Where. Do. I. Begin.
I guess you need some kind of an update. I realise I have been a bit quiet on the health front and there’s a few reasons for this. This year has been an odd one in the cancer department, and one that’s definitely tested my sanity, my resilience, my patience, my strength. What you need to know is this: I am well. But I actually want you to know so much more than this, I want you to know so much that is in my mind that I really struggle to articulate.
Earlier this year I found out the cancer was active again and was starting to grow in my liver and bones. I had my ovaries removed to potentially help the cancer get less food from oestrogen. That month I also delved very deeply into the world of alternative (although, I don’t really like that word as it sounds too hippy and forbidden) medicine and opened my eyes to whole new world of options. In May, having spent some intensive time trying various interesting medicines, and continuing on the cancer drug I had been on, I was told the cancer was still progressing. This news completely floored me. I was lower than I had ever been in the whole history of Kris with Cancer. But having had time to reflect on that period, I realised it wasn’t so much the news, than the way it was delivered to me and what followed. I was given one option, and that was to go back on chemotherapy, something I had managed to avoid for 6 years. I had aggressive chemotherapy the year I was diagnosed because I didn’t know better. I knew nothing. And now, I know too much. My oncologist wanted me on a trial, not a trial drug, but a trial way of administering a chemotherapy drug that had been around for a few years. I was scared. I was frustrated. I was sad. I pleaded with my oncologist to think about my quality of life, his response was “You wont have much of a life if you don’t do chemo”. This was a man who had been so great at keeping me on my hormone drugs, even when new cancer cropped up he was happy to not do anything drastic. I was gutted that he had changed his tune. I thought long and hard about the drug and my freedom. This was before my Iceland trip, this was before my beautiful gorgeous little holiday with my twin sister in Italy. I did not want to compromise, I wanted those adventures. But I also wanted to live. A few days before I was due to sign on the dotted trial paper line my friend Maddie called me to tell me she’d tracked down the oncologist who knows his shit in Cornwall. I didn’t know someone like that existed. I thought London doctors knew it all, and people who weren’t in London just didn’t have their finger on the pulse. I was wrong. I have moved to Cornwall (sorry if you didn’t know this, I didn’t want to make a thing of it!) and added to the fact that I didn’t want chemo, it would have meant traveling up to London for it! (Although, I am still in London A LOT anyway but that’s besides the point).
So I managed to get myself a very last minute appointment with said oncologist in Cornwall who said everything I needed to hear. He told me that my quality of life mattered and that everything was MY choice. He told me if I waltzed in one day to tell him I’d decided to chew on some dandelions for the rest of my days it would mean F all to him. He didn’t believe I needed chemo because I am not unwell, and what was the point in making me unwell? He told me he would try to get hold of a brand new unlicensed drug for me (which is a clever ‘targetted’ drug) because he knew people… he basically understood me immediately. Along with him came a lush secondary cancer nurse specialist - a NURSE SPECIALIST JUST FOR ME. I’ve never had this before. She calls me to see how my side effects are going. She let’s me know my appointment times! She’s my cancer PA. And I love her.
I started a new drug on the same day I saw my new guy and with it came horrible mouth ulcers. So you’d be forgiven for thinking mouth ulcers are nothing in the great scheme of things, that I have endured worse. Well BOLLOCKS to that, they hurt! They made me miserable. I love nothing more than eating, and these little mouth fuckers stopped me from eating. I tried my best to adapt but was over the freaking moon when new guy confirmed he’d managed to get hold of the brand spanking new sparkly unlicensed drug for me - he even called me to let me know. HE. CALLED. ME. It works in the same way as the previous drug but it far less toxic. Alongside this I do mistletoe infusions and inject myself with mistletoe twice a week. (I definitely think it helps with my energy levels.)
In September it was time for a dreaded scan. It had been the longest gap between scans that I’ve had for a while so of course I was bricking it. The scan experience, however, was delightful. I suppose anything c ompared to Charing Cross hospital in London is going to be a dream (a disclaimer: I am VERY VERY grateful to that hospital, it kept me here for 4 years) but it was particularly special to be asked what music I would like to listen to during my brain MRI, because the chap had spotify. I requested Stereophonics so I could zone out and think about Festifeel which was happening very soon after. The man was happy with my choice too, he loved Dakota as much as me. It wasn’t just the attention to music detail, it was also the fact he spoke to me throughout the scan. He knew I had had these scans so very many times, but still talked me though each section of the scan and told me how long I had left in there. Perhaps he could tell I was anxious, but his time and sensitivity meant SO much to me that day (thank you nice radiology man).
So, my London oncologist and I parted ways (he took over 3 months to share my notes and images with my new guy. Out. Of. Spite.)
And my results ? Well, they are good. I heard today that my cancer is stable and my liver is better than it was before. The drug is working. I have learnt a lot over the last few months about how I cope with news, both good and bad, and how I want to approach scary thoughts. I guess I can be philosophical now that I have good news, but I genuinely think this shit storm of a few months was meant to be. I needed something drastic for me to move my cancer care to Cornwall, and I needed a new perspective on my health and my future again. I know this won’t last, I am not in denial about that, but I am revelling in good thoughts right now and that’s all that matters.
I have been wanting to write this blog post for so long but I was afraid. I didn’t want to get excited about a new doctor without knowing that I was getting better. But you know what? What could be more scary than what I have already been through? Doctors shouldn’t scare me. The only thing that should scare me i s not squeezing every ounce of goodness that I can out of this life. I don’t give a hoot if said silly London Professor reads this and gets upset - I AM THE PATIENT. I am the one who has to turn up, be present, make hard decisions and somehow cope with a life with cancer. 7 years is a long time to stay sane doing this, and I think I am doing a fucking brilliant job.
And do you know what else I am fucking brilliant at? Organising Festifeel. I am a great event organiser. I am not brave. I am not inspirational. I am not the girl with cancer. I am a great event organiser and I can’t tell you how happy that makes me. I needed Festifeel as much as it needed me because it has distracted me SO much and caused me all the stress, all the buzz and all the exhilaration that not only keeps me sane, but (and stay with me here) also keeps me alive - yeah, I mean that. Adrenaline is a wonderful thing. The buzz CoppaFeel! gives me (not all the time, mind) is healthy and it’s g ood. A few years ago a horrible human tried to make me feel bad for using CoppaFeel! as a way of dealing with cancer, although I never claimed it did. We have proven enough now for me to honestly say that what comes first is SAVING LIVES and what I will happily and proudly put in very close second is that it has helped me deal with cancer. And so what? How lucky am I to have found my OWN way to dealing with the one thing that scares us the most.
So when Stereophonics played Dakota at Festifeel, I felt every emotion possible. I can’t ever make you understand that feeling, and I won’t even try, but it felt good, and I felt alive, and I felt well. And I am so grateful to so many people for helping to make that moment happen, you know who you are.
Lastly, I want to just say that where I am right now, and how I got here, didn’t take a ‘fight’ a ‘battle’ a ‘rebellion’ or any of the other annoying words that are b eing thrown around at the moment (mainly due to a certain TV show on Channel 4 his month), it took patience, understanding, love, hugs and hard work. That’s what cancer means to me. I don’t see why we need to keep throwing these war words around. I am tired of them. Aren’t you?
I am going to leave you with a poem the lovely talented gorgeous Laura Dockrill wrote for me, about Festifeel, about turning something shitty into something great. The last para got me BIG TIME.
500 WORDS ABOUT IT
I am the realest thing you’ll ever
know- a piece of art
on the wall of some fancy smart gallery
that doesn’t like the sound of high heels but secretly does
whisper. whisper. shhh.
I stand there proud, smug
and people will stare at me for ages
wondering what the thought was behind it and
I’ll just shake my head.< /i>
I am a piece of music that sometimes
goes weird and pops the speakers
and scratches and people will debate
if I was as good as my first record
but I am changing and evolving and sounding amazing
and that’s the honest real life truth.
I am a big sculpture
right there in the middle
awkward and inconvenient
and NOT GOING ANYWHERE
SO GET USED TO IT
blocking out the view in the offices behind
but when the sunlight catches me right
I cast tremendous shadows
of thundering design
and people can’t help but say wow as they eat their sandwiches
under my mammoth robust pointless mightiness
as I keep the pigeons warm.
I am a loyal and patient landlord.
I am a plate of food made up on the spot
inventive and nurtured by love
and the tired remainders of what’s left in the fridge
mixed with tinned tomatoes
and I might be alright
but I could be not too
but I could – just maybe- be the best meal you’ve ever had in your life
that gets written down on a piece of paper and
handed to strangers for days to come.
I will never just ‘fill a hole.’
I am a film sometimes that has a glitch
that squabbles with itself and is off pitch
but watch how I get called ‘cult’ and have
people dress up as my main characters at
parties for irony.
I am a letter that gets opened
and tears might fall with it
I’m sorry about that
and on the second read you might agree
more with me i>
but if you don’t, then that’s fine too.
And you’ll fold me away,
save me regardless and read over the words
and say to your own brain; that feels like a batrillion years ago.
Are you still my friend?
Yes of course I am.
I am the way an animal looks at you.
I am a natural thing
immediate yet ever lasting.
My oh my I am a sticky pan of
burnt grey scrambled egg, you’ll never wash me off,
claggy caught in cloth,
I’m those birthday candles that never
blow out, returning
even when the joke wears
and gets lost but then gets funny again.
You’ll find me in a junk shop.
My fingerprints everywhere
my dust on the sills
my hair in your sheets.
I’m j ust
going and coming
like all things do
but I touch this planet, the same way it touches me
and it will still move afterwards
just like it did before
and most of all, free.