The mantra for my life.

DON'T GIVE UP

When things go wrong as they often will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must but don't you quit.
Life is queer with it's twists and turns, As everyone of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out,
Don't give up though the pace seems slow,
You may succeed with another blow,
Success is failure turned inside out,
The silver tint of the cloud of doubt,
And you can never tell how close you are.
It may be near when it seems so far
So stick to the fight, when you're hardest hit,
It's when things seem worst that you must not quit!


I wanted to share the above with you. I came across this verse, after I had been diagnosed back in 2007. Sue and I were out walking and we came across a church in the middle of nowhere. At the back of the church were some verses which you could purchase for a donation.
I saw the above, and it was like it was put there just for me!!

It actually summed up my attitude to life, but seeing it written, was a powerful thing for me. It reminded me how strong I had to be. I took a copy with me into my isolation unit, while I was having my stem cell transplant. There were times when I never thought I would make it. Still there are times when I wonder what is coming round the corner each time I visit the hospital.

I have faced so many set backs in recent years, but learned to rely on my mental strength, that had helped me stay at the top of my industry, whilst I was working.I do wonder at times, how much determination I have left. Each time I think I have reached the top of a hill, I see another one in front of me. Sometimes even the most basic of tasks seems like a massive challenge, but I have a fabulous team with me. My family, friends and health professionals give me the encouragement I need.

Maybe you might find the above verse useful too. I do hope so. As I have mentioned previously, please feel free to leave any comments on the blog, as they will provide encouragement to others. Also please let me know if there is any particular subject that you would like me to write about, as it is your blog as much as mine.

How we affect other peoples lives

First of all please accept my apologies for a delay in fresh posts, but regular readers will know why. The last few days have been like a blur!! So many things have happened to me that it really is like a story book.When I first started writing this blog, I did wonder if I was going to run out of subject matter. I also wondered who would be interested in my life anyway?

However, after talking to several trusted friends and professionals, and having been given a long sentence of debilitating treatment, I felt that it would be a great way of communicating with people.Since writing about my experiences I now realise that I don't have an ordinary life!! What I have is very special. I am living a gift. The life I have, is because of a kind young man who took the trouble to donate his stem cells to me. Not once but twice!!

If someone has done that for me, then I must use that wisely. That is really what put me onto the path that I am on now.Since using my illness in a positive way, I am getting used to expecting the unexpected. Being on national television is one example of that. The programme has created a massive interest in my work, and I am being contacted by so many people who's life I have been/am part of.Until I was told, what effect my actions had on people I hadn't truly recognised the extent of my reach.

During the show, I was greeted by three ladies who had considered me to have positively changed aspects of their lives. When I was being told what I had done I was overcome. I just considered what I had done for them as standard.Since then so many other people have reminded me of what I did for them.

This made me think. Do we really consider our words and actions enough? Do we realise what effect we may have on somebodys life? I'm not sure we do. I normally try to take time with people to try and understand what makes them tick. I just love people. I learn every day, from meeting different people and encountering different situations.

I have three simple rules in my life, which have always served me well.

Firstly,'Treat people the way that you want to be treated' I give everyone respect until they show me they don't deserve it!

Secondly, 'Everyone feels better about themselves when they are comfortable and laughing', so that is what I try and achieve.

Finally, 'Do everything, the best that you can.

We live in a very competitive and fast moving world, and seem to do everything at 100mph. What are we trying to achieve?? We all need help at times, and I know from personal experience it is very difficult to ask sometimes.We communicate with each other by various mediums, and a lot of them are instant.

One example of thinking before we/do or say something is yesterday from The UK Government. They were so quick to talk about petrol and a possible dispute, they created the very thing they were trying to avoid, panic!!! It was all over the media before you could blink.I think that nowdays we are more concerned with the speed of communication than we are the quality. If we all took just a fraction longer to reflect on what we were about to communicate to someone, certain situations might be different.

On the same theme I would like to mention emails. How quick are we at sending and dealing with them. But do we really read and understand them. Do we think how a sent mail will be read and understood? It is a bit easier if you are sending to someone you know, but a lot of mails go to people we don't know. Are some things better spoken than written? I think in a lot of instances they are, but computers are convenient and faceless, and we can hide behind them and we feel protected.

I'm sure we can all make a positive effect to each others lives if maybe we thought a little more about how the other person might feel, about something you are going to communicate.Maybe take a little more time in certain instances?? What do you think????

A very different life now!

As you regular readers may know, I am always feeling a little thoughtful on a Monday morning.Today, more so than others. We have just had a lovely family weekend, and we were joined by our youngest son, his girlfriend and their daughter.They recently told us that Jo was pregnant so we were celebrating that, and also David informed us that his company had given him a new role, a good payrise, and regular trips to New York. We were very proud.

These were all things that I never thought that I would be alive to see.Still not sure if I'm suited to the grandfather thing, (certainly in my mind!) But it is so good to be around to see my children start to set down roots of their own. At their age, 26/28 there is little I can teach them, but just being around if they need me is great.

I am writing this post, with a daunting 3 day schedule in front of me. For no fault of my own, all the arrangements have fallen on top of each other. My treatment dates moved from Fri/Sat to Mon/Tues. The TV programme is being shown tomorrow, at the same time as I am in hospital!

I organised a fundraising evening, months ago and we chose tonight, as it was convenient for the entertainers and the restaurant, and the guests.We have open house tomorrow to watch the show. Our friends and neighbours will be joining Sue, but I won't be able to be there!
Then when I get back, we will be going to football which is a rearranged game. Finally on Wednesday I am volunteering at Macmillan, which I love!

  

This made me think about all the things that I am busy with now, compared to life BC. In my old life, I would be looking at what the week of work would be holding for me, and any problems that might possibly bring me. I would be catching up with my colleagues about their w/end, then start the job of chasing customers, to achieve my weekly sales target.

Today, that sort of thing seems a long way off! Most importantly, my weeks are dictated by hospital appointments. Everything else has to be slotted round them. With my current treatment, vital, as if my body can't correct itself from this issue, my life will be extremely difficult going forward. Normally I try to keep days in between what I do, so that I can rest. However if I do that now, I wouldn't be able to do the things I enjoy, so my life would be worse.

As most of you know, I raise funds for the Ruth Myles Unit @St Georges hospital in Tooting. I have been doing this for more than four years.We have numerous events during the year and tonight we are doing a Jersey Boys Evening. This was an event that both the restaurant and entertainers were keen to put on for the charity. My friends, as always will be out in numbers.I don't know if I will have the strength to eat my dinner let alone get out of my chair, but I need to be there.

Tomorrow the TV show will be on, and this has created a lot of interest. Unfortunately I will be at hospital when it is shown, but I will look forward to seeing it later in the day. That show only came about because of the voluntary work that I do. As did the work I do at Macmillan.

My life has been turned on it's head, and all the areas that I touch now, I would not even have experienced had I not got sick. When I was having my Stem Cell Transplant back in 2007, I just couldn't see what on earth I was going to do with my life, if I couldn't work. In my head I had lost my total identity, with my job. All the things that I do now, have come about by a combination of hard work and good luck. I do feel that I have a new identity now, and sometimes I struggle to recognise my self.

I can tell you that it is going to seem very strange to watch my recent story on television, and see some of the lovely people that I have been able to help. I'm not sure if even I can believe what has happened to me in the last few years. It was a very emotional time, on camera, when it was explained some of the things I had done. I think if we didn't have the pictures to prove it, I still wouldn't believe that it has happened.

I will definitely have some rest once this spell is over!!

Why I do what I do!

'How many people have been blessed through the suffering that you and your family has gone through, that has brought you to where you are now- doing great things to help bring hope to people that might not see much hope?  So many, I’m sure.  I know it’s easy for someone like me to talk lightly about suffering, but I really do think that, although God doesn’t cause suffering, he’ll often turn it into a great power for good and I see that, in what’s happening in your life.

I know you don’t believe all the things that I believe about Jesus, but he is God and we are all made in his image and the only way the good stuff he wants, gets done, is if we do it.  You are doing it  - lots of people talk about it, but you’re doing it - and I know He will bless you for it.

Like it or not, you have a ministry and may God bless you and the people you work with.  I’m so pleased to be your friend and to see you looking so well. 

I keep sending up those prayers that you stay in remission, so that this thing goes away completely – just think how  even more  would get done if you were 100%!'

I have been unsure whether to start with the above, or end with it, but thought that if you read it first you would understand why I am writing this. I have been writing this blog for just over one month now. I have never written anything much since my botched O'levels, back when cavemen walked the earth. But as you know, I wanted to find a way to communicate with a wider audience of people affected by cancer. So with a seed of an idea, and the help of some experts, this blog was created.

Without any corporate sponsorship or advertising we are now followed in places like America and Russia, and have gone past our 1200th view. This is working by word of mouth only, which is incredible.

I have received so many calls, emails, tweets and Face Book messages, from people telling me how much they love reading the posts. I always say please write your comments on the blog, but people seem shy when it comes to a blog? The fact that so many people are enjoying it is the main thing.

However I couldn't let the above message go without copying it into todays post. That came to me in an email and I was reading it on the train. If anyone was watching me, my expression must have been a picture. I was extremely moved by this. The sender, as always, is happy for me to make this public.

It made me think, that my blog is stimulating thoughts in people, and maybe making them think about subjects that they otherwise wouldn't have. It prompted me to think about Faith. So many people believe different things, and in a lot of cases it is their faith that gets them through. No one knows who is right or who is wrong but it is a very individual thing.

My personal feeling is, that if it does it for you then it is good! On my journey, I have seen a lot of people turn to their faith and find great strength from it. I certainly have spent a lot of time thinking about faith, whilst in isolation treatment, and there is certainly plenty of religious/spiritual support around the hospital. At St Georges, we have a very multicultural range of patients and lots of different beliefs. I have friends of different faiths from all over the world, very kindly saying prayers for me, which is wonderful. Maybe it is that power which is keeping me going?

I would like to thank the sender for the above, and it is very heartening to know that you are all enjoying this work. Please feel free to add your own comments.

Frustration

This morning I have the feeling of frustration and I don't know why! To establish that it was frustration I was feeling I checked the dictionary definition and it said - 'the feeling that accompanies an experience of being thwarted in attaining your goals'. That is definitely the emotion I have today.

I have always found it strange, why, for no apparent reason you wake up with a different emotion than the one you went to bed with. My weekend was quite relaxed. We all went to football (although that was frustrating!!) then we went to dinner with friends, which was great. We also had a relaxing day yesterday, so why on a bright sunny day do I feel this way?

Firstly, I think that most of my friends have gone off to work, looking forward to the pressures that their week will bring? As you know from a previous post, I really miss my work. Also my wife has gone to do her JP work, and my son is working days, so I am here on my own. But I enjoy my own company, so it can't be that.

I can see that the key to this is in the definition above. I am being thwarted in achieving my goals. When I was first diagnosed, I had a very successful career and I was working towards retiring early. That can't happen now. Due to my health issues, I am unable to be as reliable as I would like, and this stops me taking on certain projects. Also with my new treatment, I seem to be constantly tired, which is slowly eroding my enthusiasm for things, and means that I am not able to do the volume of things that I could before.

Independence was one of my main characteristics and it is difficult to be that anymore, as I even need help with putting on some of my clothes. I need the support of everyone around me.  To enable me to make even some of the most simple plans, I need the help of someone else. This sort of life was totally alien to me, and to keep asking for help is a killer for me. I know from my experience of working with people affected by cancer that this is one of the biggest problems they face, and I can certainly understand it.

I am the type of person that needs to stay busy and keep my mind occupied, but I am finding it increasingly more difficult to physically find the energy, as the treatment is so tiring. By the time I have reached a reasonable level of energy, it is time for the next one. Also, my limbs feel constantly tired and even when I am asleep my body is trying to repair itself. To add to that, I have to travel into London to have the treatment so it is a double whammy!

There are so many more things I can contribute to and achieve, but I do have a concern that I will never be able to reach my full potential. Waiting for things to happen, is just not me. I am the man that makes things happen But I am struggling to find the mental energy at the moment. These are some of the factors that are giving me my frustration, but I am also aware that this can be a negative emotion for me, so I am trying to fight it, but that uses energy and here we go again!!

Maybe you would like to let me know what causes your frustration and how you deal with it?

I have received many positive comments, re this blog, through Facebook, email etc. Please feel free to leave some on the blog, as others enjoy reading them too. You can comment at the bottom of an individual post or people have started leaving general comments in the News column, which is fine. TU, Chris

Can't we just talk?

I have spent a majority of time this week around hospitals and have had plenty of time to think. One of the things that has occurred numerous times this week is the subject of basic human communication. I would like to start, with my quote of the week. When asked by someone if there was an answer to a question that was asked last month, the reply came, " We haven't heard back from our Communications Department yet"

I felt a deep sense of irony and had a wry smile to myself! One of the biggest issues for a lot of people in hospital is waiting times for their appointments. I have seen numerous ways of this being dealt with. Pin boards stuck on the wall with paper messages, hi tech screens giving constant updates, even to patients having bleepers if their appointments are running late.

I completely understand in most instances why appointments run late, this is a hospital after all! But can't patients be told by word of mouth? I went for an appointment in one clinic which was scheduled for 10,00am. I thought this was a good time, as it would not have been running long, therefore less chance to be late. I finally got seen at 11. 00 with absolutely no explanation at all. At no stage was any person who attended for their appointment told that the clinic was running late.

People have lives to get on with, as well as attending hospital. We totally understand the wonderful service we get, when we do get seen, but there are other factors. People have jobs, children and special arrangements to make. They could also be parked in the money pit known as The Car Park! (Maybe that is the plan!!) This all adds to the pressure of a hospital visit.

Why do we need to rely on technology these days to tell us what is happening? Is electronic communication helping us lose our interpersonal skills. Why do we now need special Communication courses to help us talk to each other? We have more methods of communication these days than we have ever had, but people feel very protected and safe when firing messages from a computer.

Life is very much a two way street. On occasions we are the ones writing emails etc. Maybe applying for jobs? But we are also on the other side of that street with our work. Happy to delete someones carefully worded email, without any thought of the person behind it. None of us like the feeling that we have been ignored, so why do we have this system?

How satisfying is it, when you want to contact a large organisation and you actually get to talk to a real person!!! Wow, I am actually TALKING to someone. Not lost in the ether!! As most of you who know me well, can testify, I spend my life talking! This is so that I can learn more about the people I am dealing with, and I never fail to learn things.

I do find it very ironic that with the amount of information, and methods of communication available to us, that so many things break down through lack of communication.We all get upset by it, but we are all guilty of it. Most offices I see, people judge their effectiveness by the amount of emails they deal with. We are all people, dealing with people. Why won't the system let us deal with people the way that we would like to be dealt with?

Technology and email certainly has it's place, and are certainly powerful weapons, but I spend my time in a caring environment, and I never forget that. How much care can be given by a booklet or an email?? We need to interact more, not less. How can we understand what people want unless we ask them??

Please feel free to add your opinions/comments to this post, as this is just my own.

A time for reflection

Wow, what a last three days I have had. On Monday/Tuesday I had more dialysis, and after finishing treatment on Tuesday afternoon, I was driven to the funeral of one of my very dear friends. Then I went to do a talk about Buddying.

On Wednesday I had an appointment with a specialist who after various scans and tests confirmed that I have Graft Versus Host Disease on my tendons. This means that the major muscles in my limbs are like taught elastic bands, and everything aches whenever I move. I can't even straighten my fingers or hands.
The treatment I am having for this is improving things but it will be a slow gradual process, so we will see what happens.

After that appointment, I had my weekly fix at Macmillan. As you can imagine in that 3 day spell, there were many highs and lows but I certainly felt valued when I left the office on Wednesday afternoon. I received some wonderful emails from people who I had a chance to talk to previously, who have felt encouraged by what they heard and wanted to tell me how positive they were now feeling about things. Wow!!! This is the very reason that I do what I do. In many respects I never ever got that satisfaction when I was doing paid work. If only Waitrose take my currency of goodwill, but even they still want cash!!!

I would like to mention my friend, who sadly died a couple of weeks ago. His death had no connection with Cancer, but whilst at his cremation I had a time to reflect on my life with him and his associates, many of whom were also present, but I hadn't seen them since I had to stop working.

He was a larger than life character and I met him when I first entered the rag trade approximately 30 years ago. Both our lives ran very similarly and we earned a lot of money, then one day he asked me if I would like to work with him as he was starting his own company. Those of you who know me well, would understand that was an opportunity I couldn't pass by. I then had probably the most exciting few years of my life!

Fast cars, worldwide travel, all night parties, money coming in quicker than we could spend it. Something told me that this would have to end, so I took certain decisions and he took different ones.He would light up the room with his presence, and in many ways I felt in his slipstream. As my life continued on a fairly standard path, he experienced massive highs, and then some terrible lows!!

His life started to crumble, and eventually he lost his wife and children, his house, and a lot of his friends, and ended up in prison. When he came out, he heard about my diagnosis and came to see me. He told me he was there for me, and that everything was going to be ok. At that stage I didn't have very long to live, and it gave me great comfort to see my friend.

Now, he has gone before me. The stresses and srains of his life eventually taking their toll.Tuesday afternoon was certainly a time for reflection. A lot of our peers in that industry were very rich and ruthless, and would do almost anything for money.I was lucky, as I knew all the key players, but it was interesting to hear the converstations now. Everyone mentioning the good times with my pal, and how money has come and gone but it is not important now.

It really showed me that we only have the real knowledge as we get older, and it is like we have only been given half of lifes instruction manual, when we really need the complete version. Sometimes it feels like when we are younger we have the tools to do things, but not the entire knowledge. As we get older we gain the knowledge, but the tools get worn out!

Would I have changed things with a little more knowledge. Yes. One thing, but that is not for public consumption!! What would you change if anything??

Life planning??

Yes, it's nearly the end of the weekend again. Those of you who work will be starting to think about what lies ahead, and maybe trying to prepare in some way. A presentation to work on, or a report to write. Maybe some preparation for a meeting that you have, or your boss wants to talk to you in the morning!!

Who knows what the week will bring? Who we will talk to or meet. It could change our lives, for better or worse. I heard a very good clip of an interview with Nigel Adkins the manager of Southampton FC. When asked about the prospects for his team in the future, he mentioned that he was only concerned with today. His point was that he could only effect the future by concentrating on the task in front of him.

That made me think, about how most of us have a life plan, and we are always looking at things in the future. Retirement, holidays, new jobs, new houses, meeting with friends, weddings etc. A lot of those things are a long time in the planning stage, some more than others! (retirement for example) I just wondered if we missed out on a lot of the 'here and now' because we are so concerned with making plans for the future?

During some of my darker moments, I was asked what I missed most from my life BC. I said, the ability to take control of my own life. I felt that with my illness, my control had been taken from me. But during that session, I saw that all the things I thought I was in charge of, were out of my control anyway!

My life, my job, my family, my friends, my pension and any money I may have had, could all go at any time, from reasons beyond my control. We have seen counties crash, banks collapse, jobs disappear, and pension schemes evaporate. Financial pressure creates tension in relationships and people break up. So there was I, worrying about my big life plan, when I couldn't affect a lot of it anyway.

I seemed to have spent an awful lot of time looking towards a glorious retirement. My ideal would be lying on a beach with out a care in the world. Would that really have been possible anyway? I really don't know. Certainly it is not an option for me anymore, but I don't know anyone who could do that. Some people have the money, but plenty of worries, others have no worries or money!!!

I mentioned earlier, about the week ahead. I am already thinking about Wednesday morning when I have an appointment with a rheumatologist. Hopefully after all the tests that I have had, he will be able to confirm the exact cause of my muscular problems. But before that, I have two days more of dialysis. I am also attending the funeral of a very long standing friend, and giving a talk to a local Lymphoma Support Group.

I am hoping that I will have enough energy to help me through all of the next few days. It is unfortunate how so many things are on top of each other but I need to do all of them. Why was I thinking about Wednesday, when my real concern should be today? I guess old habbits die hard.

For the above reasons, I won't be able to post for a few days, but I hope I have left you wanting more, and I promise not to disappoint!!!  Have a good week.

Is your life all about timing?

Yesterday I was in London for a very important meeting. I was in good time, and selected a random spot to stand, awaiting my tube. It was busy and I got on the train. I grabbed the first handrail, and standing next to me was a very good friend of mine, who was going to a business meeting. He didn't know I was coming to town and I didn't know he was either.If we had planned to meet like that it would almost have been impossible!

That prompted my thought for the day. I started to think about a lot of the major turning points in my life, and I can say that in nearly every case things have happened for me at the right time. Is that about luck? Do you make your own luck? Is it about hard work? Is it about timing???

I left school early, as I needed to find a job, and my local paper had an ad showing that Waitrose were opening in my area. I got a job there. I met my wife there and had a good career there.When I was ready for a fresh challenge again my local paper had an advert saying that Unilever required a Salesman in South East London. I got the job and my sales career was starting to form.

Ater 3 years I had become the Uks top salesman and was looking for a fresh challenge. We went to dinner with friends, and were discussing our work when my pal asked me if I wanted to join his company. Talk about timing!! I took up the challenge and got into the ladies clothing business. That led me on to a very successful time of self employment. I travelled the world and earned a lot of money, and loved what I was doing.

Just as I reached my peak in my work, I was diagnosed with incurable cancer. Now that was diabolical timing!!! I was flying and someone had jammed on the brakes. Not only that, it looked like I wasn't going to live much longer. I needed a matched stem cell donor, they found one. Perfect timing.

When I realised how debilitating my illness was, and that I would never be able to continue my career, I wondered what on earth I was going to do. The next day, a Macmillan magazine dropped through my door so that prompted me to give them a call. I went to Vauxhall h/o for an interview and the lady asked me what I would like to do. I said I don't know, as I don't really do office work. I told her that I liked the look of her job, which was dealing with people like me, and she laughed!!!

Ironically after a bit of basic office work she asked me  if I would like to help her in the Volunteering department, and, as she left, I ended up with that role! Which I am still loving!!!

Since starting my volunteering, so many positive things have happened, as you can see from the pics etc. I have met and continue to meet such wonderful people, both patients and professionals. Was it the timing of the magazine through the door that started all the good stuff??

When I entered my most recent regime of treatment I was starting to feel very down. I began to wonder if it would ever end. At least another 6 months of tiring treatment. I am entering my fifth year without a break. how much more?? I started to question my own mental strength. My capacity to help people was being eroded. Then I had the idea of the blog, something I could do from home and reach people far and wide.

I mentioned my idea to a friend, and his daughter rang me. She is in social media and would love to help me. Timing, luck??  Then came Channel 4 with their programme. Since then I have hardly had time to think!! Were these things sent to me at this time because I was flagging??

Please judge for yourself but in most instances timing has been great for me. Do we make things happen, is it luck or a combination. I don't know the answer but in it's own way it is exciting!!!!

Today is a missing work day!

I explained on yesterdays post, how much I enjoyed my work with the group. I am already looking forward to tomorrow when I will be seeing my colleagues at Macmillan.Then the following day I am attending a Macmillan Council meeting, which will be an opportunity to talk to the Board about some of the work we are involved with.

Although I am feeling very tired, I am having one of those days, where I long to go to work! I am sure that a lot of you reading this might think I must also need mental help as well. I am busy  today with a lot of paperwork and phone calls to do. In between, people pop in and want to chat, so it is not that I need more to do. In fact my days are very full, and I don't even watch any day time tv.

Since having to spend so long at home, I am noticing patterns of behaviour. The same cars coming and going at the same time every day. The same people walking to the station. The same dog walkers. Even the same people putting out their recycling at the same time each week!! How sad have I become???

In my life BC, (before cancer) the only thing that was constant was that I knew that I was going to work!! I left at different times and got back at different times. What happened in between could be anything, good or bad. I could be run off my feet or sitting in the office.I could be driving up the motorway or flying to another country. Yes it was a crazy life that is for sure, but somehow I revelled in the unpredictability of it all. Constantly thinking on your feet and dealing with situations as they occurred. Everyday was a massive mental and physical challenge.

These days, are now physical challenges certainly, with my muscles feeling like I have competed in the last 100 years worth of olympics in the last week. Even getting in and out of a chair is painful, and getting dressed is not for the faint hearted! (Maybe that should be the next you tube video???Not!!!)

But what future for my brain? This is my problem. My brain somehow is not linked to my body. It is making promises, that my body can't fulfill. It cannot understand that my body is no longer able to do a lot of the things it could. It keeps filling me with lots of exciting plans and ideas.Some involving money, others just helping people. Every where I go, I get inspired to do things but I just physically can't.

My only release from this frustration is when I take a strong dose of sleeping pills which manages to switch my brain off and enable me to sleep.I wake up mentally refreshed but because of my current issues I feel like I have run a marathon before I even get out of bed! So it seems that at the moment, my brain works and my body doesn't. but when I'm in bed, my body feels ok and my brain swithches off.I feel like my body has taken early retirement but no one has told my brain.

If you are working, just be careful what you wish for as the grass is not always greener!!

The good work never stops

On the first Monday of every month, I help facilitate a support group for prostate cancer patients at my local cancer centre. This is a role that I have been doing,(subject to my own health) for approximately three years.

It is a day that I look forward to, and I thank the centre and members for welcoming me and making me feel a real part of the group. The members are all different personalities and experiences and at different stages of treatment, but have that very strong common bond of a cancer experience, which they are only too happy to share with each other.

The benefit of a support group is that everyone can tap into other peoples experiences,to help them with their own decisions. As I have said many times before, there is nothing as good as talking to someone who has experienced what you are about to. Some people come regularly every month, and others come, as and when they require information.

It occured to me today, that monthly, we have at least 2/3 new members, and today was no different. All newly diagnosed patients dealing with the issues that a cancer diagnosis brings.It is so heartening to see the support that new members gain from the more experienced ones. I can usually see, how after a few meetings, some of the initial fear and isolation is removed and peoples confidence begins to improve.

This then made me think about the people who do not feel able to attend a group meeting. Some people may not be physically able to come,or have transport problems, others may not feel confident enough to come along and share their problems. After all, it takes a special type of person to talk in front of others about issues they may have in the nether regions!

So, you have just been diagnosed with cancer, and then you are invited to share your issues with a group of people you have never met!

 For all of the fantastic work that is done, up and down the country with support groups etc, there is still a massive number of people who are living with the burden of a cancer diagnosis and feel unable to share it. From my experience, this number is growing too.

It never fails to suprise me, that despite all the publicity and technology around these days, people still struggle to find the correct lines of support for themselves. It seems to me that the best way is proving to be patients telling other patients, ie recommending the services.

I have found from my own personal circumstances, that once fear is removed from your situation you can use your energies in a much more positive way. I faced my own demons frequently, in the early stages of my treatment, through chemo and transplant and various complications along the way. Now the emotion of fear doesn't exist for me I can try and focus my limited energy on spreading the word.

Coping with Loss

I am writing today,having read the very sad story of PC David Rathband who was shot and blinded in July 2010 and has now committed suicide. In one unforeseen moment, his life changed forever. Of course he lost his sight, but he also lost a lot other things too.

When I went to the hospital for what I considered to be a routine visit, and was told that I was dying,my life changed forever. I lost my job, my wife became my carer, I was constantly in and out of hospital for long periods,sick for a lot of the time. I lost my independence in most ways. I couldn't physically drive, I earned no money and could barely move. I was a passenger instead of the driver.

Some of those things have improved over the five years that I have been treated, but I am very far from being the person that I was!! Now after all the years of treatment, I have lost a lot of my hair, my smell, my taste, and I struggle even to dress myself at times. I still wake most days and wonder if my life before cancer really happened! Although I have the pics to prove it did. Even now, I cannot accept that I will not be the person I was. Apparently that is why I need tablets to make me sleep

It is extremely difficult for a person who has been so independent, to suddenly have to rely on other people. Everyone says it is ok, of course. Family friends etc are all very supportive, but what they can't understand is that feeling of uselessness that is inside you. I live with that every day.

Only someone who has experienced those emotions can understand those feelings. I couldn't understand why I could not achieve any satisfaction in my life, no matter what I was doing. It was explained to me by a clinical psychiatrist dealing in oncology that I am still grieving for my former life! That is why I cannot be satisfied, currently.

As we all know, people deal with grief in different ways. I had always associated grief with losing someone but it was explained that it is just as appropriate for losing SOMETHING, that we loved/ cared about.

Losing someone or something you love is very painful. After a significant loss, you may experience all kinds of difficult and surprising emotions, such as shock, anger, and guilt. Sometimes it may feel like the sadness will never let up.

While these feelings can be frightening and overwhelming, they are normal reactions to loss. Accepting them as part of the grieving process and allowing yourself to feel what you feel is necessary for healing.

There is no right or wrong way to grieve, but there are healthy ways to cope with the pain. You can get through it! Grief that is expressed and experienced has a potential for healing that eventually can strengthen and enrich life.

I wanted to explain by using my own case as an example that there are so many other things that are triggered by a cancer diagnosis, that people sometimes forget about. In many cases people don't even like to mention them.

Apologies if this is a slightly heavy Friday post, but this story struck a cord with me and how lucky I am to have the support network that I do. Thank you Team Lewis!!!

Time is my puzzle. Any answers??

Being busy is what most people would answer if you ask them what they are up to. I secretly think that people would be embarrassed to say that they weren't busy! They would feel out of step with others. Maybe they would think that they weren't popular? Why have others got so much to do and I haven't?? People don't like to appear different, do they?

Busy is always a great excuse that people use when they don't really want to do something and find it difficult to say so. Would you like to go to the gym? Would love to, but too busy! People are never too busy to do the things that they really want to do because they make the time! Basically, we find time for things that we enjoy, and don't for the things we don't fancy.

Having said the above, I am actually really busy. Not looking for a medal here! My issues are slightly different to the norm, in the fact that a lot of my time is taken up at hospital for one reason or another.

As you may be aware I am involved in numerous projects, involving people affected by cancer, which is work that is incredibly satisfying. I find myself mentally refreshed when I am doing this work, which you would think is a good thing.

However, my treatment is extremely energy sapping and I am advised to rest, as my red cells are low and I am starting to get anaemic. My problem is that I can't rest. My body will sit in a chair but my mind is still working away like crazy. I ache, and am permanently tired, which are side effects of the GVHD and it's treatment.I struggle even to dress my self as my joints are very stiff. But sitting in a chair just drives me mad!!! I even have to take a double dose of sleeping pills to make me sleep, or else I would be permanently awake.

So here's the thing. If I take the doctors advice, which is what I always tell people to do. I wouldn't be doing the things I do. If I don't do those things that I enjoy, what is the point of my added life??  I have had so many things taken from my life since my diagnosis, that I must really enjoy the things I have now. At least I can still admire a beautiful woman even if I can't smell her!!!

Yesterday, I was told that I had changed a young persons life, (positively I think!!!) My goodness, did I have a glow when I was coming home!!! This is why I do my stuff. If I am honest I think it is what keeps me going, as by rights I shouldn't be here by now.

Everyone tells me that I have to slow down, and I would be crazy not to listen to that advice, but if I take away the things I enjoy, what is left for me??

Does anyone have any wise words of experience ??