guess this is always going to be the way, as we have been making the same mistakes, as long as we have been on the planet. But given all the information that is readily available these days, it is frustrating to sit by and watch it happen.

Governments talk unconvincingly about using legislation to keep giant international food companies in line. They in turn argue, that it is up to the consumer to decide, what they want to put in their body. To a degree that is true, but why do they use all sorts of marketing ploys, and go to such great lengths, to truly hide what their products contain.Is this all about money? I suspect so.

Ultimately, it is only ourselves that can decide how we choose to live our lives. We are all targets, of massive, ongoing advertising campaigns, being bombarded by marketing wherever we go. We must start taking responsibility for our own health and well being. Life would be very boring, if we all stuck to what we should do, and I am certainly not a good example of that! But I do know my own boundaries.

In my five years of constant treatment, I have never missed an appointment, unless I have been too sick to attend, and have always taken my medication as prescribed. This certainly has a part to play in the fact that I am still alive.I decided that my team were the experts in my condition and I would be stupid not to do what they told me.I have never smoked, and now drink very little. I am not a massive eater, but certainly do not hold back on the treats! Most of my pleasures in life seem to have been taken from me, so I figure a bit of tasty food every now and again will be ok.

Instead of always looking round for people to blame, lets be more concerned with our own actions, and what results they might have.It is certainly easier, if in every situation, someone else is responsible. But life was never intended to be easy!

Tuesday, 17 July 2012

Nurses and their major role in my treatment

Since starting this blog, just over 5 months ago, I have mentioned a lot of aspects of the care I have received, and continue to receive. I also attend hospital for three days every fortnight, to receive various treatment regimes. Due to the numerous complications of my disease/treatment, I am dealt with by the same team of nurses each time I visit. This is great, as it means that they are entirely knowledgeable about my case, and will know all the little quirks that my body has. Particularly regarding my terrible veins, that are so difficult to canulate!

For those of you who don't know, I am treated at St Georges  and St Thomas' in London. Both teams are now very familiar with the workings of my body. I am sure they wish they weren't! But it makes it very easy when receiving treatment. Both parties are comfortable with each other, and as familiarity increases, then anxiety decreases. We now know each other so well, the treatment dates have almost become part of the social calendar!

But I realise, what this has done. I have felt so comfortable with the nursing teams, that I have taken them for granted!! I can't believe I have done that.I haven't yet written about the very important part that they play, in my general well being. Sure, I need the knowledge of the Consultants and Registrars, and the drugs, and the technical machines, but if I analyse things, my nurses have been with me at every step of my journey. The doctors dip in and out, but the nurses pull all the bits together.

If I think back 5 years, other than my initial diagnosis and prognosis, most of the rest of the work was done by nurses. Initially, I was introduced to a Macmillan Nurse. I didn't really understand why, but my only knowledge was that you had to be seriously ill to have a Macmillan Nurse. This worried me initially, but it was explained to me that she was an expert in my particular situation, and cancer care.Over time, people's understanding of the role of a Macmillan Nurse has improved and Clinical Nurse Specialists, are more common than they used to be. I think it is very reassuring to be treated by nurses who specialise in oncology and haematology.

Then there were the nurses who gave me chemotherapy. Wow, there's a job. A full ward everyday. The patients are generally anxious, and awaiting the very toxic drugs that can hopefully improve things for them.Everyone requires a different drug or combination. This requires check after check, and all this set against unforgiving time deadlines. These ladies were absolute angels. I say ladies, which is a bit of a generalisation, as there were several men too! Very patient and knowledgeable people, it was almost a pleasure to see them.

My case was overseen by a Bone Marrow Transplant Coordinator, who looked after all my appointments in the hospital. She coordinated my treatment, and worked with my stem cell donor, through the Anthony Nolan Trust. She became almost my secretary, and made life in the hospital that bit easier for me.

Moving onto my transplant, I was in an isolation unit for 6 weeks and was cared for 24/7 by another wonderful team of nurses. Those people did absolutely everything for me, in that time, including measuring body waste daily! They fed me, bathed me, clothed me, and anything else I required. I felt awful even asking them to do anything, and having your independence removed like that is a massive blow, but these guys totally understood, and nothing was too much trouble for them.

Bringing things up to date, I have my blood treated every two weeks and the team who do that are all brilliant too. A continual stream of patients with different problems, and limited numbers of machines. People arriving early/late for their slots, are all greeted in the same cheery manner. Their level of expertise is fantastic, and I have learned a lot about my blood, from these guys.

I now realise what a major part, nurses play in our treatment and care, and I feel are very underrated. I think it might be like most things in life.You don't realise what you have, until it is gone! They seem to do such a good job, I forgot about them. I'm sure they will find a way of repaying me!!!!!

Do you benefit from our wonderful nurses? Feel free to share your experiences.

Monday, 16 July 2012

" Thank you for such wonderful care! "

People constantly ask me if I will run out of things to talk about on this blog. When I started writing I did wonder, but I surprise myself, when I sit down and think about how many interesting things happen in my life. I suspect, that my life is no more interesting than anyone else's, just that I have more thinking time. I have time to reflect on peoples words and actions. My disease has given me a lot of time to bounce things around in my head. Things that maybe if I was working, I wouldn't give any time to.Since I am not, I have time to look at the world, from a different perspective.

This post has come about for two reasons, and is particularly timely. On Friday, I was unfortunate enough to need a blood transfusion, as my body is currently struggling to deal with my disease, and the aggressive regime of treatment that accompanies it. I am losing nutrients and consequently, my energy levels are dropping rapidly.As regular readers will be aware, I am treated at St Georges in Tooting, and have been for more than five years.Unfortunately, it has become my second home, but that is the highest compliment I can pay it!! From day one, I have received incredible care, from the Oncology and Haematology depts. So much so that I spend my spare time raising funds for the ward that looks after me, ( Ruth Myles ), and work with the management of the hospital to try and improve facilities for cancer patients.

What happened on Friday, summed up my whole experience, and was in a total contrast to the very sad case of Kane Gorny, who's story has been well publicised recently.

I have been discussing my physical symptoms with my consultant as I have been feeling worse and worse as the weeks went by. When I went to St Thomas's for my regular treatment, their tests showed that my red blood cells had dropped too low to continue treatment.They told me I should let St Georges know. I emailed my blood results and the very next day, I had a call back to say that they were arranging for me to have a transfusion the following week. Also I would need a programme of nutrients, which they would arrange. This was done without any phone call from me, having to chase anyone.

Everything was duly arranged, and I went in on Friday.Everyone was pleased to see me, from nurses to doctors, and my fellow patients. My chair was ready, and everyone knew what was required. I was spoken to by numerous nurses and my consultant, to explain that it may take a bit of time to match my blood. This I fully understood, but it was nice that I was told. As regular patients will know, hospital time can pass very slowly, but the tea and coffee was flowing and lunch was served.

Matching my blood proved a bit tricky, and when it eventually came, it meant that my treatment wouldn't finish till at least 530pm. This meant that someone would have to stay with me until it was finished. This was no problem, as the staff were so helpful, and were not concerned to stay beyond their time. During my marathon day, I was visited by staff from other departments who wanted to drop by and say hello. Before I knew it, my treatment was done, and I was wishing the staff, a great weekend.

I also receive very similar care at St Thomas's and their Haematology team. I am always welcomed, and feel very comfortable there. The staff have almost become friends, but the boundaries are never stretched! Everything about my care is absolutely top class. I have never had to raise my voice, to get anything done.

My case is a particularly difficult one, and has been going on for more than 5 years now, but I am never given the impression that I am a nuisance, although I do feel that way at times, as I seem to have one problem after another.

We are always very quick to criticise, when things are not as we expect them, but not always so quick to praise, if something is done well. I see at first hand, a lot of the problems that hospital staff face, and I certainly don't envy them! Yes, it is their chosen job, and they get paid to do it, but let's not forget that they are also human beings like you and I. We all make mistakes! In any field, you will find people who are not up to the required standard. I blame the system not the people. Unfortunately, due to the pressures in our system, from finance and pure numbers of patients, there will always be something that can go wrong. That is the situation from the very top to the bottom in our society. The trick is to devise a system that means one persons mistake is not critical.

After recent days of reading about my hospital in the media, I struggled to recognise it, as the place that I get such wonderful care! I really do appreciate how lucky I am, and that I truly owe my extra life to the skill and care of the staff in the N.H.S. Thank you to everyone involved with my care!!

Thursday, 12 July 2012

Football is my most potent drug!

I would like to start by asking those of you who don't like football, not to stop reading! I am very aware that it is not everyone's thing, and this blog is not a football blog, but I wanted to explain, how for me, it is a very important part of my overall therapy. I am sure that we all have a hobby that we are passionate about, so please substitute, football for your passion, then you will get the idea!

For the past five years, I have been through some very dark times, and if I'm honest, still have them. I have nearly died twice from treatment, and have suffered so many different side effects, that it is almost impossible to live something approaching a normal life.Since this all started, something affected my brain and I have been unable to sleep properly. I put up with this for a couple of years but my health was getting worse, and it was turning into a mental nightmare! I used to sit up most of the night watching TV. I just couldn't understand, why I couldn't sleep. The hospital were concerned as my body couldn't complete the healing process without proper rest.

They put me in touch with a clinical psychiatrist, who explained that my brain was like a computer. That hasn't been said very often!! He explained that although I had still switched off, there was a programme still functioning in my brain, and he suggested taking some tablets, to switch off that programme. Of course the normal dose wasn't enough so I took double and that did the job! I still have to do that now.

It was explained to me that the shock and physical trauma of what I was going through, had triggered something like the grieving process. My loss being my normal life. I found that as I was either in hospital or at home, I had a lot of thinking time, and I just couldn't escape my own thoughts. But there was football! As most of you may be aware, I am a passionate Crystal Palace fan, and my wife and I, and my boys have season tickets to watch them. Some might think that staying at home with your thoughts is a better option than watching The Eagles, but I found that, for a couple of hours I managed to focus purely on the match.

At last I had found something to take my mind off things.I go to the matches as regularly as I can, and catch up with my football pals. We discuss all things football, and my issues seemed to have disappeared temporarily. It also happens when I am watching it on TV, or reading about it. A magic drug, for me anyway!

I then started to think about the power of football in society in general. Wherever I travel, be it in the UK or abroad, very quickly I am involved in a football conversation, much to the dread of my wife! Most people have a view about teams, players etc. Generally people are very passionate about their team even if they don't go to games. The subject of football, crosses generations, sexes, politics, religion, and nations. In fact to some people it is a religion of it's own. I know it can be tribal at times, but I think that all football fans appreciate a wonderful piece of skill, even if it isn't from their own team.

Football seems to stir passions like nothing else. We are in a major world economic crisis, and we have a temporary passion against the Government, Bankers, the Media, Politicians etc, but that will all eventually calm down, unlike our passion for a game, and its major players.I wonder why that is?

Without my focus on football, I don't know what shape I would be in, and I know it sounds sad, but I can't wait for next season to start! I'm sure that at Selhurst Park, it will be same old, same old, but for me that is a good thing. It is my temporary escape into another world.

If you're not a football lover, what would do it for you?

Sunday, 8 July 2012

" I want to give something back "

This must be the most overwhelming feeling that people get, when something life changing, happens to them. For me, it was the only thing I could think of, during weeks in my isolation room. How can I help these people that are keeping me alive? What on earth could I do, that could help them in some way? A very big question! It was almost impossible for me to do anything for myself,can you imagine how humble that can make you feel? Not only did they do it, they did it gladly!!

All that I could think of doing, was attempting to raise some money, for that ward, to hopefully purchase some extra equipment and enable them to help more people like me. I felt that it was a good scenario. Firstly, the ward would gain something, secondly, it would enable more patients to be helped, and thirdly, I would feel a lot better about myself!

Since working with the hospital, I have met so many other patients, family and friends, who are all doing the same thing, for the same reasons.It seems that this is a natural human reaction. If someone does something good for us, we want to reciprocate.It gives us a form of satisfaction. For some people, it can bring closure. It can be the end of a very long health journey, with whatever outcome. They do their fundraising, and that is the end of that chapter. For others, it can be just the start of another journey.

Fundraising can become addictive. It is very difficult initially, as you have a vision, and normally it is very personal, it is difficult for others to see the same. But generally people are carried along on your wave of passion. Once the money starts coming in, and your target becomes more achievable, many people, increase their target and become more ambitious. For a lot of people, giving and raising money is their preferred option of giving something back.

There are however otherways of giving something back, and the next most popular way, is by volunteering.There is a massive contrast between this method, and fundraising. In most instances, this involves giving up a slice of your personal time, and going to a place and doing some form of work, with other people. This can involve anything from basic office tasks, to helping patients in some way. This is a direct way of giving something back.

For many people this might be the more difficult option, as there is very little time left after doing your paid job. However, for people like me who struggle with their health, they may be able to volunteer, with a flexible programme to work around their own issues.Charities, are much more aware now, that volunteering is becoming more popular, and are looking into new ways of working, to provide opportunities for people to volunteer, out of normal office hours.

In my role as Volunteer Coordinator, I speak to so many people every week, who want to offer their skills, unpaid, just to give something back. Maybe for care that they or their relatives have received, or maybe they have just reached a stage in their life, when they feel that they feel that they would like to do some good, and help others, for no financial reward.

There are many other reasons that people volunteer, but in my experience, the vast majority, want to repay something in some way.Volunteering is a great way to further a cause, support an organisation and make a difference in your community. It can also be an opportunity to meet new people and learn new skills. If you'd like to give something besides money, consider lending your time and talents to organizations that are important to you.

According to statistics, more than 10million people in the UK, volunteer regularly at least once a month. It has been said that if everyone stopped volunteering, that the country would quickly grind to a halt. Think of all the good causes around the country, that help millions of people, that all rely on the goodwill of people with that, wanting to give something back feeling!

Personally, that feeling has never left me, and the more I give, the more I want to give!! What about you?

Tuesday, 3 July 2012

Changing shape and appearance with illness

I  was talking to a lady yesterday, who has been suffering from a disease very similar to my own.Until her diagnosis she enjoyed a very normal life. Now, her life has been turned upside down. I have got to know her, as she was introduced to me, because she wasn't sure if she would have a stem cell transplant, and wanted to talk to me about some of the possible side effects, and how life might be for her afterwards.

One of the things that was important to both of us, was nice holidays. She told me that she was very proud of her figure, and that she couldn't wait till her summer holidays came, and she could wear her bikini.She always looked after herself, and her appearance is very important to her.I did explain that the transplant regime would be tough from that perspective.She decided to proceed with the transplant, as in honesty, there was no other realistic option.

We both agreed that it would be one of our ambitions, once all this tough stuff is done, to go on a lovely warm, luxury holiday. I have only been able to go away to foreign climes for one week, in the last five years, so I am looking forward to it too! When we spoke yesterday, she was in hospital, suffering from GVHD of the gut, being unable to keep any food in her system. Her hair is starting to grow back, but she has lost a stone in weight. She is now on a high dose steroid regime of treatment. Again, we talked about holidays, and appearance, during treatment.

One major side effect of cancer and it's treatment, is the possibility of your physical appearance changing. At times, those changes can be quite dramatic. These can certainly have a long lasting effect on you both psychologically and emotionally. If this happens it can also affect your libido, which can create relationship problems.Obviously, where surgery is involved those changes are permanent.

Like most people, I was aware of my own appearance before illness, and I always struggled with my weight. That was the one area that I would have liked to have changed. I did work quite hard at times but without any tangible reward, so I accepted my look, after all it was me!! But after diagnosis, there followed a roller coaster of appearances. So many, that at times, I was frightened to look in the mirror, in case I didn't even recognise myself.

When I was first ill, my body blew up, like a football. Then I had my regular chemo sessions and lost a lot of weight. I had my transplant, and couldn't put any weight on. I then got sick and needed high dose steroids, which gave me  large face and stomach. My weight was going up and down, and because of the steroids my water retention was high and I looked permanently bloated. To add to this, my hair was coming and going with the drugs. One minute I had hair, the next I didn't. Once I got GVHD on my liver, all of the above happened plus, I turned yellow!!!

Not a great look eh??  Couldn't now imagine myself appearing in an episode of Baywatch. Most of my muscle definition has disappeared, as I have been unable to exercise. After this experience, I have become much more accepting of my situation. I do my best to make the best of how, things are. After all I am lucky to be alive.

I have now built up, a 3 size wardrobe of clothes. M, L + XL. Currently, I am stable in medium, and have been for some time. I have been told that any further treatment, should not involve steroids as my body will have overdosed on them.

If I wasn't the kind of man I am, I think I could have been broken, but I have always managed to see the funny side of things. I remember when my youngest son came to visit me in hospital he told me that I looked like Mr Potato Head, (a childhood toy) My eldest said I looked like a bouncer, because I had no hair, and a very large neck.

I can see that these issues may effect women, more than men. After all, we all like to look our best. But with factors beyond our control, it can be very difficult. Like all side effects of illness some people deal with it better than others, but It is certainly one of the toughest challenges I have faced. How to accept your ever changing appearance?

Have you been affected by any of the above issues I have mentioned? How have you dealt with them?