Fundraising and tea at Buckingham Palace!

The cancer community, has a massive membership across the world! There are so many people affected by it, in one way or another. As you are aware, this blog is about sharing experiences, so that we can all learn from each other. I have been sharing my own experiences, but this is also a platform to hear from other people, who also have incredible stories to tell.

Today felt the appropriate time to share the below story with you. It is written by a lady called Ann Clarke, who is a member of  'The North Sheffield Support Group for Bluebell Wood' A children's hospice, who do some incredible work with families. http://www.bluebellwood.org/ 

"Have you ever noticed that a seemingly small decision in your life, can later have big consequences?Twelve years ago I heard that a group of people were trying to raise money to build a Children’s Hospice in our area, and were desperate for speakers to spread the word.  As I was used to speaking in public I volunteered. 

 With the publicity that I, in my small way, and many others were able to get we raised the £4 million needed to build the Hospice, which opened its doors nearly 4 yrs ago.  None of this money came from any government authority but from the people of South Yorkshire and the North Midlands, whom the Hospice serves.  It is called the Bluebell Wood Children’s Hospice.

This country is the leader in children’s hospices, the first having been built at Oxford in 1985.  They differ from adult hospices in that they support the whole family, in fact the whole family can stay in the hospice whilst the poorly child is there either on respite or for end-of-life care. The decision is made by the family in consultation with the staff.  They have sibling clubs so that the brothers and sisters can meet together and share their experiences or go on outings together. 

The parents are encouraged to also meet together, supporting one another as only someone who has gone, or is going through, the same experience can. At the moment Bluebell Wood is caring for  approximately 150 families. The Hospice has the most wonderful loving and caring staff and, despite the fact that very sad things do happen there, it has a positive happy atmosphere.

My work over the years with the Hospice just grew, so that now I fund raise with a group we have formed locally, putting on concerts etc. selling merchandise at events, collecting cheques and representing the Hospice when and where required – and still give talks.  But with all this came rewards, I have met so many amazing and inspiring people, gone to events that I would never have gone to otherwise – and then, a few weeks ago an envelope came through the door from the Lord Chamberlain’s Office, it was an invitation to a Buckingham Palace Garden Party, I had been nominated by Bluebell Wood.  To say I was surprised would be the understatement of the year, four of us were to go from the Hospice. 

I have been a royalist all my life, so you can imagine how thrilled I was, and I was not disappointed.  Everything at this giant tea party goes like clockwork, the well-oiled wheels of the Royal Household just click into place, from the delicious tea to the Yeoman Warders, the two military bands to the Queen and the other members of the Royal Family passing amongst us chatting with great ease to all around.  Only one down side, you are not allowed to take cameras into the grounds, obviously for security reasons.  So it was a day that I will have to retain in my memory all my life!

But my work goes on for the Hospice, we still need to raise nearly £3 million a year to run it and only 5% of that comes from any statutory authority.  There are still so many desperate families out there who in their darkest hour need that shoulder to lean on and Bluebell Wood is there for them.

Since this was written, I have just heard that the small group that I work with in North Sheffield for Bluebell Wood have been awarded the 'Queen's Award for Voluntary Service.' "

(Well deserved  Ann, and congratulations, Chris)

Ann Clarke         

I would like to thank Ann and her colleagues, for sharing their incredibly inspiring story. Having spoken a lot to Ann over the years, about her fundraising, to see what has been achieved, is incredible! In compiling this post, I have had cause to look at the work of Bluebell Wood, it looks to be an incredible place.

This is yet another example of the work going on in the background by tireless, selfless people, to improve the lives of people affected by cancer. Thank you all for the wonderful work that you do!

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?

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.

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.

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.

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.

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.

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!!

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

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!!!