Tuesday 22 May 2012

Not Dying of cancer.....Living with cancer

I am not dying of cancer, no, I am living with cancer.
You see what I did there? That's soooooo deep, yeah. See how empowering that statement is? How it makes me not a victim.....but rather as someone who is experiencing a situation.....no negativity attached to it..mmmmm........and just simple - Living not Dying. Go me for feeling like I have invented a great cancer mantra it's probably all over the web already and I didn't actually  make it up (haven't googled it yet) I read one years ago "I have cancer but it doesn't have me" well I am putting it out there....... I think mine is better!
The sun shone all day long today and it was properly lush! I have caught up with friends and family, had some epic games of badminton (sweaty), done a salsa class (awesome), got wonderfully fed with veggie curry by my little brother..(yum) and booked plane tickets for Spain- yeah baby!!!! Top day!!!
Suffice to say my slightly rubbish mood has lifted and life is good again, in fact haha here's another inspirational thing I made up today...ok so you may or may not be aware that the 'youth' today have a commonly used acronym 'FML' meaning F@*K My Life - cos you know it's so bad being a teenager having your whole life ahead of you, fresh skin, good health, no responsibilities etc (bummer) well anyway my acronym is 'LML' yessss!! In yo face smelly teenagers!! Love My Life! Blimey if it wasn't for this pesky cancer my life would be pretty much perfect. I just wish it hadn't taken dying to start really living!! But I am just so grateful for what I have and knowing that I am privildged enough to have the opportunity every day to experience love, friendship, the ocean, the elements, good food, fine wine, laughter, energy, movement, riding my bike, loving my dog, seeing my boy growing up, reading, chanting, watching shit on I-player, planning the weekends, painting my nails,texting, snoozing, dancing, OMG my gratitude list is as long as my arm.......I should shut up and go to bed!!! OMG ...BTW FYI LML.....LOL :)

Sunday 20 May 2012

Celebrate good times

wow- today I saw my baby boy turn 18! how flippin' cool is that!!?? Need I remind you that last July I was given 6 months and had to consider whether a letter or voice recording of birthday wishes was least sad and painful?? and yet - yeeeeeeeee ha!! I got to blow up the balloons, decorate the flat with cheesey 18th birthday banners. cook up a mexican feast, have my son dis the bingo theme to the evening...... and get a bunch of people together to get my boy his mac book :) am a happy mama!!
Life is good!
And.......following on from this awesome day- yes life can just be FUN central - on saturday there will be 10 of us segwaying our asses off (there will definitely be footage of same) then to the fabulous 'Nobody Inn' for lunch......mmmmm cheese........... :) and thennnnnnnn next week is Exmouth festival - say no more, dancing and frolics in the park!!! altho this is clashing with a massive salsa do in Bristol, may have to let weather decide...
Apart from birthday celebrations , the weekend has been fun........Friday night me and my mate hit town for proper cocktails...I always thought they were a bit of a waste of time. how wrong could I be! Actually delicious! Loving the fact we can just hop on a train and be amongst it then back home to wierd yet comfy local pub.....
Re: my cancer life -I am flipping between feeling soooo alive that I reject any opinion to the contrary....to feeling super anxious re: next scan, subsequent treatment etc. My mood has been, well, rubbish really for a few weeks which totally sucks cos I know worrying is pointless and if anything , harmful........I suppose it's 'normal' but that doesn't help, particularly as i don't really subscribe to 'normal'...
Ok - well 4 more days til Brentuximab number 6 - pleeeeeeeeease everyones' finger and toes crossed for scan results being ace after that!! Will call me doc in the a.m and remind him a PET scan would be preferable hem hem.
Love and Light
Sim
x

Wednesday 2 May 2012

Coping with hair loss...


I have recently been reading some bumf about chemo and hair loss and 'coping' with it.....LOL 'coping' what does that mean?? losing your hair sucks ass, fact! but what doesn't kill you makes you stronger a ...and in some ways it has been an amazing experience, though NOT one I would wish on anyone!!!

I first had chemotherapy when I was 33, I had shoulder length blonde hair and I had it cut into a short bob when I knew I would soon lose it. My hair began to fall out slowly after the first treatment and by 3 months I shaved my head because my hair was so thin. Initially I bought 4 wigs on the internet and decided that this was the excuse I needed to have the hair I had always wanted, I had a really long one made of actual human hair –eeeww that was very similar in colour to my own, a blonde curly one and  a brunette and blonde one on a pre-fitted head band…..well it all seemed like a good idea at the time!  I wore wigs out and about and to work but not at home. I never found the wigs comfortable for more than a couple of hours and soon opted for custom made head scarves. I definitely compensated for my lack of hair with other feminizing accessories, I wore big ear rings and necklaces and learnt to apply make-up thanks to the ‘look good feel better’ charity.

What I found compounded my ‘sick’ appearance the most was losing my eyebrows and eyelashes, I never realised before just how much they frame your face and how odd you look without them. Unfortunately with steroids I also piled on a load of weight so after a few months I just did not recognise the person in the mirror, it was not a nice time.

However there was a plus side to this experience. I had always been rather inconspicuous, deliberately, in the way I look. -I never had the confidence to put myself ‘out there’ as it were. Suddenly, with this cancer badge I had no choice, I had to develop a look that blended with the headscarves and subsequently very short hair. I was now conspicuous and had to embrace a different portrayal of me, and this meant actually appearing confident and a little eccentric…when my hair grew back enough to get away with looking like I may have actually chosen to be that short I soon realized that I looked like the sort of person who had the confidence to have really really short hair!! And actually I totally was not that confident person but this strange twist of fate ensured that I was perceived and therefore acted in a different way! I would never ever have had short hair out of choice but luckily the pixie look actually suited me, and I was very grateful for having a symmetrical head and non sticky out ears!!

This confidence stayed with me and eventually I lost the chemo weight and kept my hair short. Generally I was a different person, I had to be and at the end of the day- who really gives a shit about what I look like apart from me?  Having looked and felt like death warmed up it was all a bonus!

After a couple of years I decided to grow my hair again – it was fun, I eventually had enough to put in pig tails and then wear up in a clip. Then I relapsed with the cancer and went through the whole damn thing again, minus the wigs !!! this time around I was out and about pretty much straight away with a shaved head, it still sucked but I knew it would pass. fortunately I didn't lose my eyebrows or lashes this time.  Fast forward through skinhead, short crop, unfortunate ginger dyeing experience, the to dark brown.... now I have a mop of bleach blond curls which I clip back in different ways with fun and funky clips, I love my hair more than ever and intend to keep it this way. Partly 'cos I may well not live long enough to grow it long again but mostly ‘cos I love it, its easy, its  cool and its me. I am fat again which is crappy……but I am alive and keen to see 40!! I still lament my cancer free days and the fact that I have had to deal with so much shite. But, big but – I am more confident, out going, and certain of myself than anyone I know. I live in the moment and say yes to life and I know that my situation and attitude inspires others and that is a gift. I revel in the irresponsibility of being me but also just thrive on the fact of  how amazing our human embodiment is and how much potential for happiness , love and fun we all possess….
Peace out xxx