Friday, 30 November 2012

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.

Friday, 23 November 2012

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

Thursday, 15 November 2012

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!

Thursday, 8 November 2012

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?

Thursday, 1 November 2012

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?