3 hundred and 65

So lovelies another post,

It may be because I have an essay technically due tomorrow morning (I have a 10 day extension on all my written work, so the pressure is less) which that means that I am sitting in the library gazing out of the window over the roof tops of Marylebone with the sun streaming in the window, instead of doing a reference list and a framework for the essay.

It may be that I find beautiful days in the autumn/winter more evocative than sunshine the rest of the year.  I'm not sure why, maybe it's because I am more grateful of the sunshine now, and it is something that we 'should' have in the spring and summer.  Although, I am English and have lived in the UK my entire life, so should now at the grand old age of 28 know that, just because it is spring/summer does NOT mean that the sun will shine.  Maybe its because the light is different at this time of year that I find London more beautiful when the sun is out.  Or maybe I'm just being a bit pathetic at the moment......

I don't know if any of you reading this know about the project 3 hundred and 65 (www.3hundredand65.co.uk) which I have mentioned before I'm sure, and in fact have been a part of it.  It's an incredible project for Teenage Cancer Trust which as you all know, is rather close to my heart.  I don't know if it's just me, but recently the drawings have become a lot more serene and beautiful and a calmness has descended upon them.  I'm not going to lie, I have become a bit lax at following the story itself recently, so am completely lost as to what's going on, so I may be completely wrong about my interpretation of the drawings.  I may also have this interpretation due to myself and the journey I've been on.  I think also my cancerversary is rapidly approaching and whilst I celebrate it, and do in some ways rejoice in it, I also become more melancholic and retreat within   I suppose this is only natural.

I am still also processing what I have recently discovered about myself and how angry I am, which is very much at the forefront of my mind, and I am now very aware of how I react to things.  I think this is also keeping everything fresh, which is good as it means I have to face it and deal with it, but it's a lot to deal with.  Part of me is also pushing it away so I don't have to deal with it.  A constant internal sea-saw.

Days like this, cold but bright and sunny always take me back to my time in Edinburgh, and I always think of how beautiful it is and remember walking across the bridges on my way to lectures or to meet people.  Walking and watching and smiling.  The wonderful memories of that place.  Also my diagnosis and the shock of it and the shit I had to go through.  A fabulous place and time tainted by awfulness.  Maybe this is why I am very much in my head today.

The drawing of November 29th (http://www.3hundredand65.co.uk/the-story/november-29th/) really resonates with me.  It's sometimes how I feel - alone with a massive expanse of land (time) in front of me, with no end in sight.  But with the old tree behind me, all the support and knowledge and wisdom I have with me keeping me going.  And the cat -the love and faithful friends I have, always with me by my side.

So with this, I really should go and do some work, and hope that with time, I can lay my ghosts to rest.

With much love, laughter and smiles.
XXX

Feeling a bit......

Well hello lovely bloglets,

It's been a while since I've done this and have quite a few things to talk about, but I seem to be overtaken recently by a melancholy. And spend a fair amount of my time feeling rather tearful.  I don't know if it's because I've discovered that a Teenage Cancer Trust unit is being built at the hospital I was diagnosed at in Edinburgh.  The change that will make is phenomenal   So due to this, memories may have been stirred from my diagnosis and my shit consultant and the pain that I apparently wasn't feeling.....  I think of how different my story may have been if the TCT ward had been there in 2007, but then my story wouldn't be mine.  I'm a firm believer in that everything is meant to be no matter how shit it is at the time.  Maybe I've adopted this because of what I went through.  I had to believe that there was a bigger reason for those dark months of being ignored and feeling like I was over exaggerating and feeling guilty phoning my consultant telling her how much I hurt and that I was interrupting her day and using up her time that should have been spent with someone else.  Maybe it's because I have carried that around for 5 years and only recently found out that I am the only person to have reacted like that to the drugs.  She should have listened to me.  I was right.  The relief of knowing that is huge, but the anger is bigger.

Anger.  Once of my modules is about the therapeutic relationship and one that I really enjoy, but fucking hell it drags up some big stuff that I need to deal with.  I've just written an essay with a plan of how to start to deal with my anger and to own it.  The time has come to stop distancing the feelings linked to my diagnosis that are not positive that I have put in a box for so long.  It's time to accept how furious I am and have been. Not only at the twat in Edinburgh but everything I've had to give up and what I continue to give up.  My life was stolen from me at 22 and I am still working to get it back.  And the guilt.  Felling guilty for feeling like this when I am still here and so many aren't.  Am I allowed to feel like this when I am still alive?  I am able to do what I want most of the time.  I am not hindered by severe side affects that mean I have to live with my parents or have a carer.  I feel like I am grieving and in mourning for the life that I had and lost, but then feel so lucky to have learnt and experienced everything that I have only because of my cancer.

This is the first time I have called it mine.  This is part of my plan to do with the essay just written.  To process and accept and embrace it, my cancer has to be mine.  Distancing cancer is not going to help me move on and ultimately forgive it.

And I'm so tired at the moment.  I was knocked out by a virus for 2 and a half weeks and I think it's still lingering.  This term has been full on in terms of work, and there is still half of it to go.  And the drugs.  I was hoping to have started the trial by now, but there are funding issues.... There is also the possibility of another, but my consultant is not sure that I'm on the right drugs for it.  I wait to find out more in January.

Waiting, I seem to do that a lot.  It links into my living in limbo land.  The end of it is so close and yet so far.

A friend of mine had brain cancer and a new tumour was discovered at his 6 month scan.  His surgery is tomorrow to find out of it is benign or malignant.

A guy I was at school with also had a tumour in his brain and said that my blogs kept him going in his dark times... How I don't know, either whinging about taking two pills a day or showing off about the celebs I've met through TCT and being indulgent with ranting on here to those of you who read it.  Feel selfish.  How can I be like this when they had a have a fucking tumour in their brain?

I only had 9 hours sleep last night, and admittedly sleep started at 2.30am, which may be why I am feeling like this.

So after this emotional vomit I think it's time for me to have a bath and go to bed.  I had a list of things to talk about which were without a doubt more positive than what this has become.  And part of me wants to apologise for that, and another part knows that I have to acknowledge this as without it, there is no moving forward  and forward is where I want to be.

So with my head up high, a tear rolling down my cheek, I go.  Until next time,
Love, laughter and smiles
XXX

Reflections on a friendship lost

Well I think it's only appropriate that I talk about friendship today. This has been on my mind recently, possibly due to an article that is in Grazia this week about myself and my little blonde bezzie- Crouch.

I have, as you know by knowing me or by reading this, been incredibly lucky with the support I have had from my friends since that Friday night when the phone rang at about 7pm. The love that I have felt from nearly everyone has been phenomenal and at times, when I stop to think about it, overwhelming. And whilst there are inaccuracies in the article (the journalist didn't phone to read through the copy before it went to print) the last paragraph sums it up perfectly. And whilst it has been brought home, once again, the love and support I have not only from Crouch, but by everyone there is someone on my mind who is no longer a part of it.

This person shall remain both sexless and nameless out of respect for them. Whilst I am going to mention how our friendship has fallen apart, it is not to name and shame. This person came into my life during my gap year, a friend of a friend, and we became very close basically from the get go. Admittedly our friendship was definitely one of playful abuse and sarcasm and to outsiders it seemed like all we did was insult each other, and in fact, did not like each other at all. This was not the case. We were very close and spent a lot of time together. It was also handy that our universities and parental homes were not far from each other meaning that we saw a lot of each other, especially during the holidays. Due to this, after my diagnosis, I think I leaned on this person too much. In retrospect I too bit demanding and wanted to see them a lot and they couldn't deal with this. This is the one person where my diagnosis pushed us apart instead of making us closer. It is also the one thing I wish I could change. Whist I am surrounded by incredible friends with so much love and support I miss this person and my depending on them so much has resulted in the friendship falling apart and being no longer.

I wish they they would read this and see how much I regret the pressure I put them under to be there for me not taking into consideration how they were feeling about me, the cancer and if they were coping with it. I didn't give them the space they needed to process everything that was happening and the more they backed off the more I tried to see and speak to them. This has resulted in them no longer responding to calls and text messages where I try to arrange to meet up or to catch up over the phone. I have now given up on trying to make our friendship work and no longer try to speak or see them. I have deleted them from Facebook and whilst their number is in my phone, my stubborn side has kicked in, and it's a number to ignore.

So forgive me for this rather indulgent ramble about the one person I have lost when I have gained so much. It's very rare in life you see how much you are loved and I get to see it all the time. Whilst many would see a cancer diagnosis as a punishment, it is for me, a blessing. I know I am surrounded by those who love me, care for me, and fight my fight with me very step of the way. And whilst this is about a frienhip lost, it is also a recognition of everyone one of you who is in my corner and with me evey moment of every day.

As always, with love, laughter and smiles,
XxX

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

A Poem and a picture for you

Well my lovely bloglets,

I had my monthly Healing Journey meet tonight, and was given a copy of a poem that I thought was rather fab, so thought I'd share it.  Here it is:  Oh, and at the bottom is a lovely Hokusai picture.
Hokusai Says by Roger Keyes,

Hokusai says Look carefully.
He says pay attention, notice.
He says keep looking, stay curious.
He says there is no end to seeing.

He says Look Forward to getting old.
He says keep changing,
you just get more who you really are.
He says get stuck, accept it, repeat yourself
as long as it’s interesting.

He says keep doing what you love.
He says keep praying.
He says every one of us is a child,

every one of us is ancient,
every one of us has a body.
He says every one of us is frightened.
He says every one of us has to find a way to live with fear.

He says everything is alive -
shells, buildings, people, fish, mountains, trees.
Wood is alive.
Water is alive.
Everything has its own life.
Everything lives inside us.
He says live with the world inside you.

He says it doesn’t matter if you draw, or write books.
It doesn’t matter if you saw wood, or catch fish.
It doesn’t matter if you sit at home
and stare at the ants on your verandah or the shadows of the trees
and grasses in your garden.

It matters that you care.
It matters that you feel.
It matters that you notice.
It matters that life lives through you.

Contentment is life living through you.
Joy is life living through you.
Satisfaction and strength
are life living through you.
Peace is life living through you.

He says don’t be afraid.
Don’t be afraid.
Look, feel, let life take you by the hand.
Let life live through you.

 

More exciting news....things are going MY way!

Well my lovely bloglets, I had my check up just over a week ago and not only did I play the role of good samaritan and convince a young gentleman to stay and not leave I had some very good results.  I suppose I shoud explain about the young gentleman. My consultant came out to the waiting room, I eagerly held my breath hoping that she was going to call me.....but no.  When sighing out my disspointment this young man sitting next to me said I should have seen the other consultant.  Oh yes, shoud probably mention that another consultant had called me earlier but I asked to see my one instead.  So I started chatting to this guy, found out he is 25, waiting to find out what he's been diagnosed with and HASN'T TOLD ANYONE!!!!!  He told me he's been in another hospital for a month and just told his famiy he had a stomach problem......  I can't get my mind round this, but then again, it's not my position to, or to judge it.  Everyone deals with it in their own way.  I told him a bit about my story and that I'm on a pill form of chemo and haven't lost my hair etc.  I also told him about my approach - telling everyone, and how great The Hammersmith is, espeically my consultant, who it turns out, is his too.  He kept on telling me how he was going to leave because he had been waiting for hours.  I explained that this is how the clinic runs because they have to wait for the blood to be processed etc.  I also said that if he left, he would just have to come again and wait all over again.  I was then called and I mentioned this to my consultand which was good as she was seeing him next and meant she had a bit of a heads up about where his head is with it all. So that was my good deed of the day.  And I'll tell you something, the wait was worth it because.......drum roll please.........  my platelets are....... NORMAL FOR THE FIRST TIME IN 5 YEARS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  AND the Leukaemic rate had dropped from 0.015% to 0.014%, so am really looking forward to my next check up to find out if the rate has dropped more and to see what my platelets are doing.  And you know what, the fuckers had better still be up! What else?  This last week I have been at home for reading week which has been really lovely.  Have had so much work to do, so not a proper break, but at least I haven't had to cook or get up early for uni.  I've also been good and been running.  I did 16 miles in 2hrs 40 and a doing 17 miles tomorrow.  The marathon is 8 weeks today, EEK!  I will (fingers crossed) be fine.  I just need to work out how to not get a stitch.  I know it's to do with a muscle not getting oxygen, so am going to sign up to a pilates place in Clapham which is really good, did a taster session and couldn't move the next day - I hurt so much!  So doing that shoud help my core muscles and the curve in my spine- it was flat at the end of the lesson which is amazing.  I hope this and running with a (very sexy) camelbak (or is it camelpac?) anyways, its a small, lightweight backpack with a water bladder in, so I can run with water without having to hold it in my hand, will help prevent them.  There is no way in hell I am dropping out of it just because of a stitch.  I also don't really want to run nearly the entire length of it with one as it hurts and slows you down.  Anyways, enough of that. I have been asked to speak at next year's Find Your Sense Of Tumour (TCT conference) which is VERY exciting.  It will also be 5 years after I came into contact with the charity at the event that it happened at.  I've also been asked to join a peer review board for teens and young adults when hospitas have their reviews, which is masively exciting as it means what I say/ask will have a direct impact on how the hospital treats its TYAs. What else?  Probably a lot.  There was excitment at the prison a coupe of weekends ago, there was a helicopter circling for at least an hour with a spolight sweeping part of it, but I never found out why.  Also the prison was very quiet so I don't think anyone had escaped.  Maybe it was somene who had gont onto the roof from outside?  Or just a practice?  I don't know.  If you do, please let me know!! Uni is going well, have passed everything so far.  Some by the skin of my teeth!  Need to work hard before my physiology exam in the summer, but it's my only exam, so that helps and means I can just focus on that.  I have a short answer test on Monday for my massage course and then the practical exam before easter, which is my only other examined course in as much as I have a specific test to do.  My clinic module is examined by a portfiolio I have to do and by attending the minimum amount of hours needed.  The other 2 modules are just essay based.  It's quite nice not having loads of exams to worry about, and hopefully the one exam won't be at the beginning of the exam period, so I can have a bit of an easter holiday.  Then I suppose I need to get a summer job.  I'm going to see if I can just earn through  massage with people coming to me/working in a clinic etc Having said that I haven't had to cook this week, my parents are not here, they went to stay at my Godfathers last night so I have to go and put the chicken in the oven so I have something to eat for lunch. So lovely ones, oh hang on, here is my link, PLEASE PLEASE PLEASE SPONSOR ME!!!!!  And if you have already, THANK YOU!!!! www.virginmoneygiving.com/katherineruane Lots of love, laughter and smiles, XXX

Speaking for Macmillan

Well my lovely bloglets,

Just thought I'd do a little update as I was asked to speak for Macmillan on Friday at RBS.  It was the final round of a quiz for all the London Branches and it was a hilarious evening, due to 2 employees who were very funny with very quick banter going on between them.

Was a bit weird not talking about TCT, but unfortunately I think the day has arrived that I'm too old for them as I haven't been asked to do anything since September.  Waaah, wail, moan, sob etc etc etc  Whilst this does make me sad, because due to my experience with my Edinburgh consultant, and being into Alternative Therapies, I think what TCT does is truly amazing and leading the way, I (sort of) understand why they no longer use me.....  Anyways, this is not meant to be a rant or lament about why I'm not longer TCT's most favourite and famous cancer kid.

I also tend to forget that Macmillan were amazing and paid for my egg storage when I couldn't afford it, and it could have potentially been a complete nightmare if they hadn't written me a cheque, if the hospital decided than non payment=defrosting!  I also suppose that I was also so vocally on the TCT bandwagon as very few have heard of them, or know about what they are doing, whilst everyone has heard of Macmillan, and has an idea of what they do.  But is doesn't stop Macmillan from needing to raise money etc So I really enjoyed speaking for them, and just approached my story from a slightly different angle.  I was also given a bunch of flowers, which was slightly embarrassing, but it was very nice to be given them regardless!

So, I think that's about it for me.  Ran 13.5 miles yesterday, had to do some walking because of a bad stitch that I didn't seem to be able to shift.  If anyone knows of a good way to stop them, PLEASE let me know!  I also have destroyed my feet slightly by doing it in new trainers, and have 2 epic blisters.  Quite tempted to take a pic and put it on here.....think I might save that til I've run the marathon.  Mmmmm, skanky running feet!!!

Oh, and on that note, I'm going to be starting to mention my sponsorship link every 5 minutes, so if you can, please, please donate as I have to get a minimum of £2,000!  And send it to all your buddies, relations etc.  I've even not sworn in this blog, so you can let them read this too!!!!!!!!!!

http://uk.virginmoneygiving.com/KatherineRuane

Lots of love, smiles and laughter as usual,
XXX

5 Years Today - Can't Believe it!!

So my little bloglets, believe it or not, today is my 5 year cancerversary, and I can't believe how quickly it has come around.

I don't feel as, not low because that is not right, but on previous anniversary's I have felt a bit melancholy. Maybe it's because after the first one, I had left Edinburgh and didn't really know what I was doing in terms of a job or what direction my life was going in. I remember that 2 years ago, it came out of nowhere when I was really miserable with my job and just being dumped.....but this year I seem to be in a really good space.

Whilst I'm not going to lie, I have been running around slightly like a headless chicken with a stupid amount of work to be done - hence being so quiet on here, I finally feel like I am doing what I am meant to be doing AND enjoying it, even all the science! And Christmas wasn't really a holiday or break from uni work as I wrote essays in the car whilst we drove all over the South of England seeing relatives, but we were together, all of us as Milo was over from Singapore, so whilst not that relaxing, Christmas was a true treat.....going slightly off topic.....

I also should mention my family at this point, because without them, especially my mother who has been incredible beyond belief, it all could have been a very different story. The love and support I have had from everyone, friends, family, my current consultant, the nurses when I was in hospital, and everyone at the Teenage Cancer Trust has been simple mind blowing. TCT have enabled me to get my story out there and to have a real effect getting companies to support the charity so every young adult will get access to a TCT ward and won't have to go through what I did with my first consultant. And also Macmillan. Recently I have been asked to do a few things for them, and this morning I was recorded for Smooth Radio for a fundraising appeal thing and I remembered how they paid for my egg storage. The relief that gave me was at the time, phenomenal and it could all be a bit different if they hadn't written that cheque. I was asked to write a sentence to sum up my experience for them, and me being me, wrote a few more than one. So to sum up my 5 year cancerversary, here it is:

Incredible joy knowing the love and support I have, incredible sadness at the life I lost, ever wondering when the day will come when I can come off treatment. Losing my innocence and growing up so fast, a telephone call that changed everything forever. A whirlwind of a journey, and one I would never change if I had the choice again.

So to you all, with tears threatening to spill, thank you for all your love and support. It is you that have kept me going through it all, and the reason I continue to do so.

With all my love, smiles and laughter on this very special day,
XXX