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?