Steve Jobs - one of my heroes.

Besides a love of Apple, and my desperate desire to be a bit of rebel (within a conformist environment), Steve Jobs and I finally have something in common. 

Cancer.

It wouldn't have been my first choice.

A glittering career as an innovative world changer would have preferable but I guess you can't win 'em all. And whilst I am no slouch in the fundraising area I expect Steve was slightly ahead of my game by the time he hit 40. 

But like me, and millions of others he joined the cancer club. Membership lasted 8 years and right now that seems like a lifetime. In 8 years time Rosie will be approaching 11, Zak will be at University and Ilias will be a stroppy 15 year old. It feels so much better than leaving now, or in the next three years, but I know that it is always too soon. Once you're in the cancer club every future dream, every hope, every 'next year' is tinged with a mental 'please God, let me be here'. That's the reality and I don't expect it ever goes away. 

But Steve Jobs is a hero of mine and he died a year ago. He's one of my heroes because he was an innovator, because he'd 'rather be a pirate than join the navy' and because Steve Jobs founded one of the world's most creative and amazing companies that embraced difference and challenged the usual way of doing things. So in remembering Steve Jobs I hope I embrace his spirit in my life and my work and that in doing so, we have more in common than cancer. 

I got dem post-chemotherapy blues

Okay, I was a tad premature in my 'the spots are on their way out' jubilation. They're back, and whilst they don't have quite the full force of before I think it's an uphill struggle for the antibiotics to keep my skin under control. My chest and back represent the worse kind of pizza skin (thank god for scarves) and are ludicrously itchy. There are spots all across my nose, chin, around my hairline and even on my eyes plus my skin is dry and flaky and feels constantly tight and sore.

I also have ulcers inside my mouth and on my lips, nosebleeds, a tummy upset, horrific acid indigestion and I am probably feeling a bit sorry for myself. I keep trying to remember that I am getting away quite lightly with this whole chemo business. I've been in work every day this week - and been busy - and managing not to be sick once (okay I was sick this morning). I am also lucky in that my mum has turned into Mary Poppins and provides a cooked meal every evening and empties potties and ushers children around during the post-chemo week. Al puts up with a lot and takes over the minute he gets home. But all of that aside this isn't the most fun thing I've experienced. And I am not sure I am the most fun person to be around a lot of the time. 

Lance Armstrong called his dog Chemo because chemotherapy saved his life. I am hopeful it'll save mine too but as dog names go I have more pleasant (and non-drug related) memories that I'd like to draw upon. He could have called his puppy Steroid - that would've been an interesting choice...

In a more positive minded way I am also holding onto the fact that life gets better for me from the weekend; when the worst of the post-chemo symtoms are abating and by Thursday I'm actually feeling pretty good. Just in time for my next dose. But I will get a few days of feeling good and energetic and without a sore mouth - the ulcers and the spots are actually a pretty debilitating combo.

So for now admire my stoic bravery from a distance - it's not that pretty or that stoic close up, just ask the rest of Sylvan Way...

28th September

Tweedledum and Tweedledee

September's final chemotherapy treatment bordered on the slightly surreal with some brilliant evidence that even faceless bureaucrats can have a great sense of humour (thank you Michael).

The first odd moment came when a man sat down in one of the chairs wearing black jeans, Nike trainers, a orange stripey jumper with a leather jacket and a flat cap on backwards (ref. Ben V-P from Curiosity Killed the Cat for those of you with a passing knowledge of the 80s). He was late 30s early 40s with a shaved head, in that 'bloke' way, and in for his chemotherapy treatment too. Nothing strange about that until he got up to leave the room (having taken off, and left, his jacket and cap) and then about 10 seconds later reappeared from a different angle with the jacket and cap back on. Bearing in mind I've only just stopped convincing myself that I have a brain tumour this was a little weird. I quickly realised that this was the twin brother of the other chemo patient.

The nurses on the Chilworth Day Unit (some of who are not known for their rapier like wit) then proceeded to make the same joke about giving the wrong brother treatment about 15 times in the course of a 10 minute period. I felt that the twin who started eye-rolling and looking a bit bored was somewhat unjustified in his frustration as let's face it, if you dress the same as your grown up brother what do you expect? These were adult men making a decision to reinforce their identical twin status through clothes - deal with it!

I should also add that my slight lack of sympathy was compounded by twin A choosing some Chilworth Day Unit tunes and twin B cranking up the stereo so we could all hear Cliff  Richard blasting out. Cliff Richard! I mean Cliff Richard! I am already poorly! And then they sang along. I was at a Cliff Richard Karaoke Chemotherapy Convention and it wasn't out of choice. My response to this terrible onslaught was to email my friends at Battersea and ask for some amusing pictures or stories to distract me, one person took this a stage further and decided start an epetition at Downing Street.

Today they came back to him

The Downing Street Response - "the Silver album is a pop classic"...

Proving that whilst Civil Servants have very dodgy taste in music (Reader, I married one) they also can have a great sense of humour.

Medical news

The spots are clearing up! Yay! Yay! Yay! Double dosing on the antibiotics has had an effect, and whilst my chin is still not the smoothest place on earth (this title is claimed by Julio Ingleses sheets) it is significantly better. Most importantly I am feeling less stressed about seen in public, it hurts less and the itching has died down. All very very good.

Chemo is still leaving me with significantly less energy than normal but I am also feeling some positive benefits. My liver swelling seems to have calmed down a little and I am feeling far more comfortable. These are all positive signs.

Zitta-dee-doo-dah! Zitta-dee-day!

So after complacently cruising through chemo round 2, I can report that like most aspects of the cancer journey there's a fairly consistent cloud to every silver lining. In this case just three days after the cetuximab was pumped into my system, a rash appeared on my chest. This, of course, is recognised as being a sign of it's efficacy and I am very pleased it's to have the rash. Initially bright red rash appeared with the odd 'acneform' spot that was painless and easy to ignore. No comedones in sight just a maculopapular rash. Oh yes, I am fully conversant in the language of spots these days. For those of you less fluent 'comedones' are blackheads, and an 'acneform' rash is 'acne like' but not actually acne and maculopapular means something too. And I have really bad peritus (itching). Lord knows why the medical profession can't just use common parlance (speech).  

Anyway by the weekend my 'ooh this is a positive sign' happiness had worn off and the horribly itchy spots throughout my scalp, round my nose and mouth had become a tad less exciting. I now have spots across my scalp, covering my chest and back, round my nose, hairline and chin and I'm wearing so much cover up I could easily join a reality TV show - admittedly it's pasty white not orange but the look is all there. I've had to stop wearing a necklace as the itching is so unbearable and have taken to downing a few anti-histamines to cope. 

So by Tuesday the scabby horrible itching reduced me to tears and I phoned my lovely husband at lunchtime sobbing with self pity. He was of course wonderful and whilst my skin still felt horrible at least I'd had a virtual hug and some extra support. 

Fortunately my up and down emotions can create some moments of humour. Later on that day Al received another phone call from me. When he answered he could only hear some strange noises and my voice breaking up. Thinking I was crying he reassured me that everything was okay and said "it's alright sweetheart you can talk to me, just tell me what's wrong". What a lovely man. Unfortunately, or fortunately, depending on how you look at it, this kindness was directed at my back pocket. Al was gently and sweetly, giving love and support to a misdialed call. I had inadvertently dialled his number when I put my phone in my pocket. Still as someone with bowel cancer I expect my bottom could do with extra reassurance.  

Today's trip to the hospital was fine, and they've doubled my antibiotics to keep the cetuximab rash under control. This is good, as currently without make-up I could frighten people. Rather than 16 from the back 60 from the front, I have a case of 14 from the chin and 40 from the wrinkles. It does seem a little unfair. However I am also aware that without the spots I would be seriously stressed that the cetuximab wasn't working. I can tell you all, that other than the vaguely pleasant train trip to Guilford, there's not a completely easy part of this journey...

My 14 year old chin...thank god for cover up!

My Chemical Romance

So what a difference two weeks or at least a major change in attitude can make.

Two weeks ago chemotherapy laid me out; it made me sick (although some of that was a bit of medication adjustment needed), my bones and muscles ached and I was completely exhasuted. The weekend of chemotherapy was basically meant a lost one. And not in any sort of fun way.

The second weekend of chemotherapy has been far more managable. In fact, I've pretty much sailed through it. Yes I've been tired, and the steroids are a disaster sleep wise but we also completed a successful (and obscenely expensive) trip to Waitrose (I'm much too ill for Sainsburys), had a lovely long dog walk and I've made brownies, cheese scones and a cherry cake, oh and squeezed a sharp new bob into the mix (haircut). All good.

To back-track to Friday night...

On Friday night I attempted to exorcise my steroid demon through a relaxation app, Tibetan monk chants, and yogic breathing - did I mention the resurggence of my inner-hippy? I managed to avoid whacking Al in the face but by 2am the gentle and holistic techniques were out the window and some sleeping pills were required. A blunter tool but pretty essential. I could feel my limbs twitching and buzzing and thoughts were racing through my head randomly and annoyingly.

Not relaxing enough for me.

However this didn't destroy Saturday. Al managed to keep Rosie under-control (this is a major achievement) and I went back to sleep for an hour. So the day was recovered and had a lovely walk with the dog, and the chemotherapy.

Al says this is a hand grenade. I say it goes in the washing machine. Men are from Mars...

Saturday night saw a far early submission to the sleeping drugs but then I woke up at 3.30am wide awake and speeding through the valley of the 'roids. Getting a grip on my other side-effects has been wonderful but this one is a challenge.

So other than some sleeplessness it's been exceptionally uneventful.  Maybe I should make this blog about baking?

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. 

YOU DO NOT WANT THIS IN YOUR LEG.

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. 

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...