Thursday, 31 May 2012

We all want to be independent, don't we?

 ' Not relying on others for support, care, or funds; self-supporting'. This is the dictionary definition of independence, in the term that I want to talk about today.

I was prompted to write this post when I saw an older gentleman in a wheelchair, being accompanied to hospital, by his two adult daughters. They were organising his appointments, sitting with him while he waited for the doctor, then taking him along for his tests and then going to collect his medication.

One of the daughters was telling me that he kept talking about his life before his illness which meant he had to go into a wheel chair. She said to me, " Do you know what he misses most"? I said, "I do, it's his independence! " She laughed, as she didn't expect me to know.

I told her, to try and imagine what he was going through mentally. Life was tough for them all, as the daughters were now carers, but what was going on in that mans head must be torture. Apparently he was a big strong man, who loved his food and women. By all accounts, he was a bit of a lad, and led his life to the full. As he got older, bit by bit, his normal life was being taken from him, until he can't even go anywhere without the support of his family. He relies on doctors to keep him alive and his family to look after him. Almost everything left in his life, he has to ask someone else to do for him. Wow!! Can you imagine how that feels?

Some of us are more independent than others, but it is one of the things that I miss most about what has happened to me. Firstly, I am reliant on the medical team that look after me, and I take my life instructions from them. Secondly I am no longer financially independent.I am unable to work and therefore rely on financial support. Thirdly there are many physical jobs that I am no longer able to do, so I have to ask my wife, sons, friends, or worse, have to pay someone to come and do them!

Most people that have a serious long term condition, will rely on support, in one form or another. We are lucky, that we are living in a country where generally, if you need help, you can get the support that you are entitled to. But the biggest thing for me, and most patients that I know, is needing it, in the first place!

How difficult, do we find it, to ask someone to help us? Do we consider it a sign of weakness, I don't know? I can give you a silly personal example. In my first house, there was a lot of building work that needed doing, and although I knew an electrician, I didn't want to bother him, so I did what I thought was right, but ended up cutting through a major LIVE cable, and nearly killed myself!

We all need money, and one of the joys of earning it, is that if there is any left after paying the bills, then we can choose how we spend it. New cars, new clothes, dinners out etc. We can spoil ourselves. That enjoyment disappears too, when you are on some form of financial support.

With constant hospital visits, our time is being eroded, and if we need regular treatment, we become dependent on the nurses and drugs to keep us going. As we get older and less physically able, maybe we are less able to drive ourselves around. Maybe our condition means that we are not allowed to drive, at all.Then we are reliant on other people to help us get about.

The physical issues themselves, are tough enough to deal with, but if you add in the psychological and emotional problems you might face, you can see how tough, living a normal life can become.

Personally, I am a very obstinate man, and asking for help of any description, is very difficult for me. I am a very good giver, but poor taker! But since my illness, I have had to have help to do some of the most basic tasks in life, particularly when I have been in hospital. When I was in isolation I had to pull a cord for a nurse to come in to help me even to wash, and use the bathroom!

I am still clinging on to the hope that one day I will be independent again. Do you sometimes feel some of the emotions I do?

Can you seek help easily? How has your independence been affected?

Tuesday, 29 May 2012

Constant fatigue

I spent the afternoon at hospital yesterday.I left home at 1130am and returned at 530pm. I went by train, which is a lot less hassle than driving, cheaper also! I had several things to do, whilst I was there. I was visiting a friend of mine, who had been taken unwell. I then had a business meeting, followed by my checkup, a visit to the pharmacy, and some business with the charity office.

It was a lovely warm day, but by the time I had done all of those things and was walking to the station, I was absolutely worn out!! I am now 56, and until my diagnosis, had never been ill for a significant period. I had worked all the hours God gave me, and spent my spare time exercising and doing my best to hold back the sands of time! so considered myself to be in reasonable shape.

This has been a concern of mine for some time. I mentioned it to my Consultant yesterday, who explained that the main symptom of my GVHD in my tendons, is inflammation.This means that my body is under constant attack, 24/7 and is therefore fighting back, even when I am asleep. No wonder I feel tired when I wake up, as my body has been attacking the disease all night!

Things have been like this for about 9 months, and there are times, I struggle to motivate myself to do anything, as everything seems so difficult.Due to the work I do, I am frequently invited to do presentations and talks to various people and groups.This is fantastic as it means that awareness of certain issues is being raised, however, I have a capacity for a lot more.

I was asked yesterday, If I would be interested in some very challenging opportunities, which in normal circumstances I would, but I was starting to question my own stamina for larger projects. This is not me at all, as the bigger and better the challenge the more my adrenalin pumps.If I say yes to something, I must do it successfully and in a timely fashion. If I have a doubt, then I won't do it.

How long will this feeling continue ? Of course no one knows! That is life, but it is very difficult living day after day, feeling like that.When I met all the people yesterday, everyone mentioned how well I looked My weight is stable now, I don't look quite so grey, and I am getting some movement back into my body. It is very difficult, when you see someone, to know what is going on underneath. How can you explain how truly rubbish you feel?

Fatigue, is something that most cancer patients face, and unfortunately, the length of time it lasts is indeterminable. For some of us, fatigue is one of the early signs that something is wrong. Then there is chemo, radiotherapy, surgery etc. Even attending a hospital appointment can be mentally and physically draining.

For me, this really is an ' It doesn't happen to me ' time. I'm finding it hard to come to terms with my current situation. Doing some of the simple things in life is so tiring. It has always been my intention to return to work, in some form, but I am concerned, how long this fatigue will continue. If and when it ends, what will I be capable of? I am already resigned to only being able to to part time work. Maybe contract stuff, maybe working from home? Who knows?

When I was given my initial diagnosis, fatigue was discussed, but I didn't really believe that after 5 years I would still be suffering.Before I was involved with cancer, I always felt that some people imagined fatigue! Maybe they weren't used to hard work I thought! Now I know differently. This is yet another example of how people can't really understand something unless they have experienced it.

Sure, we all get tired in our everyday lives. This tiredness comes and goes, generally worse at work and easier in social situations! This leads us to getting frustrated, as we make mistakes and hurry things. It removes our enjoyment, from what we do.

As my team say, ' We have no magic bullet, Mr Lewis'. So I have to try and work round it.That is why I can see the growth in the  social media area of support. To be able to be in contact with people around the world,from the comfort of your own home is a miracle in itself. To be able to share experiences and ideas, is wonderful.This, all at a time that suits you. I appreciate that this isn't a replacement for face to face support, but can certainly complement it in more ways than we thought possible.

How does fatigue affect you in your life? Even if you do not have an illness, do you suffer with the affects. How do you deal with it?

If you have some ideas to share,they will be gratefully received.

Sunday, 27 May 2012

Family and friends,so important in our lives.

I am involved in various different cancer environments in an average week and meet a lot of people, at different stages of their journey. Some just starting out, and some like me, an old hand! Some are accompanied by family and friends, others on their own.

The people that I have spoken to on this issue, have very contrasting views. There are also different cultural views too. A hospital visit, can be quite a daunting prospect at the best of times, so I can understand why people would want the comfort and support that a friend or relative could provide. In some cultures it seems like a lot of family members attend, with the patient, for added support.

My personal view was very different to that at the start.I was always aware that a hospital visit would take up a lot of time. I knew that appointments never ran on time, so there would be a lot of waiting about.I wasn't so much worried about my own time, as I always left plenty of time either side of the appointment. I was more concerned with my wifes time. Even with papers books etc, there can be a lot of waiting around. Then if I was called for tests, there was more waiting to be done. That gave me more pressure than when I was on my own! ( below pic, not me, for new readers!)

However I realised that I was being selfish, as Sue actually wanted to come with me, and support me, during what were in honesty, some very difficult meetings. She thought that I was trying to shut her out. I thought I was trying to save her time! As usual, she was right. The fact that Sue was with me during my early meetings, was good, as we could discuss what was said, and sometimes I hadn't fully understand what I was told.Sue became the proper part of the decision making process that she should have been.

This changed, however during my regime of chemotherapy. Sue came to the first one, to see how it went, but sitting there for four hours became rather tedious, and we both decided that I would be better off on my own.I came with my constant companion for hospital visits, my Ipod, and spent my time catching up with the latest music.

During chemo, there were many people on their own but also several with friends /family. I did wonder if the people on their own, were like that by their own choice.Following the chemo, came my stem cell transplant, and six weeks in isolation, then a continual period of treatment as an inpatient and outpatient, right up till now.

The support that I have received from my family and friends has been fantastic. It is a very difficult journey for both parties. There were times when I was so exhausted, I just didn't even want to pick up my phone, let alone see people. However I also understood that everyone wanted to offer their support to me.

At times, I struggled with visitors, even Sue and my boys. There were many occasions were I didn't feel that I was going to make it through the process. Daily, my results were getting worse. I couldn't face telling them. I worried that if I told them the truth about how I was feeling, they would stuggle, and we would be in a downward spiral. It was ok for me as I had a fantastic team of clinicians around me, but who was there to look after them?

I spoke to a professional member of the clinical team about this and he explained that I was using a lot of energy that I didn't have, pretending that I was fine. He suggested if I told the truth about what I was feeling, then I would have more energy to fight my disease. In the end, I was able to do this and he was right.

Without the support of my family and friends I don't think I would be alive today, as they gave me a purpose. There were so many things that occured that I couldn't have coped with on my own. even today there are still things that I need help with.

This made me think about people who are not as lucky as me.People who are on their own. How do they cope with the physical and mental torture that is a cancer diagnosis? Even getting to and from the hospital. Cooking and daily tasks, let alone the psycholigical release that can happen when talking about your issues with others.

When you are stuck in hospital for weeks on end, a welcome visitor can be a positive distraction from the daily tedium. what if there is no one to come? There were days when I didn't feel like having visitors, but at least that would have been my choice to make! I imagined, finally getting through your treatment, then going home to an empty house. How difficult that must be. No one to share your highs and lows with.

Even if you don't have a long term illness, it must be very difficult to live life without family or friends. Most of the truly meaningful experiences in our lives only mean something when they are shared!

Did you find the same as me? It would be great to hear your experiences.

Saturday, 26 May 2012

Companionship through adversity.

As I have mentioned previously, on the whole I am a lucky man. Apart from my illness, most other things that I have been involved with, have gone better than I could have hoped. Where I am most lucky, is my group of friends. Those of you who know me are aware that I am not a shy guy, and am always happy to chew the fat with people I have just met.

Some people find striking up a conversation with someone you don't know can be quite awkward.Not me! I'm really interested in what makes people tick, and I view it that if you are both in the same place, you have something in common and a place to start the conversation!

With my job, I travelled around a lot and was always meeting different people who I had never met before. That gave me a lot of life experience, and many funny stories so I never really found it difficult.However, I find there are several important factors involved in good conversation. Firstly, it is important to listen to what the other person has to say. Secondly, you need to make that person feel comfortable in your company. Thirdly, humour seems to break down most barriers quite quickly. When people laugh, this is an indication that they are enjoying themselves, therefore are feeling comfortable with you.

We find friends over the years, through things we have in common. For example, when we are young and our children go to school, you see regularly the same people and your social networking, begins. Our hobbies take us with like minded people, and we may also go to the pub, and start meeting people regularly. Of course our work, is another area where we meet people where we have things in common. Sometimes, work is the only thing that you have in common, so therefore the relationship rarely gets beyond first base!

Since the start of my journey, I have become a regular, at places I had never been to in my life! Hospital clinics, and treatment rooms, charity offices, medical conferences, to name but a few. When I went into my first chemo session, I was scared! I had seen a lot of things in my life, but had never been pumped full of poison. I was in a room where that was happening to everyone, and in truth it was quite quiet. I started to talk to some of the other patients and before long the noise level had been raised and there were smiles and laughter. We were still having the poison, but somehow, we felt better about it!

Due to the fact that I have been having regular treatment, over a long period, I am well known in which ever area I am, and have made many friends. I have felt that the bond that binds us is a stronger one than I had with some of the people I met in my former life.Since my transplant, I have kept in contact with the survivors, and we are in constant touch. If any of us are having treatment, we are around for the other one. In fact I am visiting a lady on Monday who is currently having a tough time.

This week when I was having my routine treatment, there were a couple of regulars, and a couple of new people. Us regulars were pleased to see each other and give an update on our progress, and very soon, the new people started to join in. My regulars told me how much they were enjoying the blog, then the new people wanted to know about it. They also knew people who would find it useful and took my cards, saying that they thought it was a good idea.

In a strange sort of way, this makes coming in for treatment regularly, much more bearable. It becomes like a perverse social club. Unfortunately, where serious illness is involved there are always times that people can't make their treatment, but the other patients will always check with the nursing staff, how that person is progressing.

With the increase of the internet and social media, it is now much easier for people to keep in contact with each other, whilst having treatment or outside of it.Speaking personally, I really value my friends that I have made since my diagnosis. I think that the fact that you know that they truly understand what you are going through is an incredibly powerful bond.

I find that truly ironic, as I would never have eve met these lovely people if I hadn't got sick!

Do you agree with me? Have you got your own story to tell about someone special. We would love to hear it.

Thursday, 24 May 2012

My birthday is a key milestone

Today is my birthday. Happy days I here you cry!! I didn't mention it for more cards and presents, just that it has a greater significance in my life, since my diagnosis. I had just turned 51, and once I was told my prognosis was poor, I really did believe that I wouldn't see another birthday.

I couldn't believe that if things didn't go my way, I would be dead within 6 months. So many things that I would never do again, and as I had just celebrated my birthday, I didn't see how I could be celebrating another one! I distinctly remember talking to my wife about it. Once all the treatment programme was put into place, and it was agreed that I needed a bone marrow transplant, which was due at Christmas, I felt that I might have a chance.

My transplant took place on the 19th December 2007, and that was my first birthday of the next part of my life.In transplant years I have just turned 4. I then made it to my next official birthday, although I was still quite weak at that time, (2008)

Since then, the birthdays have kept coming. I am quite a low key type of guy, and don't normally like a lot of fuss and bother, but last year was my 55th birthday. My wife and I looked at that one as if it were a major birthday, like a 50th / 60th. Sue had been brilliant, as usual with her secret planning. We have some friends that own a hotel in Eastbourne, and she had arranged for a lot of our friends to join us for the weekend.

We all dined together on the Friday night, and went for a guided walk on the Saturday. We stopped for lunch in a cafe, and then arrived back for a celebration dinner. The restaurant was decorated in red and blue, the colours of my football team, Crystal Palace. At the end of the evening I was presented with a leather bound personal edition, history of CPFC. A unique present!!

As we get older, and our lives change, we appreciate things differently. Some things have a lower financial value, but a significantly larger sentimental value.For me, memories are the most important thing.I will aways remember being surrounded by my family and friends and having fun, during that weekend.

Even yesterday, the girls in Macmillan office had prepared a surprise little gathering for our team, to celebrate my birthday. It really was lovely that they had gone to that trouble.They were asking how I would be celebrating, and I couldn't help reflecting on my conversation back in 2007. As each birthday comes, I become more grateful.

I am very aware that my life has entered extra time, and at 56,  I can't really think of anything sensible, that people could buy me that would make my life any richer.I enjoy, just spending time with friends and having fun. I now lead a much more simple life than I used to.But I really do think that I have more satisfaction than I did.

Today is a celebration, in more ways than one. I am celebrating still being alive, to see my boys grow up, and I am celebrating the extra life and memories that I have had, thanks to the skills of my medical team at St Georges. Maybe I have also had my share of luck?

Do you have any milestones that you would like to share. What times are important for you? Feel free to share your thoughts.

Tuesday, 22 May 2012

Fame, cancer, and the media.

Since my own diagnosis in 2007, and my extremely limited knowledge on the subject of cancer, I have an eternal thirst to learn more about this thing that has invaded my body.This disease that can bring down a very healthy person so quickly. This thing that changes lives in an instant. Obviously, the subject is interesting to me, but I guess unless you are somehow involved with someone who is affected by cancer, you might just pay a passing interest to it, as these days we seem to hear the word so frequently now.

However, the society in which we now live, revolves around media and news stories. Every form of media is looking for the latest story, and it seems that bad news sells. So when a world famous person dies, there are stories everywhere about them.

Recently, there have been three deaths involving cancer. Robin Gibb of Bee Gees fame, Donna Summer, and Abdelbaset Al Megrahi.Cancer is again in the spotlight. Robin Gibb, we all know had been ill for some time. Personally, I didn't know that Donna Summer had been unwell, but I think we all knew of the controversy of Mr Megrahi, and his battle with prostate cancer.

People will be talking about these various cancer issues for a period of time, which in its own way is a good thing, raising awareness of the different diseases. It all seems to come that much closer to home, when someone we all know, dies. I remember very clearly when Jade Goody died there were a lot more girls going for tests, than there were before.

Of course, it is very sad when people die, but what it does mean is that a lot more people will sit up and take notice of certain symptoms.

I found a quote from Robin Gibb, which I would like to share with you, as I think it shows that he was as much a human being as you and I. It is an example of what I have mentioned in one of my previous posts. Poor health is a great equaliser. He also shows his appreciation of time.

He admitted: 'Of course I was scared, like most people in my situation would be.'I just didn't want to be told any bad news.'

When wife Dwina and son RJ eventually convinced him to have the scan, doctors found he had bowel cancer which had spread to his liver.

He said: 'I didn't cry, I just went into shock. I lost my appetite. I didn't want to eat, and I certainly couldn't sleep. I'd been in denial for so long.'

He was put on a course of chemotherapy, while Dwina - a druid priestess - also gave him health foods and herb teas in a bid to fight the disease.

He explained: 'The illness and the untimely death of my brothers made me conscious of the fact that - rather than just think about it - it's crucial that you do today what you want to do.

'Now I know how precious time is and you can't put it in the bank.
'I intend to make the most of every single second that I've got left.'

Donna Summer - the diva who inspired a generation to dance -  lost her secret battle with lung cancer.
The Queen of Disco died aged 63.

She is best known for her string of 70s hits including I Feel Love, Hot Stuff and Love to Love You Baby.

Sources say the singer believed she had contracted cancer by inhaling toxic particles in New York after the 9/11 attacks.

She had been determined to beat the disease and had been trying to finish an album.

Donna won five Grammys, sold 130 million records and revolutionised dance music.

Sunday, 20 May 2012

Some of the emotions of a stem cell transplant

I have been prompted to write this post, as I have had very recent contact with at least three people that have had stem cell transpants, and are all going through different emotions currently. This is something that I have experienced twice now myself, and have encountered many people that have also had one.

A few years ago, a stem cell transplant would be known as a bone marrow transplant. The reason being, that the stem cells are grown in the bone marrow. Most of your own cells are killed with chemotherapy, then you are infused with your donors new stem cells. They find their way into the bone marrow and start forming your new immune system.

Like a lot of people, when I first heard ' bone marrow transplant ' I imagined having my bones  drilled, which I can't say I liked the idea of.However when it was explained that it would mostly involve only my veins, I wasn't so worried. Bone marrow biopsies though are a very different thing altogether, ouch!!! ( As the pic below, not me by the way!!)

A stem cell transplant is an option which is considered for various cancer conditions. For example, for types of leukaemia, lymphoma and myeloma. As a rule, it is not often a first-line treatment. Conventional chemotherapy or other treatments tend to be used first. However, the treatment of cancer and leukaemia is a changing and developing area of medicine. Techniques such as stem cell transplant continue to be refined and improved and may be considered in various different circumstances.

The higher doses of chemotherapy and radiotherapy that can be used in conjunction with a stem cell transplant can improve the chance of a cure for some conditions in certain circumstances.

For the patient, there are a lot of things to be considered, such as risk of death during transplant, and side effects. If you are younger, there are things like fertility issues. Once you become older, the risk of dying during the processs increases. If not directly from the process but infection related disease afterwards.

If you are not in reasonable health to start with, you may not even be offered a transplant as the risks may be too high. Even if you are lucky enough to be considered, you will need to find a matched donor. Sometimes people are lucky enough to have sibling donors, but if not, The Anthony Nolan Trust, will be checked for a suitable donor.

Whilst the tests are continuing you are having chemo. and hoping and praying that a match will be found for you. If a match is found, either related or unrelated, that person has more tests to ensure that they are in perfect health. If they pass those tests then you both have days of growth factor injections which increase the growth of stem cells ready for the harvesting. This is done on a machine over two sessions.

As your body clock is ticking, there are so many things that can go wrong. There is even a chance that you can relapse before you get your new cells. Once the process starts, you will be in an isolation unit, for anything between 4-6 weeks. This is because once your bown marrow starts to die, with the dose of chemo it is given, then you are very vulnerable to disease and infection. in a similar way that a new born baby has a very low immune system.

That time is a very lonely time!! Not knowing if you will live or die. Not being able to eat much, and not knowing if you should be on the toilet, or have your head over a sink. Feeling so tired you can hardly move.What will the future hold for you? How many times can you thank your donor, for the gift of life?

All that going on for you. imagine how your family and friends are feeling?  That process for me was a life changing thing. Very difficult to explain unless you have experienced it. Unfortunately, some of my fellow journeymen have passed away since our journey started, but I know that they were grateful for the extra life that they were given.

I would like to end this post by thanking all the people who donate anything, to help others, and a special thanks to my donor, who is out there somewhere, getting on with his young life. Thank you, just doesn't seem enough!!

Friday, 18 May 2012

Buddying people affected by cancer.

I have decided to write this post as it has been something that has been on my mind for a bit of time, and I was at a meeting last night where my thoughts and feelings were confirmed.

Since my diagnosis and significant treatment, I decided that I wanted to help other people that were going through what I was. I knew that my cancer experience alone, was not enough to be able to do that, so I went on The Macmillan Cancer Support Course, which was brilliant, and involved studying a lot of different aspects of cancer and it's affects on people. I also went on other shorter courses to give me the information that I needed.

I then started volunteering at the local cancer centre, to gain some practical experience. Also I helped at St Georges, talking to bone marrow transplant patients. I have been doing a lot of this work, for about four years, which as you know, I thoroughly enjoy. I decided to put this role on an official footing and volunteered to help The Lymphoma Association as a Telephone Buddy.Each organisation works slightly differently where buddying is concerned. The LA try and match as close as possible to the patient. ie, disease, age , sex, treatment etc.

Telephone buddying is a very different skill to face to face work. It is much more difficult when talking to someone on the phone, as you cannot see body language and reaction to your conversation. Also there can be a lot of pauses, that some people might find awkward. If you are having a face to face conversation with people, you can gauge much more easily, how receptive the patient is to you.

Everyone is aware of the need for people to talk to, and there is no better way to help understand what you are going through than by talking to someone who has experienced it. We are all in agreement, from patients,to nurses and doctors. In every hospital, there is regularly, a lot of unofficial buddying that goes on. Patients compare notes with each other, and sometimes doctors or nurses will ask one patient to talk to another, about their experience. All very logical I suggest.

You would think then, that if there was an officially trained group of volunteers (ex patients)  all CRB checked, willing to set up an official 'Buddying Service' for cancer patients and their families, that the hospitals would be thrilled? They were, everyone said how fantastic the service would be, and the volunteers were ready for their first referral, which would come from the hospital.

That referral never came! As yet, the service is still to get off the ground after nearly a year. A lot of time and effort went into training and organising, and all the volunteers had formed a very close knit group, and all wanted to give something back. Everyone is amazed that the service has not been able to start, even the nurses and doctors I talk to about it.However, most of them never even knew that the service existed until I told them.

At our group meeting last night we were joined by some guests from another area who were interested in how our group was running. They were interested that we were talking about a buddying scheme, as it was something that they wanted to do but had encountered resistance and suspicion from some professionals.

Now the big question I ask is why??? The service is no additional cost to the NHS, all run by properly trained and checked volunteers. Surely this sort of service will only raise the profile of the hospitals? Surely a free service that benefits the patients, is a no brainer??

Why is it so difficult to GIVE help to health professionals. What is so wrong with the system, that people who work in the same place don't know what is happening. We are all here for the same reason, and that is to improve the lives of people affected by cancer. Surely, we are the ones with the expertise, as we have experienced things first hand. So much experience, knowledge and enthusiasm is being wasted. Imagine the power if it were harnessed in the right way? 

I would like to finish with a little story. I was talking at a national conference last year, and I followed a professor, who spoke about cancer treatment through the ages. He was very funny and knowledgeable and his session was very interesting.My talk followed his, and was the last one of the day. As he left the stage after a huge round of support, I said to him that he had given me a massive problem in trying to live up to his speech. He said, " Chris, you are the expert in the room, you have the experience I don't have. They have all come to listen to you"! 

He was right of course, but I had never looked at it that way. We are experts, so come on guys, let us in to this exclusive team, as we can add something that you can't!!

What do you think? Please let me know how you feel

Thursday, 17 May 2012

Lucky or unlucky?

I have always considered myself to be a lucky person, even to this very day. However a lot of people that I have met since my illness have considered me to be very unlucky, as I got my disease at an age that was considered young. I have also had numerous and regular complications, meaning that I have been unable to return to work, or lead a normal life.

On a TV programme last night, I saw a man that had fallen from ten floors of scaffolding, and nearly died. He had broken numerous bones, but more seriously had severe brain injuries. He has a wife and two young children, and his life will never be the same again. The reporter asked him if he felt he was lucky or unlucky. I thought he was unlucky, to have fallen in the first place, but he answered lucky.He was still alive to see his children grow up, although his life is changed forever.

We all have different views on luck. I know that, because I spend a lot of time talking to different people about that subject. Some, very strongly believe that you are either lucky or unlucky in certain situations. Others believe that you create your own luck. Some say that the harder you work, the luckier you become, I have a great support for that theory too! But my personal view is that somehow, things happen for a reason. There is no logic attached to that decision, it is just a feeling I have, backed up by years of people watching!

If I was unlucky to get my illness in the first place, it has certainly changed my life forever, but I have been very lucky with the things that have happened to me since then. Firstly, they found me a 100% match for my stem cell transplant. I survived all the treatment and the transplant. But I have found my way into another world, working with people affected by cancer. I went to Macmillan Cancer Support for help, and my life found a new purpose.

This path has led me to working with such wonderful people, both patients and professionals. To be able to use my experience and knowledge to improve peoples lives is incredible. To actually be able to see the difference you make is a feeling that cannot be described.It certainly has been a very long road, but now, into my fifth year, I feel that I have a real value in my work. I now realise that my personal experience is invaluable, for people that are starting out on their own journey.

During my journey, I started my own charity, have been lucky enough to have been invited to some very special events, and met some very famous people.I have won awards, and even been on TV! I am continually asked to share my experiences with different groups of patients/ professionals. All of these things would never have happened, if my life had been as it was. I consider myself lucky to still be alive and experience these things.

I really loved the work that I was doing before I got ill, and I thought that I was fully satisfied. I really thought that I was lucky to be doing something I enjoyed, at the age of 50.It seems I didn't really appreciate the meaning of job satisfaction!

Although I am not in the position to earn money, I consider my self so privileged to be able to use my personal experience to help in some way.So was I lucky when I got ill? No, but I was lucky with what happened because of it. Some people say that it is because I work in the way I do, that some of those things happened. I say, I know a lot of people who work like me, and those things have never happened to them.

One area that I think I am really lucky, is to be alive during the invention of the internet. In some respects that certainly is a life changer in a different way!

Are we really lucky with what happens in our lives? Do we create our lives, or do things just happen for a reason? Is there a part of your life that is down to luck, or is it hard work and good planning?

Have you had some good luck that you would like to share, particularly if you have won the lottery!!!

Tuesday, 15 May 2012

How well do you adjust to change?

I am writing this post, looking out to sea, from a beautiful castle. For the first time in a long time, I have been able to take a short break with my wife, and some friends. With the regime of treatment I have, and my constant tiredness, I don’t really look forward to going away. But my wife needs a break from our home routine. It is good to be waited on and for her to be looked after for a few days.

We are being looked after brilliantly, and we can catch up with papers, books and music, while being fed and watered. This afternoon, I felt very tired and had to go to bed for an hour. This is something I have very rarely had to do. When I came down, I felt better, but rarely have had to have a break during the day. I was upset with myself, as I used to work at least 12 hours a day, and now, even reading a paper makes me tired. I am hoping that this will eventually clear, but I am extremely frustrated and keep reflecting on my life before diagnosis. I really am struggling to adjust to my new life even after 5 years!

This started me thinking about the amount of change that we deal with in our lives. Sometimes the change is by our choice and other times it is things that are out of our control. As we grow up we go from school to work. We then get married and have children. We move house, move from towns to cities, flats to houses, our families grow, and we progress with our careers. A lot of those things can be planned for, and in a lot of cases are not unexpected.

However, how does the unexpected affect us? Redundancy, illness etc. Things that happen that we can’t plan for. Sportsmen that get injured and can’t perform again. Illness that means you will never be able to be as good as you were at your job, if you can even return to work.So many different scenarios! Some people adapt better than others. What is the key to dealing with change?

Personally, I struggle to put my past behind me. I feel that my life before cancer helped make me what I am today, and I feel sometimes that I keep referring back to my old instruction manual, for help with my new life. I often feel that I need to let go of my past life to enable me to truly move on with my new one. I seem to always be comparing what I am able to do now, with what I could do then, which as I said earlier just frustrates me!

I am now a very different person, and my priorities have totally changed. At times I don’t even recognise myself. I always felt that in my working life, I embraced change. In many respects I feel that certain change is a good thing, as it can drive progress.

Having never been into hospital, to it suddenly being my second home is strange. Not knowing how I am going to feel tomorrow, is terrible. Spending most of my waking day working, to not knowing if I will ever be able to work again, is very tough to adjust to. When I was working, I felt very independent, now I feel very dependant. Overall I would sum it up by saying that I feel vulnerable.
These are just some of the dilemmas faced by people who are diagnosed with a long term illness. Not only do they have to adjust, but people in their lives, have to adjust too. This promotes further change, as everyone deals with a new situation. Are there any rules for this, no? We all deal with it, the best way we can. For some, there is professional help, and in some instances there might be a need for medication, but ultimately it is down to the individual to deal with their own issues.

How do you cope with any of the major changes that you have faced in your life. Do you think you should have dealt with something differently. Did the change work out for the best? Do you embrace change. Maybe if something life changing has happened to you, maybe it improved your life, for example, winning the lottery!!

I look forward to hearing your story!

Saturday, 12 May 2012

A life changing event. Inspired by Tina Nash

I wrote on yesterdays post, about maybe taking things for granted, which I am sure we all do at times. Imagine if you could no longer see? You couldn't see your family, friends, sunshine or the beautiful scenery that this country has to offer.You could not see your children growing up. What a terrible thought. This is now how Tina Nash must face the rest of her life.

For those of you who may not know who Tina is, she is the lady that was beaten to a pulp by her partner, who then proceeded to gouge her eyes out.This incident took place last April, and the beast was sentenced yesterday. So Tina had started to rebuild her life the best she could and now she has had to relive that terrible night again, one year on.

One twist of fate and her life has been changed forever. No one knows how they will react to something life changing. In a way you just make it up as you go along, because there are no rules or guidelines. I was absolutely inspired by an interview I saw with this lady, and I wanted to publicise a few of her quotes, as I feel that at times when we are feeling low and sorry for ourselves, we can think of what someone like Tina is going through.

Apparently, losing her sight made her feel like she was buried alive, but she doesn't want to be treated like a victim.

" I just woke up and thought I have got to get on with my life"

" I am trying to do everything, I am having a good go.I don't want people to feel sorry for me because I don't feel sorry for myself "

" I feel stronger and ready to take on new challenges "

" I feel a lot more confident, definitely. I am getting the old me back. I don't think I am brave, just surviving "

" You only get one life so I am not going to let him ruin it "

" My life changed forever that night, and will never be the same, but I am now able to move on, start my treatment and rebuild my life "

Since my own experience started, I have been fortunate to meet so many inspiring people. Almost every day, I meet people who make me feel grateful for what I have. My work has taken me into a new part of my life that I would never have seen, if I hadn't received my diagnosis. That was my, personal life changing moment, and mine was never the same again.
 I was very lucky that I had a very supportive family, and fantastic friends around me, without whom, I wouldn't be able to do what I do today.

Every day, there are people receiving life changing news. it is how we deal with that, that will form the new part of our life. I was dumb struck when I saw the BBC interview with Tina. You couldn't fail to be inspired by her. She is one amazing woman. Some of her quotes were things that I have personally felt on my journey.

I just could not let this terrible case pass without writing my personal thank you to Tina for inspiring us with her words and deeds. I really hope that she is given all the support that she will undoubtedly need in the longer term. I would like to wish her well, as it seems that she is going to turn her attention to charity work.

Friday, 11 May 2012

Do we take our Health Service for granted?

I have spent the last two days having a treatment called Extracorporeal Photochemotherapy, (E.C.P).I have this treatment for two days every two weeks, and have been on this regime for six months now, with at least another three months planned. It may have to continue beyond this period, depending on results.There are very few units in the country that provide this treatment and I have been lucky enough to have been referred to the major one in London.

My journey since diagnosis, is well into it's fifth year, and I don't think that there has been any year where I haven't been in hospital as an in patient, having some serious treatment. This includes a stem cell transplant and a top up of cells two years later, as the original transplant was failing.

When I was originally diagnosed,with a very poor prognosis there was a programme of treatment layed out, and the process started very quickly.I mention all of this because whilst having the ECP, (the process takes around three hours) there is always plenty of time to think. The nurses were looking after myself and my fellow patients, taking care of our every need, and joining in with my continual banter.

This has been my experience, since I entered the system. All of the Health Professionals, nurses, doctors,etc have been nothing other than fantastic.I have been given all the treatment possible to extend my life, without the cost ever being mentioned. I was given all the drugs I required and any additional help I ever needed. If I am honest, I don't think that I could have expected anything more, if I had gone private.

Whatever my needs are, they are met, almost unquestionably, and by such lovely human beings. It made me think today, that I was taking that sort of service for granted! I appreciate that we all contribute to the upkeep of the service, and plenty of people I listen to talk about their rights to good welfare. To a degree they are correct. The Health Service very rarely lets us down when we really need it's help.

Sure, there are many things that need to change, and I have mentioned some of those in a previous post. I'm sure like in any other large organisation, there are people who are not as good at their job as they should be. We can all find examples in the media, where the service is letting us down.

When we are unwell and don't know why, we feel very vulnerable and stressed. It affects our whole life and we want to get fixed up as quickly as possible. Things may not always happen at the speed we want, or necessarily in the order we want, but on the whole, they do happen.

The boundaries of healthcare are also at times, very difficult to define. Who is responsible for what, and how much of your care pathway is the NHS responsible for? I think at times that we think that the service should provide us with everything!! Maybe a cure for all social ills???

I feel that we do take our Health Service for granted in this country, and I am glad that I took time to think about what they have done for me, and how grateful I am. I would like to thank the people that care for us when we are sick. I am aware they get paid, and it is their chosen profession, but just because you get paid to do something doesn't necessarily mean that you care. Most of these people care over and above their call of duty.

Just in this week, a little girl we know has had an operation on her face, and a colleague of mine had a baby girl born very prematurely, just over 3lbs! Thank you for being there for us when we need you.

We have readers all around the world, and I wonder if you have a service like ours here in the UK, or wish you had that sort of service?

UK readers,how do you feel about our service. Has it looked after you like you feel you deserve?  Please let me know any stories that you would like to share.

Thursday, 10 May 2012

Does choice make our life difficult?

When I go looking to buy something, I like to see a good selection. Different colours, different brands, different prices. That is where the problem starts!!! I can find a reason to buy every version, but I have to choose only one. Now I am in turmoil, so many options. Am I going to make the right choice? Will I be happy when I get home? So many questions!!

If when I went to the shop there was only one item in one colour, it would be easier, but I wouldn't go back to that shop, as I feel I deserve to choose, and I want a selection. So I am knowingly putting myself into a state of confusion, but will always select the shops with the widest range of products.

Also, when you go out to eat, you wouldn't think much of the restaurant if they only offered a few dishes.But how difficult can it become, just trying to choose something from an extensive menu? Even when you have finally decided, and the food is being served, do you not look with an envious glance at your partners plate, and wished you had ordered that instead! If I put the wine list into the equation, a nice relaxing dinner out, can turn into mental gymnastics!

I am using the above couple of examples to highlight how difficult we can find making simple decisions. Imagine what we go through when making decisions on our own health or treatment? Even worse, when we are forced to make decisions for our children, parents or partners.

In my own personal example, things were slightly easy for me, as I only had one choice to make. That was to have the treatment or not. Put bluntly, I was told that if I didn't have the suggested chemo and stem cell transplant, I would be dead within six months.There certainly were plenty of risks with the treatment, some of which I am still suffering with today, but the risk never came into my mind, as I had to have it.

There certainly have been many down sides to the treatment I had, but I am still here.I am comfortable in my mind, as there was no decision to make. But what about people who do have choices to make? Sitting down and studying survival rates, looking at percentages, and chances of different side effects. This may happen, this could be the outcome.So many if, buts, and maybes!

What leads us to make the choices we do? Can we make calculated decisions based on facts and figures, or do we make our decisions based on emotions? How much do we listen to our Consultant? There are so many things to take into consideration, when making major treatment decisions. How it will effect our loved ones, our work etc. What will the longer term issues be? We might spend lonely nights, trawling the internet, hoping that we will find the answer there. Generally we will only find further confusion.

With very aggressive cancers, will come very aggressive treatments but also very difficult to manage side effects. There is a very tricky balancing act to perform, as the question of quality of life will then enter the equation. Yes, your life may have been saved, but how do you live your new life? This is something that the medical profession cannot answer. It is very difficult to know in advance some of the psychological issues that people will face, once their treatment is finished, as it affects everyone differently. You can't even make a plan in advance, because no one knows how many of the side effects you will have, and how you will react to them.

When making some of the simple choices I talked about above, we can base our choices on experience. We know what we like, what will make us feel good and what doesn't. That all comes from making wrong choices earlier in our lives! But how do we make choices, based on things that may or may not happen?

In my opinion, and this is a massive generalisation, but I think we are not good at making major decisions. It is certainly easier when there is no choice! My question to you is, are you better with more choice or very little? How good a decision maker are you, and what do you base those decisions on? Do you have any experiences you could share?

Tuesday, 8 May 2012

Time to change our ways of working?

As I have mentioned several times in this blog, I come from a business background. I spent the best part of 30 years, building businesses from scratch or improving the efficiency of existing ones. Wherever I go, socially or business, I am always looking at how well the businesses work.I look at the staff, the service provided, the value for money, the environment, and the overall general efficiency.

My wife thinks I am being nosy, but I am generally interested in all types of business. In most instances I know nothing about, the products of the business, ie manufacturing, catering, making cars, or fixing people, to name but a few. However in my experience, there are common elements to running any business. Product, cost price, selling price,  staff costs equipment costs, and providing a great customer experience in an efficient manner. Generally a USP helps. (Unique Selling Point). Something that you have and others don't.That will help get the price up!

In todays economically tough times, all businesses have to be competitive, to even survive. Our country demanded from retailers a few years ago, longer opening hours, including Sunday trading. This therefore meant that other service industries had to follow, and now even banks open at weekends and extended hours in the week. Who thought we would ever see that?
Even shops that didn't agree with this policy, have been forced to follow, or die from their outdated ways.

In addition to the above, the internet is being used by most companies, to great effect. Better and speedier communication, online payment, and selling online, enabling companies to reach internationally, by the click of a button. The embrace of different working methods has enabled us to compete at the top table. We can do things quicker and more efficiently.Businesses have listened to what their customers want, and are making changes to be able to provide it.
That is why the likes of Twitter and Facebook etc, are so powerful in the market, as companies can establish immediately, their customers reaction to the things they are doing.

This brings me to the care which we receive. I have just read yet another article telling me that figures say that if I get admitted to hospital, out of 9-5 hours or at the weekend, the chances are that I will have a poorer outcome! Those of us, who are regular hospital visitors, know the drill, also if we are an inpatient at the w/end, we know what to expect. Like most things in the NHS, it has been like that for a long time, and I think that it has been unofficially accepted as, this is the way it is!

No one is more grateful for the wonderful care that I receive than me. I consider the doctors and nurses as my extended family. I think that the care and patience they have during some very trying circumstances is remarkable. But isn't it time that the NHS, started to move in line with the rest of society? Why should it be a lottery if you get sick at night or at the w/end? Struggling to find a doctor in the middle of the night, almost feeling guilty, for troubling people out of hours!

Surely, all that expensive equipment in the hospitals, could be more productive if used 'off peak' as well. I do know that scanners etc are being used on Saturdays. I appreciate that if your working patterns have to change, that will be inconvenient, and it will need a massive culture change. I also appreciate that when you are dealing with sick people, that you need a certain amount of staff cover, to enable safe practice. I can see a lot of obstacles. But with clever management and resourceful HR, nothing that cannot be dealt with.

I can see that if you were a trust employee, you wouldn't want your working pattern to change, but I think you would agree, that you would like the best available care, when you needed it,for you and your family. I remember very clearly when people were told that they would have to work on Sundays. They didn't really like it. But those people were also consumers, who enjoy w/end shopping etc when they are not working.Now, 7 day a week services are what we have come to expect

Why, should we want anything less for our health service? At the end of the day, the monster that is the NHS, is a business, and we are it's customers. Even massive banks are finally listening to their customers.It, like the Police and Government, are there to serve the people.We are very grateful for what we have, it has served us and our families well over the years, but a lot of the current practices have not moved with the times. We do need change, but some that benefits the patients.

Please let me know your thoughts on this issue. Do you agree/disagree?