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.

 

Young adult cancer. Ann-Marie's story (Isolation)

Following my previous post about loneliness, which has had some incredible feedback, I just had to publish this account of a very brave young lady, Ann-Marie, who from the age of 4 has battled Ollier Disease and then at the age of 25 was diagnosed with bone cancer. Ann-Marie bravely wants to share her story through this blog, to raise awareness of how isolated people can feel, at the time they need support the most!
Some of our younger readers may recognise the roller coaster of emotions. This also emphasises that these emotions can effect you, at whatever age you are
This post is slightly longer than usual, but an incredibly powerful message!

"I fought the fight; I'm out the other side but what now?"

 So, it was a little while ago now but I made it through the last major and by far the hardest and most upsetting milestones on my bumpy ol' journey. F**k that was hard! It was very emotional; I knew the anniversary week of my surgeries/complications was going to be the hardest. That week in the previous December was so frightening and confusing, the plus side of being so ill at the time was that it was too hard to comprehend what was actually happening to me and I launched myself fully into fight mode.

 
I can spend the rest of my life asking 'why?’ but now I need to start trying to ask 'how?’

How do I move forward? How do I try and leave it all in the past and view it as a blip that happened in my life? How do I reclaim the parts of me that I lost along the way, and regain the big enthusiasm for life that I used to hold? And how do I overcome these feelings that have been suffocating me for so long?

 Self reflection is a right b**ch hey?! I know this all sounds very downbeat and probably not what you'd expect from gobby old me but I vowed to be totally open and honest about every part of this time of my life, even if the chapter I am about to explain was sugar coated for a while by myself, but there are lots of reasons behind that and my main aim in speaking out about my experience is to spread awareness of the psychological effects that can occur.

 
I spent quite a bit of time battling with these demons behind closed doors and only letting a few selected people in on my thoughts, although never quite fully, thinking that I must be going crazy but also feeling that I'd be perceived as somewhat ungrateful of my blessings, whilst so many people are out there suffering and would give anything to be in my position. ‘C'mon, man up’ I told myself; it's not the end of the world right? And no, I knew it wasn’t. I knew that things didn't always go to plan, I knew how loved and cared for I am – surrounded by so many family and friends willing me on, expressing kind words of encouragement and offering support left, right and centre, even people that I’d never met! And I knew how far I've progressed in this length of time but when you are caught up in a cloud of despair it's very hard to see what's on the outside.

 
The emotional effect that it's all had on me has been so isolating. Along with the fact that, due to my situation, it’s highly unlikely that I’ll ever get the longed after ‘all clear’ the fear of the unknown was at an all time high. It's incredibly hard to admit that something is not right when your mood, thoughts and actions become totally alien to you and at the same time completely out of your control.

 It was told that I was suffering from Post Traumatic Stress Disorder (PTSD) in December '11 whilst still in hospital, it's not unusual in my situation, a near death experience is not something I would recommend! I was displaying symptoms of this anxiety disorder and battled with very distressing thoughts on a daily basis but, as I mentioned before, I was still in fight mode so had getting back on my feet as my main priority. The thoughts did not go away and began to take over my everyday life, with every setback I experienced, the feelings would grow stronger and I had a massive year of forward rolls and set backs indeed. To be quite frank, looking back and knowing more about it, I can now see that I was completely engulfed by it.

 

I never expected this to happen, I expected (and wanted more than anything) to be one of those people that bounce back straight away, go and live life to the full after cancer treatment and achieve their happy ending. I did have plans at the beginning to do this, LOTS of plans. But with every setback I encountered it felt as if my life was being ripped to pieces in front of me, I wanted to know why things kept trying to hinder my recovery and it would drag me back down further into that dreaded dark pit of despair each time.

I questioned why this was happening to me and felt a great deal of resentment. I missed my old life so so much. Why did it all have to turn so s#!t?!

From the outside I guess it was not that noticeable to most people, I'd keep up a front because I was terrified of people finding out that inside my heart was breaking and I felt absolutely torn to pieces. Which is a classic sign of depression but I just kept thinking ‘don't let them down, keep the brave face on and do what's 'expected' of you’. It was a constant fight with my emotions and behind closed doors I was a total wreck, I'd lay awake at night over thinking, crying my eyes out because I just couldn't look forward and that scared me more than anything. My future hopes and dreams that I'd built up over the years were gone, just replaced with a blank. And my relationships with those around me, even my closest were beginning to buckle under the strain.

 

It was around May last year that I finally swallowed my pride and asked for help, which was the one of the hardest parts of the whole process. It's not easy when you go from being happy go lucky, taking things in your stride to suddenly not wanting to see people, stop doing things you'd previously enjoyed and sometimes going to sleep and dreading waking up the following day. Constant irrational thoughts like these would plague my mind. I was petrified that if I admitted what was happening to me that I’d let everyone that has been supporting me through this time down, I didn't want to be judged, I didn't want to be seen as a drama queen but I knew I couldn't go on living like this anymore and something had to change. Tbh, I felt really s#!t, most of the time.

Without sounding all woe is me, I've had some pretty awful experiences in the past and just ‘got on with it’ so it was very out of character for everything to come tumbling down around me but more so for me to allow it to. The 'old me' would have dug her heels in and told it to 'buggar off' but not as lightly as that.

 

Anywayz, after many gruelling assessments I was finally diagnosed with depression and PTSD (yep, don't do things by halves!). I was offered a place on a prestigious programme and have been attending for the past few months. I have only just completed the programme and without sounding all #ohmydayztherapychangedmylife about it, it really has helped me and I can see and feel the effects in my thoughts, behaviour and emotional reactions to situations. I know it's only early days yet so I must not jump the gun. Don't get me wrong, it's been really horrific in parts, emotionally draining and I still have 'off' days but different techniques used have been helping to ease up this messy 'ead of mine. A lot of things have happened recently that have coincided with the therapy too, so these factors may be a driving force that contributed to having a clearer head but whatever it was, I aint complaining!


 

 

I know that cancer can target anyone and people have to deal with it in their own way. You are not told about the emotional effects you may encounter, you are not told about the possible months you may spend crying wanting everything to just f••k off and give you a break. Of course you are not told this because you are expected to be strong and put all your energy into fighting.

 

You won't let it win but it definitely puts you through your paces!

 

And that's fair enough, it's expected that the main focus will be that happy ending but don't be afraid if this takes a little longer for you. When I was experiencing depression at it’s worst, I was convinced that I must be some bad exception to the rules and that I'd done it wrong because I didn't feel I could jump for joy at what should’ve been the end of my treatment, I was still living with the effects and being treated for various complications. I felt empty, lonely and frightened.

 Overall what I'm trying to say is that is completely NORMAL to feel this way, and not to beat yourself up about it, you are not a failure and there are no rules.

You could have the worlds biggest support network but still feel alone; this doesn’t mean you are ungrateful.

Help really is there should you need it and it may take a while to start experiencing the positive effects but you will be on your way to your own happy ending at some point.


I would like to thank Ann-Marie for taking the time to write this piece, and share her experiences. You can read more about Anne-Marie through her own blog, 'One girls quest to rave'