I can actually make a difference in the NHS!

Well peeps,

Back again!  Bet you didn’t think that would happen so soon as I have not been blogging very regularly recently.  As I am at the rentals at the moment, with less than a week to go before I haul all my shit back to London- well a suitcase, a rucksack and stationary.  Lots and lots of stationary.  LOVE stationary!!  And near the rentals in Colchester is an amazing shop with good quality pens etc but not at an extortionate price, so will be stocking up there before I leave.  Anyways, gone off the point slightly I think….. Ahh yes, still in the country, I have time to do this.  Not that I don’t in London, but at home, the one or actually two things I have to do myself are get up and shower.  Oh and I suppose, go back to bed at the end of the day.  And get dressed and then into my pj’s.  So I lied, I have to do, hang on, just need to count, 5 things a day myself.  The rest magically happens by my parents.  No I am not 27, going to be 28 rather soon, I am in fact 5!  And it appears I am a 5 year old with a wondering mind today and can’t actually remember what I was going to say….but no doubt something else will replace it and probably in a nonsensical way.  Yes, yes, I know, 10 points to me for a good word.

Right, yes, so back to London I go next week.  Don’t feel quite prepared for it, and not quite a rested as I had hoped, and definitely haven’t done as much work or running as I had planned….but, I have had a wonderful time.  As some of you may well know if you read this more than once, I am not good with change, and going back to London is a change.  However, I do love London and my flat and being in Brixton and I think seeing all my friends again will be a good thing, as I get more hermitty daily in the country. I was in London yesterday for the day (got up at 6.30 to be on the 7.08 train.  I know you won’t believe me, but it’s true!  Oh and that is AM not PM) and whilst I found myself getting slightly irritated with the fuckwits in the tube getting in the way, I loved it.  I love the buzz there, especially at the moment.  I have always been a proud Londoner being very proud of the city and all it has to offer.  The range of people, architecture, food, museums etc, but the Olympics and Paralympics have made me even more proud.  London is fucking fabulous and I am so lucky to be there.  Also, there were rather a lot of veeeery nice looking men on their way to work yesterday morning which helped.  A lot. 

So the reason for being in London yesterday is that I have been invited by the Teenage Cancer Trust (ha, you thought I was going to do a post not mentioning them, rooky error!)  to become a cancer peer reviewer for the NHS mainly for Teen and Young Adult wards, but I can do others as well if I feel confident.  This means that when different departments get, well I guess, audited by the NHS to make sure that they are following the set guidelines etc etc etc that they are actually doing it.  It hit me yesterday that actually this is a phenomenal thing to be able to do.  I ACTUALLY get to make a difference in the NHS, which, when you think about it is mind blowing.  I can make sure that people get the best and correct treatment, access to trials etc.  By doing this I am able to help to make sure that what I experienced in Scotland is minimised.  This is such an honour and one that I will do to my best ability.  If I have mentioned this previously, sorry, and get over it!

I have also come to a decision recently; you may remember the cancer course I have been going to since 2008, at a cancer centre in Clapham?  Well it looks like the monthly group meets have come to an end, and I actively said that I didn’t want to continue with it.  I think this is because it has linked in with my fantastic news from my last check up and it’s time to move on.  I have come to realise over the past 5 and three quarter years that I was diagnosed for a reason.  I have never really begrudged the diagnosis and whilst I have had moments of ‘why me?’ especially when on the first chemo and so intolerant to it and miserable and alone, the good that has come out is immeasurable.  I’m not going to go into a list of it now -maybe that should be saved for the first post I do post treatment, fucking hell post treatment.  Never thought I would be able to say those words so soon and know that it is a reality, not a desperate want, which is how it has been until now.  So yes.  As time goes on, it is revealed to me why that blood test on January 19^th was in fact the beginning of a whole new life for me and one in which I can make a difference.  And going to review departments in the NHS is making one hell of a difference!

On a very different note, I follow someone on twitter who writes a fucking HILARIOUS blog, the ones about food and cooking make me laugh the most.  If you want to giggle, which I doubt my ramble today has done, go and read it.  http://www.stuartheritage.com/

So lovely ones, I should probably go and do some work as I haven’t started my physiology revision yet and the Uni term is getting closer at a terrifying speed!

So until next time, which may well be next week as I have the photo shoot next Friday for Grazia, and will let you know how it goes,

Lots of love, laughter and smiles,

XXX

Who will I be? News from my last check up

Well my bloglets, 

At the moment I am at the rentals for my summer holiday.  I passed everything this year, thank fuck.  I only scraped through a couple of exams, so need to knuckle down next year as it all counts towards my final mark.  I decided to be a bit of a hermit and come back to the rentals because it meant that if I wasn't in London spending money, I could afford to pay rent and bills without getting a job.  I also really needed a break to rest and re-charge which wouldn't have happened if I'd had to temp/stress about getting temp work etc.  I have also been doing uni work in preparation for next year, and going over the things I scraped through.  So thought having a time out in the country was a good thing to do.

I had my most recent check up just before coming home.  Still weigh the same....bugger.  Platelets were normal for the 3rd time since my diagnosis which is amazing.  I also found out I am the only person who has reacted the way I did to the first lot of chemo I was on.  In a way it explains why my then consultant ignored how I was feeling and told me that it wasn't so.  However, the fact that I flagged symptoms that I did should have possibly made her think that maybe, just maybe I was telling the truth.... Or maybe she forgot I'm an individual and will react differently to others..... moving on, this post is not a rant about her.  I have learnt that she has retired.. Thank fuck is all I have to say about that.

I have also been told that I am going to be put in a trial which means I could be chemo free in just over a year.  The powers that be have decided to see if people who are stable with a low Leukaemic rate and have been stable for a while with it, continue to maintain it when off treatment.  So at the end of this year my chemo dosage with halve and if it continues to be stable, will be on the lowered dosage for a year and then be taken off the drugs.  If the rate continues to be stable I will be kept off it, even if the magic 0.000% hasn't been reached.

When I was told this, I was obviously thrilled.  I have now processed the news as it was a massive shock, and whilst I want to be in the trial, I want to come off the chemo, I want my life back, I am scared.  Not scared about my results, or living with a stable, minute amount of Leukaemic cells in my system, I know all that will be fine.  I am scared about who I will be.  Who am I without the cancer treatment?  Who am I once I am no longer the cancer kid?  I have lived with the cancer and the treatment for so long, can I remember who I am with out it?  When I come off the chemo, because I will, I will have been on chemo for 7 years.  A quarter of my life.  Am I ready to let go?  One the one hand I am utterly desperate to let go and be treatment free and not to worry about the things I do.  Not to have to plan my time so I can do what I want without exhausting myself.  Not having to worry about the amount of sleep I need every night so I can function.  Not to think if I will be chemo free by the time I want to have a baby and getting the ok from my consultant to stop treatment for the needed time.  I want to be able to do what I want, when I want without having to get the yes from the hospital.  I went on a uni trip to Germany in July and had to get my consultant to email my lecturer to say it was fine to go.  Milo was home for a wonderful 10 days and we went to the seaside one day for a walk and brought some crab back for supper.  I hadn't slept well the night before and went for an hour and a half walk along the beach so was tired when we got back in the evening.  When eating the crab that night, there was the possibility it was off and I didn't know.  Instead of being able to rationalise it, and think that it tasted and smelt fine, so must be, I sat at the table crying because I couldn't deal with it.  I couldn't function and process that small thing.  I am 27 years old for fuck sake.  All of this I don't want in my life any more.

When I come off the chemo, will I still be special and loved for me rather than the 'special' me that has been at the forefront for the past 5.75 years and will only be here for another 1.25 years?  It is this that is on my mind at the moment.

With, as always, love, 

XxX

Charity stuff update

Well my bloglets,

It's been a while since I have done this.  I have meant to, but time seems to be running away at a monumental rate and you blink and another week has gone.

I have been fairly active on the charity front recently.  Pictures of me will me will be appearing in Macmillan literature.  The only not so great thing is that when they asked if I wanted to take part in a photoshoot I had assumed that there would be a make up artist.  I was wrong.  They wanted 'au natural' pictures.  Had I known this, I would have gone with make up caked on.....It was also slightly amusing as I was asked to be as I would be at home on the laptop etc, so did what I would do. I was then told by someone who worked at the charity if I could sit in a completely different way, hold the laptop differently etc etc etc.  I almost asked, why don't you tell me how you want me to be and I'll do that, rather than be 'me' and for it to not be what they wanted??!.....  Slightly different to shoots I have done before.  So here is one of the pics...

I have also been asked to do and interview for Grazia with a friend for Macmillan about friendship and cancer and also to plug their coffee morning, so will write about that after it has happened.  I have (as has Crouch) been interviewed over the phone by the journalist and the photoshoot is on the 14th Sept,  I will be going caked in make up just in case!!!

I have also done some TCT stuff as well.  I spoke at a cricket match which was hilarious as I know nothing about cricket or cricket players....there was a cricketer there called 'Tuffers'.  Apparently he is quite a big deal in the world that is of white sportswear and most importantly afternoon tea!  I can't really remember what I spoke about now, I know I made people laugh and nearly started crying so stopped earlier than had planned.  But hey ho, it sometimes happens.  Also, as I never write what I'm going to say it doesn't really matter when I stop talking either.  I don't have a pic of the celeb cricketers, so I'm afraid I can't show off with it on here, which is a bugger.

That's it for this one, as I am about to do a separate one about my last check up.

Lot of love, laughter and smiles,

XXX

A picture and a poem

Well my lovely bloglets,

I just had lunch with my Godfather who is a wonderful man and he gave me a present. A necklace which came with a poem that I want to share. And I want everyone who reads this to remember it.

This is an image of you

Who you were
Who you are
And who you will be

It is everything
And it is nothing
It is a symbol of
Emptiness
And wholeness

The diamond shape
Head represents
Wisdom and knowledge

Your wisdom
Your knowledge
Of who you are in this
Moment

And the diamond in the
Heart is love
Love for who you were
Who you are
And who you will be

Be gentle to yourself

Give yourself the gift
Of love

The Marathon- I did it!

Well peeps,

Where to begin?  This past weekend has been a bit emotional, starting with the Teenage Cancer Trust pasta party when a women came up to me to say hello, and it was my friend Jacks mother.  For those of you who have been reading this for a while or have recently come across it, but read a few of my posts, you will have read how affected I was by Jacks death.  It was also strangely fitting as I know he was with me yesterday as I jogged around the streets of London.

So Sunday dawned bright and sunny and I was up at 7am to eat my banana so I digested it enough before I started running about about 9.45 so I didn't get a stitch.  I went to Clapham to collect a school friend, Lulu, before heading to London bridge to get our different (sob) trains to the different starting points.  Lulu had got a place through the ballot so started at a different point to myself.  I had no idea until last week that there were different starting places, but I guess it makes sense!  I did however, pick up a not bad looking guy at the bus stop in Brixton who was starting from the same point as me and not a Londoner, so took him along so he knew where to go. So the day started well!

As I am rarely awake at that time in the morning, I had thought that maybe it had been like that a lot over the past week and the weather then turned to shit, but no, yesterday was unique.  Due to this I ran the first 8 miles (which did actually fly by) in my winter running top.  I-D-I-O-T as I kept on expecting it to cloud over and the rain to start.  So I did a good job of destroying myself and de-hydrating myself before the half way point.  Excellent. But then again, not as stupid as all the people TEXTING on the way around!!!  I actually saw a girl fall over because she was on her phone. Idiot.

People were out and about cheering for most of the start of the route, but when I got to Tower Bridge I was overwhelmed by the amount of people there, and when I spied my darling Daddio I went over and burst into tears.  It was at the point that it really struck home what I was doing.  To be honest though, whilst running yesterday I had to keep on reminding myself that this is it, this is what I've trained for over the last 6 months as it was so surreal, and it still is.  I can't actually believe that I have done it!

Mile 21 and I started to slow down and the walking began.  I ran/walked the rest of the way, but did run the whole of the last 2 miles.

I was not an emotional wreck at the end, in fact there was just the feeling of elation and being really proud of myself.  In fact, other than at the 12 mile ish point, I have been fine about it, although I am beginning to feel it all coming up now.....I think it will take me a while to fully process it  as I can't really remember running it yesterday or how it felt.  I'm sure this will sound odd to most of you, it even sounds odd to me, but that's just the way it is.  Maybe in a week I will wake up and clearly remember every detail.

If any of you reading this were out there supporting, thank you so much, I am so grateful to every person who yelled out my name and those who handed out Jelly Babies in the last 2 miles, they kept me going, I was amazed at the difference they made!  Instant refined sugar hit, mmmm.

So, how do I feel about it all?  To be honest I'm a bit disappointed by my time - 5hrs, 5mins, 17sec as I was so hoping for 4.5hrs and as my training had indicated that I would be able to achieve that time, BUT you don't know how it will be on the day and there were so many people, and that slows you down.  HOWEVER, I did it.

I did it in one piece, I didn't get a stitch, I didn't pull a muscle or damage my knees, ankles or feet.  I did it with a smile on my face as people yelled out my name. I did it as I saw my friends along the route and blew them kisses. I did it when it was hot and got sun burnt shoulders.  I did it, and that it what I was aiming to do.  I did it for every teenager and adult I have come into contact with through TCT.   I did it for everyone on one of their wards at the moment, for everyone who will be diagnosed and I did it for every one who has tragically died. I did it for my friends and family.  I did it whilst on chemo.  I did it for me. I did it.

And here are a couple of pics to prove it!

XXX

10 days until the Marathon

Well my lovely bloglets,

10 days to go and I'm fucking terrified.  Went for a long run last Saturday - day before Easter, and it was hellish.  I was aiming to do 21 miles and had to give up after 19.  My leg muscles were in agony after 10 miles and I had to walk a lot, and continuously stretch.  And do you know why?  Because I was a fucking idiot and hadn't eaten enough the day before.  Good lesson learnt though.

I was a bit angry with myself about this because I really wanted to hit the 20 mile mark and 6 more miles is more doable than 7 - in my head anyways.  I was going to go for a run today with no distance or mile aim, to just go, but have been sneezing and a gland was up behind my ear last night.  Must. not. get. ill.  So will see how I feel when I wake up tomorrow and do it.  I will do at least 5 miles tomorrow as I need to keep running a bit otherwise it will be a real shock on the day.

I've also been really emotional, and whenever I think about the marathon I well up and have to really focus on not crying. Maybe I should stop the stopping and just have a good sob.

Speaking to my mother about my reaction to looking around the TCT ward has had me thinking about it, and on reflection I don't think it was necessarily the reaction or lack of from the guy, but seeing a room like the one I was in that has triggered all the emotion.  As previously said, I haven't had any contact with a hospital room since and I think it has brought the shock of the diagnosis back.  Also, it makes me think that how can those symptoms that I had and how I am mean cancer?  It's all a bit of a head fuck really.  Sometimes I feel like I am living in a parallel world and it's a bit dreamlike.  The reality is that I am fine, and nothing is or was wrong with me, and the cancer is in the parallel world which I am momentarily stuck in.  And I want the parallel world to end and for me to just live in the now, and the now does not consist of hospital appointments and chemo and cancer.  The now is a place of health and happiness and not worrying about it.  The now is not 3 monthly check ups where I want the good news so badly that it hurts - that I've got the results to come off the drugs. The now is not thinking about if I will have to have IVF because I am not fertile.  The now is not being a fucking idiot and running 26 miles to raise money for a cancer charity who are so close to my heart, because I don't know about them.  But the now is a dream, and I live in the parallel.  The parallel where my worries are so different to my (non TCT) friends, who as wonderful as they are, don't understand.  The parallel is a place of wanting but having to wait.  The parallel is where I run 26 miles and I take with me those who are not here any more.  I take with me those who here are but are marked for life because of it.  I take those with me because they know, and no words have to be spoken to bond us.

It is because of this that every time I think of the marathon I want to cry.

XXX

Looked around a Teenage Cancer Trust Ward

So peeps,

This is not my usual after a check up post, no, you are lucky to be getting an extra one.

Well it's nearly 11pm, I know, I know, way past my bedtime and really want to get this post done so I can go to bed, but something keeps on leading me away to piss about online rather than write this.  If I were to do what my tutors at Uni would suggest, which is to reflect on why I am avoiding it, I would probably say it's because I'm avoiding it.  Nothing like stating the obvious!

So, looking around the TCT ward at UCH was amazing.  It was great to hear from the staff on the ward that they look after all their cancer kids in the way that I should have been looked after by my consultant in Edinburgh.  It also brought everything back to me as I was shown a room that was similar to the room I had in Edinburgh.  The difference being the amazing view of London from the window and the bathroom- it was massive!  Also the nice wall paper on the ward, the kitchen, and chill out area with a TV, play station, pool table etc.  Part of me is so glad that I had my own room and was so isolated.  The other part is really angry that I didn't have access to a TCT ward and the correct care from the consultant.

The reality of it all was also brought to my attention with June (she wasn't a nurse, can't remember her role, anyways) explaining the different types of cancer that tend to appear in TYA (teenage and young adults) and when she came to Leukaemia she said that basically they get admitted and are there for at least 6 months without leaving (or don't....)  It made me really realise how lucky I have been, and that whilst I say that part of me wishes that I'd had a bone marrow transplant, the idea of being on a ward for that time is not what I want, or wanted.  There was also a guy there (I think 20, can't remember diagnosis) and he looked so miserable and when I smiled at him, he didn't smile back and I thought, fuck that. Fuck being tied to a hospital bed for 6+ months because I feel too ill to move.  Fuck having no hair and being bloated from the steroids.  Fuck not being able to go and sit in the sunshine (admittedly not for long as even when wearing factor 30 I still burn).  Fuck not being able to pop home when I feel like it and being with my family, friends and my cats.  I've never really realised how lucky I've been until Monday morning. And I feel like a bit of a twat for wishing that I had had different treatment.  Yes my life is not always what I want it to be, and yes, I completely exhausted myself because I did a 'normal' amount of things at the weekend, so have had to take it easy this week, but my life is still mine, and I am in no danger of losing it (yet).  I have been so lucky and have taken it for granted.

On a slightly happier note, here is a pic of my name from the credits of the film 50/50.

As always, with so much love, and a slightly wobbly smile,
XXX