Number Forty Six: ‘The Fear’

It’s a shame that your cancer diagnosis is not handed over with a wedge of bravery. I’m thinking along the lines of humble pie but with a more courageous filling. The thing is that even when the cancer is removed, treated, zapped and all precautions have been taken to avert its return ‘The Fear’ doesn’t go away. ‘The Fear’ lurks away in the back of your mind and rears its ugly head with every sniffle, yawn, cough, lump or bump you discover.

I speak from experience. Yesterday I had a mammogram and ultra-sound on a lump in my one remaining breast. Thankfully all tests were clear and I now have nothing to worry about. But ‘The Fear’ did cast a rather dark shadow over my Christmas. It’s amazing how easy it is to convince yourself of the worst… a little light Googling and you have a very scary self diagnosis indeed. I’d even go so far as to say that after reading that ‘lack of appetite’ was a symptom of cancer spreading I managed to convince myself I wasn’t hungry every single meal time.

I am so grateful that the breast clinic took my lump seriously and tested me thoroughly; I can honestly say that today I feel lighter and happier than I have in a long time. It’s amazing what a clear mammogram can do for the soul! My new worry is now though, I know ‘The Fear’ exists and I know that it will build up steam in between tests. Am I going to feel more and more anxious the further into the past my most recent mammogram becomes? After the first one, I never thought anyone would be telling me I’d look forward to a mammogram but the reassurance gained from a clear test sure is powerful! I guess I’ll have to find a way to control the ‘The Fear’- I can’t be knocking on the door of the breast clinic every time I feel tired. Although I will be knocking every time I feel a lump- no ignoring that symptom- cross my heart! 

As well as being reassured by a clear test result I’m also a little pleased with myself. You see, I’m a right blabber mouth, never could keep a secret but with the crappy timing of this recent lump slap bang in the middle of the festive period I set myself a challenge- would it be possible to keep this worry to myself? I thought I should spare my friends and family the worry if I could and now I’m really pleased I did because there was nothing to worry about anyway! They were all furious with me when I did confess- they thought I should have told them- a problem shared and all that, they’ve made me promise to confide in them in future and I will but this time I’m just glad that I didn’t worry too many people unnecessarily and proud that I proved to myself I can keep a secret after all!

Yesterday I was reassured not only by a clear result but also by my consultant telling me I have every right to freak out over potential symptoms- it’s perfectly normal to be overly worried after what I’ve been though and the vigilance that ‘The Fear’ provides may mean I find any future lumps sooner rather than later- who knows- maybe ‘The Fear’ has its uses?

Number Forty Five: The Younger Women's Forum

I recently went on a weekend away- very nice it was too! A night in a hotel and two days of slap up meals! But this was a weekend with a difference- it was organised by Breast Cancer Care and was a forum for younger women affected by breast cancer.
Once I was booked on I was really nervous- what if everyone was really serious and depressing? What if no one wanted to speak to me? What if they were all really young and was in fact an older woman?
I had this whole scenario worked out in my head that there would be high school style cliques. The straight forward lumpectomy girls hanging out together, the bald ones sticking together, the wiggy ones in a tight circle and a group of hard core stage fourers that no one would mess with! Where would I fit in? Would I be accepted into any of these groups?
As it turned out of course all the 29 other women were perfectly normal (much like me) and it was soon clear that breast cancer was not all we shared in common. There seemed  to be a high number of teachers for a start- are we susceptible to breast cancer or are we just more inclined to attend courses held in hotels? You decide.
It was really interesting to hear different experiences, many of which made me feel lucky. The others talked of friendship and relationship issues, problems with work, continuing side affects from the treatment and a lack of control over how their diagnosis was handled. I have to say that this was a real eye opener- I haven't had any friends drop me because they couldn't face dealing with me and cancer (well if they did drop me then `i haven't noticed so I'm certainly not missing them!) If anything my relationship is stronger now. I have no arm pain and have full use of my arm and shoulder. (A patch remains numb but who needs armpit sensitivity?) It seems I have put hot flushes past me quicker than I could have hoped to as well! I've talked a lot about how grateful I am that I had my two boys before this thing hit but the younger women's forum bought this home again. I am definitely one of the lucky ones.
Twitter played its part as it seems to do these days- I met a couple of lovely ladies who I'd been following for a few months- it was great to put a face to the tweets and was oddly reassuring to know that there was going to be someone that I knew there (well sort of).
It was funny to look around the room and see all the different stages of hair regrowth- I had a thin covering of hair at the time and most women seemed to want that stage back again; they hated their new thick, curly hair and wanted a short crop back- this makes me think that I have a difficult stage ahead of me! But looking around that room I saw many people I hoped to look just like really soon!
The major issue these younger women seemed to have was with their medical team not communicating openly with them- something I initially thought I hadn't experienced myself- it wasn't until I started to recall where I got all my information from and realised it was of course not from the medical team at all but from a friend who'd already experienced all this herself. This has really made me think about how important it is to team up with someone who has unfortunately been there and done that- their experience can certainly ease your fear of the unknown. I'm really grateful that I had someone to talk me through step by step what I was likely to expect.
It was great to get tips from the other women at the forum too- from deodorant choices and shampoo to serums, pillows and Tamoxifen brands. One lady even told me about a charity that would happily send me on a holiday!
I learnt loads about reconstructive surgery and am now looking forward to getting my new boob- even though I expect it to be a bit Frankensteinish! The part I took most away from was the psychologist who came to talk to us about moving on- he had so much to say that was fascinating and I think it was really well timed for me- I was at a point where I was ready and willing to move on and he made me feel better about many of the emotions I'd been experiencing- to be honest it's not the actual emotions that are the problem- it's the flitting between them all that can make life difficult!
One of the things I was always in danger of doing was over sharing- I knew my splurge-like mouth could get me into trouble! There was a sex and relationships seminar that I attended and even I could feel myself willing my mouth to shut and stay closed- honestly what is my problem? Why do I feel the need to share everything? This was of course true of the evening's socialising; once I had a drink in me I couldn't help telling my table at dinner how wonderfully normal I thought everyone was and telling them about my high school clique fears. We then preceded to play Top Trumps with our cancer symptoms, treatments and procedures... 'Just a lumpectomy? Pah, I've had a full mastectomy!' 'Just the one? I've had both off!' 'You did't even have chemo? Ugh, Call yourself a cancer patient? You don't even know you're born!' 'Radiotherapy... well that's just a walk in the park!' It was funny in a dark way but you might have had to have been there!
So I took a lot away from the weekend... information, shared experiences, new friendships, a better understanding of my own recovery, a sense of being lucky in many many ways and a respectable score at Top Trumps!
I am hugely grateful to Breast Cancer Care for their organisation of this event. I found it unexpectedly useful and entertaining- and I wasn't the only one- I think everyone enjoyed themselves and plan to keep in touch- there's even a reunion planned already!
So I guess what I'm trying to say is... if you're going to donate to a breast cancer charity then make sure it is Breast Cancer Care- they're fab!

Number Forty Four: The Rollercoaster

Life's little ups and downs!

Hello? Are you still there?

I know I’ve been quiet for a while but it’s honestly because I’ve been so busy getting on with my life- shouldn’t really apologise for that! I guess in actual fact, in the real world I’ve been anything but quiet! My other excuse is that I really haven’t had anything cancery to say! Once radiotherapy was done most appointments have stopped and nothing at all interesting has happened during any of the herceptin visits so nothing to say there either! Even the hot flushes have just about stopped! I promised myself that I wouldn’t continue to waffle aimlessly- if I have nothing cancer-ish to say then I would not write a blog post- simple.

Getting back to real life has been a lot of fun but is very up and down and is definitely best described as a rollercoaster! I went on a hen night and spent the whole time either feeling bald, fat and ugly and noticing strangers quickly look away embarrassed that they’d accidently caught my eye or feeling wonderfully proud of myself that despite everything I was still out partying and dancing the night away! It’s exhausting having these mixed emotions- I honestly can’t even keep up with them myself! (Possibly the vodka laced sangria had something to do with the emotion! I’ve always been an emotional drunk!)

The other tricky thing is keeping sight of that new found perspective I’ve harped on so much about! The best thing I had taken from this whole beast breast experience was not to take anything for granted, to enjoy life and not to sweat the small stuff. But my God that perspective can be a slippery bugger! I so easily stress over little things and have to have a proper word with myself! It’s full time job this relaxed approach you know!

In the last week I have started back at the gym and have even been eating more sensibly- the being fat gets me down way more than the bald does so I’m being proactive. All evidence points to both Herceptin and Tamoxifen interfering with losing weight but I’m determined to try anyway.

The other thing I’ve done is plan my party- my getting better party party party! My happiest times are dancing- cheesy discos, wedding receptions, hen nights- you name it- I do love a boogie! SO in order to have more dancing in my life I’ve decided I must have a party. (I’m well aware that if I’m choosing the music people might not even come but then hey- dance floor to myself- it wouldn’t be the first time!)

I’m sure things will continue to be up and down for a while but hopefully everything will even out and just maybe become a little more high than low? After all crappy 2011 is nearly behind us! I am so looking forward to this weekend- more partying AND we’re going to see Tim Minchin- ridiculously excited about this- see you Friday Tim! Definite rollercoaster high!

Number Forty Three: The Radiotherapy

I think this machine has actually been featured in an episode of Ben10!

Radiotherapy was done and dusted a week ago now and although it was definitely a walk in the park compared to chemotherapy I do feel it deserves at least a little mention.

Before it began I tried to explain to my eldest what would be happening (tricky as it really was nothing like I’d imagined it)

‘Well a machine will sort of shoot and zap me to kill off any nasty bits in me and I might get tired and my skin will be a bit burnt.’

Turns out I made it sound more like an episode of Ben10 than I had intended.

‘Yeah mum, when are you having your shooting and burning?’ he asked a few days later. Note to self-shooting, zapping and burning are all way cooler to a three year old boy than they are to you as a patient!

My skin is burnt now- in a ridiculous rectangle shape and it’s too sore to wear a bra. Without a bra I obviously look a little unbalanced so I now fashion most outfits with a strategically placed scarf (some days I do look like I’m wearing a bib). I am beginning to think that cancer was just maybe created by some sort of evil scarf seller with a view to increasing his sales. Cancer=heavy reliance on scarves! As well as trying not to look like a pirate there is obviously a fashion rule against wearing more than one scarf at a time so if you’re disguising a lack of boob with a scarf then you’re just going to have to find something else to wear on your head! Exactly the same as the ‘double denim’ rule- just say no!

When you have radiotherapy you get your own gown- no expense spared! This means you have to remember to take it with you everyday- I forgot (twice) which meant I had to wear the inferior gown that didn’t have fancy zips and Velcro. It was just like at school when you forget your kit and you’re made to wear the lost property shorts and t-shirt-ugh!!! The other thing you have to remember is to display your parking permit- I forgot and was given an £80 fine on day one! (I wormed my way out of it naturally!)

When you’re actually being zapped it’s very difficult to believe anything is really happening (you kind of know something pretty dangerous IS happening because everyone legs it out of the room and leaves you all alone!) but the actual zap is all very uneventful really. What is a bit of a nightmare is getting you lined up in the right place on the bed- one arm in the air, head to the side, up a bit, down a bit, side to side. Once you’re in place you must not move- I think we’ve established my memory isn’t what it used to be but during the positioning of about the twelfth of fifteen zaps I forgot about being still and lifted my hand to scratch my face. No no no this is NOT allowed. I got a bit told off… I hate getting told off! And so then the most ridiculous thing of this entire beast breast journey happened… I cried… because I didn’t want to be told off! By this point everyone had scarpered for fear of the radiation so I was all alone crying, whilst being zapped and of course lying incredibly still! I thought not licking sugar from your lips whilst eating a jam doughnut was tricky- try not wiping your tears whilst having radiation shot at you! Luckily I was wearing a woolly hat so my tears had something to soak into!  

So that’s one more thing behind me. Just the Herceptin and Tamoxifen to tick off my list now! It is worth mentioning that I seem to have the slowest growing hair ever- think I’m destined to be bald for an awful long time yet! And whilst I am bald I really must remember not to try and comfort any crying foundation children in the corridor as I tend to scare them and just make the crying louder! The rest of work is going well- The highlight so far has been a little girl telling me she thought that ‘Benny and the Jets’ was a song her cousin made up whilst they were on holiday in a caravan! Don’t tell Elton!

Anyway, as far as the half a burnt chest goes- the only way to even it up is to go to Gran Canaria- oh go on then. If I must!

Number Forty Two: The Mes (old and new)

Old Me Vs New Me

So, one thing that happens when you get the life changing cancer news is exactly that… your life changes. There’s a new perspective that focuses you on the fact that life can be short. Yesterday I uttered ‘I’ll live…’ before carefully adding ‘I hope…’ This thought would never have entered my head before. It really doesn’t matter how positively you face this or how determined you are to beat it, there is still a huge dark question mark hanging over your head that wasn’t there in your carefree pre-cancer days. (Beware- this question mark can cause unexpected and unwanted wobbles at any time!) All this results in a split personality- the new me verses the old me. There are some good things about having a new me, equally some negative aspects but I will definitely say that keeping two personalities (well two separate trains of thought anyway!) going can be exhausting! Sometimes I wish the new me would get a grip and shake the old me, other times I wish I could find and secure the old me in place! Confused? You will be!

The return to real life: The old me was pretty confident, sometimes open to self criticism but sturdy most of the time. The new me feels a bit vulnerable- timeout means I have missed things, everything’s moved on and this is a bit unsettling. New faces are welcoming yes, but so much change makes me nervous- new routines, equipment, procedures. How will I ever catch up? (I know this feeling- it’s happened once before… during my first maternity leave APP was introduced- ugh! I’ll always feel like I’m catching up where that’s concerned!) I have to make it clear here that I have the most supportive work place in the world but unfortunately that doesn’t change the fact that I was, at one time one of the most experienced members of staff and now I’m a bit floundering and wondering where resources are kept!

I’m thinking that the old, more confident, energetic me will, in time surface and guide me!

Old me 1 : New me 0

The image: This is an odd one- it does depend on my mood. I don’t want to sound too full of myself but the old me was pretty enough- ok face, nice hair, on the thinner side of fat. I really had no complaints! (Maybe a nose job but only on an insecure day!) The new me does not have this luxury! In my opinion the whispy regrowth looks even worse than the clean bald head and the moon pig face with the lopsided body to match is pretty gross. That all being said the really funny thing is that as long as I avoid mirrors I am totally oblivious to what I look like- The confidence about our image must somehow be hardwired from how we grew up. I am sure that if I’d always looked this way I would have serious issues about my image. I may just exist in a small dark room and never see the light of day! Knowing it’s all temporary must obviously help too. You could have knocked me down with a pair of GHDs, a year ago if someone told me I’d be wandering around looking like this… not caring about my appearance.

All this is well and good but I am really looking forward to the old me reflecting back at the me one of these days!

Old me 2 : New me 0

The important things in life: This is a no brainner- The old me spent hours worrying about what people thought of me, the new me spends hours planning good times! The old me stressed out and had melt downs- the new me still does but then remembers that life is short and moves on whilst the old me would still be obsessing!

Old me 2 : New me 1

To be honest it’s very draining keeping up with the new me because the old me is obviously the natural/true me. The new me’s attitude has to battle and squish down the old me in order to take its place!

I guess the bad parts of the new me will subside- I will find myself at work again…my hair will grow…I’ll have reconstructive surgery…I’ll slim down.

I guess the good part of the new me- the part that sees what’s important in life will remain. It’ll go AWOL at times but now I’ve found it I’ll not let it too far out of my sight. And if I can reach that all important ten year mark then I actually think that brooding question mark might fade slightly too- here’s hoping!

Number Forty One: The Nostalgia

It may well be down to nothing more than my age but I’m getting more and more consumed by the past at the moment. I have spent the summer either visiting places we went as a family during my childhood or daydreaming about days gone by!

An evening playing Singstar with my sisters brought back many memories as we decided on which songs to download- I may well have lost every song but I was the last lady standing at the end of the night- unheard of!

Songs have that knack of taking you back instantly and Radio2’s golden oldies are starting to chime with me- see it must be my age! I’ve got two vivid memories of pop music from when I was really little- the first is me dancing in the neighbour’s house to Uptown Girl and the second is me and Jeneen having a full blown row in the back of the car about who liked ‘Red Gold and Green’ the most!

Last weekend’s bike ride for Cancer Research (you know the one where I won a bike!) also brought memories flooding back- as a child most summer evenings were spent on family bike rides and the route of this charity bike ride went right behind my childhood home- cue me yelling Erin and Claire stories (the place where we met on the way to school, the place where we walked on the iced over canal-idiot girls!, the place where we had 'biker birthday') to Rob who was furiously peddling and dragging along the trailer with both boys in! I think my stories made it all the more enjoyable for him!

Even the more recent past has been on my mind- we drove past my old school the other day and I told Ben that that was where mummy and daddy met and fell in love.

‘Why did you love him Mummy?’

‘Because he was so funny and gorgeous.’

‘But mummy… now Daddy is a Doofus and you get angry with him!’

Ha! Out of the mouths of babes! And could anyone advise when this endless questions- why? Why? WHY? Stage ends? I’m sure as a teacher I should be embracing his inquisitive nature but my goodness it can be tiring!

Today in the chemo unit- I was only there to have my line flushed (line removal day has been named as this Tuesday! Woo-hoo!) I met a couple who turned out to be the parents of a boy I was in sixth form with- so I had a little impromptu wander down memory lane with them too!

This nostalgia business may have a lot to do with the fact I have a family of my own now- Ben is getting to the age where my first memories begin and I keep finding myself telling him things that I did when I was little. It also makes me think lots about my mum- I’m re-seeing my childhood from a mum’s perspective rather than just from my own- I guess that wouldn’t have been possible until now.

Well radiotherapy seems be going smoothly enough (save the parking ticket!) I’ve had a parking space everyday no problems- 8 sessions down- 7 to go. It’s starting to hurt and, this afternoon I just slept but still feel exhausted so it’s taking its toll. I am actually beginning to laugh at myself- I always think I’ll be fine- no matter what symptoms others tell me about- Pah! Not me I think! I’m made of stronger stuff! (Not sure what exactly- cancer riddled rubbish stuff so far!) so I’m not so surprised that the traditional Radiotherapy symptoms have gripped me after all. Note to self- stop setting yourself up for a fall by thinking you’re the best one!

Being back at work has made me feel really happy- it’s great being back in the real world! Being part time means I have restful afternoon where one son naps and the other watches Cbeebies for a while- this mean I can rest or even knock up a quick maths plan- genius!

So very soon the line will be out and healed, meaning I can go to Whittlebury Spa for a little overnight stay in half term, the radiotherapy will be done meaning I can get properly to grips with my new routine and new role at school. Although I do think I’m going to miss the extended time I’ve had with Chris Evans in the mornings on my drive up and down the motorway- this could be nostalgia too- only now he’s on Radio2 instead of on Radio1 like when I was at school! Again this makes me feel old- my sisters hate me listening to Radio2- their time will come! Shame my day off is a Friday really- now I have to sing ‘Candyman’ on my own instead of with Mrs Bassett- it’s really not the same!

Maybe when your future becomes that little bit uncertain you pause to have a little look back- not sure but, erm…I’m really hoping that all this nostalgia is just me appreciating my life and not in actual fact my life flashing very slowly before my eyes- now that would be disappointing!

Number Forty: The Twittering

It’s impossible to explain to a non-tweeter the wonder of Twitter! I tried it last night at a party...

‘Isn’t it just like Facebook?’ They ask.

‘Nooooooooo, it’s really not.’ I reply.

Facebook is used for showcasing, gloating and letting people know what they’ve missed out on. It’s also used for sharing thinly veiled digs at people. Many a row has been caused by Facebook.

I really don’t think the same can be said of Twitter… I have found Twitter to be a source of comfort and reassurance and also a fountain of knowledge! Sometimes it can just be really good company! It’s a support network- mine is full of teachers who are happy to share their ideas and good practice. My twitter world is also full of tweeters currently undergoing various cancer treatments- this can be really useful when they are having similar treatment to me but are a week or so ahead- they let me know what to expect which helps prepare me for the next stage. A surprising amount of the people I ‘follow’ are both teachers AND cancer survivors! Worrying?!

Hopefully I am equally as supportive to the people who are bored enough to want to follow me- I do try!

I’d like to introduce you to a special few…

Chez @ScouseChez I first ‘met’ Chez on the breast cancer care forum- we were diagnosed within days of each other and had the same reactions- to share our stories with anyone who’ll listen. Chez checks in whenever I go quiet- she picked up pretty quickly that quiet is not a good sign! Thanks for being there Chez!

http://chez-diaryofadramaqueen.blogspot.com/

Caitriona @ol_cait I stumbled upon Cait’s blog through one of someone else’s tweets I think. She’s living in Ireland, is younger than me, has two young children and another on the way- sounds perfect until you factor in the stage 4 breast cancer. I could echo all the bravery and inspiration comments but I think she’s probably just dealing with what life throws at her as she has little choice and awful lot to live for! Hence the title of her blog… http://butiwannaliveforever.blogspot.com/ Cait recently tweeted that her wig was getting a little past it, so knowing that I was never going to wear mine I sent it over to Ireland where it is now hopefully far more useful- sitting on Cait’s head rather than on my wig stand! How fab Twitter is then that it put me (wig waster) in touch with Cait (wig needer) Gotta love The Twitter!

Ali @theotheralig I can’t remember how I found Ali but I’m so glad I did- we started chemo at the same time but she won the race to final chemo day due to my week delay (stupid botched line!) She calls herself my chemo sister and has been there every step of the way… we both start back at work in the morning after long breaks from our schools- good luck with your new class Ali.

http://abgreenteacher.blogspot.com/

http://theotheralig.blogspot.com/

Harriet @misshbond I think I discovered Harriet through Ali but I’m not too sure. Harriet was an NQT last year and is about to give birth to twin baby girls- I’ve loved following her twin tales. I realised how important twitter had become recently when I found myself worrying a ridiculous amount about Harriet’s lack of tweets- was she OK? Back in hospital? Were the babies OK? Turned out I’d missed the tweet that said… ‘I’m going on holiday- won’t be tweeting, see you in a few days!’ Nothing to worry about at all then! It’s really odd that I’m looking forward to hearing about the safe arrival of these’s babies when I’ve never even met their mum! I internet is truly weird!

http://harriet-twintales.blogspot.com/

I honestly wonder how I’d have filled my sick leave without the internet and more specifically twitter. Twitter has advised, supported and accompanied me through a rubbish time- thanks for joining me! Next I’m on a mission to get the staff at my school twittering!

Oh and by the way…hands up who thought I’d make it to Number Forty! Anyone?