Friday, 14 September 2012

The Chemotherapy Experience with Monoclonal Antibodies on backing vocals.

Well this week I have realised that it's all about the 'chood. Innit?

The woman in the chair next to me is 4 years older than me (I am called 'the young lady' in here...) and has colon cancer. This is our conversation;

Her: "My cancer is incurable"
Me: "But it is possible to shrink tumours until they are almost non-existent - and you can live with it"
Her: "No, it's incurable, it's spread to my liver and pancreas"
My reply:  "Oh mine's spread too, to my liver and lungs"
Her (visibly shocked): "But you look so healthy and you still work, (pause and deep sigh) I expect you're a 'positive person'."
Me: "Maybe - I just want to carry on with life."
Her: "I'm not a positive person. I wish I could be but I can't"

Wow, and how terribly sad. She clearly feels so impotent and destroyed. I am not saying this in a smug superhero type of way. I have grieved and raged against this disease too, and I don't think I am a particularly brave or strong person; but I have never given up. 

We have no idea how this tale ends, but I have no plans on spending the last, or any (!) chapters feeling miserable and sitting waiting for the finale. Not when there's still so much good stuff going on and so much fun to be had. Brilliant early morning dog walks, giggling with Al, watching Rosie shake her booty, feeling so proud of my gorgeous, clever Ilias and watching Zak grow into a young man (with added airhead features). Life is just to good to spend waiting. Too wonderful and beautiful.

Good Lord. I think cancer has turned me into a hippy, or back into a hippy.

In other news if the poor lady sitting next to me wasn't suffering enough, Al stole her orange juice (he says by mistake). I think she should be happy as she ended up with posh m&s orange juice with added mango as a replacement, but it's still worrying behaviour. Look at Anthony Worrel-Thompson.

This man steals from cancer victims.

However be warned kids, there are terrible consequences to theft of this severity. Yes your nose could turn into a portable torch...Does the Daily Mail know?

Crime never pays. 

None of this, however, was as shocking as the man two chairs down (he of last week's fame) loudly discussing with his chair neighbour (who he met for the first time today) how he'd "been straining and pushing for 45 minutes to do a number 2". So when Al told me via text (I had headphones on) that '
Man with Number 2 issues' had also informed her, in tones of great and advanced medical knowledge, that her special socks were designed to stop her getting "a DVD" in her leg, we became hysterical with laughter. This medical guru then added that she wanted to avoid DeepThombone at all costs... I was giggling so much that a nurse turned round with a worried look that said 'I might need to do CPR' before realising that we were actually happy. Yes, on a chemo ward. 


Listening to loads of loud music also helped today go with a swing. David Bowie, The Smashing Pumpkins, Foo Fighters and not to forget a bit of Beyonce, Madonna and Rhianna - I am camp rocking this cancer into submission!

So the care packages of a digital radio, boxes of food and love and messages and good vibes; and some great pre-treatment reading (Crazy Sexy Cancer Tips is a fab book for any youthful woman dealing with this) have all made day one of chemo cycle two a pretty great one. We genuinely laughed and not just at the threat of a bad movie in my leg. Today we giggled loudly and more than I've done in a long while - and it wasn't hysteria, it was just a very funny, good day. 

Thursday, 13 September 2012

Medical news

I gave the chemo update and said how I was feeling but didn't give you all the other medical news, which was verging on good (i.e not worse - currently, good in my world).

Pet Scan Results

These completely concur with the CT scans. The cancer is in my colon, liver and lungs but hasn't spread anywhere else. Having spent the week confidently telling people that cancer was in my neck glands (based on a minor twinge), self-diagnosing a brain tumour (based on forgetting something after several glasses of wine and a lovely BBQ with the in-laws, and and I had a headache) and believing it had spread to my bones (sore back) I was a tad relieved - not to mention embarrassed. These are the symptoms of age and excess not cancer. In mitigation, having never been a hypochondriac and ignored all dodgy symptoms I now have stage IV cancer so funnily enough I'm trying to listen to
myself these day, albeit through an amplifier of fear. 

Cancer type news

There are broadly speaking two types of cancer gene (of relevance to us colon cancer people), the wild one and the other KRAS type (just a weird mutant). In colon cancer, people 60% of people have the wild-type and the rest have the mutant gene cancer.

The wild-type has been shown to respond well (especially for people with secondary cancers) to a drug called cetuximab (the one that gives you spots).

Well the good news is that I have the wild-type of cancer. I was hardly going to have the 'sit in the corner and carefully write a process planning document' type of cancer, but I am very grateful to fall the right side of the numbers and be able to get cetuximab. It will probably give me a rash (acne) and I have a low dose of antibiotics to take daily to avoid this. It also adds 2 hours to the Chemotherapy Experience (they are an awful prog-rock band). However it does have proven results in limiting cancer spread and growth. I start this tomorrow.

I also scrupulously followed the advice of 'Anticancer' and forced down dark chocolate and red wine last night. I expect I may need to work harder on the whole deprivation aspect of this regime...

1 in 3 - mostly written on the 17th August

I wrote 1 in 3 nine days after my diagnosis, and have debated whether or not to post it; but maybe because I try and keep this funny and light, I am hiding some of the real stuff and pretending I don't feel it and that's not actually that great. 

Cancer is a weird club - no-one wants to be in it, but many of us are. It's intensely lonely at times but you are also surrounded by love, and kindness and such amazingly thoughtful acts of support. Today, for example, Liz Tait (the Director of Fundraising at Battersea) presented me with 2 very big boxes of gorgeous and lovely M&S treats, fruit, drinks and food - all so I am not faced with the 'quiche pimple' again tomorrow. A truly thoughtful and wonderful gift. My mum has practically moved in every other week and poor Al has remained supportive, kind and loving, despite some occasionally irrational moments on my part (okay maybe they're fairly frequent irrational moments...). 

Friends, colleagues (actually friends I work with) and family are phenomenal but the fact remains that having cancer is also terrifying, awful and can feel all consuming.

I recently read an amazing book 'Anticancer' (thank you Susie!). This book, for the first time helped me realise that there are choices I can make, beyond 'being strong and staying positive' (which is sometimes just ridiculously hard) that can help defeat this disease. There is stuff I can actively do in terms of my diet, and stress levels and exercise to keep alive for as long as possible and have a life that's healthy and happy. I am feeling much better, emotionally, since I read it and I am learning to manage the fear. 

So here is how it is in the rough times...(just so you know, 1 in 3 people will get cancer at some point in their lives). 

in 3

One in three
One in three
One in three
But it won't be me...

And then it is. 

They tell you you've got cancer and the ice hits your stomach and it tightens, but it can't be that bad can it? And actually it can. It's advanced. Spread to your liver. It's serious. This isn't good and they all look so embarrassed, the student posse clutching their notes by the bed, staring a third of their futures in the eyes, knowing without a shadow of a doubt that it'll never ever be them. Oh no, not them. 

One in three but it can't be me...

And then they leave. Left with an iPhone and Dr Google you desperately work out odds, factor in your age, search for misdiagnosis (without any irony, she fumes, 'why is cancer always missed and so rarely given as the incorrect diagnosis?'), look at medical alternatives, work out eventually that it's bad, I mean really bad. 6% kind of bad. A sort of peace descends. I can handle this. Life it's okay,  but death, it's just the next step. I can handle this. 

So you call them, the person you love, the one who will hold your hand, the one you'll leave behind, and it becomes real. The pain, the leaving feels so much closer.

But you continue your search; cancer, bowel, alternatives, liver, prognosis, diet, treatment, statistics - key words to give you hope, percentages to mean there's a chance. There's always a chance. 

And you cry. Oh how you cry. At adverts. At happiness. At sorrow. At life. At death. At fiction and reality. For Lee Scoresby and Hester (I love Philip Pullman). For the people who'll weep at your funeral. You're vain and you're selfless. And of course you're terrified. 

You're most scared of all for your children. The innocent ones. They don't deserve this. 

And you know what I love them so much and I am so scared of leaving them. I've tried so hard to keep them happy and keep their innocence and now I'm about to shatter it. I've got to tell them that I've got cancer. Cancer. The C word. The thing that kills you. Me. Mummy. The one that kisses you goodnight. The makes it all better. And I can't. I can't make this go away. I wish. I so wish I could. I would do anything to stop my babies having to go through this. To protect them but I can't. And I have to be braver than I've ever been and tell Zak. And I am so scared. So fucking scared it's untrue. 

I wrote the above on the 17th August (sorry to my parents for the swearing). For all the resilience and jokes and humour, it is how I feel at times.

But those times are less and further apart than they used to be and I am getting 'used' to this. Going to work with my amazing friends, who still nag me about deadlines and information and don't treat me as 'person with cancer' helps hugely. Al's teasing, Rosie's strops and funny dancing outside a Zumba class, Ilias's 7 year old gloriously self-centeredness and Zak's hugs and tweenager moments, all remind me that life is all around me and I am the same. 

Chemotherapy Days 2 & 3

Sorry this is so late but here is last week's Chemo Experience...and it all starts again tomorrow.

Friday Night

Apparently it was like sharing the bed with the child from The Exorcist - I managed to maintain a relatively normal skin tone and didn't projectile vomit (that comes later) but I did flail around madly, hitting Al - an extreme case of restless limb syndrome and a side effect of the steroids.

Sleeping with steroids...

Day 2

I woke up at 5.45am thinking 'yay this whole chemo thing isn't so bad', bounded out of bed, decanted the casserole I made the night before into a Tupperware pot and considered making a cake. I was Supermum, nothing could defeat me, I laughed, or at least cooked in the face of adversity. 

15 minutes later it seemed I might need to rethink that.

The quick burst of energy was clearly a series of cells gathering together, planning a great escape, no sooner had they appeared than they were shouting "Quick jump! Go now! Abandon! Abandon!" and so they did. By 6am I was being sick and had agonising cramps. The cake was long forgotten and even the thought of the casserole made me pale.

The sickness ended at 8am and with the energetic cells departed, tiredness kicked in. Leaving molasses in their wake, my muscles and veins felt coated and slow, achy weariness oozed through my nerves, every move was laden down and laborious. All I wanted to do is sleep but I ached. I couldn't get comfortable and I just wanted it all to go away. I was too tired to even cry. At this point even a fluffy puppy seemed like it might be hard-work, and as for baking... 

Fortunately I have the best husband ever who took Rosie and Weebay (the dog) on a series of long adventures which meant I was left to rest in peace and attempt to sleep. 

Sleep, when it came was is flighty, full of strange, energetic, frenetic dreams - one involving Madonna! These are interesting times. It's a bizarre experience when you have more energy in sleep when you do awake. 

Slightly weirdly at 4pm I had quick resurgence of energy and (obviously) made a cake. This act of madness completely wiped me out and by 7.30pm I was fast asleep. Flailing around again and terrifying poor Al. 

Day 3

I actually felt a bit better. There was no sickness and besides being on off awake since 4am I was okay. I ached and I was tired but I felt a lot more human. The puppy felt less of a challenge (although, to the relief of Al, still a bad plan). And whilst I won't go as far as make up I did leave the house, albeit in garments that could be described as a track-suit. I am poorly. Please forgive me.

I watched a few episodes of Glee and read Closer magazine. It seems that chemotherapy is killing my culture cells too. Okay this is very lame. I watch Glee and have read Closer before. But, like the dodgy clothes, I now have an excuse.

The heartbreaking moment came when Rosie asks me if I am "feeling better." In my hyper-protective view of parenting, mothers are invincible and never get ill, children are protected from bad stuff and childhood is all about happiness, picnics and home-made cakes. It's not realistic and probably terribly wrong but I want to maintain that place where innocence exists. But now my little 2 year old daughter is aware that mummy is not well and has a poorly tummy. I don't want this to be her childhood or her memories of me. So we went and put on some make-up together. Always great fun creating pink whiskers (Rosie, not me...). 

Al was brilliant all weekend - entertaining Rosie, lots of dog walks and exercise and clearing up sick, providing water and generally being amazing. He doesn't get nearly as much attention as I do for this and deals with all the pain, stress and worry and cleaning up (we have a toddler with a potty).