A diary of a 27 year old going through Cancer x
 
 
 

Hi all,
I’m not sure if anyone will still be reading this but here I am just in case! I have been ‘told off’ a few times recently by people telling me I should still be writing…oops, sorry! I always intend to but I’m happy to say that I’ve just been too busy with non-cancer related things to come on here! Also, I think who would want to read it now, when (hopefully!) all the drama is over! But, anyway, I’m told that there are people out there who are still interested and don’t get to hear my updates in other ways or see me so here I am!

The last few months have been busy with holidays, preparing to get back to work, fundraising, wedding planning, more holidays, more fundraising and trying to find some kind of normality….combined with LOTS of physio, it doesn’t leave much time for me to blog! I’m also finding it hard to find the right balance between being busy and resting and find myself exhausted regularly after I’ve been over-doing it! But I’m making up for lost time!

This will only be a short post as today is one of my exhausted days and I’ll use this as a tester to see if anyone comments or gets in touch…then if you want more, I’ll write more!!

Yesterday was a big day for me. I did Race for Life, which I’ve been determined to do since last year when friends & family did it as TEAM SCAMP and I was unable to even go to watch as I was stuck in hospital. So I’ve been working hard on physio to strengthen my leg and improve my walking and I did it! TEAM SCAMP was much bigger this year, lots of my friends and family were there to support me so I’m so grateful to them and lucky to have such a huge support. Plus everyone who’s sponsored us too…we’re on £2266 at the moment and this still seems to be increasing… it’s not too late to sponsor us at www.raceforlifesponsorme.org/teamscamp2010 - every penny counts!!

I also did a pink party and fundraiser about 6 weeks ago to celebrate my survival and raise money. That also raised nearly £2000 which I’ve split between Cancer Research, Macmillan, Bone Cancer Research Trust and Sarcoma UK.

So, I’m not too far off being a fundraising manager the last few months and it’s made me realise it’s hard work but I really enjoy doing it and it’s really satisfying when you know what a good cause you’re working towards and how important the money is to these charities…

…but now I’m going to have to put fundraising aside for a while as I need to focus on getting back to teaching. The plan is for me to start back in September on a phased return probably starting with just 3 half days and gradually increasing. This may sound pathetically easy to all you healthy people, and part of my mind still thinks it seems so easy, but the rest of my mind and my body is petrified that I’ll even be able to manage that after all I’ve been through! & being in charge of 30 8 year old’s learning, well-being, enjoyment etc. is not an easy job by any means! But another part of me is equally excited as I am petrified so time will tell and we’ll see how it goes. My headteacher and my school are being really supportive and flexible so that’ll help a huge amount in my return to work. This Friday I’ll meet my class and teach them for an hour with the other teacher I’ll be sharing my class with, eeeeeeeek!! Wish me luck!!

Right, that’s all for now as my brain and body are tired! If there’s anyone reading this, I hope you’re doing well and enjoying the sunshine, this summer’s weather seems too good to be true!!

Cara (Scamp) xxx

Posted May 7th, 2010 10:36 am by Cara | Comments: 16 Comments

Ola!  (that’s hi in Portuguese in case you didn’t know!)  Yes, that’s right I’m in Portugal so you should feel very priviliged that I’m writing a post while I’m here!  There’s one reason for this…it seems the sun has gone to my head and turned me to writing poetry!  I couldn’t sleep last night & after finding a notebook to starting writing chapters for my book (yes, that’s write, it’s now officially a work in progress!  Even if it’s never published & never read, I still want to write it)  Anyway, so that’s what I was doing, when this kind of poured out of my head and onto the page.  Now, I know what you’re thinking…no I’m not a secret poet and I haven’t been writing poems secretly all this time.  It just came from nowhere and I don’t know why but it did so I thought I’d share it.  & don’t be too harsh on me as I haven’t written a poem EVER unless being told to, i.e. at school so I’m reckoning it’s been at LEAST 10 years, probably more like 15!

Anyway…right…here goes…

I didn’t know it ‘d be this bad

I didn’t know I would feel this sad

Filling my thoughts everyday

Sometimes not having anything to say

Fearing and dreading it’s not too late

This can’t be it.  This can’t be my fate.

Too much for live for.  There must be more…

I need to be here with those I adore.

Will I wake up?  Will I see them again?

Why can’t somebody stop this pain?

At the end of this tunnel there must be a light

I have to keep going.  I must keep up this fight.

I want to be here another day…week…month…year

My eyes fill each minute with tear after tear.

Surrounded by so much care, so much love

I want to stay here, not look down from above.

 

The poison inside me is making me sick

I have to endure it.  It’s my life I pick.

I’m not an inspiration.  I don’t feel brave.

But I have to beat this.  Too young for a grave.

How do I beat it?  I’m not fighting a war

The hurting inside me, emotions so raw.

Take it all out, leave me a scar

Life, to me, still seems so so far

Chemo and sickness and hospital beds

Hairloss and headscarves and hospital beds

The look on their faces screams ‘oh she’s so young’

Guarding me, above me, angels are hung.

Always believing what’s meant to be will be

But still the wondering then why is it me?

 

So much to lose.  So many reasons to care,

How is this happening?  How is this fair?

Look to the sunlight.  Leave the shadows behind.

Around the corner you don’t know what you’ll find.

Day after day reaching closer to the end…

How will I cope?  I’ll still need a friend.

Rebuilding my future.  Learning to walk.

Planning for happy times.  Loving to talk.

Nothing ventured, nothing gained

But those all around me so hurt and so pained.

Inside and out I’m not who I was.

It’s time to show this cancer who’s boss.

 

Deep down all I want is to be me

To live my life and to be free.

This is no journey down a country lane,

It’s a rollercoaster ride on a runaway train.

No looking back.  No letting go…

For a rollercoaster, why is it so slow?

Scan after scan.  Test after test.

I’m trying so hard.  I’m trying my best.

Keep trying to smile.  Stay ‘positive’

Why won’t it leave me?  I just want to live.

No pausing for breathe.  My mind cannot rest.

Please cancer do not spread to my chest.

Keep away from my lungs.  Let them be clear.

I’ve lasted this long.  It’s been a whole year.

Can I look to the future, leave this in the past?

Wish I knew how long these feelings would last…

 

Chemo over but not hip hip hooray…

Why am I feeling I wish I could stay?

A cancer patient has been my job for so long,

Can I move on?  Can I keep being strong?

So many loved ones who I know are there,

Whether or not I have any hair!

Letters and cards and parcels in the post,

What is it that I’ll miss the most?

Worry that people now think I’m alright,

But still lonely and lost in the cold of the night.

IT’s left me broken and battered and worn,

But I won’t be beaten.  To Chris I have sworn.

Our future together forever we’ll stay.

Living, laughing, loving day after day.

Soon to be Mrs I’ll walk down to aisle…

Seeing him there, making me smile.

A family of our own, always our dream,

Whatever happens, we’ll still be a team.

But please cancer, don’t take our dream away…

All we can do is to hope and to pray.

With all said and done, it is what it is…

But life before cancer I always will miss.

I may feel I’ve been changed inside and out

But life is for living.  That’s what it’s about

 

And that…I promise…I never will doubt…

 

So there you are.  My life since cancer in a poem.  I never thought I’d be writing that!  But then I never thought a lot of things would happen & they have, so I’ve stop trying to figure out or imagine what might happen next and learnt just to enjoy the day for what it is.  Precious.

My poem doesn’t have a title because to be honest why does it need one?!  & I didn’t start with a title because I didn’t know I was writing it until it appeared on the page!  But if you think it needs a title, post your ideas here! …

& if you think the poem’s a load of crap…keep it to yourself!!

Love and sunshine (I won’t be too smug, it’s due to rain Sunday!) xxxxxxxxxxxxxxx

Posted May 2nd, 2010 9:20 pm by Cara | Comments: 2 Comments
Hello and sorry for my lack of blogging recently…Do I have any readers left?!  An update…after over a year since my cancer diagnosis…
So the last few months for me have been ‘recovery’ time for me & I’m as impatient as ever to get back to ‘normal’…whatever that means!  I’m striving to get my life back to some kind of ‘normality’ where everyday things are more of a concern than hair growth, physio and surviving!  I’m getting there but it’s harder than I ever imagined and I really think that the part when treatment’s over is massively underestimated and more difficult phycially and emotionally than anyone would think.  I sometimes feel I should be able to pick up where I left off before cancer knocked me off my feet & took me on this crazy rollercoaster ride.  Now I’ve been dropped off the rollercoaster I have to find my feet again somehow.  Anyway it’s early days and I’m trying to just enjoy life and take it easy.  My immune system’s still ridiculously low and at the moment I’m back in bed poorly with a sinus infection & being sick.  I’m so sick & tired of feeling sick & tired!  There should be some justice in the world - if you have cancer and go through so much chemotherapy it should give you some kind of free pass to never get poorly again!! If only! 
Anyway, as I said, the happiest news in a long time is our engagement & the surprise proposal so we’re now starting to plan our wedding for August 2011!  It’s weird because obviously I’m SO happy and there were plenty of times I couldn’t ever imagine getting to this point and didn’t know if I’d even be here to be getting married.  But it’s kind of bittersweet because at the same time I’m dreading trying wedding dresses on because of the lack of hair on my head and the extra weight I can’t shift from all the steroids I was on and lack of exercise I’ve had since surgery.  I never really imagined trying wedding dresses on with wigs & the fact that I have to makes me so angry with the cancer for doing that to me.  But then I think, at the end of the day, what’s hair?!!  It’s so unimportant in the grand scheme of things that I then beat myself up for even worrying about it!  I guess that’s part of getting back to ‘normal’ though, thinks like the state of my hair and the size of my bum becoming the biggest things I have to worry about, rather than whether your stay alive, get through your next cycle of chemo or ever walk again!  Girls…we’re never happy!
 
Anyway, although this period of time is proving to be harder than I maybe expected, it’s still a hell of a lot better than this time last year, however you look at it!  I’ve just been on holiday with Chris and all my family - mum, dad, sister, brother in law, 3 nieces and my brother for part of it.  It was lovely to get away, to spend some time together and to see the sunshine.  We went to La Gomera, an island in the Canary Islands that noone’s ever heard of!  Due to the volcanic ash we got stuck there nearly a week longer than we’d planned.  It was a strange experience and it all went a bit crazy with everyone trying to get on flights or find random ways of getting home!  My brother paid hundreds of Euros to fly to Barcelona, spend 2 nights there and the fly to Milan and eventually to London….the main reason he wanted to get back was to play football in a cup final!!  I would expect nothing less from Robin!  My brother in law needed to get back for his twin brother’s wedding, so as soon as UK airspace opened, he booked himself on a flight to Manchester and then travelled back down south with his parents.  The rest of us waited until the next available flight could take us straight home as planned.  So me, Chris, my sister and her 3 girls flew back on the Saturday night, a late flight but we didn’t have much choice!  Little did we know, about an hour and a half into the flight, the pilot would pipe up with an announcement that we’re going via Malaga to pick up stranded passengers!!  All very random and a longer journey than planned but we eventually arrived home at 4am Sunday morning, after leaving where we were staying at 3pm Saturday!  A long journey for a short distance!   It was all a mad panic for some people and for lots it just seemed like a disaster and the worst thing that had ever happened to them, especially when watching Sky News or BBC News 24/7 for updates!  I guess for lots of people maybe that is the worst thing that’s happened to them…but being stuck on a beautiful island in the sunshine, with free accommodation (the place said we could stay free of charge as we were stuck) isn’t exactly disastrous in my book!  I know it was worse for families with children who needed to be back at school and for people who needed to get back to work and were losing money by not getting home & maybe it’s easy for me to say that it wasn’t so bad!  But I just couldn’t stop thinking about ‘this time last year’ and there was no comparison!  The day we were due to fly back was 20th April 2010.  On 20th April 2009 I was told I had cancer.  I was told I’d need at least a year off work.  I was told I’d lose my hair.  I was told I’d probably be left infertile from the chemo and there was no time to harvest eggs because it was a life or death risk if we didn’t start chemo immediately.  Basically I was told that my life as I knew it was over.  Now, being told that, or getting stuck on holiday…hmmmmm it’s a tricky one but I know which I’d choose everytime! …
 I feel like I’m always going to feel like this in any ‘bad’ situation…where for some people it could seem awful, I’ll always be thinking ‘oh well, at least you haven’t got cancer’ …sometimes I feel like a total bitch for thinking like that and sometimes I keep my thoughts to myself to spare other people’s feelings!  But even if someone had broken their leg for example (a story I heard recently of one of Chris’s football team) - he has to have operations and can’t exercise for 6 months….all I could think was ‘OH WELL!’  It’s hardly the end of the world!  I guess that’s the thing about experiencing ‘the worst’, you can only appreciate something being not too bad if you’ve experienced something much worse.  I’m sure for that footballer, breaking his leg seems like the worst thing possible, but me and many others know first hand that it’s not!
Since my ‘one year cancer anniversary’ has passed, I’ve been doing a lot of ‘this time last year’ thinking.  I know it might not be helpful for me but I can’t help it and thinking back is almost like going through it all over again.  It’s made me more emotional again and made me realise that I don’t think the realisation of ‘I’ve had cancer’ will ever become normal, no matter how much you think you’ve got it in check, it always has the power to come out from nowhere and smack you in the face (or the leg!) again and knock you down as if you’ve gone right back to the day of diagnosis.  It’s not pleasant and it never stops being shocking.  But at least I can now find myself saying ‘I HAD cancer’ not ‘I’ve GOT cancer’, something which took quite some adjusting to!  Anyway this time last year, on this day, I had just arrived home from my first chemo session.  I had been in hospital in Oxford for nearly a week having the chemo and then feeling well enough and stopping puking long enough to face the journey home!  It was a sunny day (some kind of miracle for a bank holiday!) and as we drove back through Fleet to get to our house at the time, the pubs & restaurants and streets were full of people out eating, drinking and enjoying the freedom of a Sunday night out without a Monday morning at work.  I’ve never ever and I hope I never will again, been so overwhelmed with the feeling of anger and jealousy.  I should have been out enjoying myself.  I was 26, it was May Bank Holiday.  What the hell was happening to me?  I went straight up to bed surrounded by sick bowls and we had the windows open as it was hot (again, a miracle for Bank Holiday!)  I remember so clearly lying there feeling worse than I could ever  imagine feeling (little did I know it would get much worse over the coming months!) and I could hear people in neighbouring gardens laughing and drinking.  I assume they were having a BBQ with friends or family and why not?  It’s Bank Holiday Sunday and it’s warm and sunny enough to sit outside.  I didn’t think that at the time.  I can remember ALL I could think was ‘WHAT are they laughing at?’  They just seemed to be laughing and laughing and laughing and I remember thinking ‘ what could POSSIBLY be funny?’  ‘What is there to laugh about?’  Anyone who knows me will know that I ALWAYS find something to laugh about…often things that noone else would laugh about!!  But at that time I just could not imagine ever laughing again.  I’ve got cancer, I’m on chemo, I’m losing my hair, I’m sicker than I could ever imagine, I might lose my leg, I might lose my life.  WHAT could possibly ever make me laugh again?  The truth is, lots of things made me laugh again.  Even things in hospital, even things involving my sickness, my hair loss and my dodgy leg.  Because if you can’t laugh, what can you do?!  So at least tonight, even though it’s Bank Holiday Sunday and I’m yet again home feeling poorly while everyone else is out drinking (this time even Chris is out drinking!), at least
1) I’m still here
2) I can laugh (& will laugh lots when I watch a chick flick in a minute, with no Chris to moan about what I’m watching and want to put some boy film or the football on!)
3) I can say I HAD cancer, not I’ve GOT cancer
4) I’ve got short horrible boy/lesbian hair but at least it’s growing & not falling out
5) We have a much bigger house & even if I did have the windows open, I wouldn’t hear the neighbours laughing all night!
…unfortunately though it’s cold and it’s raining and last year’s miracle weather for May Bank Holiday has not been repeated!!!!  You can’t have everything though!
Me being poorly again now just goes to show how low my immune system is… I’m so bored of feeling poorly and taking it easy and being reminded to rest all the time.  I just want to live again and be some kind of ‘normal’!  Anyway I will get there, I just need to give myself time and be patient I guess.  I’m waiting to hear about my return to work as a primary school teacher.  I’m hoping I can start back on a phased return in September…something that sometimes excites me and sometimes petrifies me!  Time will tell though, what will be will be.  I’m due to fly to Portugal early Tuesday morning with a good friend & one of my bridesmaids, Gemma, and Lou another good friend & bridesmaid is joining us on Saturday.  It’s been touch & go whether I’ll make it though as I’ve been in bed for days, with my only trip out being to the doctors.  I’m feeling alot better today though and hoping to be even better tomorrow and ok to fly by Tuesday morning…cross your fingers for me.  I’m looking forward to some more sunshine and some time away with Gemma & Lou but just wish I’d had longer at home to rest between holidays…pesky volcanic ash!  Anyway I’m sure we won’t do much once we’re there…sunbathing and…well, sunbathing!!
 
We have no further news in terms of my fertility and again I suppose it’s early days and I need to be patient.  I just wish I could see the future and know if everything’s going to be ok though.  My desperation to be a mum only increases all the time though.  On holiday with us were my 3 nieces who are 7, 5 and 2 and I absolutely adore.  I spent loads of time with them and after being with them everyday for nearly 3 weeks, I long to be a mum more than ever.  It’s made me more and more emotional about it and it’s on my mind all the time.  I know there’s nothing I can do and time will tell and everyone keeps reminding me, it was more important to keep me alive than to protect my fertility.  As logical as all that is though and I know it’s true, it doesn’t make it any easier to accept it and I don’t think I ever will.  I will never give up hope though and have heard many amazing, inspirational stories that give me the hope to cling to.  I know I need to be more patient and I forget it’s only been 2 months since I finished chemo so I need to stop being so hard on myself and give my body and my mind the time it needs!
I’ve recently heard about Lisa Lynch, who had breast cancer at 28.  She’s now 30 and she was in Glamour magazine.  She has a blog www.alrighttit.com !! & has just had her book published - The C-Word.  I haven’t read her book yet as I only got it today, but have been reading some of her blog and she’s very funny & witty and I can relate to alot of it, although it’s a totally different cancer, there are lots of similarities.
On Saturday 29th May I’m having a pink (of course!) party & fundraiser, to celebrate the end of my treatment and to raise money for Cancer Research, Bone Cancer Research Trust, Sarcoma uUK and Macmillan.  It’s at our house in Fleet in Hampshire.  If anyone’s interested in coming, please contact me at cara_yapp@yahoo.co.uk for further details.  Or if anyone has any fundraising ideas or can donate raffle prizes to help us raise money, please get in touch.
Thanks for reading & happy bank holiday xxx
Oooh, how could I forget - some important news from holiday!
I didn’t wear a wig at all on holiday and spent 3 weeks ‘baring’ my head and newly growing hair!  With just headscarves at night…
The hair on my legs grew back bigtime (great!) and in desperation to get rid of it, we ventured to the local chemist in the nearest village on the island and managed to buy some Veet!  I hadn’t used a razor, wax or hair removal cream for a year…it was kind of  nice to need it but kind of a pain!
There were hundreds of steps where we were staying so having to do them everyday was great physio and I can now do stairs normally which I couldn’t do before holiday!
I still managed to tan, despite having to use high factor and be careful in the sun as the chemo leaves your skin sensitive to the sun for at least 6 months…

Breaking News!!! We’re engaged!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Chris proposed on Thursday night and we’ve done much celebrating since, hence it taking me this long to post this on here! I won’t write the whole story on here now but I WILL soon! (for those of you who haven’t heard it yet!) & all I can say is I know it’s a cliche but it’s also the pure truth…Chris HAS made me the happiest girl on the planet! I can truly and genuinly say I am happier than I’ve ever been, despite all the awfulness we’ve been through recently. Suddenly I feel so different and am so much more able to look to the future now & put the cancer phase of my life further behind me…well, us!
I’M SOOOOOOOOOOOOOOOO HAPPY!!!
Lots of love xxxxxxxxxxxxxxxxxxxxxxxxxxx

A friend of mine’s husband and son are raising money for Cancer Research UK in my honour when they sail in the Round The Island Race on Saturday 19th June.  It’s a 50 Nautical Mile race anti-clockwise around the Isle of Wight.  It should take them between 8 and 10 hours.

I don’t know much about this event but I’m touched that they thought of me and asked me which charity I’d like them to do it for.  So if you’d like to know more and help them reach their fundraising target, please go to:

http://original.justgiving.com/bradosman

Thank you!! xxx

My story is now on the Bone Cancer Research Trust website:
http://www.bonecancerresearch.org.uk/storiesP.shtml
and also a link to this site is now on there:
http://www.bonecancerresearch.org.uk/links_blog.shtml

Posted March 18th, 2010 5:15 pm by Cara | Comments: 1 Comment

A quick update…
Last Friday I had my last clinic appointment with Prof and the team for a while. It was the last one in the cycle that we’ve known for so long and marked the official end of my chemotherapy. We had joked for a long time that Prof would get me pink champagne when I got to the end of my treatment & it’s been an ongoing joke. Well he actually did! He produced a lovely bottle of pink moet from under his desk! I had bought them all pink presents (had to be pink from me!) and made pink cupcakes for them all to have & also a load more of pink cupcakes that I took up to the ward for all the nurses who looked after me & who I’d grown to know so well in the past year. It was so strange going up to the ward as a visitor and not as a patient, it all looked so different…just yet another surreal experience to add to my list! I wonder when life will STOP being surreal sometimes! I then took Chris, my mum & dad for lunch at the Compleat Angler in Marlow, which is where we went for lunch on the day I was diagnosed. It was very strange going back but I felt it was very fitting that I’d gone full circle, well sort of! & I wanted to do something to say thank you to them all. Although I can never thank them enough for how amazing they’ve been…I keep trying to!

At the weekend I had a busy one catching up with family & friends and on Sunday we did roast for 12 for Mother’s Day and had a lovely family filled day. By Monday I was shattered & needed to admit defeat that I’d been overdoing it and needed to rest…but I couldn’t do that as I had to go back to Oxford again to see the surgeon this time and have some more scans. I’ve been in a lot of pain with my knee for a long time and had just become use to it and almost resigned to the fact that that’s how it would be now…especially with the chemo still going on, I was never strong enough to do anything about it, I just put up with it! But recently I’ve come to realise that actually I can’t and shouldn’t have to live with such pain and that really I should get it checked out. Hence an earlier than planned return visit to see the surgeon. He was very quick to diagnose the problem when I described it and he examined my leg. I can’t remember what he called it now, I will look it up again at some point, but basically it’s my knee cap grinding against and clashing with the metal prosthesis that’s causing the pain and the ‘crunching’ when I straighten and bend my leg. It’s not uncommon apparently and hopefully when my muscles strengthen enough, they will pull the knee cap back away from the prosthesis and this should stop happening. So basically it’s good news that it’s nothing more complicated but the bad news is I have to put up with the pain until it goes away, which means taking painkillers and working through the pain to crack on with my physio exercises to strengthen all the muscles and get them working properly again. At least I can focus on this properly now that there’s no more chemo. By Tuesday I really was exhausted and I slept practically all day. I haven’t been sleeping well at all recently and I’ve been overdoing things, constantly with the mindset that I want to do this, that & the other as I always feel like my freedom’s going to be taken away from me again at any moment, which of course all being well won’t happen, but that’s where my mind still seems to be at!

Yesterday was my middle niece Daisy’s 5th Birthday so I went round there for her birthday tea which was lovely as always! Then I went to a concert last night so today was supposed to be a day of rest but I’ve been busy at home washing, ironing, tidying etc. Chris will be impressed!

I’m absolutely shattered but enjoying being busy and getting some ‘normality’ back in my life. It’s amazing how enjoyable doing the ironing, having a bath or a shower, just normal everyday things can be when you know what it’s like to have it all taken away from you. BUT no I don’t enjoy ironing THAT much and no I won’t be doing any of yours so please nobody start dropping it round!
Right that’s all for now folks, back soon xxxxxxxxxxxxxxxxxx

This is just a very quick post to let you know that I am in this week’s local News & Mail newspapers…that is the Yateley, Fleet, Camberley, Farnbrough & Aldershot News & Mail on page 4.  I hate the picture but then I always hate pictures of myself!  Anyway, besides that, it’s a good article and is a good start to raising awareness of rare bone cancers and sarcomas such as Ewing’s Sarcoma.  Those of you are local may want to read it.  For the rest of you, I’ll let you know when it’s on the website, it doesn’t seem to be on there yet.

I might write more later, particularly if I can’t sleep which I’ve been struggling with recently.  But although I’m so exhausted I feel like I’m about to collapse, I’m about to make cupcakes to take to Oxford for me tomorrow for all the lovely doctors and nurses who have looked after me over the last year…that’s if I don’t fall asleep face first in the cake mixture while I’m doing it!  Wish me luck!

Will update you on my busy week soon…new physio, a visit to school, my first 3D cinema experience & a shopping trip (oops!)…

xxx

I think it’s a miracle that I’m writing this….a) because it’s so soon after my last post compared to how long it’s been between each one recently b) because on Saturday night I knocked a whole entire glass of wine on my laptop & it appeared to die instantly…miraculously it seems to be fine now! c) because normally today is the day, in the cycle that’s become normal for so long, that I would be back in hospital waiting for my chemo to start again….so I think today it’s really starting to sink in that I don’t actually have to go back for more!

Anyway today’s blog will not be about my feelings as I’m sure you’ve heard enough about that for a while!  It’s just an update really…

On Saturday night I had the first celebration to celebrate me finishing chemo.  Lots of my friends & family came to our local pub to eat, drink & be merry with me!  & very merry I was!  I had a lot of making up for lost time to do and goodness knows how I managed to keep going but lots of friends came back to our house after the pub and before I knew it, it was about 6.30 am!!  That’s when I eventually tried to go to bed…Chris had gone to bed not long before and was sparko!  I feel asleep eventually with Anna in one of the spare rooms sometime around 7 am and woke up at about 10 am practically falling out of the bed wondering where I was and where was BEAR!!  So I crawled (practically!) across the landing back to our bedroom and fell into bed with Chris & Bear but couldn’t get back to sleep so that was that!  It was so lovely to celebrate with so many of the people who have been there for me through this time.  Of course not everybody could be there but I really appreciate the people who were and those who made a real effort to celebrate with us.  It makes you realise how hard it must be if you had a huge party though, or at your own wedding - having to try to talk to 100 people must be soooooo hard!  I found it hard enough with how ever many people were there on Saturday, which was quite a lot!  When I’m in a conversation I’m enjoying talking to that person and focusing on them, not thinking about moving on & talking to someone else!  So I tried to work my way along the table early on and around the different groups of people later on.  Which pretty much worked and all my close friends totally understood anyway & I talk to them all the time so they understood I needed to talk to people who I don’t see as often!  But then really I also wanted to celebrate with those who have been there for me 100% …anyway I had a great time and I hope everyone else did too!  There are photos on facebook for those of you who are on there!  I wish I’d taken more & that my camera battery hadn’t run out :-(  Oh well!  Plenty more fun times to come…

Today a photographer from one of the local newspapers is coming.  I’m determined to get my story heard and to raise awareness of bone cancer and sarcomas so I’m been pursuing lots of possible avenues.  It’s very early days and the only one to respond this quickly was the Yateley News & Mail…it’s not much but it’s a start & you have to start somewhere!  So I sent them my story in my own words and had a telephone interview with a journalist on Friday to give him more information.  He wants to run the story in this week’s paper so look out for it & I’ll post on here when I know for sure that it’s coming out & it’ll be in there!  I’m nervous about the photographer coming as I’m so tired and look so awful!  I also keep debating whether to have wig on or wig off…as I look nicer with wig on but wig off would be adding to the story more & it’s all part of it…maybe he’ll take some of both & we can decide afterwards depending on how many photos they want to use.

So that’s me starting on my mission to raise awareness and hopefully before long I’ll make more things happen like women’s magazines, national newspapers and maybe even TV appearances.  & hopefully one day for my book (when I’ve written it!) to be published.  The quest continues… if you can help in any way please get in touch!

Well I hope all my faithful readers are ok.  I better go now as I’m not even up yet and although there’s 2 hours before the photographer comes, I need to choose what to wear, put enough make up on to cover my tiredness, choose a wig & get the house tidy!  I hope he doesn’t having me doing some strange poses or anything!  I’m scared!  This website and my link to sponsor Team Scamp (including me!) to do Race for Life this year (which by the way is www.raceforlifesponsorme.org/teamscamp2010 if you would like to sponsor us - all funds raised go to Cancer Research UK…I haven’t sent the link out yet but be warned I will be pleading for sponsorship soon!)…will both be printed in the paper with my story so there might be some more bloggers joining us soon…watch this space!

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I’m back!  Sorry it’s been so long again, I’ve been meaning to write for a while but here I am finally!  I’m now over the worst effects of my last chemo and this would usually be my ‘good’ week when I’m up and about and doing more.  It’s hard to believe that it’s not just this week and that it will continue from now on.  I still don’t think it’s really sunk in that chemo’s over as it would normally be next Monday that I’d be going back in for my next chemo.  So it’ll be interesting to see how I’m feeling next week, I’ll feel like I’ve won the lottery having so much time out of hospital!  On that note, Chris and I have started entering the lottery as I figure if I’m on in however many million to have got Ewing’s Sarcoma, I must have good odds on winning the lottery!  If only it was that simple!

Well I had my usual days of rest where I barely made it out of bed and as you will have read in my last entry, I had many mixed and confusing feelings.  As with everything, those feelings have become less alien to me and become more ‘normal’  to me (I hate that word, what IS normal anyway?!!)    Yesterday I went to see a counsellor/psychologist at the Maggie’s Centre in Oxford, which is a centre on the hospital site which offers all kinds of support to cancer patients.  I figured I may as well go and speak to him as it could do no harm and having spoken to other patients who have seen him, they said it was helpful as he specialises in talking to cancer patients.  It was bizarre for me to be  going and I didn’t really know what to expect, having never done anything like that before and I suppose I never really thought I’d need to.  Anyone who knows me will know I can talk for England at the best of times and I have great family and friends who I always talk to.  Talking helps me and I never keep anything bottled up inside because, for me, talking about it always helps me.  So I thought, what’s the harm in talking to someone else about what’s been going on inside my head?!  I know there’s often a stigma attached to seeing a counsellor and a lot of people might not want people to know, but all it is at the end of the day, is talking, which I love so why keep that a secret?!!  Anyway it was really useful in the way that he assured me that all the things I’m feeling which seemed so strange to me, are perfectly ‘normal’ in the circumstances and that everyone who goes to see him in similar circumstances, say all the same things to him.  He compared it alot to a grieving process when you lose someone, because something awful has happened to me and I’ve lost part of me (physically and emotionally!) and that it’s not that I need to come to terms with it, it’s just that I need to adjust to it and find my new place in the world.  I think that’s what I sometimes struggle with is that I was perfectly happy before and this came along and messed it all up and now I can never go back to how I was before, I have to adjust to how life will be from now on.  I know I HAVE to and I have no choice and the majority of the time I think I’m fine with that but then sometimes I can take myself my surprise and it’s as if the whole reality of it has hit me all over again…as if I’ve just been told again…and then I feel like I’m back to square one and I just don’t WANT to adjust to how things are post cancer…I want to go back to the old me and my old life, pre cancer.  But it’s tough luck basically and just a waste of time to think that!  He also hit the nail on the head, so to speak, by saying that I’ve lost any sense of immortality and any sense of taking anything for granted in life.  Of course, it’s a good thing not to take things for granted, particularly people, but I don’t think I ever did!  But it does do your head in when you can’t take ANYTHING for granted!  This is what I’ve been trying to say recently when talking to friends, that I feel like any innocence or naivety I had left in me has been taken away and I desperately want it back!  I feel like I can’t daydream about the future at all anymore because it’s all so uncertain.  I know it was before and that everyone’s future is uncertain but before I had no reason to think in that way and now I massively do!  Basically something very bad and very unexpected has happened to me and now I have no sense of ‘it won’t happen to me’…it’s not ‘why me?’ anymore, it’s ‘why not me?’…I almost expect something awful to happen because I know it can.  Expect the unexpected I guess!  Hopefully that’ll work both ways and unexpected happy things will also happen.  Winning the lottery for us would be to be able to have our own children.  That’s another dream that’s been ruined, where as we used to always talk about ‘when we have our children’ etc….we still do have those conversations but they’re always followed by the black cloud that’s following us around that could jeapordise our chances of having a family and it’s no longer ‘when’, it’s ‘if’.

Anyway, on a happier note, in 5 weeks I will be on holiday!  It’s the first of our holidays.  It’s me & Chris, my mum & dad, my sister & her husband & 3 girls and my brother will come out for one week in the middle.  I can’t wait and am getting very excited but again, I’m scared to be excited in case anything ruins it!  & it’s a long time since I felt true excitement so it feels strange!  & there’s the guilt…I feel like I shouldn’t be going on holiday because I should be in hospital having chemo!  I know it sounds weird but it is what it is!  Anyway I’m sure I’ll get over it once I’m there!

At the weekend I went swimming for the first time.  I’ve been really looking forward to going since I got the Picc line out of my arm and it should be really good exercise for me and gentle on my leg too.  I was quite apprehensive about going because it would be the first time I’d have my scar on show and also I couldn’t very well go with my wig on so I’d have to bare my head in public too!  So anyway, I just wanted to do it because I knew if I went once, I’d be fine and I’d ‘get over it’!!!  So we went and I got in the water and then it suddenly dawned on me that I’d been so concerned about my hair and my scar that I hadn’t thought for one minute whether I’d actually be able to swim!  I said to Goose, ‘Oh, I don’t actually know what’s going to happen when I try to swim!’  so I tried breast stroke and my leg just was not doing what it was suppose to be doing!  I don’t know what on earth it was doing, but it wasn’t swimming!  It felt very bizarre and didn’t feel like my leg at all!  Obviously, since surgery I’ve never tried to do that movement because you don’t really do that in any other circumstance other than swimming!  So I opted for front crawl which obviously requires a much easier movement for your legs!   So I think I’m somehow going to have to learn to swim breast stroke with my ‘bionic’ leg!  I guess that’s obvious really because I’ve had to learn to walk again so it makes sense that I’d have to learn to swim again!  It makes you realise how automatic all these things become and you don’t have to think about how you’re doing them at all…until something stops you from doing it!  It also made me realise that I don’t think anyone in that swimming pool…and I did choose the busiest time, Saturday afternoon…actually cared about my scar or my lack of hair!  Everyone’s too busy with what they’re doing to be bothered!  & then I realised that it’s probably actually quite self obsessed (well, not obsessed but I can’t think of a better way of saying it right now!) to assume that people are going to be looking at me.  We all worry so much about people noticing things about us but in reality they’d have to be looking in the first place to notice, which they probably aren’t!  Plus the fact, none of those people know me, so they won’t have known me when I had long hair, no scar and was thinner, so they won’t be noticing any difference if they’d never seen me before!  Who cares anyway!  My hair is actually growing quite alot, I will post a photo on here soon to show you…

Anyway, a big thank you to everyone who’s got in touch with me since my last post and told me that you ARE reading and that I must keep writing!  I’ve been told!  Many people have emailed/facebooked/commented to let me know you’re reading, so thank you.   It means alot!  You may have noticed a recent comment on my last post from a lady talking about including me in a book.  It’s very exciting, an old friend suggested I befriend this lady on facebook.  She’s in California and is a cancer survivor herself.  She is wanting to put together a book called HOPE…to give people going through cancer hope by sharing inspirational stories of cancer survivors.  I have some similar books myself and for me, it really helps to read other people’s experiences as I can relate to so much of it and I find it really comforting.  I still think the most useful thing for me is to talk to, read about and meet other cancer patients.  It’s really comforting in a way I’ll never be able to describe.  Anyway so I wrote the brief version of my story on this lady’s facebook page and told her about this website and she’s interested!  So I’ll be very excited to pursue that.  I’m also going to write to some magazines to see if they’ll publish my story as I’m still really passionate about raising awareness of bone cancer as it’s so unheard of.  My ultimate dream would still be to have my book published (not that I’ve written in yet but this site gives me lots of material!)  So…if anyone knows anyone who works for a publisher, or a magazine…or anything you think might help me to raise awareness.  I REALLY want to go on This Morning and meet Holly Willoughby!  If anyone reading can in anyway help any of these things happen, please get in touch!!

Right, I’ve talked (typed!) enough for one day.  I will try to write more often and less each time, but I know I’ve said that before!  I will post pics of my hair growth soon!  I hope you’re all well…

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