" I wanted a person, not a pamphlet! "

In a normal week, I meet a lot of different people. I enjoy what I do, as I get to talk to very senior people, who affect what happens in a cancer environment, to fellow patients, when we can moan and groan about things that don't happen in the way we feel they should! I find this mix incredibly stimulating, and it feels like I am privileged to have views of both sides of the fence, which can help me make informed decisions on things.

I feel that I can add value, as when talking to decision makers I can speak as a patient, and when talking to my fellow patients, we can discuss what improvements to the system, we require, and I can talk about some of the things that are in the pipeline.As you will see from my blog and those of you that know me, will know, that improving the lives of people affected by cancer is my crusade, and no matter how many improvements are made, we still have a long way to go!

One of the biggest problems that we all face, is that a cancer diagnosis affects everyone differently. All of our emotions are brought into play at the same time, but different ones take over, in all of us. For example, some of us are overtaken by fear. For others, anger is the driver. Relationships, can get stronger or weaker, so many things can happen.Even we as patients just don't know how we are going to feel from one day to the next.

Given that this is the situation, how do you try and help a person affected by cancer. The answer is that there isn't one answer! We all need very different things, at different times. Things have changed dramatically, since I was initially diagnosed, back in 2007. Firstly, people are talking much more openly about cancer and it's effects. There is now a lot more information available to help patients make more informed decisions. We have the internet, with it's pros and cons. We have counsellors, support groups, and complementary therapies, to help us deal with the side effects of our treatment.

All of the above mentioned, are fabulous additions to our weaponry, for our battle with cancer, but after all these years I keep finding the same gap, and the same requests. People want to be able to talk to people!!! In most instances, not necessarily a qualified counsellor. They just want someone to listen to their issues and just provide a sympathetic ear.

Sure, it is very difficult, to talk to someone who has a serious illness. I sometimes find it difficult, even though I have been doing it for a long time now! In most cases, saying nothing is worse than saying the wrong thing. I know from personal experience, that people really appreciate being spoken to in as normal a manner as is possible. After all, we haven't just dropped from Mars, we just happen to be sick.

The title of this blog post was quoted to me, by someone who has had more than one encounter with cancer and struggled to find the form of support that they required. It was a great quote and came from the heart, but it really summed up for me, what is happening out there. Or rather, what isn't!

Of course we need statistics and feedback to be able to measure our supposed success or failure in tasks that we are undertaking to try and improve things. But in a lot of instances, patients are still treated as numbers, percentages etc. Most of these results come from complicated surveys and questionnaires, which in a lot of cases are loaded towards a certain answer. How many complete them, and how representative are they really? I appreciate that we are all a number in the great survey of life, but we are not JUST a number!

What about actually talking to people. My experience tells me that we need more people talking to patients. This doesn't have to be paid staff, it can be professionally trained volunteers/ ex patients. Maybe doing teas/coffees or simple roles, just chatting to patients, making them feel at ease in busy areas. Not just 'meet and greet' but a few steps on from that.

In the cancer sector, there are more people wanting to volunteer, than there are roles for those people. One of the greatest emotions that people who recover from cancer feel, is an over riding urge to give something back! The people are there, and very willing but the system just continually keeps providing hurdles.

Stress is something that seriously ill people do not need, and in a lot of instances some of this can be removed, but not just by handing someone an information book about their disease! This is one area of care that we definitely need to improve. We have the demand and the supply, what we need is the necessary will, of the appropriate authorities. Lets think outside the box for a change? What do you think?

Appearances can be deceiving

If only I had a penny for every time someone tells me how well I look. I would certainly be very wealthy! Before I got sick, I don't really remember people telling me how well I looked. Maybe I didn't, by the way!! I now say it frequently, to the people I meet regularly in a hospital environment. I think what I mean is that, you look well, considering the fact that you are ill. I'm not sure if that's is what people mean with me, or if they really think I look well.

To be fair, I have lost about a stone in weight, and don't have quite so many chins as I did have. I have now managed to accumulate about 3 sets of clothes with various waist and chest sizes. My weight can vary with my medication as a lot of you out in blog land will know. It is quite strange to view different pictures that I have had taken in recent years, to see what effects the treatment has had on my appearance.The vast doses of chemo, have managed to suppress what was a great head of hair, and my features look well worn towards craggy!

I am no longer frightened to look in a mirror. I have got used to the changes in my appearance. It is no good worrying about what was, I have to live with what is.I had my monthly review at hospital yesterday, and all the doctors and nurses were saying how well I looked. However, in the last few months, it has become very difficult to drag myself out of bed, due to my low haemoglobin blood levels, and even getting through a normal day requires an awful lot of effort.

I have learned that with cancer patients particularly, things can look ok one minute, then there can be a sudden increase/decrease in weight, due to illness or drugs. What you see externally is not necessarily a true reflection of how that person is feeling.

The reason I have chosen this subject for today's post, is that on one of my many, late night channel hopping sessions, I found the remake of Spartacus, which was apparently filmed in 2009. I enjoy those epics, and I was wondering who the guy was who played the lead role. He was a great physical specimen as you would expect. Something I might have aspired to in my younger days!

Ironically, the  next day, his wife was in the paper telling his very sad story. Unfortunately, he had the most common form of Non Hodgkins Lymphoma, (B, Cell). The title of the piece was ' How could my big, strong TV star husband, just wither away ?' The man who played Spartacus was called Andy Whitfield, who died, aged 39. He left a wife and two young children.

Andy had received treatment and had got into remission, however a year later, the disease had returned. He still remained confident, and invited a documentary team to share his journey, and he called it, ' Be here now'. He wanted to make the film so that people would be inspired to do everything that they want to do. He felt very strongly that you only get one life and that you should make it count!

Before I wrote this post, I watched the video, which I have attached the link to. It is an extremely emotional piece of footage.I don't think that you can fail to be moved by Andy's story. As you regular readers will know, I don't normally put any links on here, but I felt compelled to put this one on.

My thoughts are with Andy's wife, Vashti, and her two children, Jesse and Indigo.

 http://www.kickstarter.com/projects/426354716/be-here-now-the-andy-whitfield-story

Working with cancer?

The last few days have been really busy for me, as they included 2 days of treatment. My body seems to be struggling now, and the dialysis is taking longer, as my veins seem to resist the machine! However, the extra time that I spend at hospital, combined with the time I spend volunteering, have meant that I have met more people and had many more conversations.

One subject that was commonly mentioned was work. As regular readers, will be aware I am unable to work, due to my continuing illness, but I meet other people who are at very different places, in their lives. I would like to say that I have never yet met a cancer patient who doesn't want to work. In fact quite the reverse! Everyone would be more than happy to work, if they were able.But the stress of work, can create such problems for most patients, unless they work for very understanding employers.

Firstly there is the financial issue. If you are having to undergo a long programme of treatment, there will inevitably be questions about how long you will get paid, and will you have a job to go back to when you finish your regime.It maybe the case then, that even when treatment is finished, you are not physically able to return to your job. Can you do a part time or job share? In a lot of cases these might not be options at all, but even so, there would still be a sacrifice to be made in terms of salary.

What happens if you are self employed? (Like me) As soon as I stopped working, I stopped earning. I could no longer afford to pay into my pension scheme either. So saving for any retirement is a problem. Whatever little benefit you might be entitled to, goes on one quick trip to the supermarket. So how do people cope financially?

If the issue is relatively short term, I guess you can make a few temporary arrangements until you are able to go back to work. But any long term health issues, become very difficult where work is concerned. One person I met, is having long term treatment like me. They are managing to work for two days a week, but earning barely enough to get by on.Due to the treatment, they are not strong enough to work any longer. They are not entitled to any benefits either.

Yes, of course, there are benefits available, but any that we maybe entitled to, might allow us to live, and certainly not much more. A lot of these have time restrictions, so are not really a solution for any long term illness.
The big problem here is that, with the anxiety of work and money, we are going to become stressed, which as we all know affects us all in different ways, and certainly does not help, whilst having very serious treatment.

Even when people have finished, their treatment, and gone onto 6 monthly checks, there is still the fallout, both psychologically, and emotionally, from what has happened. How can you even begin to quantify that? Generally I found that people need some time to reflect on what has happened to them, but due to work pressures, they are back in the work place as quick as they possibly can. I can understand this, as we are currently living in very difficult economic times, and no one wants to upset their employer!

What happens if you lose your job, and are unwell for a long time? How about applying for another job? We all know about equal opportunities etc, but having a large gap on your CV, that cancer has filled, will certainly not get you to the top of the selection pile, when trying to get even an interview! Are employers going to look sympathetically at this poor person who has a long term illness that could come back again? I don't think so.

Things have certainly improved for long term illness patients over the years. Laws have been passed, and benefits amended. Also now, major charities are working with employers, to enable patients to have a decent transition back to the work place. Helping employers understand the needs of their employees, which is great. But what concerns me is that in a lot of cases, the fallout from cancer, can remain for years after you have the all clear from the hospital. These are problems that are hard to measure, but can create issues for people once they are back in the work place, and can possibly cause problems for others who are trying to get back into work.

People need to work, not just financially, but because we all need routine and purpose in our lives. This is a very important part of things getting back to normal. We all like to think that we are achieving something, and we enjoy being part of a team. Mad as this might seem, but sometimes work can be therapeutic! It can take our minds off some of the other issues, that we have going on. It is a big part of what shapes us as a person. If that is taken away, for what ever reason, stress starts taking over, and we know what happens then!

Are you having problems adjusting to work? Have you got an understanding employer? Are you struggling to find work?  It would be great to hear your experience of work.

Joanna's story. ( Non Hodgkins Lymphoma )

To add a variety  to this blog, and ensure that we can talk about as different things as possible I have invited people to share their own experiences, as I am very much aware that a cancer diagnosis, affects everyone differently. Even if we have the same disease and similar treatment, we could well have entirely different outcomes.

In this instance, Joanna has had a different strain, from the same family as mine, and happily, is continuing her life.
I have had so many complications, and five years on I still have them, so this is a good example of what I am talking about.
These are Joanna's thoughts about her experience with cancer.

"Why was cancer one of the best things that happened to me in life"?

One of the natural things about being a human being is that we like to plan. We plan what we’ll eat for dinner tomorrow, we plan when to get married and have children, we plan our activities around  a football match or decide to become an accountant in 5 years.

The natural aspect about having cancer is that we stop planning. We don’t know what we’ll eat tomorrow, as chemotherapy might make us so sick, that we don’t feel like eating at all. We don’t plan to get married or to have children, as we either might die or become infertile. We don’t decide to be an accountant  as numbers don’t have any meaning to us anymore. Ok, I agree, a football match can still be on the cards;)

Before I got sick, I planned to buy 2 bottles of whisky( which I did) for upcoming Christmas to enjoy it with my family, that was coming from Poland to visit me on that special time of a year. The plans didn’t work out! One of the bottles was drunk by me and my boyfriend on the day I was diagnosed(it actually worked,we laughed, that the doctors will find more alcohol than cancer cells in my bloodJ), Christmas was all about fighting for life in the hospital and the second bottle had to wait until the day I got healthy. And I didn’t know if it will come...

Months of chemotherapy, nausea, headache, anxiety and fear  made a significant change to both my mind and my body. Whenever we think, that life is difficult, we also need to remember that it can always be worse.  We worry about many things and take too much for granted. I used to moan about all necessities of life, but what about the fact, that I AM ALIVE? When I felt nauseous while only looking at or smelling food I realised how great it is just to be able to eat and enjoy a meal. When I felt so bad, I couldn’t even stand up for longer than few minutes I realised how great it was to be able to do the daily routine tasks on my own. We live day by day, wake up in the morning, work through the day, come back home tired, eat, go to sleep and the next day brings the same. Such shame we don’t know how much better it is than lying in a hospital bed thinking of unknown future.

Life is so much more beautiful than we all think. Maybe I had cancer, because my nutrition wasn’t good enough, maybe because I was exposed to some kind of radiation, maybe passive smoking or my family’s genes has caused it. I’ll probably never find out, but I guess it doesn’t matter anymore. My illness taught me to be courageous  and brave. It taught me to smile more and enjoy life(and thai curriesJ). It taught me, that all people in the world are somehow linked to each other and we need to work together to make this life better. What goes around comes around.  And if cancer comes around, you fightJ

P.S. The second bottle of whisky is finished J

  

If you are a person affected by cancer, I don't know if you recognise any of the above emotions, that occurred for Joanna. I certainly do. Not the whisky though!!! 

Like me, Joanna felt that urge to give something back, and now uses her spare time to help improve the lives of others, affected by cancer.

Thank you for sharing your story with us Joanna. I appreciate how difficult it can be, recalling some of those terrible memories.

The great thing about this blog is that we share experiences and are learning constantly from each other.
If you would like to share your experience, I can happily incorporate you into the blog, just leave me a comment below.

The loneliness of a life with cancer

When I started this blog, I mentioned the feeling of loneliness that can play a big part in the lives of people affected by cancer. Today I want to go into a bit more detail about that, with some examples. Like a lot of things in life, it is hard to imagine, these effects unless you have experienced them yourselves.

As the regular readers of my blog will know, I have a wonderful family and a large, fantastic group of friends. I am involved in numerous projects weekly, plus I am still having regular treatment. So there are very few times that I am truly on my own. Yet there are many occasions when I can feel lonely. That doesn't make sense I can hear you saying.I know it sounds crazy, but I am going to try and explain, now, how that works.

Ultimately, all the things that are happening to me, both physically and mentally, are things that only I can deal with.Sure, we can talk about them, but I am the one who has to decide. So many decisions to make, and even though there is so much information around, which sometimes can confuse matters, the decision stops with me. Have I made the right choice?? How will this impact on my life, and my family?

Making treatment choices, sitting with drips and machines for hours on end. Taking drugs, day after day and wondering what sort of effect they are having on your body. Those are only thoughts that you can imagine, unless you have experienced those things. Hours and hours of hospital visits, numerous discussions with doctors and health professionals, about your prognosis. Weighing up the pros and cons of your treatment. Will  it make you more sick than the disease? What will your quality of life be afterwards?

When it comes to the the physical treatment, it is only the patient that can deal with the chemotherapy, radiotherapy or surgery, and also the fallout from that. Everyone can be with you on your journey, but you are ultimately on your own, with most of the major stuff.

" Of course, this doesn't come with any guarantees, Mr Lewis" .That's a common thing I hear. I know that only too well, but I still have to make a decision about what to do next. It is like a game of chess, that I play in my brain. Just when I think I have got myself into a winning position, the opposition seem to pull out an unexpected move. Have I done the right thing, so many questions going round and round?

Coming away from the disease angle for a bit, and even social arrangements can be quite tricky at times. People want to support you, and maybe go out to dinner etc. But you are feeling tired, you are on a regime of drugs etc and therefore you have to make special arrangements, and there are times when you feel that you are the odd one out. You are being a pain, by wanting to leave early.

Even things like holidays are very difficult. Even if you are well enough to take one, there are all the issues, around holiday insurance, before you even start. Then, do you have the energy to do the things that everyone else would like to do?
Can you go to a warm place, sit in the sun, have a few drinks or go to night clubs? If you are lucky, maybe one or two from that list.

Work can be another problem area. If you are lucky enough to be able to continue your work, after illness, do things feel the same. Do your colleagues react to you in the same way they did? Are you able to still manage the same job you did? Just some of the issues you may have found if returning to work.

What about if you have been sick longer term, and have lost your original job? How will prospective employers view your illness? Where will your application form and CV sit in the queue for a new job? We all know what the law says, but what are the facts? I know very, very few people who have had long term illness and managed to find their way back into meaningful employment.

It starts to feel that you are the only one that has all these issues. In most cases, everyone is very supportive, and understands things to a degree, but It can feel like you are the odd one out. All your friends are working and having fun, living what might be classed a normal life, and there you are thinking about every small step of every day.

One common side effect of all this, can be sleep issues,  A lot of my fellow patients struggle in this side of their life, and it can work two ways. Either, you are so exhausted in the day, that you are constantly tired and fall asleep quickly. Or like me, your mind can be so active during the day, that it struggles to shut down at night. Unfortunately, to ensure that I am able to sleep, I have to have sleeping tablets. Before this, I was awake continuously, night after night. My mind found it impossible to close down of it's own free will. This was an issue, not only mentally but physically too, as your body repairs itself while you sleep. Therefore if you are not sleeping correctly, you physical improvement will be a lot slower.

Hopefully I have been able to get across, some of the ways that people affected by cancer can suffer from loneliness, even though they appear to be surrounded by people.

If you are unfortunate enough to suffer with a long term illness you will be aware of many of the things that I have mentioned above. In fact you might have experienced other things, which I haven't mentioned, and that you would like to pass on to other readers. Please feel free to add your own experience in the comments column, as we can all learn from each other.

Social media,a great tool or the devil in disguise?

I would like to start this post by stating that I am aware that there is a very high percentage of people who do not have access to a computer, so I do appreciate that in it's own way this form of communication is slightly exclusive. But hopefully, as things evolve, more and more people will gain access to the hardware and training that they require, to join in with the technological revolution, that is sweeping our planet.

I received a news article from one of my colleagues in America, and it showed that from a survey that was done across 1000 patients, more than 30% were using social media as a platform for health care discussions. This is now prompting them to rethink their media strategy. Coming away from the commonly held perception, that the audience is just a set of numbers to target  with marketing ads.

They are beginning to see that if done properly, they can engage with patients, interact with them, and even provide certain services, which may, in the longer term be able to provide a more convenient and cheaper alternative to some of the systems being currently used. 75% of the people suggested, appointments and specialist referrals might be a good place to start.

Obviously we are not talking about ' facebooking' your consultant! But starting to look at new ways of using the convenience and immediacy of social networking. The greatest risk of social media, is ignoring social media!

One of the dangers of social media, is that there is a vast amount of information out there, on all of us, and it is being shared by companies as we speak. All sorts of information is being gathered, to build profiles on all of us, to see where we fit in the consumer chain. Therefore would we feel comfortable that our health details are being shared across the globe?

The positive side to social media, is that we can communicate when and where we like. We can find most information at the touch of a button.As this information is readily available, it means that information about us is too! That is how the system works.Most people like the fact that they have access to information but don't like the idea that their details are being shared.Very difficult to have one without the other.

Certainly, security and protocols need to be tightened, but I imagine that this will naturally happen as this medium grows in popularity.I feel that we need to get a bit more comfortable with the availability of information. It seems like with most new processes, the younger generation are already in the swing of it, but some of us are not using credit cards on the internet, not using internet banking, for fear of hackers! Some of my friends don't even use wifi for fear of having a cyber attack. I have pointed out that if people can hack into the CIA and MI5 then we have no chance!

I have just read an article from a famous journalist, reporting on a breakdown of a marriage, which was conducted over Twitter! I agree, what a lot of rubbish. I can't begin to ask why they did that, but that was their choice. There is the twist with social media, CHOICE!

If you don't like any particular medium, be it Twitter, Facebook, You Tube, or blog etc, you are not forced to use it. All these mediums can, if used appropriately, make your life easier, and entertain you. People choose to use them in different ways, not always how I would, but I'm sure they might feel that about me. You have a choice with TV. If you think that a programme is not entertaining you, then switch it off.

We all use these things differently, or some, not at all, but that is our choice. For me personally, social media has entirely changed my way of working, and enables me to reach a far wider audience.In a way, people who follow my work, either through Facebook, Twitter or my blog, have opened their channels of communication to me and invited me into their lives. As in life, I would never abuse that hospitality, either in person or online. I still follow the same etiquette, as if I was talking to someone face to face.

It does seem that sometimes people create some sort of false persona for themselves, and become incredibly brave with words, from behind the safety of their computer. But in truth I imagine these to be the minority. There are 10 million Twitter users in UK and 140 million across the world. From numbers like that you will always find people doing things they shouldn't. However we do need to start putting in safeguards for the future, as even the law seems out of touch, at the rate that social media is growing in popularity.

I personally embrace new technology, and am loving what it can help me with. Do you feel the same?

Compromise within our relationships

I will be away for the next few days. We are going to a beautiful 5 star hotel, right on the edge of Lake Bala in Wales. It has all the facilities that you care to name, including fabulous service and food. It is in a quiet position, with beautiful views and is really an idyllic retreat. We have been before, and when offered the opportunity to return, we gratefully accepted.

This will be great, in particular for my wife, Sue. Since my diagnosis, Sue and my family and friends have helped me with everything that I have needed, and I have been needy unfortunately, and still am!! I have changed greatly, as a person, through the process, ultimately to become a better person I think, but still a different one.

This has been accepted by my gang without question. They have accepted that I will no longer be able to work, and fully understand that my work in the cancer field, is my new crusade. They support me when I attend meetings, and am on the phone continually. Now they have accepted that I will spend hours, most weeks, writing content for the blog.They understand that this is what motivates and stimulates me.

Due to my continuing treatment, and hospital visits, I have felt very drained for a long time now. Therefore I am not mad keen on going out and socialising. However we have a lot of friends and get invited to a lot of things. As I explained previously, my friends have been very supportive, and want to see me, so I have a dilemma! Also Sue really enjoys getting out, so we reach a compromise, about what we do.

Since I have lost my taste and smell, even the simple pleasure of eating out, has become less of a joy.Sue thinks I've turned into a grumpy old man, and I am sure she is right!! As everything seems tough going these days, even enjoying myself seems a chore!

My point is, that a good relationship, is based on an element of give and take. I don't just mean our personal relationships. I'm talking about with friends, in the work place, even with strangers. Almost everywhere we go, we meet people, and we are all different. we all see things with a different perspective. We have to learn to understand other peoples views, even if we don't agree with them.

When a relationship starts, you have two individuals. As it develops, they start to form a union, but the individuals are also changing during this time, so for the  relationship to be sustainable, each must accept the changes of the other. After a period of time, some look back and don't see the same person, and the relationship crumbles.

If serious illness enters into the equation, you can see how things can go wrong. An example of this can be that instead of being lovers, the relationship changes to carer-patient. Neither party would choose this, but it has happened! Sometimes this is temporary but sometimes more permanent. With any long term illness the problems can get more difficult as the time goes on. Particularly as the patient becomes more reliant on those around them.

Those of you that work, just think for a minute about how much compromise you do with your work colleagues! Some you like, some you don't, some play office politics, others are straight forward. If we all did and thought what we wanted, we would have all out war quickly, and no company would be working.

Everyone has wants, and needs, that is ALL of us! We can all help to fulfil other peoples needs, if we put ours behind us for a bit. Sometimes we will come first, and other times second. One thing that is a fact, is that we all need each other, to help us get through life.

Maybe if we gave a little more time thinking about others, they might give more time to thinking about us? Relationships can be hard work, lets be honest, even if both people are healthy, but I guess it is the same as most things in life. If we don't put anything in, there will be nothing to take out.

Do you agree with my observations? Have you any relationship examples you would like to share?

Tough times but how satisfying!!!

I have just had an incredibly tough, but unbelievably satisfying couple of days, and I would like to share some of the highs and lows with you.

For the last 5 years I have been in a hospital environment, very frequently, and am always looking, listening and learning from those around me.I have been constantly frustrated, by how frequently, different people talk to me about similar problems. These are all related to a cancer diagnosis. I kept thinking that there are so many people here asking the same things. How is it that this is still happening?

We have information booklets, cancer centres, health professionals, support groups, social media and of course the scourge of most doctors, the internet. But still people have many searching questions. I came up with three basic answers. Firstly, people want to communicate with people that have had similar issues to their own. Secondly, they want to communicate in language that they understand. Thirdly, they want to communicate at a time that suits them.

I concluded that very few of the above mentioned resources do all these things together. My business background has been uncomplicated but successful. ' Less is more ' , ' Keep it simple' . But the first rule of any business is to establish exactly what the customer wants! I know this sounds crazy, but so many people don't do their research. You can only do this by talking to the end service user. It is not about what you think they want!

I am a service user, and I speak to my fellow patients on a regular basis, so I do know what is required. I decided that with what little spare time I have, I would like to try and use my experience, and plug that gap. I started with that idea, and with help and encouragement from some lovely people, ventured into the big wide world of BLOGGING.

Wow, what a world that is!! Millions of blogs from around the world, on any subject you care to name. Videos, pictures, adverts and loads of bright colours. With my first post launched, it felt like I had thrown a bottle into the ocean, looking to see where the tide would take it. Would anyone even see it??

How often should I post, what should I talk about and in what order? All problems that only really came to mind, once I had launched. With no official advertising, but great support of people where I visit hospital / volunteer, things quickly moved on, and people were beginning to find my bottle! Even internationally, which I hadn't even thought about.

It quickly became obvious that people wanted fresh content quite frequently, so instead of posting weekly, which was my plan, I post four times a week now. Readership has grown steadily, and this week, Macmillan Cancer Support, invited me to be a guest blogger. Very quickly more people started reading, and I had some really positive comments from people on Twitter and the Macmillan Facebook wall.

That was great but I have also spent the last couple of days having treatment, and some of my fellow patients were explaining how valuable they thought that the blog was. I met one person who I hadn't spoken to before. They was explaining how ill their partner was and how many of the family were affected by cancer, and how difficult things were. I mentioned what I do and gave them my card, and they said that that they had heard about what I do, and would pass my details on, as some of the people just felt that they couldn't talk to anyone.

From an idea, very quickly it is growing, with your help, (thank you!!) It is starting to do, what I hoped it would do. I emphasise, starting!! It is great to be able to reach so many people, truly a modern miracle! But then again so am I!! I am battling with my treatment, which is a particularly tough regime, and my red cells are struggling to recover from the battle with my GVHD, and treatment combined. This was confirmed today, with more tests. There is a physical reason why I am getting more tired, and I may need a blood transfusion or more, to help me deal with this.

The last few days have really been both mentally and physically exhausting, but have also reminded me exactly why I chose to do this. You guys are certainly the petrol for my engine!Together, we can improve things. I guess I have just reached an uphill part of the journey!

The highs and lows of life

Well what an exciting few days it has been for all of us here! So many people celebrating over several days. There were so many different ways in which people could celebrate,which meant that even more people could get involved, including the likes of me, who spent some of the time watching the events unfold, in front of my television.

The Jubilee celebrations have been the main focus of everyone, including the media. Everyone has their bit to say! It has been all consuming as if there was nothing else happening. We have quickly forgotten our political issues and our economic problems. They have barely had a mention in the last few days.

But like any other celebration of good times, reality, must kick back in! As after all it is reality!! All this four day holiday, and sitting around celebrating, is lovely at the time, but life carries on.
Last night I had dinner with a great friend of mine, and we were walking along the river towards Tower Bridge. It was like nothing had happened a few days before. You would never have imagined what events had unfolded there recently. Everything was back to normal and people were chatting about daily stuff.

Yesterday, I was doing my usual Wednesday volunteering at Macmillan h/o and although there were probably only half the staff around, it was business as usual as I would have expected. More meetings to attend, more lovely people to see. The wheels were turning once again!

I thought that this is a great example of life in general, for all of us. We have our regular everyday lives, including work etc, which provides us with the stability we need. Then come the highs. Birthdays, weddings, births etc even holidays can be included in this. These are things that take us out of routine and give us cause to celebrate.

But fairly soon, those events have passed and things get back to normal. I guess that if we didn't have the element of routine in our lives, we may not appreciate the highs as much as we do.

This weekend also made me wonder if the sheer level of celebration, was slightly accentuated by the fact that news for most people has been gloomy for some period of time, and it was a fantastic reason to let off more steam than normal. To put your troubles behind you, and forget about them for a bit.

Most people complain about their lives being fairly routine, and some might even say boring, but I feel that most people need some sort of route, mapped out for them to help them get through life, and need the discipline that work brings. Sure we all need a break from that from time to time, but it is only a break.

This made me think about my personal health journey. My life before diagnosis, was relatively routine but filled with excitement of the unexpected, and in many ways life has continued a bit like that. The lows of the diagnosis, prognosis, and treatment. The highs of getting a bit better and starting to do some normal things again, but then continual highs and lows to the present day.

I am having my now, regular treatment, which will tie me up in tubes for a couple of half days. In fact after completing this post I am off to hospital. I now look on this as a high. Firstly, thankfully things are improving for me, if slowly, but secondly I meet some wonderful people who are also honorary members of my community. We now talk very openly about our diseases and I think that we learn more from each other than we learn from the clinicians. The nurses always say that they learn a lot from our chats.

In a funny kind of way, I look forward to catching up with these guys, and I guess for me, treatment and hospital visits has replaced the routine of work, and these people are like colleagues, but with out office politics!!!!

Have things got back to normal in your life? We all have highs and lows in our lives, maybe you would like to share some of yours?

My Jubilee post,' The Power of Unity '

Apologies in advance if you were hoping to avoid the Jubilee, here on my blog. It might not seem the most natural place to mention it, but you will be able to follow my thought process with out too much effort!

This country and the rest of the world too, are going through some of the toughest times that I can recall seeing in my lifetime. In a fairly typical week, we hear about fighting round the world, natural disasters and economic meltdown. People are worried about their futures, and fighting for what they believe in.The media and social media is awash with negative stuff, and sometimes, I wonder if I should even bother getting out of bed, as everything seems so depressing!

However, this Jubilee Weekend and particularly yesterday, showed the world, what we can do, even when everything seems to be going against us, including the weather!! The nation has come together as one, for a common cause. There are four days of celebrations, including many things that I doubt I will see similar in my lifetime.

The incredible flotilla yesterday, was a fantastic piece of organisation, and nothing has been seen of its like for more than 300 years. Despite the absolutely atrocious weather, everyone was laughing and smiling and celebrating what Britain does so well. We have street parties going on throughout the holiday, and they will go on, with or without rain, because that's what we do!

Everywhere you go, there is Union Jack bunting, and flags hanging proudly. People are happy, celebrating together a wonderful achievement by the Queen. Whether you are a royalist or not, the Royal Family, can always succeed in uniting the country in joy and pageantry, for a birth, wedding, anniversary or the like.

In our normal everyday life, people are very quick to voice their opinions, for or against what is happening. We have seen this recently with the government, and its taxation policy. Most of the time the country is divided on our thoughts of solving a problem. Growth v Austerity, Euro/No Euro, More media/less. So many points of view, so many ways of airing your views, we seem to be constantly at odds with each other.

I guess the fact that we live in a democratic country, gives us all the opportunity to say our piece, and it is very rare that we all come together as one. This weekend is one of those times.I have watched like most of you, some of the media coverage of the events, and I was also lucky to attend a celebration bbq, with friends. What struck me was how people had left their everyday troubles behind, even if only temporarily, and wanted to have a good time. Despite the awful weather conditions, we were all determined to enjoy ourselves!

This made me think, about the power that unity brings. Working together for a common cause. Can you imagine, if we were all pulling in the same direction, what we could achieve? Think about office politics, and how difficult your job can be, because people want to be divisive, usually for their own gain.In large organisations, although there is one common policy, people will interpret it differently, and at times, to suit themselves.

 Even in times of illness, the divides start to appear quickly. Everyone has their own ideas about what is right, from diagnosis to treatment. Ultimately, the patient must decide, what is right for them. What is the secret to get everyone working together for the common good?

People seem to come together for a good cause, for example fundraising. Communities can pull together, for example the London riots. These are smaller examples of what happened yesterday. Events like this cross all social, religious and nationality, boundaries, everyone does something to help, and everyone gets something back. A very definite, win- win situation.

What stops us working together more often? Even in charities, there is a competitive edge. Although a lot of charities work in a similar field, sharing information is not always a common practice.The common theme here is the patient. Surely everyone is working to benefit the patient, not themselves or the organisation.

I guess that with events such as we are currently witnessing, there are very few personal agendas, no promotions or pay rises, no pensions to protect, and no egos to massage. Just a common desire to ensure that everything goes as well as possible and that people have a great time. In my personal experience, just to see people smiling is a reward on it's own.

Now here's a thought. Maybe it is a unified event, because the politicians had very little input!  Are you enjoying the Jubilee? Why can't we find this feeling more often?