Sunday, 9 March 2014

An emotional time!

If I'm honest, I can't believe this time has come. When this blog was started, two years ago, I had never written anything since I was at school. People were asking me about my experiences but I had no idea, how to use social media etc. 

The rest as they say is history. This platform has been brilliant for me and the readers. I wanted to keep things simple, and it is all about the content. I have kept things as basic, and as user friendly as I possibly could. But times change, and I now require my own website, to expand my work, and bring things up to date. 

For me it is all about content, which will always be the case, but I have tried to create a more modern look and feel about the site. 
Those of you that follow the blog will have to re enter your email address into the new website to ensure that you get the new posts in the same way you currently receive them. I do apologise but there was no shortcut to that process!

I would like to take this opportunity of thanking you all for your continued support , and I hope that you continue to enjoy my work on  where you will find this weeks new post. ' Raising awareness, new boundaries?'  Plus the entire archives of this blog! 

With grateful thanks, Chris 

Sunday, 2 March 2014

Caring for the carer

This week I am delighted to have the opportunity to write a piece about carers. Firstly I would like to say that this is not a word that I like personally, although I have thought long and hard over many years, to find one better! When I was younger I always visualised a carer being someone who would look after me in my old age. I certainly never imagined I would need one at the age of 51. Neither did I think that person would be my wife.

There are many people who are carers, and wouldn't recognise themselves as such. Without these wonderful people, our society would be a very different place. This is before you include the professional carers, that help our sick and vulnerable people. 

Without these people, many would have a much poorer quality of life.In my own example, if my wife didn't do so many things for me, I would not be able to continue with my support work. I often think, wherever we go, that I, as the patient, get all the attention.My medical team, look after me, as a VIP, and socially our friends always ask how I am, but my wife is rarely considered. In many respects taken for granted.

Most people looking after friends and loved ones do that willingly, selflessly, and with very little thought for themselves. Their roles can be short term or last for a lifetime. They just do what is necessary. Certainly they do not look for any recognition. My worry with this though has always been, that if they don't recognise themselves as carers, they may not realise that they also need help. 

This week I am honoured to include this guest post from Jayne Cox,who amongst her many roles, delivers workshops to both carers and patients at her local hospice. 

Caring for the Carer

As a carer you have a vital role in someone’s life. It can be an ever-changing role and may be driven by your love but also requires your dedication and strength to carry on with what can feel like a difficult full time job.  Your place in someone’s life can feel as if it’s changed and your relationship quite different now that you not only love but also provide care on so many levels.

So how do you remain positive and find inner resilience as a carer? Let me share some practical ideas with you.

1. ‘It’s really not fair’ and it’s ok to feel this and to say it out loud. Allowing your natural feelings to be shared is a step in the right direction. When you’ve acknowledged how you feel it allows you to move forward.

2. Think about who you have in your life. Who will allow you to speak and will really listen to you? This may be people you know well OR people that are almost strangers.

3. Some people benefit from meeting with other carers. This can help with the feelings of being isolated and alone. Ask about local groups.

4. Most of us can find resilience in the most difficult of times and it’s good to develop this habit.  You can accept that life is changing and learn to adapt. It’s good to discover the things that you do have control of in your life.  Notice ways to feel more of a survivor than a victim of a situation. Learn to problem solve and ask for help.

5. Look for ways you can have some normality in your life. For example, socialising, work, hobbies, self care.

6. Are your spiritual needs met? It can help to explore what spirituality means to you. More here

7. Take walks outside and enjoy open spaces and fresh air.

8. Notice good things that happen in a day with your loved one. Write it down and recall the moments.

9. What are you grateful for? This is a lovely way to end the day and again writing it down has more of a positive impact.

10. Allow your natural thoughts to be noticed and see if you can give some distance to any difficult thoughts. Imagine balloons containing your thoughts, which will you hold onto and which ones can you allow to float away. Mindfulness and meditation are good practices and there are apps for your phone that mean you have them close at hand.

11. Find some balance. This can be keeping busy and productive balanced with rest and relaxation.

12. Practice rational optimism. This is accepting of reality, having hope and seeing that life is for living.

13. Make time to be together and focus on what you can do.

14. It’s ok to want your own space. It’s natural to sometimes need silence and quiet. Notice if this becomes unhealthy and you withdraw and reach out for support.

15. There are 2 special P’s that can really help us feel much brighter. Pets and People. Stroking a pet or spending time with animals can change how we view things and relieve stress The right people, supportive and positive listeners, are a great asset too,

16. Remember caring for you allows you to care for another.

Caring isn’t easy and it’s not possible to be positive every minute of every day. It’s often about drawing a line under the bad day and remembering the sun will come out again.

Recommended support:

Carers app called Jointly

10 steps to more resilience

Exploring Spirituality

Carers support

It has been a great pleasure to share this piece, and if you would like to contact Jayne and find out more about her work, you can connect here

Sunday, 23 February 2014

Sharing a cancer experience

Having been unwell for most of December, and early January, I made a deliberate plan to not chase any more commitments for the new year. I had cleared my diary, and had completed my work. Although I had few speaking engagements on the horizon, my blogging and social media work, quite quickly fill up the gaps in between my treatment sessions, so there is always plenty to do. I wanted to give myself some time to think about the coming year.

However, my speaking engagements are really what helps my work come alive, and makes my blogging etc feel real. It is an opportunity to hear other peoples experiences, who, through me sharing my story, have felt able to talk about their own. I have been doing presentations for many years now, and the beauty for me is that each one is unique. I talk to health professionals, and patients young and old, also at fund raising and business functions. From every presentation I give, I learn something new.

This week I had the pleasure of sharing my experience, with a large group of interns, coming to work for a UK cancer charity.For many of them, it was their first ever in depth look at the effects of cancer on someones life. Although, it is never safe to assume that even with a young audience, there is no one who has a personal or family experience. That has happened to me several times.

After this particular presentation I had time to think about things, as I went straight to a session of treatment.The audience was very receptive and enthusiastic, and many spoke on Twitter about how they had learnt a lot from it, which is great.However my thoughts turned to the frequency with which I share experience and information about cancer.I now speak or write about it, daily. Not only that, I am in a cancer environment for 5 days every month, having treatment, during which time I am talking to both professionals and patients.

I am aware that I have become 'comfortable' talking about almost any aspect of the disease. However, what struck me this time, was that people may not be so comfortable listening to certain things. What has become 'normal' for me, is far from normal for most people. Obviously, if you attend a presentation where someone is talking about cancer, to a degree you know what you are going to get. Also, if you don't like the content, you won't read a blog. But I was thinking also about my social life.

Maybe people don't want to know some of the content, that I tell them? Most will not be used to hearing some of the detail. My natural way of communicating is to tell people the facts. My thinking behind that was to help people understand what was happening.

Sharing something like a cancer experience, is a very personal thing. Some people don't do it at all, not even with their partners! Others keep things within the 'friend and family network.' Some like me share most things, and more. I happen to feel that talking about these things publicly, will help raise awareness of the issues, and improve things for the next generation, but not everyone would agree. 

Blogging has become one of the most popular ways of sharing experience. Even in the two years I have been writing I have noticed, a vast difference in the quantity, and detail of what people share. It has become much more acceptable to share very intimate details of treatment and emotions. But of course, in this instance you have a choice, whether you follow a particular blogger or not, if you like that open style of communication. 

Face to face work is very different. But in many respects I find it easier. I can generally feel a mood in a room, and by looking at peoples body language as I speak, I am able to tailor the talk to suit, the audience. But one of the biggest hurdles to overcome in a group situation is that many people are still uncomfortable talking in public. Always when a talk gets opened up to questions there is normally a slight hesitancy from the audience.Afterwards though, many people want to talk!

The beauty of the platforms available on social media,is that people can take as much or as little as they require.They can stay anonymous if preferred, or go public if comfortable. They don't have to enter a situation where they feel uncomfortable. It is important, psychologically, to share things, even if it is only with people on the Internet. We never stop learning, and for me, hearing other peoples stories, really helps me to make sense of my own. If I can do the same for others, I will be a happy man! 

Do you find it easy to share your experience? Is it of benefit to hear from others about theirs? How important is the internet, in how you give and receive support? 

You can now join us on FACEBOOK  too! 

Sunday, 16 February 2014

The power of nature!

In the last couple of months the weather has been absolutely crazy in the UK. I don't think I can remember such a prolonged spell of wind and rain, in my life time. I have seen pictures of flooding and damage, that I could never imagine I would ever see, and in recent days, we have been hoping that our house withstands the constant battering we have received from the wind. So many peoples lives are being scarred by these events.

I have heard talk about long term plans, and Governments not spending money, so many different reasons for why we cannot cope with these circumstances. I'm sure you will all have your own ideas. Building on flood plains, dredging rivers, flood defences, the list goes on. I seem to recall we all had different answers when a few years ago, we were affected by blizzards. Not enough salt, services not reacting quickly, no snow ploughs, not enough investment. It seems we can always blame the Government!

However, I ask myself, does man always have the answer to what nature delivers? Sure, we can solve many problems nowadays with our extended knowledge, and technology, but it does seem that if nature really wants to do something, there is very little that man can do about it. Much as we have known for sometime what our weather will do, there is very little we can do to prevent the devastation that will occur.

Like a lot of people recently, I have stood by helplessly, watching the havoc taking place, and apart from a few obvious precautions I could take, there was little I could have done, if my own house had become directly involved in the crisis too. That feeling of helplessness is frightening. It feels like 'control' has been taken from you. It also makes you realise how insignificant we can feel.

During my illness I have experienced, many similar emotions to the ones I have recently.Despite very comforting words from Health Professionals, no one really knows how the disease will behave. We certainly have statistics, to act as a guide, but that is all it really is. Every case is unique, and we all react differently to things. 

There are times when you just have to have faith. Not necessarily religious, but many people do. Confidence, in your medical team, and the treatment they are giving you, and a belief that the best outcome will be achieved. But no matter how many new ways we find to treat cancer, it is a powerful adversary, and we can rarely be entirely confident that we have controlled things for long. 

Nature is not only a powerful enemy but at times a powerful friend. Helping you recover, from illness and giving you strength when you thought there was none. It also seems to have a unique way of teaching us lessons. I am currently writing this piece, in glorious sunshine, but reflecting on the things I have learnt in the last few months.

In the cancer world, we have an incredible amount of man power, and financial resource, going in to deal with it, yet it continues to leave it's trail of devastation. Of course, we have to continue to believe we can find a cure, and treatments that will behave kinder on patients. This is always how man works. We try our hardest to achieve what seems impossible at times. I guess if you don't head for the stars you will never climb a hill. In my own relatively short lifetime I have seen so many things happen, that I would never have thought possible. A testimony to man's persistence!

However, I have come to the conclusion that despite all the meddling by mankind, nature will do what it wants, and we will have very little say in matters. We will always believe we are influencing certain things but I feel that is only a perception, and a far cry from reality. 

I hope that you haven't been affected too badly, by this crazy weather pattern, which has affected many countries across the world. Please feel free to let me know your opinion of our relationship with nature. 

It would be great to connect with you on  Facebook too!


Sunday, 9 February 2014

Blood cancer and stem cell transplants

Although I had decided this weeks blog subject, very early on, I am always open to flexibility, if  something important comes up. It did, but ironically it included the subject I had decided to write about! Via Twitter, I received a link, to another blog, written by an incredible young lady, who had experienced personally some things, which confirmed the subject matter of today's post. 

This week I wanted to focus on how lives can be affected as much by the treatment they receive, as the cancer itself. I have spent the last 4 years, having treatment for the side effects of the original treatment I had, to keep my cancer at bay. During this time I have met, and continue to meet, people affected similarly to me. My body, frequently wants to reject, the stem cells, that have been given to protect me, causing many different issues at any time. There is rarely a warning, when this might happen.(Graft versus host disease,)

Recently I have met several people, who through treatment, are unable to do their work. Careers, which they have trained for when they were young, and spent their lives developing their skills, enabling them to provide for their families.I have met a builder, who is now so weak, he can't even pick up a hammer, and a writer who has the disease around his eyes. He can't see without the continual use of eye drops. Both these guys, like me, are into their 50s now, with no end to the treatment in sight. They want to provide for their family, and do the normal husband/father things.

Below is an excerpt from this wonderful blog by Kathryn, and describes how GvHD has affected her

In August 2007, when I was sixteen years old, I was diagnosed with Acute Myeloid Leukaemia M7 with monosomy-7. I started chemotherapy on GCSE results day. I had one course of one regime, then a course of a harsher one, then in December 2007 I had some pre-conditioning chemotherapy and on the 19th, I had a stem cell transplant from my big sister. I recovered fantastically well and went home on New Year’s Day, celebrating just how easy this cancer business had all been.

In April 2008, I noticed some lumps in my face. I had one biopsied, and it turned out to be a malignant tumour. A bone marrow aspirate and trephine confirmed that my marrow was indeed full of leukaemia again and I was given a 1 in 5 chance of survival. My only option was another stem cell transplant from an unrelated donor – using my sister wasn’t an option this time as she had been too good a match, so I got no Graft vs. Host Disease which would have caused Graft vs. Leukaemia and killed any cells that were lurking. This time, I had much more toxic chemotherapy, plus a week of radiotherapy, and on July 31st 2008, I had my second stem cell transplant from a young German fellow. I got GvHD in my skin and we were delighted. Until it got worse and it became incredibly itchy and painful. I also got it in my gut, but it was all treated with IV steroids and after about six weeks, I went home.

I was doing very well, until September 2008 when I got GvHD in my eyes, which meant I lived in the dark for a month and in tremendous pain, until I had eye drops made from my own stem cells from my blood, and they cleared it right up. (Incidentally, this is no longer given automatically and you have to apply for funding to get them, leaving people to develop scarring on their eyelids while they wait. Well done, government.) Then on October 31st 2008, I spiked a temperature, we went to A&E, and I didn’t get discharged until June 11th 2009. I had GvHD of the gut pretty badly, and of the liver in the worst way. In the fatal way. I was unable to eat because my stomach had no enzymes to digest anything, and I was turning more yellow-green by the day. 

At the beginning of December, my bile ducts had shrivelled away to nothing, I was being poisoned via my own bloodstream, and I was put on the list for a new liver. I got it on the 21st. The doctors had told my parents it was unlikely I would see Christmas. The liver came from an O-neg donor, and I was A-pos. This is not routine; O-neg can only receive from O-neg, so they only give them to other people when they’re nearly dead. At this point, the haematology doctors were still looking after me too, and the discovery was made that I’d had a third stem cell transplant by accident. The stem cells from the liver had gone to my bone marrow, kicked out the German, and completely changed my DNA. I’m the only person in the world all this has ever happened to.

Being in contact with Kathryn this week has given me the opportunity to talk about some of the issues involving blood cancers and stem cell transplants. Like most things involving cancer, the results are unique to each person, and we rarely know what to expect. Of course we are all grateful for the extended life we may receive, but that can be very far from the end of the story! 

For more information about Graft versus host disease click here

My grateful thanks to Kathryn, for allowing me to share her work. If you would like to read more please click here

You can also join us on Facebook


Sunday, 2 February 2014

Dealing with a cancer diagnosis

Last week I wrote about my experience of talking to two people who were newly diagnosed. How I felt that even after so many years, there just was not enough support for people facing cancer treatment. Despite our many years of experience, generally, people are still left to face a traumatic time on their own.What really shocks me about that, is when I use my own personal experience as an example.

My diagnosis involved stage 4 incurable cancer. No one knew if I would live or die. Everything I was facing was a totally new experience, and despite the fact I was 51, it was really frightening! That was only the treatment etc, not even including losing my job, income and all the things associated with that. I was introduced to a specialist nurse, who was lovely, but told me so many times how many patients she looked after, so I gave up even trying to talk to her. I decided, that like most things in my life, the only person who could sort things out was me. 

But I was equipped for this sort of challenge, in a strange sort of way. I have always worked for myself, and have rarely had to rely on other people, so another system that was inadequate was not unusual. However for others, who might expect and require more support than me, I'm sure the entire experience comes as a complete shock. What makes things worse, as far as I am concerned is that my own issues started seven years ago, and in honesty, although, medically many things are improving rapidly, the basics of support are not! 

As I also say frequently, my opinions are based on not only my personal experiences, but also many other people who I am in contact with, either personally or via social media. This week I am highlighting another example of how people can react to a cancer diagnosis. Emily is an incredible young lady who was diagnosed in November 2013 with endometrial (uterine) cancer and colon cancer. 

"Tonight, I broke down. I don’t know what exactly sparked it, but tonight everything just hit me like a ton of bricks. It finally settled in my mind. I have cancer. I am going to have to endure probably the most grueling year of my life, and then who knows what I’ll be like when it’s all over? Will be I able to go back to the same line of work that I intended? I know my job won’t be there when I get back. I had just started. It’s not one of those jobs with real job security anyways. They’re not obligated to save a spot for me until I get back like at some other jobs. I’m not on that level yet. 

When all this is over, what will I be left with? A few less body parts than I started with, the inability to have kids, but hopefully my life. I probably won’t be able to see a lot of my friends for a while. I won’t be able to be as independent as I want to be. I don’t know what freaked me out so much in particular, but I had one of those deep sobs. It hurt — seeing as I just had surgery last week — but it also hurt because I felt like I was in some kind of box that no one around me could get into. Like no one could quite understand exactly what I was crying about. Heck, neither could I. But tonight, I don’t feel strong. Tonight, I feel sick. Tonight, I feel weak. Tonight, I feel scared."

This young lady has the world in front of her, but is now facing her biggest challenge. What can equip her for the experiences that may lie ahead? Being younger, Emily faces many unique challenges, associated with her age, which us older people don't. She will require very specialist, age appropriate support.

The fear which Emily describes graphically above, is just another example of how a lot of people are feeling when faced with a cancer diagnosis. I wanted to share it, as much for people who have been lucky enough not to be in that position, as I feel it sums things up brilliantly.There is support out there, but it is very hard to find. I also appreciate the issues involved, as every experience is unique, and a generic approach is no longer appropriate. But in many cases, the psychological and emotional fallout from cancer, can have a more negative effect than the cancer itself. 

My personal view is that a much earlier support intervention, where required, will improve things for people. I'm sure that is not the complete answer, but I do know that we cannot let things continue as they are. Unfortunately there will be very many more people entering the process, and they will need some help. 

What was your experience, on diagnosis? How were you feeling, and what help did you find? Please feel free to share your experience with the readers. You can also join us on Facebook here

If you would like to read more about Emily, you will find her blog here

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 :) 

Vote for Chris’s Cancer Community in the UK Blog Awards

You can also follow our community on FACEBOOK 

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. 

Vote for Chris’s Cancer Community in the UK Blog Awards

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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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