6 years and latest check up

So it would appear I have been putting off writing this as it was my 6 year cancerversary on the 19th of January and my check up nearly 2 weeks ago.

I know there is a lot I want to say, but have gone blank..... isn't the mind good at self protection...

I've been a bit of a wreck .  Christmas wasn't really a break as I got home exhausted after the term ended and both parents had the nasty flu virus.  I escaped it as I had it in October instead.  Ironically the week after I refused the flu jab.....

So when I got home instead of being a complete child and expecting everything to be done for me, I had to do everything whilst the parents were bed bound.  It would have been ok had the last few weeks of term not been manic with a nasty essay and exam deadline.  I also had an essay due and an exam on the 7th January, so I think I only had Christmas Day and Boxing Day off.  This meant that I was exhausted when I got home, continued to be exhausted and couldn't take time off to-recharge.  I then started to not sleep properly.  I was getting around 7/8 hours a night, which is fine for a 'normal' person, for me it is not.  I ideally need between 10 and 12 hours.  After about a week at home I noticed pain in my legs.  I was thrown back to when I was newly diagnosed and was highly intolerant to the chemo I was on then and ignored by my consultant, as the beginning pain was the same.  This then meant that I was sleeping even less.

Exam and essay done and I'm still not sleeping properly, I am sleeping a bit better.  I am now overwhelmed with the amount of work to be done this term.
Next major essay is due in the same week as an exam for which I have to hand in an extensive reading list of everything I have read to prepare for it. I can next have a day off the week beginning the 18th March.

I had my check up 2 weeks ago tomorrow.  I walk into my consultants room and begin to explain how I've been and start crying.  This is the first time this has happened in the 5 years I have been seeing her and am now the owner of some Lorazepam.  I haven't taken any....yet.  I have been blood typed for the protein injection trial and the hospital should find out tomorrow if I'm a match or not.  If I'm not, the halving my drug dosage for a year and then hopefully coming off it trial should be starting around July/August.

There is someone on my course who constantly whinges about having migraines and had an hour's one on one bodywork session with a tutor on Monday to help make her feel better.  I am very close to telling her to 'shut the fuck up and go home if you feel like that.  Try dealing with fucking CANCER!'

I thought this would be much more about how I'm feeling than the rather removed and distance post it has been.  Maybe everything is just a bit raw at the moment to get close to.

I'm still exhausted - can't really remember how if feels not to be tired.  I'm sick of having to juggle my life and to not have a social life because after uni I can't face it.  I'm just a bit sick of it all now, I'm 28, young and single meant to be having the time of my life in London and I'm so restricted.  It's just all a bit shit really.  I'm still living in a parallel world and I'm bored of it.  Life is passing me by and I can't fully join in and it's not fair. I'm so angry about it all and then feel so guilty because I'm still here and so many aren't.  I recently found out a girl I did a TCT photo shoot with a while ago is now terminal and she is younger than me.  And I wouldn't change it, not the diagnosis because it's made me, me.  It's just time to move on and to come off the drugs. It's all I want. Such a small ask.  Then I can stop mourning the life I lost and begin living again.

I left school 10 years ago this July.  If you asked me where I would in 10 years, I would never ever have remotely guessed it's where I am now.  I forever live in hope.  Maybe 2013 will be my year.

XxX

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