Fatigue can be hard work!

Just as I suspected last week, I find myself writing a new post, on a Saturday, ironically also the hottest day of the year so far in the UK. The reason for this is that I have had either medical or working appointments that have completely filled up the last two weeks. All of the good stuff were 'one off' opportunities, that wouldn't come again, so I decided to commit to them. Luckily, my health held up and I managed to do some very interesting and fulfilling things.

In many ways, it has felt like the 'old days' (before cancer.) My life was never boring, different people and places everyday. There was always a new challenge to look forward to. The major difference now, is that I have to make allowances for my health. Something I never even thought about before becoming ill.

Due to my illness, life planning has become tricky, but with the exception of something unexpected turning up, I am able to organise things. I am now aware of what I can and can't do, and how long I can do it for. I know when I need to rest, to make the most of my time. My life is a continual balance of both drugs and time. If something happens to upset the equilibrium, I have to be careful.

 

One thing that is a major issue for a lot of people with long term health conditions is fatigue. It is very difficult to find the cause of it. Is it because of chemotherapy, radiotherapy, a long term regime of drugs, the psychological/emotional side effects of your situation, or a combination of all? Who really knows, but the effects can be very debilitating.

Fatigue, affects us both physically and mentally. Sometimes the physical effects are obvious in our appearance, but often they are not. Some of us are lucky enough to avoid the dark circles/ bags under the eyes, the 'lived in' look on our faces, the wrinkles that start appearing. I guess, I could put all those things under the premature ageing process. If people see clues of fatigue, they might have a slight understanding of what is happening for you.

However the issue is if you are looking reasonably well! When people see you looking ok, they seem to think that you have somehow got better. From discussion with many of my fellow patients, they find it tough, in a social environment. Not because they don't enjoy socialising, but because it uses up a lot of energy.

Each of us has a public and private persona. When we are in public, people expect us to be, the person that they perceive us to be. If at times we are feeling unwell, people really don't want to hear that, so you expend a lot of energy trying to be as natural as you can. They expect you to join in with all the social chit chat, which on a lot of occasions is tough. Being unusually quiet and withdrawn, seems to encourage more people to start asking questions, and the process continues.

The alternative to this scenario, is to not accept invitations to do things. This in my opinion will only make things worse in the longer term, as you may become more withdrawn. I find it particularly difficult to strike a balance, as previously, I was a 'social animal.' There was nothing I used to enjoy more, than being in the company of different people in different environments. Now, I have to think about an invitation. How long is it for, what will I be doing, what time will it finish?

Unless you have experienced fatigue, it is very difficult to understand it's destructive effects. It is much more than tiredness! Some is caused by physical issues, IE blood problems, or treatment issues, but another major cause is mental. If your brain is like a fog, it can be very difficult to function properly. Even thinking straight can be exhausting.

 

Just 'being you,' can be more difficult than you might imagine. There are days, when you just don't feel able, to put on the 'public mask.' Here I see another benefit of social media. You can still be in contact with people, without the effort that face to face contact can become. Please don't think that I am suggesting that it is a substitute. In fact far from it, more complementing our lives. The importance of communication, and sharing experiences, cannot be underestimated, in whatever way we can manage it. 

In my own life, it is the many invitations which I receive, that motivate me, and get me out of bed in the morning. Although at times it is difficult. I could easily find all sorts of good reasons, why I shouldn't, but my family and friends gently coax me through. They understand the 'new me,' and don't get upset that I might want to leave early, just happy that I went in the first place!

I am lucky, being surrounded by very supportive people in all areas of my life, who now understand the issues of fatigue. But it has taken us all a long time to get to this position. I couldn't imagine life with out my 'team.' This often makes me think of people trying to deal with these sort of issues, without that kind of support. You can't just take a tablet, and they will be gone. It can be as destructive to your life as the disease itself.

These kind of issues seem to fall into a 'grey area.' They can effect everyone differently, therefore there is not a simple way of dealing with them. The concentration  is rightly on the disease, but the side effects seem to be forgotten at times. 

If you know someone affected by cancer, it might be difficult to understand, but at times, it can be tough for them, just to be the person you think they are.

Supporting people affected by cancer

Normally, I like to have my new blog post written and launched by Friday each week, but since the increase in my treatment regime, and prior engagements made long ago, this week and next are particularly difficult and will find me writing at the w/end. However, another reason for my time issue, is that I have had contact from 3 people, who I have encountered in very different situations, and have asked for various forms of support with their issues.

This prompted my thoughts for this post. All of these people are unfortunately, 'experienced patients,' with family, friends, and medical teams around them. However they have chosen to contact me, regarding their issues. I wrote last year that it was 'time to look at the ways we offer support' but I also wonder if some of the support we need as patients, is just not there at all? Maybe we don't even know what we need?

Giving and receiving support is extremely difficult in a lot of cases, particularly when something like cancer is involved. There is no rule book, to guide either party. You as the patient, don't really know what you need until it becomes apparent, and your loved ones/friends can't understand what you are going through. Also if you are anything like me, you hate asking anyone for anything!

Experience has shown us that most people don't feel comfortable discussing certain concerns with either their clinicians or loved ones, for a fear of 'burdening' them. It is also extremely difficult to have to admit to people you know well, that you are finding things tough. Particularly if you are the person that people normally look to when times get difficult for them!

I have met a lot of people affected by cancers similar to mine, and many that have gone through a stem-cell transplant, like mine. However I can say that without question, everyone's situation has been unique. Personal circumstances, treatment regimes, health prior to diagnosis, complications after treatment, and the psychological effects on them from the whole process.

The word support means different things to us all, and we can offer it in different ways. One increasingly common method now, is by giving information. Surveys have shown that informed patients are more likely to take control of their care pathway, which will result in improved outcomes. This is great, but speaking personally I do not feel supported at all, by a handful of booklets! This is only a small part of the story. Knowing what may happen to you, and what the treatment is likely to do, is helpful, but also frightening. What do you now do with that information?

As my life has taken me in this direction I spend a lot of time in the company of people affected by cancer. Not only patients, but professionals, family, friends, and organisations working to improve things. I also have a lot of communication with people who contact me via social media. I am still shocked, how many people cannot find the support that they are seeking.

Why is this? Possibly, because what we require, can change from day to day. As our world goes through the 'high-low' process, our needs are constantly changing. Many things that occur for us, are outside our personal experience boundaries, and we have no 'back catalogue' to drawer on.

It seems that my personal experience, is the major qualification, in the support process. One of the reason's that I started doing the work that I do, is that I 'get it!' Much as people tell me about different schemes and projects that are starting, or already exist, there is no credible 'official' system that caters for what is required.

 

Maybe, a chance conversation, or a blog post stimulating your thought process, may prompt
the support you have been looking for. Social media has opened up the support arena greatly, and there are millions of us sharing our experiences with the world. I know I have received huge help from this area.

In summary, I'm very happy to be able to help where I can, and feel privileged to be invited into very personal areas of peoples lives. Unfortunately, I am unable to offer a solution to the professionals who ask, how can we improve things for you guys? I am not convinced that there is anything 'official' that can. Cancer will always create different 'grey areas' for all of us. Definitely a place where 'one size does not fit all!'

Do you feel that you are able to access the support you feel you need?

The reality of living in a permanent shadow

Despite, the fact that I don't work, my weeks are never boring. My trips to hospital use a lot of my time, and I have calculated that in every month, I spend a complete week at hospital. I have had to become very selective in the projects that I am able to get involved in, so that I allow myself, enough recovery time between treatment. My reality is that I am unable to do the things that my brain remembers I used to manage! It has taken me a long time to come to terms with that.

I watch enviously as my friends fill up their social lives, and plan holidays. Remembering those days, as if they were yesterday. Now, there are times when an evening out can feel like climbing Kilimanjaro. If I get too excited and start filling up my diary, I know that it will inevitably lead to me getting sick again.

My visit to hospital this week provides my thoughts for this post. During my 6 years of treatment, I have to visit the hospital at least monthly for a review of 'progress.' Is everything working as it should? Inevitably it isn't, so I then have to undergo more blood tests to establish what is wrong. This normally results in adding more drugs to my current cocktail. In basic terms, we are a balance of chemicals. If we stay balanced our health is fine, but if something changes we need to adjust it.

The team that look after me are brilliant! To quote my Consultant, " we can control what we can with drugs, but nature will do it's own thing!." Thus far, 'Project Chris' has been successful. I have life, where no one anticipated it. Everyday is a miracle as far as I am concerned. In fact I have just reviewed a new document, written about my disease, factually brilliant, and clearly written, but woke me up to the difficulties I face.One interesting fact I didn't know was that only 500 people per year are diagnosed with Mantle Cell Lymphoma in the UK. I knew I have always been special!

My trips for 'review' provide me with plenty of ammunition for thinking. Not only regarding my own circumstances but those of other 'long termers' in the same clinic. There are a few of us in this 'exclusive club.' We have a very special bond, as we have been through a lot of treatment and shared our personal ups and downs, over the years. We all know the rules, and are aware that anything can happen at any time. We have accepted our situation, and talk openly about treatment and disease.

 

This week was different however. Still the cheery banter we all share, but this time, I was greeted with the news, that one of our number had relapsed! This is not the first time either, which makes it much more difficult. The treatment options get less, and harsher, and if you can get into remission, that period becomes shorter. She was so matter of fact about it, and was preparing to start treatment soon.

Then I met another friend in the corridor, who I hadn't seen for a long time. I had last seen him, recovering after a recent stem-cell transplant. The first thing he told me was that I looked so well, quickly followed by the fact that his cancer had also returned. He was resigned to the fact that he would have more gruelling treatment, which if he was lucky, may gain him some more time. He is not a young man, and we both looked each other in the eye, with a knowing glance. A seconds silence, followed by, "I have to believe, I have no choice!"

Both these wonderful people have issues very similar to mine. We all understand, possibly more than our doctors do. We are kept alive by the skill and patience of our clinicians, a complicated cocktail of drugs and treatment, and a huge element of luck. At any time, that luck can run out. There are plenty of times when we are able to  live our lives without the word Cancer coming to the fore. However, whether we like it or not, the fact is that we will always live in it's shadow.

My belief drives me on.

I had already decided a few days ago, what I was going to write about this week, but just before I started writing, I was told of the death of my friend Rory Morrison, who was a broadcaster on BBC Radio 4. Like a lot of people in my life now, cancer had brought us together.

We first met at an awards evening for The Lymphoma Association. I asked if I could have a picture taken for my blog, and we then started talking. We had so much in common, including, a rare aggressive lymphoma. I knew that Rory was facing some of the treatment that I had already encountered, including a stem-cell transplant and high dose chemo. We decided to stay in touch, and via social media, I shared numerous stages of treatment with Rory.

 

After his transplant Rory wanted to celebrate, and he recently bought a new car, and managed to get tickets for himself and his wife, to go and see the Wimbledon Men's Tennis Final. He wanted a goal, something to look forward to as he recovered. He believed he would be better in time. It was his target and focus. Unfortunately he won't be driving his car or watching tennis at Wimbledon, and our lives will be much poorer for his loss.

The above example is very similar to my own. Despite, what logic, doctors, experience and everyone else tells me, I have to believe that things will eventually improve, otherwise I would not want to get up in the morning! After 6 years of unrelenting health issues and treatment I still see a time when I will be back to normal. Maybe it is a form of 'psychological block,' where reality seems like a worse option, and I refuse to see it?

My self belief started when I was at school. I was told I would do nothing with my life, which of course was really the best thing I heard from my teachers. Forget all the rubbish they had taught me, that I never ever used again, they gave me determination! This served me well in my business and personal life, and created a fantastic platform, to ease my way into retirement.

Then along came, cancer. The most daunting challenge I will ever face, both physically and emotionally. Yet I still have that belief.Perhaps it comes, from many years of life being kind to me? I have seen some extremely dark times. Days where I never thought I would see tomorrow. My clinicians got me through those, but there are still days when the darkness returns.

Recently we have lost Sir Henry Cecil (horse trainer), Iain Banks (author) and now Rory Morrison (broadcaster).In the same period, I have also lost many #Twitter friends, all to cancer. These are constant reminders of my own fragility. When I go to hospital, I am aware,after talking to other patients, about the tightrope we are walking. We all share experiences, and are no longer surprised when one of our 'regulars' passes away.

 

Despite all of this, I am still managing to do some incredible things, and raise awareness of the massive psychological and emotional issues of cancer, both through my face to face, and social media work.My diary keeps getting filled with lovely opportunities, despite my wife's hesitation!

Maybe she is right? Perhaps I should slow down my workload, and just get on with whatever life I have left.I know my doctors would see the sense in that. In fact most people would, but I am not really good at taking advice, as those of you who know me can testify. I think my fear is that if I have no obvious focal points in my life, I would stop believing. Instead of pushing forward, I would start to slip backwards.
 
Maybe it is the peripheral challenges that take my mind away from my biggest foe?

I would like to dedicate this post to Nikki, Honor and Reuben.

Now Ann-Marie is #notalone ( Youth Cancer)

One of the areas of my work that gives me most pleasure is working with young people affected by cancer. Unfortunately it is sometimes forgotten that many of the issues these guys face, are so different to those that us older people encounter. Things are beginning to change, facilities are improving, and support is growing for the increasing numbers of young people affected.

I am very pleased that the readership of this blog amongst young people is expanding rapidly, and this is in no small part, due to some of the wonderful contributions I have been able to share. Some very brave young people, who felt confident enough to share some of the toughest times of their lives, with the social media world.

One such person is Ann-Marie, who in her previous post described graphically, her battle with isolation. This piece was picked up around the world, and generated a lot of interest. As we all know, things can change very quickly, when you are living with cancer, and this has proved to be the case for Ann-Marie.

This young lady's story, is so powerful and moving, that I wanted to update you on how things were going for her. Below, is a copy of her latest blog.

‘Ello, remember me?!

 

 

 Yep, it has been a long time indeed. And thankfully things are finally starting to look up, the good thing being that this time round I can take it all in a bit better and embrace the happy feelings and proud moments rather than being scared of the next fall.

 So, I’ve not blogged for such a long time because I had a lot of personal battles that needed to be addressed and if I had blogged during this time it probably would’ve looked something like this:

 

 

 ’OH F**K WHAT’S GOING ON? Nxlkwjfbejlrhbqwlvjhwbrpubsv tjlrhbviptub rtsb verw;kdbuv wb;  ARGH LEG ncadilsuhnfcfeiruhb v;iqubdipt4r w;jbv  q;ejbh  ARGGGHHH LIFE  SKHndac;ireubc yb ;erbvi;qubrkbj;bjbkfbdbakjbfkjbfnghbltyj   IT’S ALL GONE TO S#¡T ncjkblqefjb vljqt rlbhv t;kbqr vhr. WHERE’S MARRIZLES GONE?!!!! ;sdid cjsn,/./,]\[falekrbvlrbljj WHO THE FU*K AM I SUPPOSED TO BE?!! dpb qekjrb clrj lreqhbueilajdn WHY DID WE PAINT THE LOUNGE GREY?!! nfoiernwinvininornevonvnejnsjdiojsjlkcnlkdabfcjrbe  TAKE ME BACK!! Ndkjsjjgjijiornjnjgnonfnorninn DOES THIS T-SHIRT GO WITH THESE TRAINERS? ndncewcnjnirnwvineriunvckwnlcjknljcnlwjnfdjnlv nhfgf klngfngfongoifniofngoi)(*&^%$£@@!±±±±!@£$%^&*()____feirhfnvuithrn I’M NEVER GOING TO GET BETTER! Hhipfhviothrigtiorhngtrtuiwbiobgioebtitbgfjidjwoifjoinnfionfionoinfoinsoinntrngp3n5vitnegvjngtv jkntvntejntbvjkt NO-ONE UNDERSTANDS!! dnrinfrciuncuignvirtvitnrvjnn±!@£££$$%%%%^^^^^&&*(((()))))))))+++==gjnvjgjkt jykbnjtvnek;jn ejtk vj jktev etvtnjitoenrrhbeqhrqepundmszirort I HATE MYSELF ’.

 

 Get me? Yeah, messy messy head. At times I resembled the character ‘Taz’ so best kept under wraps for everybody’s sake! I was also feeling very vulnerable at the time and didn’t want it brought up in conversation.

 

I started seeing an amazing Psychotherapist last October to help cope with the emotional fallout and psychological effect the whole thing has had on me.  It was very hard but definitely worth it! I feel a million times better and can finally start looking forward again. Obviously I still have down periods but they are nothing compared to the symptoms I was displaying before I started the programme.

 

I also learnt that I DO need time to grieve and instead of feeling guilty for feeling that way I should allow myself to do this, I have lost a lot. I know I have gained so much but the fact is, life will never be the same for me. I can find new ways of dealing with it now and different paths to take in the future but it takes time to accept this and I still find myself challenging it on occasions. As is with everything, it’s about balance. If I want to have down time where I can have a good old cry and F and blind about everything, I can. It’s perfectly normal, and it will pass.

 

The dreaded ‘anniversary week’ of my operations was awful. Despite going out and celebrating a year of my new knee it quickly came crashing down and thoughts of that time caused lots of emotions to resurface and it all felt very raw.

 

My friend Katy put me in touch with an amazing man called Chris who does a lot of work for various cancer charities. Chris asked me if I’d be interested in writing a piece, a while back, for his blog so I wrote about the problems I was facing at that time.

Here is the piece

 

The piece was greatly received by people going through battles of their own and even retweeted by Macmillan as part of their #notalone campaign. 

 Chris’ blog is an amazing, open, honest account of the battles and feelings he faces. It’s wonderfully written and I have found myself screaming “OMG, YES!!! I feel exactly like that” at my screen on many occasions. I highly recommend this blog to be passed on to anyone you may know who has been diagnosed with cancer or has battled it in the past, as he also writes about issues that effect you after. I’d like to thank Chris again for encouraging me to open up and for being such an inspiration to me. Thank you!!

 

So yeah, that’s what I’ve been up to whilst hiding! In terms of my physical recovery, all is good in the hood at the moment *touch wood*. My Vascular problems are being managed, as is my pain after being referred to a pain management clinic. My recent Oncology appointments have also been very positive and the nodules in my lung have not grown for over a year now, which is very encouraging. Obviously all of this combined has helped lift my mood greatly and has enabled me to be more active. It feels so much better not to have all of those various problems bogging me down trus’, it all felt never ending! I still have problems with fatigue but I’m slowly heading in the right direction with that.

 

I’m glad that I can recognise traits in my personality returning and I am feeling a lot more confident now, it feels very refreshing after a long time spent feeling as if I was a stranger in my own body. Even if I am not fully back I can see the ol’ bulshy side coming back and wanting a piece of the action!

 

Now it’s time for something I’ve been looking forward to for SO long… 

INTRODUCING ROBOLEG!!!!

Here’s ROBOLEG in it’s full glory. I had an appointment with my wonderful consultant this week and took a picture of my all time favourite accessory. This one is actually an x-ray from last year but I took a shot of this one because it is clearer with the positioning of the top and bottom of my leg so I can explain what’s what. I’ve been meaning to get a pic for so long but the last time I saw him I wasn’t in the right frame of mind as it was an emergency appointment during my setbacks. 

 It’s not the clearest of photos as I took it from the wrong angle in my flurry of excitement. He has given me permission to be a great big massive show off so here goes… ISN’T IT AMAZING?!!!! LIKE THE BEST THING YOU’VE EVER SEEN!!! I’ve seen it loads of times since I had it done but I don’t think I’ll ever grow tired of it.

 

 

 

 

 

 

There has also been a MASSIVE breakthrough in research into bone cancers. 

A team, led by Professor Adrienne Flanagan of the Royal National Orthopaedic Hospital (RNOH), was the first to identify a genetic mutation which is present in approximately half of all types of chondrosarcomas (the second most common form of bone cancer - the one that I had!!).

They have won an international award for this amazing achievement. This is such good news and I’m very proud to have given samples for this research. Change is on it’s way!!!!

 You can read the full write up here

Over and out,

Marrizles. x

I would like to thank Ann-Marie for sharing this piece with me, and for the very kind mention. If you would like to read more please follow this link.

 

How we choose to remember our past

As different things happen in your life, your priorities naturally change, so what was important at one stage, might be less so now. For example, when you are, young, free and single, things are very different, to when you start settling down, get married, start a family and begin to build a career. But it is our past experiences, that make us the people that we are today. All the choices that we have made, have brought us to this point in our lives.

For most of us, it is very important to hang onto things from our past, that will bring back memories, of key times in our lives. Perhaps people we met, experiences we had, things we achieved, or even sentimental objects that we bought or were bought for us. As I have got older, my desire for 'things' has become much less. Birthdays and Christmas's have become more about, celebrating with family and friends rather than sharing meaningless gifts.

I guess my illness has a lot to do with this way of thinking. However,we have spent a lot of time clearing through the clutter, with which we have filled our house over the years. Most of it, very valued at the time, but 30 years or so on, I am struggling to remember why we kept it. Of course there are a few things that have sentimental value, but very few.Some of my friends have the same music on vinyl, tape, CD and now mp3. They just will not get rid of the physical evidence of their past.

My music collection has been purged, and everything is on my computer. I have no physical records or films at all. It did take some mental strength, but everything went to charity, and I feel somehow liberated! My exception to this rule, is my football programme collection. I have been going to football matches since 1965, and always buy a programme. I also buy important cup final programmes and even own a 1966 World Cup Final one. I have 1000s in my loft. My family laugh at me, and I rarely look at the collection but it would break my heart if I didn't have them.Why is this?

 Back in the early days of photographs, we have albums full of pics, as the family have grown, but we don't look at them for years. Now days we are taking pics and videos wherever we are. We can easily film anything we want to, and store it on our computers etc. It seems to be a natural urge, to cling onto the past in some way.Just because it is easy to do, will it have more value in 20-30 yrs?

Since I have entered the world of cancer, I have found, that I rely so much on my memories, as a form of sustenance.My new life started back in 2007, when I was diagnosed, so I am only 6 now! I am still trying to find a path, but the one thing that gives me strength, is the things that I had done in the past.I draw great comfort from those. Also some of the wonderful people I have met and some of the wonderful places I was able to visit, when I was well. At one time I did feel that looking too much at your past hindered your progress, but I now feel that it is aiding mine.

As I am getting older, and struggling with my health, memories are taking on a much higher priority in my life. Things that I may have decided were ordinary, when I was younger, have become much more of an event. Every birthday etc is celebrated differently now, and I make every effort to include my family and friends to make it even more special.These things are all in my head, and with me permanently, so I don't need any physical memento.Sure, it is certainly impossible to remember everything, but it seems my memory remembers what I have considered important! Although the continual treatment does make things more tricky.

Our constant desire to cling to memories, seems to indicate, the subconscious value that we place on time, in our lives.After all, it is guaranteed that we will have less of it tomorrow, than we have today. It is a very depreciating asset.We all treat our memories differently. For some of us we like to have something physical to remind us, for others, that is less important.It seems that our brain, has a certain capacity, and naturally retains our important ones and disposes of the rest.

Special people, places, challenges, times and achievements. We all have them, and choose to remember them in different ways.Time has a way of helping you gently with the bad ones, as not all memories are good. I am really starting to understand the importance of memories in our lives. Is that because I am older, my health is poor,or is it natural?

How do you deal with yours? Have you even found the value of them yet?

Confessions of a cancer fraud (Annmarie's story)

 

After 6 years of treatment in the cancer sector, my learning never stops. Unlike a lot of things that we learn in our lives, everyone's experience is unique. So, no amount of reading, or talking with others can ever prepare you, for how you will deal with your own cancer diagnosis. Some people just quietly get on with what they have to do, and others are happy to share their experiences. There just isn't a correct way of dealing with things, just what feels right for you.

 

One of the things that I have learned,is so much that happens around cancer is out of your control. Not just how you feel about things, but particularly how other people view you, because of cancer. I have written about this on several occasions, but it is a very common issue, affecting most of us.

Personally, I have never seen a hierarchy in problems. It just doesn't matter if your problem is perceived as bigger or smaller than someone else's, it is still your problem. Some people are able to cope with things better than others. Frequently people start to tell me about issues, but quickly add, " Of course, it is nothing, compared to yours!"

 

Since I have been blogging, I have noticed a degree of 'competition' amongst people. Not just in written form but in conversation too. It is almost like there is an invisible health 'league table.' Are you in the 'Premier league?' If not you are in the 'regular league,' with the masses! I have found a lot of people who have been touched by cancer, who find it difficult to communicate their individual issues, because of this situation.

I try to cover as many aspects of the fallout from cancer, on this blog, and although I have a long and varied experience myself, I enjoy sharing other people's stories so that we can all learn from each other. Annmarie, talked of her frustrations with me privately, and I knew that this was a common issue and invited her to share her story, which is as follows:


"My experience with cancer was very brief. Strictly speaking, it would only have been life threatening if I’d refused to have the surgery suggested. Of course, I went ahead with it as really there was no other choice. It was major surgery and it was a few months before I would work or drive, but apart from aftercare, I didn’t need any further treatment.

Because of the nature of the cancer I had, it is almost certain that I will not suffer with a secondary case. I didn’t have chemotherapy or radiation treatment. Once I’d had the operation I was officially ‘in remission’, but did not attend the oncology department during those 5 years. Instead I was referred to the gynaecology outpatients for that time. 

But cancer left a permanent mark on me that I still struggle to come to terms more than 10 years later. Cancer left me childless.I’d already had 6 months of gynaecology appointments where I’d been diagnosed with polycystic ovaries and endometrial hyperplasia. I was told to go home and get pregnant quickly because things didn’t look good.

There’s no surer way to NOT get pregnant, I can tell you!

My consultant surgeon was amazing. She was so frustrated that she was not able to stop the condition from deteriorating. In her long career I was only the 3^rd or 4^th person under 40 that had the condition. I was diagnosed with endometrial carcinoma in June 2002. It was obviously progressive and two weeks later I found myself hospital ready to go under the knife. I was 30 and not yet 2 years married. 
 

As you can imagine there are many elements of this story that I’m saddened by. But from a cancer point of view, one of the hard things to cope with is that it’s like I didn’t actually HAVE cancer. You wouldn’t believe the amount of times it’s been said to me… "well you didn’t really have cancer". "You just had cancerous cells didn’t you?" "I mean, you never had any treatment, people who have cancer have chemo, you got off lightly."

 

 

 Please don’t get me wrong. I know I am blessed not to have had to go through the worry of dying from the condition. I thank God I didn’t have to have chemotherapy, but comments like the above have made me feel like a cancer fraud and I don’t think I ‘got off lightly’.

I consider myself a cancer survivor, but I don’t say it to anyone as it usually provokes a reaction that’s tough to take. But I know I had it.

Every time someone tells me they are pregnant, or I hold a new born baby or see one of my niece’s kids in their new school uniform – I’m reminded that I had cancer; albeit briefly.

Maybe this is a place I can say it out loud and folk will get where I’m coming from – I certainly hope so."

Firstly I would like to thank Annmarie for sharing the above with us. As I mentioned earlier it is a situation that I have encountered reasonably frequently, and I am very happy to be able to get these issues out in the open. If you would like to hear more from Annmarie, you can click here or contact her via Twitter @amowriting

Just a piece in the jigsaw of life

My treatment has started again in earnest this week. Unfortunately, my efforts to regain some of my life have not been successful, and after trying my treatment monthly, my graft v host disease is beginning to get a grip on my body again, and I must resume a more aggressive regime of fortnightly. I did start a self centred moan to my Consultant, who smiled. She said that I will HAVE to slow down now, and that the staff would be pleased to have my company more often!

There are certainly many down sides of being in the hospital so frequently, and the treatment is tiring, but unlike chemo, it is not toxic. I am still plugged into a machine for hours but am able to focus on my thoughts. So I try and take the positives where I can. It certainly does force me to rest, and now instead of constantly using my smart phone, I listen to music or take some thinking time. It is the thinking time that prompted this piece.

I have again, become a very regular part of the nurses lives. Alongside my personal life, my 'cancer life' is intertwined with so many people in so many organisations, both physical ,and on social media. There are very many threads, taking me in so many different directions. Yet it feels that in some crazy way, everything joins up eventually, like a very large circle.

 

My work takes me into some incredible peoples lives. Their stories are unique, but they become part of my life, and me theirs. I liken each life story to a jigsaw, we all have our own, in which we are a piece, but we also join up with other jigsaws, to form a larger one. As our connections grow, the picture starts enlarging, and changing.

Several weeks ago I was doing some work, and my experience was able to aid the process. The people involved were wonderful, and we have been able to help each other since. We are now very much part of each others lives, and stories. Now I am not only a piece in someone else's puzzle but my own picture is changing again.

When there are pieces missing from a jigsaw, you can never see the complete picture in all it's glory. If you consider certain groups that you know, family, friends, social, or work colleagues, when certain people are missing, it just isn't the same.

Time is a big issue for all of us, and as we get older, it becomes more difficult to find room in your life for new acquaintances. But I am finding that my list is still rapidly growing! Obviously we only have a maximum capacity, for relationship building. But as we accelerate through life, is the way that we deal with people changing? Social media means that we can maintain relationships in the way that we want. Not every person deserving of our valuable time in terms of personal attention!

My life has always revolved around meeting people. Some stay in the memory, and relationships form. Others come ,and quickly go. At different times, people come to the fore and then drop back again, as priorities change. At times the puzzle gets larger and other times it gets smaller.

 

I am always amazed that how through my illness, the relationships I am forming, feel very strong, and long lasting. Maybe it is just the phase that I am going through, but things feel very different now. Whenever I meet someone, I never feel that there is a hidden agenda. I still have my 'business awareness' which makes me cautious of peoples motives, but we only try to help each other. Maybe I am now a piece in an entirely different puzzle!

It seems that my life is swinging around so wildly, that I don't even know anymore, what the picture looks like. I feel that I am a 'universal piece' that can fit anywhere. Sometimes a corner, or whatever is required at the time. My life certainly feels like one big puzzle right now!

Are there times that you feel similarly? Please feel free to share your thoughts below

" Am I boring without my cancer? "

Firstly, I would like to say that it is not me asking the above question! This came from one of my followers on Twitter, and it got me thinking. The reason that tweet had been sent, was they had found that since they were in remission, and treatment had finished, the amount of followers they had was rapidly decreasing.

They had very quickly put the two things together and made that assumption. That then made me wonder, and I looked at my own life since cancer, and many other people that I know, both personally, and via social media.

In several of my previous posts, particularly 'my name is not cancer,' I have talked about the fact that whether we like it or not, we tend to be seen as that person with cancer, rather than the person you were before. Personally I have got used to that now, but I know that people who have little experience of what we go through, have a quiet fascination to know more. I guess also, that in many ways we encourage that curiosity, by the awareness raising that we do. Also, if no one asked about things, we may just assume they weren't interested!

 

I wasn't using social media from the start of my journey, so I have no direct comparison, but an example that is valid, would be my fundraising . I started raising funds after my stem-cell transplant. There was a fantastic wave of enthusiasm by people to donate. As time moved on, that waned, and raising money became more difficult. Along the way, I have been seriously ill on numerous occasions and the donations have increased. Now, only currently having maintenance treatment regularly, and after 6 years, it is a lot more difficult to raise enthusiasm.

Is it then, our use of social media that gives us a 'slanted' vision of how people view us? A lot of people tend to judge their own popularity, by the quantity , and coming and going of followers. Personally I don't. I have always tried to have fun, and make people smile. That hasn't changed since my diagnosis. What has changed, is that I now use social media!

However, when I review my own journey, since diagnosis many interesting things have occurred, both good and bad. Since, and because of my illness, some incredible things have happened for me, and I have met people, and done things that I could only have dreamed about, in my life before cancer. There is talk in the future about a book. The ironic thing is, that there is little appetite for the first 50 years of my life, the most excitement, is about what happened after I was diagnosed!

Due to my cancer work I am now known around the world, through conferences and social media etc. Certainly that would never have happened in my previous life, but I would like to think that people enjoy what I do, rather than having an intrigue into my health issues. Or am I kidding myself?

Most of the patients that I know through here or personally, were quite happy getting on with their lives, until cancer came along. A lot of us enter the internet world, because we want to connect with like minded people, raise awareness and find out more information. We are passionate about what we do, and open our lives up to the world. This creates, in many cases, a swell of interest, generally temporary, short or longer term. Then our lives go back to a 'new normal.'

Life with cancer, creates many highs and lows, physically and mentally. It can be difficult dealing with the physical side of things alone. At times there is a lot of attention paid to you because of your condition, not only from the medical profession. If there is a positive conclusion for you after treatment, it can be extremely difficult, psychologically, to return to everyday life. Maybe, without a lot of the attention that we were used to.

 

This year I will be talking at more conferences than ever before, only because of my illness. It is great that so many people are interested in things, and a valuable opportunity to raise awareness, but I would be doing none of this if I hadn't got sick. Certainly my phone never rang with so many interesting people.

In my own case, I will never be far from this terrible disease, so this is part of my 'new life,' but I can empathise with people who might question, where all the people go, when they get better. 

What is your view? How has your life changed? Is this an issue you have even thought about? I look forward to hearing from you.
         
                          You will always find me on Twitter @christheeagle1

The blogging revolution in healthcare

Several blogs ago I mentioned that my diary was mostly empty and I was enjoying it that way. My major professional engagements were successfully completed, and it was now time to review my strategy for the rest of the year.Emails and phone calls then came along, with some varied and exciting opportunities, which set my juices flowing, so I am back in the game!

I have chosen today's subject, as a lot of the opportunities that are coming around for me,are linked in some way to my blog. Many more people are aware of what I do now, because of the power of the internet. It is such an effective method of communication. Anyone who wants to know my story, or what I am currently working on, just has to check it out via the blog. It saves me so much time, phoning or mailing people.It also means that people can do things when it is convenient to them.

 

My blog was started just over a year ago. I needed an internet platform for people to find me when my tv programme was broadcast. I didn't know what to write or who my audience was. It was just a focal point for anyone who was interested.But today the picture is very different.There is now an audience, and demand for a certain style of content. The audience expects high quality and interesting content. All this for free!

Bloggers get wound up by lack of comments, but do we comment when we read a newspaper? There is plenty of area for thought, but generally we move on to the next unrelated article, having consumed that one.Also, more of us are reading from smart phones and tablets on the go, which is not conducive to writing comments, even if we are thinking them.

More than 5 years ago, when I started working to raise awareness, of the psychological and emotional issues of cancer, social media was in it's infancy in the health sector.Facebook, was busy, with people's holiday pics, but nothing much else, and Twitter was starting to be used by celebrities as a method of promoting their work. It appeared that blogging was for 'would be' authors, who wanted to dip their toe in the water, and test their work, with very little expense.

How things have changed in such a relatively short space of time! Obviously the subject of cancer is a niche market, but you would not think that. If you look around the internet thoroughly, you can find information on virtually anything. It seems like people are embracing the freedom that they find in social media.When I started writing, I felt that an open and honest blog was what was required to encourage people to think about their own issues differently.I now find so many people are opening up about their illness in such an intimate style, that at times I feel like a family member!

Reading other peoples stories is very powerful, and people can find a sense of release, when writing their own.The slightly unseen, and so far relatively untapped benefit, is when the professionals get involved. Patient blogs are a wonderful tool of understanding how cancer and it's treatment, affects people in their lives, and I feel that many health professionals lack even a basic understanding of social media, and there is still a feeling that it is not valid in their work.

However there are clinicians and other professionals around the world who are fully engaged in social media. They blog, they tweet and run websites. Happy to share with the knowledgeable and the less so. It is quite obvious from what they write that they are all well informed, regarding patient blogs.These are such a rich vein of information, and much more interesting than books.Everyone has a unique way of communicating their experiences and emotions, and dealing with the highs and lows that occur during ill health.

I don't think I can claim credit for the revolution in health blogging, but I am certainly proud to be a part of it. There is never a day goes past where I don't read somebody's blog.I feel I know those people so well even though in 'real life' we have never met.Social media generally, is a very powerful glue, binding like minds together, and helps forming strong bonds, enabling you to deal with difficult times slightly more easily.

In recent weeks I have been shocked by the demise of several members of my 'community.' Mostly, young people, taken by bowel cancer. #never2young Truly terrible. The thing I find so powerful is that all of them were so open and honest about their situation and shared a lot willingly, with everyone.This is a massive change to how things were with cancer even just 10 years ago, when people rarely dared to even mention the word.

 

It feels very perverse, to say that things have progressed when we now talk openly about death on social media. My view is that we can't deal with something properly until we understand it, and by talking about things, hopefully we can learn more. There is a lot more to come from blogging, so watch this space!

I would like to dedicate this post to the brave young lady that is #katiescarborough Katie has just written, what may possibly be her final post entitled 'a brick wall.' I have never read such an incredibly brave piece, and I remain in awe of this young lady and her family. My thoughts are with you all. This sums up the power that can be generated through a blog.