Sunday, 26 January 2014

We have the tools and things must improve!

This week has been treatment week, so Monday and Tuesday are filled up, but I always try and make the most of my time, and am generally communicating via Twitter or talking to staff and patients. I have a continual thirst for information.I managed to talk to a good number of patients, and also a couple of very senior Health Professionals.

As you know, my 'crusade' is to improve support for people affected by cancer. Obviously, I make my own observations of things, during my endless visits to hospitals, but I am intrigued to see how other people view their situation. Do patients feel that things could be improved or are they content with what is being done? I also wonder if Health Professionals feel that more should be done, or they believe that the right quality and quantity of support is available.

I was lucky enough to talk to two inexperienced patients this week, in very different settings. Both had diseases and treatment plans similar to my own.I don't know why, but I am always shocked at still, how little support people receive, outside their family and friends.It seems they have had a couple of brief chats, been given some information booklets, and then put into the system.Of course, although advised not to, most people take to the Internet to find out more,and that's where the troubles begin.

Information, is only part of the story of support.We also need help once we have the information. It really feels like it is assumed the job is done, when you have been handed some books about your disease and treatment. Sure, we have come a long way, as even only ten years ago we were struggling to find any good information.But now we are swimming in it. Booklets, constantly updated and minute by minute news on the Internet.However, we need to progress from here! 

Much more practical support is required.We actually need to invest more time in each patient, to help them through their psychological and emotional issues.To understand them as a unique person, not just a case file. We have to prepare people as best we can, for their treatment, and offer support as they continue on their path. In this day and age it is not right that we still see so many frightened people, starting treatment, because we most definitely can do more. 

Not only on the treatment path is this true, but it gains momentum, once you leave the perceived safety of your hospital. In most cases, once the clinicians have done their work, you are let loose, to make the best of things, in what is very definitely a new world for you.Now with different information in your hand, you try and put your life back together.

The people I have talked to this week, describe, their views, of disjointed services, and poor communication. Almost finding people, by trial and error, meaning some maybe lucky, and others not so. Is it any wonder that people will then keep returning to the hospital, many with issues that could quite clearly be sorted at home or in a community setting. No one wants to be dependent on the system, but currently it is not helping us be independent.

As a business guy I understand the many issues involved here. Primarily of course finance. However sometimes with a different way of looking at things, there are ways of solving problems without spending stupendous amounts of money.

More people are being diagnosed, with cancer, and with advances in treatment, are living longer with the effects of it.There are many people like me, out there who would happily share experience, for the benefit of others, at whatever stage it was required. We are already doing 'buddying,' etc, but not really to the level required, and there are many different ways that experience can be harnessed, particularly with the use of social media.

The N.H.S do their thing, and charities do theirs. Sometimes they collaborate, sometimes they don't. Pilot schemes come and go, support groups open and close. Who takes responsibility here? Sometimes there can be so many organisations involved in your care, you get frustrated, as no one appears to take charge of your case. All designed to help you, but rarely coordinated, and more a scatter gun approach. 

I am certain, that if more of the right support was given, there would be less of a burden on the system in the long term. But more importantly, more people would have a greater feeling of worth about their life. It is a wonderful thing to be given extended life, of course, but sometimes it can be very difficult making a new life, whilst trying to deal with health issues from the old one.

These are thoughts I have gathered, over the last few weeks, through my personal experience. What are your views? Perhaps you have a positive story of support you could share? I look forward to hearing from you. 

You can also see more of my work on my new FACEBOOK page. Many thanks for your support.

Sunday, 19 January 2014

The stigma of a changing appearance.

As I have mentioned, several times in the past, I never have to think too hard about  blog content for the week, and very often one subject gets talked about more frequently than others. In this instance the subject is 'appearance during cancer treatment.'

On my return to treatment in the new year, I met a fellow patient who I hadn't seen for some time, and I struggled to recognise her. I was truly stunned how her appearance had changed in such a short space of time.Very little is able to surprise me, in terms of the affects of cancer and it's treatment, on people, but this time I was. I knew that I had been through everything that she was going through, and all the changes in my appearance. But why was I shocked?

This made me think about how people who were much less experienced than me, might react when faced with one one of their friends who was going through treatment.My family and friends have been through this, and at times still see changes in me depending on my treatment, but I have never noticed any visible signs of shock. Now I fully understand what they must be feeling.I am always aware that with cancer as my constant companion, I am much more accepting of things, than people who have very little experience. Sometimes I forget that. Things that are normal for me in my work, are not normal for most people, so of course their reaction will be a lot different to mine.

I have been contacted by several people this week, who wanted to talk about issues surrounding their appearance. One lady in particular was disturbed about her hair loss. Hats, scarves and wigs, just couldn't resolve how she felt about losing her hair. To make matters worse, someone challenged her when entering a female only area, as from behind they thought she was a man! Just imagine that scenario happening to you.

Personally I have always been a confident guy, and when I lost my hair to chemo, I started telling jokes about it. But it can  have the opposite affect on people too. I also realised that other changes were part of my regime, and I accepted them, not willingly though! However the world can be a very unforgiving place, if you are sensitive to the enforced changes that your body goes through. 

But, like most things in life, it is not all about you! It is important also to consider how other people might feel when they see you. Will you feel comfortable if you know they feel awkward looking at your scars etc? My personal example of this was a great friend of mine who had a very serious operation to remove a tumour from his head. After surgery he had a large scar and his head was shaved. I told him that it was very impressive, and I would be proud to show it off! His opinion was that he didn't want other people to feel uncomfortable, so he always wore a hat. 

The importance of your appearance during treatment can not be underestimated, as our bodies may undergo some incredible changes. In many instances this affects our psychological well being, which of course is linked to our physical issues.Things have improved, even in my few years, of experience, and we are now understanding the 'holistic' approach to treatment. But there are two factors that are difficult to control. Firstly, how we see ourselves, and secondly, how others see us. Generally those views are very different!

It seems that these days, particularly in the media, appearance is very important. Actors etc are having age defying treatments, and we seem to judge people based on quite unreal standards. If I am honest, I think I lost a lot of confidence when my appearance changed, even though I tried not to show it.I know that this issue can appear much worse for women. 

 What is your opinion? How do you feel when you see someone who is going through some tough treatment? Do you feel awkward? Do they? How do you deal with those issues?

This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my work I would be very grateful, if you could click the attached link and vote for it. We are in the last week of voting now, and every vote counts! Tu :) 

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Saturday, 11 January 2014

A life after surgery (Breast Cancer)

We are certainly well and truly back into the work routine, after a couple of weeks off! Communication is starting to get back to its normal level, and as usual, the 'cancer world' is moving quickly. I had planned a quiet start to the year, but early treatment, and a few interesting emails,have woken me quickly from my slumbers. 

However, the most important thing this week, was a communication I had with someone regarding issues of appearance, during cancer treatment. A subject that I feel very passionately about, as I am aware of the importance of it, psychologically, in the treatment pathway. It is a subject I will cover in greater depth in my next blog.

The below poem was written by a wonderful friend of mine. Here she talks candidly about her feelings of life after surgery. I would normally write more but I was so moved by this piece of work, it will talk for itself!

"Cancer's not a journey, it's a slog,
The media says fight to be "top dog";
I’m being me, my mutilation's fine,
I just can't be a health freak all the time!!!
Whilst I look slightly changed, I'll jolly on,
So why are you embarrassed -that's just wrong?
Your fearing re occurrence cramps my style,
Could fashion be one boob, once in a while?
The sorrow gets me down because you see,
I'm actually rather proud of being me.

I've realized my body's an illusion,
You'll grow old too, and cells are a confusion...
There's definitely beauty still within,
But wanting it outside too, that’s my sin!
I'm not the same, but can I still be normal?
I want some frills, not function or formal,
I’ve conquered getting out, I would like swimming,
But plunging necklines limit somewhat gym’ing!

I've lots of skills I'll add to my CV,
Unusual, I'm sure you would agree?
I'm capable of waiting, sometimes hours,
And when you think it's pouring, I see showers…
If bald I’ll cheerfully acquire a hat,
There’s nothing I can’t face if I do that?
No confidence, no memory, mind a fuzz,
Yet just a lack of nausea is a buzz!

One day they'll say the chemo was all crazy,
It hurts your heart and makes your thinking hazy!
The scars from radio', the skin they burned,
The chunks of me where feeling's not returned...
I’m hoping history will hold us a place,
We've taken what they threw for human case.
I think our future’s in our genes you know,
And maybe soon the surgery will go.
I like to think that we’ll have paved the way,
For better treatment, for a future day,
But meantime I’d like underwear with style,
The post op’ lingerie is really vile!

Don't get me wrong, I’m fine, I know you care,
I know the bad times hurt and you were there;
And seeing as I managed to survive,
Can I be honest whilst I’m still alive?
Let cancer open up, not shut the door,

I want to say I’m better than before..."

I feel very privileged to be given the above piece to share with you! It is one person's feelings, and we will all have our own.Please feel free to share yours below. 

This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my work I would be very grateful, if you could click the attached link and vote for it. 

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Sunday, 5 January 2014

A new year must always bring hope!

Well it has finally arrived, 2014. We seem to have been thinking about it for a long time,in a similar way to talking about Christmas from September onwards! Traditionally we give these events a massive build up, and I personally wonder, if once the days have arrived, we are quite glad, to get back to our normal lives, as we are fed up with hearing about them. This year in the UK, almost for the entire break, the weather has been atrocious, with constant wind and rain, bringing chaos to many people. This is still continuing into 2014. I also understand that the weather is poor in many parts of America.

Unfortunately, I was not well enough to go out on New Year's Eve, as I traditionally would have done. We have celebrated in many different ways over the years, from small gatherings to massive parties, however I don't know whether it is my health or my age, or maybe a combination of both, but I now prefer a quiet one at home. 

For most of us, I guess the New Year brings a logical place on our life's time line to review our past year, and start planning the next one. Since my illness, I have found planning very difficult, but I do think about the direction I want my life to take, even if I can't control the speed it goes at!
I have done a bit of 'spring cleaning,' removing certain things that I was involved with where I was gaining no satisfaction, to free up time for new projects.

Most people I have spoken to in recent weeks, seem to be very keen to see the back of 2013, and accelerate into 2014. "That was a bad year for me, so I am pleased to see the New one." It feels like they believe a change in date will bring an immediate upturn in their fortunes. 

This made me think about how last year was for me.To be honest, it was pretty average by my standards. My health was up and down and unpredictable. I had some really good times, with some of the projects I am involved in, but was also pleased to see the back of others. Friends died, and babies were born, we had weddings and parties to attend. To sum it up, there were highs and lows, but since my illness, pretty much an average year. 

Which made me wonder, how other peoples lives compare to that? If you had to summarise, your year, would you say it was average? As I watched people going wild around the world, I couldn't imagine they were thinking that they were going to have an average year.They had hope, that next year would indeed be so much better than this one.Actually, I always have that too. There is a lot of potentially exciting stuff lined up for me in the New Year, but I talk and think with caution now. Maybe that is experience? 

Hope is an emotion I have always had, even when I was given my original prognosis.It is actually what keeps me going. It ensures that I think positively, because I do believe that amongst the bad stuff in our lives, there will be some really good things. Sure, if I want to, I can recall vividly all my health problems, but I try to keep them to the back of my mind as best I can. My issues will never actually go away it seems, but I have to believe they will.

Without hope, we really would have nothing. The small team has to believe they can beat the big one. In our personal lives we must feel that we can progress, and that even the very pinnacle of our careers is achievable, even if we may not want to get there. For me President Obama is the perfect example of what can happen when you have hope.

So, are we all riding into the 2014 on a new wave of enthusiasm, after celebrating the exit of 2013? I imagine not! Some of us are going straight back to our routine treatment, as if nothing has happened. A couple of my friends are awaiting news on test results done in the holidays.I just don't know what is going through their minds right now. People up and down the country, are trying to keep their businesses and properties safe from the terrible weather. But we know that eventually things will get better, we have hope and resilience.

My simple thought, which I say every New Year's Eve is "I just hope next year is better than this one." Are you  hoping for something special from 2014? What would you like it to bring? Maybe you love all the celebrating and have a different view to mine. I would love to hear from you! 

This blog has been entered into The UK Blog Awards 2014 #ukba14 If you are enjoying my work I would be very grateful, if you could click the attached link and vote for it. 

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