written off

Sit down and move your tea away from the keyboard; here’s the post I hoped I would never have to write…

On Wednesday Tom and I travelled to The Cotswolds to see a herbalist, exploring further alternative treatment to complement Professor Hope’s conventional medical approach.  I’ll skip the part about the picturesque surroundings, the 17^th century limestone hotel and get to straight to the serious bit. From now on I will be giving up sweets, chocolate, cake and (I’m shaking as a I type this) Rocky Road.

Ever since I was a little girl I have loved chocolate raisins, a weakness I inherited from my grandma Betty who always had bags of them lying around the house – some of which I suspect to have been months out of date, hastily grabbed from a drawer to keep me quiet.  Then two years ago my innocent fix took a sinister turn onto a much harder confectionery; when I found Rocky Road I was hooked.  It was just like chocolate raisins but with extra good stuff; Rice Crispies, marshmallow and e numbers galore! Alas, our beautiful relationship has now tragically ended in Splitsville, and it’s the herbalist who will be cited as the third party in the divorce papers.

Contraband!

Gone too on his recommendation are alcohol, red meat, shellfish and dairy; in are more vegetables, brown rice, brazil nuts and rye bread. White meat and fish are still allowed as is the occasional tipple so it all feels very manageable, and as well as helping to tackle my diet he also offered further encouragement that I truly can influence my destiny.

As well as a sense of purpose, we also left carrying five, very suspect-looking bags of Chinese herbs. I was relieved we had driven rather than getting the train, as an arrest at Brixton tube would have been a dead cert. The process of soaking the herbs, boiling them up and straining them in our little kitchen is a chore, but the hardest part is definitely getting two cups a day down me. It’s not as bad as the green shit but certainly no Maccy D’s chocolate milkshake!

And for those of you wondering how the week went on the new drug, I’m happy to report that it went surprisingly well.  Aside from feeling a bit tired and my right eye still being a bit bleary I have to say that this is the best chemo I’ve been on. I don’t want to tempt fate as I have just had the second injection today, but so far so good. It helped that I had an amazing chemo nurse looking after me. She was like a proper old school matron; on the ball, authoritative yet kind – and she got a vein straight away!

The hair is coming out thick and fast now and there are a few bald patches appearing at the back, but I think that this is more from the whole brain radio rather than the chemo.  I’m desperate to be well this week as a friend from home has organised a charity fashion show for Coppafeel back in Middlesbrough.  Lora has put so much effort into it, as well as getting support from local businesses and friends, so I would love to be able to attend to show my appreciation for her amazing hard work. Hair or no hair, as long as I feel well I’ll be there.

So that’s me.  Cracking on with the treatment and mourning the end of a relationship I thought would be life long.  If you want to do something for me this week then I have one small request.  Treat yourself to a bit of Rocky Road for me, please…

A plan has been devised; it’s time for more chemo. Hair falling out, eyebrows dropping off, eyelashes swept away-type chemo. Losing the hair on your head is invariably traumatic but for me it’s losing the eyebrows and eyelashes that really twists the knife. It annoys me to see some beautiful actress playing the cancer victim with a headscarf or bald head but with immaculate eye-brows and long luscious lashes. If you’re going to portray cancer then do it fucking properly; make her face look oddly featureless, her eyes small and undefined. Don’t sugar coat it because there’s nothing sweet about it at all.

And then of course there’s the wedding. What if it’s not back for the bloody wedding? You know, that one day a girl is supposed to look her best? The threat of having no lashes, no brows and maybe a buzz cut looms large amongst my worries. Maybe the title of my wedding blog will be Buzz Cut Bride. Sounds like a good comic strip character.

But of course I’ll do it. I’m happy to have a plan, as months off any medication has allowed the cancer to rampage unchecked. I picture it as some grubby squatter (no offence to any of you right-on Occupy lot) seeking out places of refuge to pitch a tent. Brain? Yes please. Lungs?  Nice and airy, ta. Liver? Bigger than expected but could be cosy with the right paraphernalia from Millets.

Then there’s a suspicious red mark on my chest that was worthy of a comment from Prof Hope today. It’s all a bloody worry and yet for some reason I can’t get stressed about it. I’m not sure why. Maybe because I’m not suffering any ill effects; I’m still here; functioning, getting around, living.

I’m meditating a lot which I’m convinced is helping.  I went to see an EFT therapist last week who was amazing. It’s strange to feel so calm in what should be a very traumatic time. For the moment I feel very accepting of what is to come.  I hope for minimal side effects and positive results. And I make no excuses to anyone when I say I truly believe I can beat this cancer.

Sometimes I feel that I have to justify myself for having faith in something miraculous, but why shouldn’t I have that as a goal? I have no idea why I am conditioned this way. I know I should be proud to believe in my ability to heal but instead I find myself worrying that people will think I’m in denial and kidding myself.

I have mixed feelings about the new drug.  It’s called Eribulin and has just been rejected by NICE.  I have managed to get it through a special cancer fund but have read of women who have been denied it, so there’s an element of guilt mixed in with my apparent good fortune. In the past I’ve reported about drugs getting rejected for work so it seems strange to be on the other side of the same news story.

According to the trials, Eribulin gives you an average of 13.1 months life expectancy compared to 10.6 on an already established drug. It’s not worth the funding, the people at NICE say. Of course, this is a highly controversial topic full of ethical questions and conundrums. All I know is that I’m thankful to be one of the lucky ones and I hope it does something really fucking nasty to the cancer. I’m talking bad-ass, evil, unmentionable shit.

And as all this goes on I feel so incredibly fortunate to have the most amazing man by my side. Tom makes me realise that there is a plan in there somewhere. To have met him and to be so in love and so at ease with someone is by far the greatest gift I have ever received. That, and friends who make me smile and surround me with so much support and kindness.

As I waited in the ward today with my friends Matt and Miffy, I was all geared up for the chemo when we were called into a room with the head nurse and pharmacist. Matt started rubbing my back and Miffy looked fearful. Here it comes, I thought to myself, another body blow. I quickly concluded that my blood results must have shown that my liver is in fact one giant tumour so there’s really no point in any chemo anyway.

“Because this drug has been rejected by NICE and you’re getting it on the special cancer fund everything needs to be completely signed-off, and unfortunately there is still a part of a form to be filled in. The person who can do that isn’t in until tomorrow so you’ll have to wait another day for treatment.”

Phew! We sighed with relief. “Worse things happen in Milan” Miffy remarked. Matt and I laughed; we had no idea what she was on about and neither did she but it seemed to sum up our thoughts perfectly as we mooched off into the grey, autumnal street.

no chemo today

I want to start this entry with a huge thank you for all the beautiful messages I have received from across the world. Although I am unable to reply to them all individually please know that I have read every single comment and the depth of feeling in each has touched me greatly.  Occasionally one may make me shed a tear but they have also given me a real push to get past this next hurdle. The offers for wedding photography, dresses, DJs, etc, have been beyond generous.  Once again, thank you. And not to brag (well, actually to totally show-off) on Thursday when the Daily Mail ran an article I’d written about my experience the blog got 26,000 hits!

But to bring things up to date I feel I should be tippy tappying on my keyboard with ‘Eye of the Tiger’ playing in my personal soundtrack right now!  I have completed three zapping sessions to the brain and so far so good; there have been few side-effects and the hair is still firmly on my head – in fact, the low-down from the radiotherapy nurses is that I might not even lose it all. This was mentioned in a cautious whisper in order not to raise my hopes too much but, at least for today, I have a full covering and I’m a happy bunny.

The process of the brain radiotherapy is pretty quick; you lie on you back and your head is strapped into a mask that was moulded to your face.  This is a bit uncomfortable but I clamp my yoga fingers together, close my eyes and visualise the cancer being blown to oblivion with every life-saving ray. It takes about ten minutes and then you’re free to go, back on the tube, looking like any other 28-year-old making their way across London.

As I sat on the tube yesterday a six-foot plus man came and plonked himself down next to me. There were other free seats but he stretched his legs out and nudged my elbow from the armrest as he spread his burly frame into a comfortable position. I looked up at him; he’d nonchalantly begun reading his mouldy-smelling book with no apparent awareness of having invaded my space.

Pre-cancer I might just have moved over with a ‘harrumph’ but nowadays I’m less likely to take this kind of shit. I straightened my back and gave him a firm elbow nudge to reassert my position. He looked at me and I stared right back keeping my arm where it rightfully belonged.  We sat like this all the way from Victoria to Brixton.  Sometimes you need to let the invader know you mean business even if it’s just a sharp assertive ‘fuck off’ nudge.

Hopefully radiotherapy will prove to be another nudge to the cancer, and the fact that that I’ve not been very ill has been a massive morale boost. I’m trying to play my part too; on the suggestion of an herbalist I’m juicing carrots and beetroot twice a day and am meditating to try and stay relaxed. These things can’t hurt so I may as well give them a go, and of course follow the advice of my inspiring medical team who are making this journey so much easier.

I’ve found that trying to concentrate on each day rather than the unknown future is also helping. I have to remind myself that none of us know what is round the corner and for the moment my body is stronger than the cancer; I am walking, talking, breathing and laughing. It makes no sense for the worry to become my main problem. The cancer is there but I am living with it and although at times it seems overwhelming I know I must ensure that it doesn’t entirely define me or take over who I am.

More bad news I’m afraid, so this entry will be a bit shorter than usual.  The MRI showed up more than the two spots the CT scan had picked up on. Although everything is very small, the sneaky disease has reached all corners of my brain and therefore the less invasive gamma-knife treatment is off the cards.  Instead my whole brain will need to be zapped with radiotherapy.

I will lose my hair again and the side effects of nausea and headaches could last for weeks. I am becoming the visible cancer patient once again and I can’t stand it.

It’s difficult to express all that I am feeling at the moment.  I’m angry that this could be happening, I feel utterly terrified that the cancer has the upper hand and I fear we may not ever get on top of it.

The last twenty-four hours have left me, for the first time, asking if the treatment is worth it? Is this a battle that I am written to lose?

This is all early days so I am hoping that in a few weeks time I can pick myself up off the floor and rebuild my emotional strength and courage to be the person I want to be for this latest fight. I know it’s in me somewhere but at the moment I keep asking how it’s possible for such a load of shit to continually be thrown my way.

I’m sorry I haven’t had chance to reply to all your comments but believe me when I say I’ve read every one and they all have helped me. Your words of encouragement, prayers and best wishes are the outstretched hands that can pull me up from the collapsed heap I am currently mentally lying in on the floor.

For those who know me personally and who have texted Tom to offer him your kind words please know I am so grateful. He is supporting me like no one and for you to let him know you are thinking of him, makes this part of the journey so much easier on me.

I will get there, this is just a huge blow and I need to work on bracing myself for the next load of treatment – if I’m off the blog for a while you’ll know it’s because I’m not feeling so well.

And if any of you happen to be wandering around with a cure for cancer in your back pocket please feel free to call your local GP, MP or hospital – this shit is getting heavy and this girl needs a break.