Number Forty Nine: The Opportunities

I’ve done a few fun things lately that wound not have come about had it not been for The Beast Breast…but also would not have come about without Breast Cancer Care!

I’ve written a quote for the Younger Women’s leaflet for Breast Cancer Care and had some of my blog posts posted in their new ‘Behind the Woman’ campaign.
http://thewoman.breastcancercare.net/
I’ve been to London to take part in a photo shoot for the new leaflet- there I was with some other lovely lovely ladies having my photo taken in a busy and very funky restaurant! Some of the pictures are of me chatting with the other women and some are of me posing with an orange- acting like I’m preparing a healthy smoothy! (So so close to reality- I’m currently scoffing Drumstick lollies from one of Ben’s party bags whilst he sleep unaware upstairs!)
http://thefollybar.co.uk/
Following this photo shoot I received an email from the organiser- Clare asking if I would mind my photo and story being used for a newsletter that goes out to BCC supporters. My mum was confused as to what exactly I meant- I clarified by saying ‘You know, when you donate to Dog’s Trust you might receive a photo of a sad stray puppy in the post; now if you support BCC you just might be lucky enough to get a picture of me landing on your doormat!
A few weeks ago I did an interview over the phone with a journalist from Psychologies magazine- this was incredibly nerve wracking as I tend to babble and was in constant fear that I would say something ridiculous and it would end up in print!
http://www.psychologies.co.uk/
On Friday a photographer and make up artist came to take a portrait picture of me for the Psychologies article. They were proper pros and came from London and everything! The lovely lovely make up artist had made up loads of famous faces- Robbie Coltraine, Vinnie Jones, but what was most lovely about her was how lovely she was with Ben. The photographer took photos of Rob Lowe last year! I found this incredibly impressive and couldn’t help thinking how thrilled she must have been to travel 2 hours to take my photo! She was also lovely with a potentially very bored 4 year old. She gave him the very important job of holding the light meter in the air- he looked very proud!

All of these opportunities stemmed from meeting the very lovely Emma at the BCC Younger Women’s forum. Today my husband has run his first ever half marathon and is raising money for Breast Cancer Care- he did so well despite his trademark lack of preparation!

http://www.justgiving.com/Robert-Morley-smith

Number Forty Eight: The Edge

A knife edge… a cliff edge… you name an edge and I’m on it! I’ve recently realised that I am coping really well… really well as long as everything runs smoothly. A tiny bump in the road, kink in the plan or hiccup in my day and I come crashing down. These issues can range from anything tiny like ‘we’ve run out of milk’ (again) to big decisions over childcare, work or relationships. And when I say ‘I come crashing down’ I mean that I lose the ability to think straight, concentrate but most infuriatingly I lose the ability to sleep! The tiniest worry will have me wide eyed at 3am, thoughts buzzing round in my tiny brain, stress building up about how to get back to sleep and calculations being made about just how tired I will be tomorrow… well today- later today as it is already tomorrow. Ugh!

I think we can safely say that the PMA is dwindling. You’d think being a positive substance it would in fact be self-replenishing but maybe it’s finite after all! Yep, I’ve spent a year harping on about how I will now face life with a new carefree attitude; cancer had shocked me into living a better life… What an idiot! All I’ve actually done is clarified number one on my ‘What to worry about’ List.

‘What to Worry About’

1. Have I failed at my very own cancer promise to myself? I was going to ‘not sweat the small stuff’, I promised myself I’d enjoy life but I can’t help reverting back to my old, worrying self! Did I set myself up to fail?
2. Am I going to be fat FOREVER?
3. Have I led the most predictable and boring life ever?
4. Should I stop working to look after my children rather than trust someone else and pay them most of what I’m earning anyway!
5. Should I be working more/longer hours/ harder? I’m very aware that I no longer look ill and worry that colleagues will think I’m a slacker. (No one has even hinted at this it is purely a negative fantasy! I spend a lot of time wondering what I myself would be thinking about myself if I weren’t myself!…I’ve never been very forgiving of people having time off work and so imagine that others think I’m lazy and work-shy!)
6. It’s not until September but… Will my son get a teacher who ‘gets him’ and will he enjoy school life?
7. Am I only a blue rinse away from looking like that old lady from Coronation Street?  (Can’t remember her name- haven’t watched it since I was about 12!)
8. Will I ever get my career back on track? Should I be patient and give myself time or should I be pushing myself now?
9. Does my husband only like watching Spartacus because he misses the sight of two boobs? (Again… my issue, not his- his only complaints are firmly in my imagination only)
10. Will it come back?
11. How can I get back to sleep?

I wish I could recapture the positivity I spoke so much about. I wish I could feel less on edge. Please can I just stop teetering and step back, relax and admire the view?

Number Forty Seven: The Inspiration!

I’ve found a theme running through people’s cancer reactions… flattery! ‘Ooh, you’re so brave!’ ‘I wouldn’t cope as well as you’ve done.’ ‘You’ve been so amazing and courageous!’ Seriously- even the word ‘inspirational’ is frequently banded about- it’s enough to go to a girl’s head! Warning! This can be dangerous, just the other day, I was feeling particularly low and irritable, I can’t even remember what my husband said to set me off but my reaction still makes me laugh aloud several weeks later. This is what I said…

‘God! Everyone else thinks I’m amazing you know! Why don’t you think I’m an inspiration? You don’t treat me like I’m special... where are my treats and presents?’

Yep, I hear you thinking- What a brat! The moral is people- don’t believe the hype! It’s kind of people to dish out these compliments but the truth is they would cope just as well. I don’t remember thinking to myself ‘Right, I’m no wimp, I can do this, I’m strong and will put up an amazing fight!’ but I do remember that there was no other option… at no point did I weigh up my options because there was no other option. I have a lot to live for so I will do everything in my power to lengthen my stay! When people say that they wouldn’t be as brave as me I say ‘Yes you would, what other choice is there?’

I am no more amazing than the next person but the real truth is we are all pretty amazing. It’s quite amazing how much a person can cope with and overcome- far more than I hope I’ll ever have to face. It is my strong belief that no matter how scared you might feel at the beginning there will be plenty of days you feel proud of what you’ve endured. So take those well meant compliments and bask in your own inspirational wonder- just don’t expect those closest to you to keep the compliments coming- remember you’re not going through this alone, whoever it is that makes up your support network will need support in return. So to my husband I say I very public ‘Sorry’ for the irritable days and a huge ‘Thank you’ for being my amazing inspiration! Bleugh!

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!