How did I become a patient patient?

I have to admit that patience, was never a quality that I had in abundance. I have always been very impatient, and I guess that it is one of the characteristics that drove me on in my life, certainly in my career. Never waiting for things to just happen. Always looking to make the most of any opportunities that came my way.Trying to take control of my life and steer it in the direction that I wanted it to go.

Then I got my news! To me, not being well, was having a cold, or at the worst flu. Even then I would still go to work. As far as I was concerned, I had a plan, and a bit of illness wasn't going to upset it." How long will I be off work?" was my first question when given the news I was dying! Nothing had ever stopped me going to work, and I couldn't comprehend it at all. " You will be very sick for at least 6 months and it will take you at least 6 months to recover" was the answer.

Huh, they always tell you the worst scenario. I will be back to work within 6 months I thought privately.Well that 6 months turned into a year and a year turned into 5 years plus. During this time I have had to rely on a lot of other people to do things for me, to enable me to live something approaching a reasonable quality of life. My standard riposte of "don't worry I will do it on my own" got me nowhere, as I couldn't!

It took me a long time to realise that my impatience, was hindering my well being. I started to set deadlines for my recovery, and miserably failed to meet any of them. That made me upset with myself, and I became frustrated, thus making me feel worse.I finally realised that my life was no longer in my hands, and actually I couldn't really control much anymore. So many things were out of my control. I decided to 'freefall' meaning, 'what would be, would be.'

Even when volunteering, I have maintained my impatience, and always viewed things as if I was working. Constantly trying to be the best, and pushing to achieve more.But things are also very different to the cut and thrust of my old working life, in this sector. Everything feels more relaxed, and flexible. Timings are different, and priorities are constantly changing, so I have had to adjust here as well.

The intentions are good, but I am now used to things invariably taking longer than anticipated, or sometimes not actually happening at all. My experience in the sector, has made me a lot calmer. If things happen, all well and good, but if they don't, I am not surprised! I get used to being asked if I can do certain projects and then never hearing anything more about it.

Going for a hospital appointment is another area where my patience has been tested fully! I very soon realised, that the time of your appointment is rarely related to the time that you will actually be seen by the Consultant. There are of course many reason's for this, most, very valid, but it doesn't help your own plans. No matter how excited I get, it just isn't going to change anything and the doctors are always doing their best.Trips to the pharmacy, and blood testing, are similar situations. Everyone doing their best but the whole process takes a lot longer than anticipated.

My final impatience, was for some time in the sun. The years go past, and I always promise my wife, that it will be this year that I will be well enough to take a holiday. Well we have only managed one week away in 5 years, so again my impatience has turned to patience.

Getting better, going back to work, taking a holiday and living a normal life, were all things I was impatient to achieve. They are all still objectives but if they are meant to be, they will happen. If not, so be it! I am no longer angry when told that timings have changed, in fact, more surprised if they don't. I am trying to turn my angry energy into something positive.No longer am I eaten away by lack of achievement in whichever area of my life I look.

My biggest achievement in this period is staying alive, and I am happy with that!

Do you get frustrated with your illness, or any other aspect of your life? How do you deal with things? I would love to hear from you.

Stem cells and Santa!

Yes, it's that time of the year again! The season of goodwill to all men. Parties, presents, drinking,eating, and enjoying ourselves. That's what it's all about isn't it? For most people it is. They might also remember that it is a religious holiday too. But unfortunately, cancer doesn't take any time off, and continues it's relentless progress, celebration time or not.

I am experiencing at first hand, the pressure that patients can feel over the festive season. The difficulty of doctors and staff being away. Ensuring that you have enough medication to see you through the period.Worrying about what will happen if you do get sick, over this period. The hospital with far less staff than normal, if you do.

However, this time is a particularly poignant time for me. Five years ago, I was in my isolation unit, undergoing a stem cell transplant. The staff were unsure about starting it before Christmas, but I was in such poor condition that in the end there was no choice.My immune system was slowly poisoned over 10 days until it was like that of a new born child, then I was given my life saving transplant. A little bag of stem cells from my anonymous donor was sent across London on a motorbike.All organised by the Anthony Nolan Charity.

The gift of life for Christmas, how meaningful is that?? My goodness, how lucky am I? In honesty I am feeling quite emotional whilst writing this piece.Even with this transplant, no one was sure what extra life I would be given, if any. There was no guarantee that I would even survive the transplant.Yet here I am, 5 years later writing this.

I would like to share some of the more surreal moments of my festive season in 2007. Firstly, even though I was under heavy sedation, the Sister, (who was a very attractive young lady,) asked me what I wanted for Christmas. my quick reply was her, in a tiny Santa outfit! ( sorry ladies!) She played along and came in on Christmas day with her outfit on!

Secondly, at just past midnight on Christmas eve, all the patients got a little present from the hospital. What a lovely thought! Finally, on Christmas day, my family and friends all came in to visit me. It certainly was a unique way of celebrating.
So now, I am like the Queen and have two birthdays, my official one and my new life one. So although my bodywork is 56, my system is only 5.

Christmas is a family time, and although we all lead such busy lives, it is an opportunity, for people to spend some quality time with each other. For me, it is a period of reflection. I have so much to be thankful for, and I can celebrate that, amongst loved ones and friends.Since my illness I have had two grandchildren, and my boys are progressing in their lives. My spare time is taken up by doing lots of exciting things I never imagined I would be doing.

It has taken me a long time to realise, but we are not really in charge of our lives at all! Things happen frequently that change our lives but are totally out of our control.My choices are very restricted, but as I have mentioned in a previous post, things just happen! I could never have imagined seeing 5 Christmas's after being diagnosed with a stage 4 incurable Lymphoma.

So, as the festive time is upon us, and I watch people celebrating, who knows what is really going on in their lives. Is it just an opportunity to escape from some of our everyday issues? Who cares, they're enjoying themselves. In recent years, there have been more serious moments, and less lighter ones.I am leaving my baggage outside this Christmas, and will pick it up again, in the New Year. It won't forget who owns it, and I don't think anyone else will want it, so I know it will be still there, but a few days with family and friends will make it feel lighter, when we are reacquainted.

But the good work, continues. Some of my nurses and doctors are working over the holiday, and will be there if required, and my thanks goes out to them and their families for the sacrifices that they continue to make on our behalf. Also my thoughts are always with my fellow patients who are going through treatment with me.

I hope that the Christmas period treats you well, and maybe you would like to share some of your seasonal experiences? Feel free to leave a comment, as The Community is open 24/7 365!

A full time job, without benefits!

 I seem to spend my time running from one hospital appointment to another, either for treatment or a review.If I add blood tests and pharmacy visits to the mix, I spend a good percentage of my life tied up in my health issues. My diary is a necessity, to check what time I have left, to fit in any other tasks that I may wish to do. That discipline continues, for my medication. My wife organises my daily tablet regime, which must be done at certain intervals, some with food, and some without.

This programme has continued to varying degrees, for the last five and a half years. Sometimes more full on, and others less so.I am now treated in two hospitals, so things have got a little more complicated, and travelling up to London twice a fortnight, requires a bit more planning than normal, and of course, more time.More often than not, appointments over run so you can end up waiting around, or rushing about.

I never have an appointment card, for two reasons. Firstly it would be the size of a 'Yellow Pages,' and secondly, my priority is always my appointments, which, although I have a poor memory generally,I cannot forget them! My view is that if my Consultant considers it important for me to come to hospital, then I must. After all, it is in my own best interests.

Whilst in hospital last week, some other patients were discussing how difficult things were, when trying to cope with their treatment schedule. As well as routine issues, there were things like special dietary requirements, also unscheduled visits for  radio or chemotherapy. Everything is difficult to cope with, if you remain fit, but if you get sick, then all the planning goes out the window and things have to be rescheduled.

My working background was management, so I haven't struggled too much with my treatment plan, but I can certainly understand when people do.It can be a very punishing schedule, for someone who's system is already compromised, at the start of the process! It really can be exhausting. Even sitting around waiting for tests, can be very tiring. You keep checking your appointment time, once the time has come and gone. Checking your number again and again, if you are in a queue for blood testing or collecting drugs. Everything seems to get slower as your time comes. 'How long have I been waiting here?' Plays over and over in your mind.

Of course, I have only mentioned the patient, in this process. There are carers that have to totally rearrange their lives to cope with the needs of their loved ones.In many respects being sick is like taking on an additional job. So many more responsibilities and meetings! Not too many fringe benefits though.

Naturally, if your health is not right, nothing else is important, but I have found that it is necessary to have distractions. That is why I get involved in all the projects etc that I do.Not only, is it a way of maintaining my business skills and maybe learning new ones, but they take my mind away from my own health issues, and give me a good balance.
Yes, I find it very difficult at times, to find the energy and enthusiasm, to get involved in things when I am in the middle of a treatment cycle, but I have always felt an overwhelming feeling of satisfaction once I have.

For me personally, my disease and consequential treatment, has meant that I am unable to work, but I do know many people that are attempting to hold down a job or studies, whilst having treatment etc. I am also aware of the issues that they are having, and I often wonder if the fact that they are still having to try and work, is possibly hampering their health.I fully appreciate the financial implications involved, but I am very aware of the stress that this puts on their recovery.

In summary, I feel that many people, including patients, employers and health professionals underestimate the extra stress that illness can bring. Very quickly, there is a lot of additional pressure added to very busy lives. I guess we just have to find our own ways of dealing with it, as I know from personal experience, I know best!

How do you deal with illness? Do you underestimate the added burden on your life?

Making life changes can be tough, but beneficial!

Like most of us, when I was younger, I was encouraged to make a 'life route map.' This was a path that I was to follow, which would take me into a career, find me a wife, produce 2.4 children, buy me a house, and ease me into my retirement, where my golden pension would help me live happily ever after.

Well, either my planning was no good, or I was useless at map reading! I am currently 56, haven't worked for nearly 6 years, and am definitely not looking at a golden pension. My path started off quite well, and I fell into a career, but that is where it all started to go wrong. It wasn't the right one! It then felt like I had totally lost my way, no map, no compass and no road either.

But things started to happen for me and opportunities arose. It felt very strange. I was used to living the 'safe' life, and driving in the middle lane, but I was then forced to step outside my comfort zone, and start making decisions.'What if' started to creep into my thinking, and self doubt started dominating.

The stage had been reached where I could no longer sit on the fence, and choices had to be made.I changed career, and my life took off. I felt totally empowered, and started to enjoy, making big decisions. The bigger the better, bring it on! I thrived in a volatile business environment, with my newly found confidence, and things got better and better. Yes, I was taking some calculated risks, but I always had a plan B.

We all know that things can't last, and sure enough,nature intervened. This was another instance where my life had taken a direction, that most definitely was not in my plan." Mr Lewis, you are dying" didn't appear in my script anywhere, certainly not at the age of 50. It seemed like I had been relieved of decision making duties temporarily, and nature was going to take over.I was looking forward to a break, but not quite in that way!

Nature picked me up and bounced me around a bit, and left me blindfolded in a place I couldn't recognise. Where do I go from here? My health was poor, my confidence had gone, what did I have to offer? The decision making power had been taken away by nature, and I could barely choose what I wanted for lunch!

The one thing I could decide was that I needed help. That proved to be another life changing decision, although it didn't feel like it at the time! I was volunteering in Macmillan h/o doing data entry.Me, a 'captain of industry' only capable of basic office work! Can you imagine how that felt??

One thing led to another and with small steps, so many wonderful things have happened to me, leading to creating this blog. So many exciting things, that wouldn't have happened in my previous life.My confidence is returning, and with it, come the opportunities, thus the choice process, is required.

Now it feels entirely different.I am unable to work, so am not looking for a career. Just a way to use my time most effectively, and doing something I enjoy.I have no personal fear after this experience, which gives me the freedom to try new things. What is the worst that can happen if things don't work out? Exactly!

I really do appreciate, that living life in the way that I have, is not everyone's ideal. After all, that is what makes life so interesting.However I can say that since my illness, I was forced to adapt things in my life, that wouldn't necessarily have been my choice, and some exciting things came around because of it. Not all change is bad, and we evolve because of it. Sometimes it is by our choice and sometimes it isn't

Although I am at this point because of nature, I really have a feeling of 'freedom' about certain aspects in my life. Sometimes it can feel right to 'take a chance!'

The above post is a major milestone for me, it is in fact my 100th, since I started writing, back in February. I would like to take this opportunity of thanking all  my readers for your continued support. Thank you for sharing your thoughts and emotions, and also for sharing this blog with others.

This has helped us become an internationally known resource for people affected by cancer. Please continue to spread the word, as there are still plenty of people out there who don't know about us. Also feel free to join this blog, which can be done easily via Twitter. Your logo will appear, and you will get automatic updates.

My blessing is also my curse!

My working life before cancer, was almost perfect. Apart from doing too many hours, it had everything that I wanted. Good pay, benefits, travel, contact with many different people around the world, and it involved buying and selling, which were things that I realised I was good at. The main thing for me was variety. You never knew from day to day what would be happening and who you would be talking to. Busy, quiet, good or bad, every day was different.

Then came cancer, to put a spoke in my working wheel! Regular treatment and appointments followed by resting at home. To top it off I spent months in isolation trying to recover from various complications. Not only did I feel very sick, I felt fed up with the routine of things. Physically, my body was coping but mentally it was tough. Being woken at the same time every day, meals, drugs and treatment, all part of a regimented routine.It was fine for my body, but I felt I was going crazy.

They say to be careful what you wish for, and the idea of some time away from work did have a certain appeal, but not for long.My mind started playing tricks on me, and I really believed that I could return to work, quickly, and be the person I was. No way! The reality is, I now struggle to cut the front and back lawn in the same day.Although my brain tells me that I can run the world, my body struggles at a keyboard.

But the good news! Despite the recent years of pain and boredom, I have been able to get involved doing lot's of different things associated with my illness. I work with several charities, and have numerous small projects going on.I also now spend a lot of time writing. Either for my own blog or other articles, when I get asked.

In a different way, the variety of my working life has returned.From not being known by anyone in the cancer sector, I am now contacted by a wide variety of people, from all walks of life. If I'm lucky I get to talk to some famous people, but also some very senior members of the medical profession, writers from around the world, and people like me affected by cancer.I never know what the next email or phone call will bring.

Currently, I am excited by things that are happening in my working life, as the phone and emails get busier.So many lovely people, are beginning to find me, from all around the world, and I have some exciting things happening in 2013. Many of which, I would never have imagined. In the last few years I have experienced so many positive things, and still continue to.

Which prompted me to think about, how the curse of cancer struck me, took away a lot of my hopes and dreams, and some of those of my family. My future is just day to day, but I now have back, that variety, for which I craved. Yes, I have worked like crazy for some of those things to happen, but they have. I can deal much better with my health issues if my mind is busy, and I am fully occupied.

The feedback I receive, fuels my desire to do more, until my body lets me know to take a break.I have been shown talents I never knew I had, and am able to help enrich the lives of others in a small way.I am mentally re energised. The ironic thing is that none of this would have happened if I had not got sick.All the people that are now a major part of my life, I would never even have met!

The people are very much my blessing, but the curse never feels far away.

How do young people deal with a cancer diagnosis?

The world certainly seems to start speeding up, when you are diagnosed with cancer! It also makes you slightly selfish, as it is all consuming, and  difficult at times, to see anything other than your own health issues. My areas of work, mean that I meet some very interesting people, either face to face or online, and very frequently a conversation will really make me think about other peoples problems.

My 'light bulb' moment was about a year ago, when I was guest speaker at a support group meeting. The regular members were 'silver surfers' much like myself, but a young lady who was newly diagnosed, was attending for the first time. I was able to speak to her briefly afterwards, but although her diagnosis was the same as the other members, her problems were very different.

You regulars, will know that I work very closely with my hospital charity, and in recent months I have met people with children, diagnosed with cancer in our hospital.Having spoken to those people, and also health professionals I am starting to understand some of the problems that they face. Even during a fund raising evening, I was approached by parents who's son had been diagnosed with a cancer similar to mine, seeking advice, as they were struggling with his issues.

This got me thinking, and looking around in every cancer environment I enter. Wherever I go, be it hospital, clinic, having treatment, or even surfing  websites, everything I see is adult orientated. Obviously, I am not referring to specialist children's wards or hospitals, but more general areas.Maybe it is that I am not involved with younger peoples care directly, so I won't see it, but just looking around I see very few facilities that might be young adult friendly.

Even things like going for treatment. I have spent a big chunk of my time having some form of maintenance in hospital. You very quickly form a bond with your fellow patients, mostly because we all have very similar stories.If you are at uni or similar, I can see that it might be difficult for you.

Relationships, appearance, education, dealing with treatment, even down to trying to find someone who is going through similar things to you, are all very difficult when you are young.Who can you talk to?

Well, we know that it might not be perfect, but we have social media! Through this blog, I now connect up with people in every country in the world.I have learned many things since I have been writing but the main thing is that we all have a common bond, and that is cancer. No one cares, about your sex, colour, religion or age, and why should they?

On this platform, you can be yourself, or anonymous. you can contribute or not. Join the blog or follow at your leisure, the choice is entirely yours. There are no awkward questions, to answer, and no talks to do. That is the beauty of this medium. Together with Twitter, we are managing to reach a lot of people, including a younger audience, and help remove that feeling of isolation that we have all encountered.

The way that support is required these days is changing dramatically. We are used to having things, as and when we want them, generally in the palm of our hand.Social media can provide an element of support, as and when you need it. It can be a great tool for signposting you to either information, or a fellow patient, thousands of miles away

From my experience, young people are generally very proficient in their use of social media and to most it is second nature, it therefore seems logical to use it to offer various forms of support, of which this blog is only one.

I am very happy to announce that we have been selected as a resource for the Youth Cancer Trust  and I look forward to welcoming some of our younger readers to hopefully share some experiences with the community.

If you feel that you would like to share,young or old, please don't hesitate to let me know. I am always around on Twitter, or feel free to leave a comment

My name is not cancer!

Since my diagnosis, back in 2007, and despite my efforts to the contrary,cancer has dominated my social life. Sure, it has been my crusade of choice,to spend most of my time, being involved somewhere, trying to improve peoples lives. So much so, that I spend my time at home, writing about it too!

I am extremely lucky, that my wife and family are fully supportive of my work.They understand, that I have always been a highly motivated person, and that despite the handicaps my illness has placed on me, I am determined to do what I can. If I am honest with myself, there are times that I have let things totally consume me, which is absolutely emotionally draining, but I would like to think that I am more disciplined now.

This blog has become the perfect medium for me. As my tough regime of treatment goes into it's second year, I'm finding it increasingly more difficult to give as much physically, and emotionally, as I have before.I now need to step away at times and catch my breath.On some occasions this can be tough, as now,people are aware of my work, and with the audience of my blog, a lot of people are in touch, wanting different things.I have to say that I find it very difficult to 'ration my passion'.

My work is the easiest area to control I guess.I either get involved in something or I say no! However, how can you say no, when you have an opportunity to hopefully improve someones life? My selection process has become easier over the years.Initially, I wanted to take most opportunities, as I needed to gain a reputation, and experience.Having had five years of doing that, I have served my 'cancer apprenticeship', and am qualified to be able to choose what I do.

I have become selfish with my skills and experience,as there are too many 'takers' out there. I have seen too many long term projects, go nowhere, and spent ages in meetings which turned out to be just another tick box exercise, for the organisation concerned. I now know, what is going to make a more immediate improvement to peoples lives, and will concentrate in those areas.I am finding tremendous satisfaction from working with more personal organisations where I can really make a difference. Also working with, like minded people, on social media, campaigning in various ways to improve things in the cancer sector.

The area that I can't control, and is the difficult one, is my social life.Where ever I go, and whatever we do, the subject of my health is raised. I'm sure at times  my wife must be thinking, 'here we go again'. People are very polite and ask with genuine interest, particularly if we haven't seen them for some time, but then the subject of cancer dominates! In a lot of cases, friends of friends have been diagnosed, and will be asking some advice.It really is tricky, and I can see both sides of the coin. If they don't ask, we might think that strange, but if they do, here we go again! 

Medically, my case is a very unique one, and there is someone at hospital writing a case study on it, but I am very conscious that when people see me these days, almost in any environment, people seem to know who I am, and are intrigued by my health stories.I really enjoy going to social functions, where I know very few people, until, 'what do you do for a living', crops up. I now answer, that I have retired, hoping to close the door on that, but then people are interested in what I did, so that I could retire so young!

People seem to find my cancer story interesting, and are surprised at the number of things I do, 'considering my illness'. It is very difficult for people to see me as anything other than that guy who has cancer.Mind you, there are also times I find it difficult too.! I guess I am living a new life, and this is part of it.

Do you feel that you are defined by your illness? I have got used to it now but do you find it an issue? Drop me a comment and let me know how you feel.

I would like to dedicate this post to Megan Fletcher, who was the inspiration behind MNINC which is a wonderful website run by Megan's mum Fiona, and her team.It is very unique and I recommend that you check it out!

Is mandatory screening a good thing?

This post was prompted by the recent headline, written after several years of research, showing that up to 4000 women per year are being over diagnosed, for breast cancer.This is something that I have always suspected would be the case, and I can see arguments both for and against.

There have also been calls for routine PSA ( Prostate Specific Antigen ) tests for men over the age of 50, as an early detection of prostate cancer. However, after many years of research, there still is no definitive answer as to whether, this is the right way to go forward.

There are several different views in this discussion. Firstly, the obvious one, is anything that saves lives is worthwhile! Secondly, in today's economic climate, the total cost of screening millions of people.Finally, the emotional cost on 'the worried well'.

According to the recent statistics, routine mammograms save approximately 1300 lives per year.But for every life saved, 3 people are over diagnosed.Of course if you are the life saved, you are grateful that the system exists.However my thoughts turn to the people that are over diagnosed. Once you have been informed that you have cancer, then your mind is in turmoil.

Over the years I have spoken to many people that have been newly diagnosed, with various different cancers.In instances that were considered less serious, and in the 'watch and wait' category, most people were very keen to do everything they could, to be rid of the cells, and live, 'cancer free'. Even if this involved, complicated surgery, and a tough regime of treatment. It had started to effect them psychologically.I call this category of patient 'the worried well'.They could be unaffected, physically for years, maybe forever, but decide that they can't live with a cancer diagnosis.

I mentioned above about a PSA test for men, and below are some interesting findings.
The United States Preventive Services Task Force has analysed the data from the PLCO, ERSPC, and other trials and estimated that, for every 1,000 men ages 55 to 69 years who are screened every 1 to 4 years for a decade:

• 0 to 1 death from prostate cancer would be avoided.
• 100 to 120 men would have a false-positive test result that leads to a biopsy, and about one-third of the men who get a biopsy would experience at least moderately bothersome symptoms from the biopsy.
• 110 men would be diagnosed with prostate cancer. About 50 of these men would have a complication from treatment, including erectile dysfunction in 29 men, urinary incontinence in 18 men, serious cardiovascular events in 2 men, deep vein thrombosis or pulmonary embolism in 1 man, and death due to the treatment in less than 1 man.

Before knowing any of the above statistics, I would always have said, that  you could never have too much screening. After all, surely early detection is a good thing? That is what everyone is telling us now. However, we have come to see that the tests we currently use as indicators, can only tell us so much.

I liken this scenario, to being told someone else's secret. You didn't ask, but now you have information you didn't really want, and have to make choices. Your life has changed! Do something, do nothing, just live with it?

Until we are able to be much more precise with the tests we do, patients must be more aware of their options, and the possible consequences of their choices. There certainly are many different opinions and differing outcomes.This is where it gets tricky! You can only make a truly informed decision, if you have all the information. Even then, as we know, everyone is different. what is good for one person, is not so good for another.

I feel that if we have the facilities and capacity to early detect disease, then we should use it, even if it does have it's drawbacks. These will certainly improve, with more accurate testing procedures. I also think that knowing what we know now about over diagnosis, will accelerate our work in improving these tests. After all, they cannot  take away breast screening now, and the pressure will only increase for a prostate test for men.

From what you have seen above, and if you were in charge of the health and finances in this country, what would you decide to do?

Cancer information with some collaboration please!

This week has been a particularly busy week. I spent the first two days, having my regular treatment, and yesterday, was performing my weekly volunteer role. In those two environments alone, I continue to meet and talk to such lovely people, both patients and professionals. It is a great barometer of how services are actually performing for patients.

As I'm sure you are all aware by now, I work in many contrasting environments in the cancer sector. From, ceo's, policy makers, social media, right through to the service user, i.e, me and my fellow patients. So I get an interesting perspective on things.

Firstly I would like to say that there is a fantastic amount of work being done regarding information for patients, and the situation is improving daily. It seems that the subject of cancer is now becoming quite 'fashionable', and it is rare not to see, articles in the press, and programmes on the television. Celebrities are telling their stories, and they appear to have a very sympathetic listening ear,all the way from Government, to the general public.This then will drive, increased investment, and eventually improved facilities for us all.

Having said all the above, I am constantly meeting people, who are still falling between the cracks. I am continually finding people that are initially so overwhelmed by their situation that they just cannot see a place to start searching for the help they need. It is very easy to offer advice to someone in that situation, but unless you have experienced a cancer diagnosis, it is difficult for you to understand what type of thoughts are running through that persons mind. All logic can be removed, and even simple things can seem very complicated.

Then there are the issues caused by having a rarer disease. There is normally info around, but it is certainly harder to find. Most organisations tend to specialise. Rarer cancers tend to get less funding, therefore there is generally less support available. It may also be much more difficult to find a support group, if the disease is rare.

There are also issues, around where you live, otherwise known as 'the postcode lottery'. If you live in a major city, like London, you would like to think that most things you are likely to need are on your doorstep. I feel that many of us 'Londoners' take this for granted! What if you lived in The Highlands of Scotland, or somewhere equally remote? What are the chances of being able to meet regularly, with someone who has similar issues to you.

Of course, now the Internet is becoming a very powerful weapon, in cancer support, although there is still a lot of hesitancy in the professional world, due to lack of knowledge,experience, and trust. There is still the issue that a lot of patients do not have access to a computer, but this will improve in the next few years, as we all need to embrace the benefits that the internet can provide.

Personally I feel that we have enough sources, of good information, flowing now, which of course will be continually updated, but what I feel we lack is cooperation By that I mean, that organisations still find it very difficult to work with other organisations.It would be very helpful from a patient perspective, if there was more collaboration.It seems that in a lot of cases,  although they might work in the same area of expertise, they don't really know what their 'competitors' do. Thus making it difficult for the patient to find exactly what they need if your people don't do it.

There appears to be an element of competition, and people become 'precious' with their work, meaning that sharing becomes difficult. Therefore the patient, may not see some information that might be of benefit to them, because they haven't asked so many different organisations. I would like to see more signposting between them. It can be like a maze out there, and it can take an experienced person to help you find what you are looking for.

Some of the smaller organisations, get buried by a barrage of advertising, from the larger ones, and struggle to be found. It might be better if there was more cross organisation working. It would then also avoid a lot of unnecessary duplication of expertise.Ultimately we should all be working towards the same goal, which is a better and wider range of information for every patient. Of course there are financial implications, who funds what, who pays for what etc. But I am sure that if we could find a way of sharing information more effectively, the patient would benefit tremendously

I would like to share a recent example about what I am talking about. I met a patient for the first time this week who had a relatively common cancer.They had phoned an organisation for advice, were moved from person to person, without actually haven the original question answered. In the end, gave up, and thought that help wasn't available. I was able to signpost, quickly, because of my overview of cancer information providers.

Surely in these tough economic times, it would make financial sense as much as anything else, but ultimately a much more user friendly experience for patients must be our ultimate goal.

Are you happy with things the way they are, or do you agree with my opinion?

Cynical health marketing, a victims story

Following on from my previous post, about the commercialisation of charities, I found myself in a very interesting debate on Twitter, and I was joined by some considerably knowledgeable and experienced people. During that, I was made aware of the below post, by Stephanie Butland. Stephanie is a blogger and writer with her own very informative website.

This experience, captured exactly the type of problem that is now unfortunately becoming so common. The pursuit of cash, is appearing to dominate the agendas of large organisations, with absolutely no regard for the individual. Cynical marketing campaigns, to obtain your personal details to enter onto a database to attack you with eternal begging letters and phone calls.

With the amount of interest that both Stephanie and myself have received since we published our posts, it seems like this is becoming a bigger problem than we imagined.I found Stephanie's account of her experience, very powerful, and she has kindly agreed to let me share the below piece with you.

"Breakthrough Breast Cancer, I am ashamed of you, and I offer you some advice."

If I wasn’t poorly and stuffing myself with antibiotics, tea and House re-runs, I wouldn’t have taken the call, so I wouldn’t have known what an idiot I made of myself when I commended Breakthrough Breast Cancer’s TLC guide to you on Monday.

You might remember that I said:

There’s a guide that Breakthrough Breast Cancer have brought out – I think it’s very useful, though it’s a great shame they haven’t made the information easier to get hold of, and I think having to trade your mobile phone number to get it is a bit much.

So, I’m sitting here with my tea and my knitting and my House re-run (thinking it could be worse, I could be a nun with a copper allergy), and the phone rings, and it’s a very nice man from Breakthrough Breast Cancer who would like to take my address so he can send me my TLC guide. I give it to him. He offers to text me every month to remind me to check my breasts, which I decline – I think my thrice-daily-dressing-shower-undressing check routine is probably sufficient, and that’s only the times I realise I’m doing it – but I think is quite a good idea.

And then he tells me about the breakthroughs that are happening in cancer research, and asks whether I have any experience of breast cancer. I say I’m a survivor. (I know, I know, but I’m not really thriving this week. Tomorrow will be better.) He says – and I have a horrible suspicion of where this is going by now, but I hope I am wrong – that that’s really terrible, but it’s good that I’m OK, and I of all people must understand how important it is to fund research, and maybe I’d like to donate £10 per month. I say, I agree that there’s a need for research, absolutely, but I have all my fundraising and donations pretty well sorted.

He says, that’s fantastic, and proceeds to tell me a story about a woman diagnosed with breast cancer when 34 and pregnant who was ‘terrified’, had to have her baby delivered early, but fortunately all was well – phew! – so maybe if I couldn’t do £10 per month, £6 per month would be manageable?

I know times are hard. I know charities are fighting for an ever smaller pool of money. I know that cancer research needs money. I know that, from a marketing point of view, telling stories works better than flinging statistics around.

BUT.

Breakthrough Breast Cancer, two points to note.

1. This campaign is dishonest. If you want to make people aware of the hidden signs of breast cancer, do it. If you want to ask them for money, do it. Don’t use the offer of life-saving information as a way to get people’s phone numbers.

2. This campaign is cynical. Of course the people who want the guide to finding breast cancer consider themselves vulnerable to breast cancer. You’ve collected the phone numbers of people who think they might have, or get, a cancer, and you’re calling them with requests for money.

I’m going to email a link to this post to Breakthrough Breast Cancer, to ‘Lorraine’ (the TV show that’s sponsoring the campaign), and splash it all over Facebook and Twitter. If you agree that this kind of thing isn’t on, please feel free to do the same. You can email Breakthrough Breast Cancer here.) If you think it’s fair enough, well, fair enough

If you would like to see more from Stehanie, please click here

 

 

Have charities been hijacked by commercialism?

In recent weeks, I have seen a lot of comments about the relationship between large corporations and the charity world, which have confirmed some of my ongoing personal thoughts. Like most things in life, it goes in cycles. Years ago, charities struggled for publicity, to initially tell people about what they were doing,thus making it difficult to raise funds.

However, over the years,being involved in good causes, has become more 'trendy'. It was realised that to raise the profile of your organisation, you needed the help of someone in the public eye.So, very slowly, public figures engaged with their favourite good cause.It was no coincidence, that those organisations began to grow, and realised that this is the way forward financially.As the money started to trickle in, it became obvious, that you needed to spread the word further, and get more people on board, to hopefully turn the trickle into a flood.

It is fantastic, that celebs are getting more involved in the charity sector, however, some of the more cynical amongst us, may also notice, that as their good work increases, so does their personal exposure, leading to, in most cases, a vast increase in sales of books, films, cds,dvds etc.

 The closing ceremony at the 2012 Olympics, was a perfect example. It was a wonderful show, and I enjoyed it thoroughly, until I read the amount of cynical plugging that had happened throughout the evening. The worst example being George Michael and his new single!

The marketing teams, that most organisations seem to have these days, soon spotted an opportunity, to 'shoe horn' their products into awareness weeks, with probably the most over hyped, 'Pink Month' being the prime example. Interestingly, this year, I have heard so many ladies mentioning how upset they were that this month has been taken over by organisations trying to sell anything in pink!

To bring this post right up to date, it wouldn't be right if I didn't mention Lance Armstrong.His case has been well documented, and involves massive sponsorship from companies like Nike, and Oakley.His charity, and fund raising, was a phenomenal worldwide machine.It is fantastic to raise so much money to help people affected by cancer, but I can't help thinking about the various agendas involved there.So many conflicts of interest.

Just this week we had some ground breaking tv, with 'Stand Up 2 Cancer' A brilliant idea! Putting the subject of cancer in the public domain in such a way, and on main stream television. I thought it was incredible, how far, we as a society have come, where we can now accept, and talk more openly about the subject. I only caught snips of the show, to be fair, and I have heard about the many inspirational stories. But the bits I saw, looked like an extension of the Alan Carr show, but raised a lot of money, I'm sure.

With the introduction of social media, meaning we can now share things in an instant around the world, we have very powerful tools, to help us raise awareness and funds. However I can't help thinking that we are going too far too fast. From very little information about our favourite good causes, we are now under a constant barrage, to donate money, and the ways that we can do it, have also become easier.Credit cards, texting, donating online, directly from our salary, the ever popular clothing recycle bags, door to door campaigning, even leaving money in our wills, is becoming easier. Wherever I go, I am constantly having a bucket waved under my nose, for causes I have never even heard of.

 

My personal feeling is that, if we are not careful, people will feel less willing to donate to causes that are too 'In your face'. In the tough economic times that we are encountering, obviously, people are less likely to want to give money to charity. Thus without the income, there will be less good work happening. Of course, none of us want to see that happening. But currently we have an open battleground, where all good causes are competing for our cash. Each, trying to gain market share.

Does this mean a scenario where the largest organisations with the biggest marketing and media teams clean up, and local organisations go to the wall? I guess, the choice is ours really.It is up to us to choose to give where we feel our donation can make a difference. Good cause giving, is a very personal thing, and we all choose to support what is close to our heart. I would like to think, that our giving wasn't dictated by celebs and marketing campaigns, but I'm sure it must be, or those factors wouldn't be increasing.

What do you think? Will you feel differently, when you next donate money?

Carers, where would we be with out them?

I was invited to a business lunch last week by an organisation, and was asked if I would like to bring my wife, as they also wanted to discuss things from a carer perspective. This prompted me to write this post, as I had realised that I hadn't really dedicated a post to the important part that my wife and family, continue to play in my life.

My wife never looks on herself as my carer, and that seems to be true with most people I have met. Also, in my mind, I try not to admit, that I need caring for! Although, I don't even know which pills I should be taking on what days, so it seems I do.She is always there for my constant moaning and groaning, and I'm sure that is not in the job description.I know that without her support, it would have been impossible for me to do the things that I am able to do.

Carers also need support, of course, but one of the problems that I have encountered is for someone who is performing the role of a carer, to actually understand that they are. I feel that there is an issue with the word, but I know there has been a lot of work done, to find a better one, but thus far, without success.

A carer is someone of any age who provides unpaid support to family or friends who could not manage without this help. This could be caring for a relative, partner or friend who is ill, frail, disabled or has mental health or substance misuse problems.
Anyone can become a carer; carers come from all walks of life, all cultures and can be of any age.

Many feel they are doing what anyone else would in the same situation; looking after their mother, son, or best friend and just getting on with it.
Carers don’t choose to become carers: it just happens and they have to get on with it; if they did not do it, who would and what would happen to the person they care for?

Carers are the largest source of care and support in each area of the UK. It is in everyone’s interest that they are supported.

• Taking on a caring role can mean facing a life of poverty, isolation, frustration, ill health and depression.
• Many carers give up an income, future employment prospects and pension rights to become a carer.
• Many carers also work outside the home and are trying to juggle jobs with their responsibilities as carers.
• The majority of carers struggle alone and do not know that help is available to them.
• Carers say that access to information, financial support and breaks in caring are vital in helping them manage the impact of caring on their lives.

Carers experience many different caring situations. A carer could be someone looking after a new baby with a disability or caring for an elderly parent, someone supporting a partner with a substance misuse or mental health problem. Despite these differing caring roles, all carers share some basic needs. All carers also need services to be able to recognise the individual and changing needs throughout their caring journey.

Carers often suffer ill-health due to their caring role. To care safely and maintain their own physical and mental health and well-being, carers need information, support, respect and recognition from the professionals with whom they are in contact. Improved support for the person being cared for can make the carer’s role more manageable.

Carers need support to be able to juggle their work and caring roles or to return to work if they have lost employment due to caring.
Post-caring, carers may need support to rebuild a life of their own and reconnect with education, work or a social life.
With an ageing population, the UK will need more care from families and friends in the future. This is an issue that will touch everyone’s life at some point. Carer support concerns everyone.

To help people understand the definition and needs of a carer I have used some of the above from the Carers Trust website, as it quite clearly explains the things that I am talking about. I see many frail and vulnerable people, who don't have anyone to help them through their treatment.I don't know how I would have coped on my own.

There are many different resources out there now, from organisations, booklets, posters and of course the internet, but nothing can replace, being able to rely on the support of a loved one. If you are lucky enough to have that, you must  be aware that that person  will also need support at times, be it practical, emotional or psychological. Thank you to all of you unsung heroes out there, although I am sure you won't see yourselves as that!

Do you consider yourself to be a carer? Where would you be without your carer? Please feel free to leave a comment.

If you are enjoying this blog please feel free to share the link via Twitter or Facebook etc.

We are real people, not just a statistic!

Since I haven't been able to work, I have been at home much more than I normally would have. There have been many plus points to that, but several negative ones too. One of those, being prone to constant marketing phone calls. We have done what we can to stop them but still those clever blighters find a novel way round the system. Yesterday, my energy supplier called to talk to me about loft and cavity wall insulation. It was quite obviously from a call centre and the guy must have had a list of calls to make. He asked about loft insulation, and I told him it had just been done, he then asked about cavity walls, and I said that we didn't have any!

He then immediately asked about loft insulation again. I asked him how complicated it was to ask two questions and actually listen to the answer.He was quite obviously reading from a script, and not the slightest bit interested in my loft, walls or me. I was just another statistic to him. Which then got me thinking.Everywhere we go, whatever we are doing, we are bombarded with requests for feed back, and then fed a constant diet of facts and figures.But it seems to me, that everyone has forgotten that we are real people.

Take Facebook and Twitter, and social media. Most things are judged on numbers. How many friends, followers, likes, readers etc do you have? Not necessarily the quality of those people, and how active they are. I then started to think about, my visits to hospital. I am always keen to give feedback where ever I can, because it obviously helps to shape service. Even the people asking the questions get judged on how many people they talk to in a day.

New projects are always an interest to me, with my business background. In either my charity or hospital work I see them constantly springing up as a result of previous information gathering. Every one gets on that particularly bandwagon, at that time. The project starts, it's another box ticked, pats on the back all round, then onto the next one. Sustainability anyone? What happens after you all move on?

I was sent this week, details of a new N.H.S scheme, looking for experienced volunteers. I smiled, as I sent my email into the large black hole that is any NHS volunteering scheme application process.I wanted to see if things had improved since I was first looking for volunteer work.Well it seems they haven't. Not even an acknowledging email. Yet again, another target for someone to chase, not at all interested in the individual, just chasing numbers.

Wherever I am, all I hear about is percentages. Life is now all about chasing targets. Just numbers to fill out on a spread sheet. Mail shots, phone marketing, social media campaigns, tv and poster advertising, filling in feedback forms or spurious competitions.Somewhere, somehow, you are a target.

In this week particularly, I have had many conversations, with people that are becoming concerned about how our care is being managed. Most of us have come to the conclusion, that despite a public policy of wanting more patient involvement, in care programmes, it is getting much more difficult for the patient to be heard. The processes are becoming too complicated and the people involved are becoming faceless.Many of my colleagues are much more keen to work locally than nationally, where their voice can be heard, and the difference that they can make is tangible.

The system pays lip service to the patient voice, because it has to. If you think about it realistically, even the Government are struggling to change the N.H.S, so what chance do we have? It is about time, that all players related to the health industry, realised that they are dealing with people, who all have feelings, and are not just part of a huge data base to be driven mad by surveys and requests for donations, as and when they feel like it.

There are times, when I question if some organisations have forgotten what they are actually there to do. Marketing, media and self gratification, very nice, but what about the patient?

The emotions of a hospital appointment

I often wonder if our health system is now such a monster, that it  fails to recognise patients as people, and not just numbers that have to be herded through the system, beating numerous targets on the way.I am not convinced that people truly understand the pressures that patients go through, and the emotions they experience around a hospital appointment.

I am speaking from five continual years of appointments in numerous hospitals, and different clinics. I have also attended many appointments with my wife. I would like to add that I do understand the problems involved in dealing with such a vast and varied audience.However, it seems that staff do not fully recognise some of the pressures that accompany a visit to hospital.

In a lot of cases, people have to change arrangements, to suit the appointment, and of course we all have time pressures. Therefore they may have work, children or dependents and transport to organise, before and after their appointment. A lot of visits involve routine check ups, but imagine if you were waiting for the results of some tests or scans. All those other pressures adding to your already increasing anxiety. Throw the ever ticking clock of car parking fees into the melting pot and you can start to understand the pressure that some patients might begin to feel.

You have finally got through the above, and you can see the clinic filling with patients, and your appointment time has come and gone. There is no sign of your doctor, and no information letting you know what is happening. How are you feeling now? This is the area that I am not convinced a lot of hospital waiting room staff fully understand. Why, I don't know, as it is their work.

I can quite honestly say, that the only appointments I have ever had that were on time, were when I went private! Given that fact, I think we are all used to waiting well past our allocated time, right or wrong, but that is the case. It seems like me,  we accept that system as a trade off for finally getting to see the doctor. But should we accept a system like this, just because of the number of people using it?

Wherever we go to spend our money, we would not accept busy as an excuse. If someone left you alone in a shop for ages when you wanted to buy something, you would leave. Most problems can be solved by a robust and well managed system. Central booking etc I understand, but it is the patient facing area of the operation I am questioning.

The prompt for this post was within the space of two weeks, I experienced the best and worst of hospital appointments. Firstly, I waited in excess of an hour and a half  of my appointment time in a clinic, which was badly understaffed, the clinic was uncomfortably full, and communication was poor. Despite the obvious issues, patients were coming into the clinic, and not being told there was a delay. To make matters worse it was quite obvious that the consultant didn't see it as part of his job to let the receptionist know that his clinic was running late. I actually left and never got to see the doctor as I ran out of patience!

I then had to take my wife to the eye clinic at Croydon University Hospital on a Friday afternoon. In honesty I was prepared for the worst, and when we arrived the clinic was full. 'Deja vu' I thought! But quickly, the system started to roll, with first eye drops, then a few minutes later a scan. As we sat and waited, the senior consultant made an announcement to the clinic, that a member of her team was unavailable and there would be a delay. Fair enough I thought, at least we know! I was also impressed that the consultant herself had done that.I would also like to add that on the appointment letter there is a note informing you that you might be there for up to two hours.

Once we had been seen it was discovered that my wife had a cataract that needed to be removed, and they would send an appointment in the post. They have done, and she is having that op next week! Thank you to that team, for a great example of the N.H.S.

As shown above, every patient is unique, with very different issues and circumstances, and I feel that there should be more understanding of this, in the clinical environment.It is possible, as my recent example indicates, but we will need to focus on the individual, not purely numbers and targets.