The theme park from hell (what it feels like to be diagnosed with cancer twice at the age of 31)

I have scratched my head to try and describe in as few words as possible and this is what I’ve come up with. It feels like simultaneously riding every roller coaster at a diseased theme park from hell. Ironically as I type this, I have the Red Hot Chilli Peppers ‘Roller Coaster of Love’ song stuck in my head mocking the subject matter I am about to write about.

I have just realised how much of the last 6 weeks have been a complete and utter roller coaster of emotions. From being diagnosed for a second time with breast cancer in less than a year, to being told it has spread to my liver and possibly other parts of my body and is now incurable, to losing multiple members of my online community to the same disease.

It is only now that I have really sat down and started to take stock of what has happened. And that’s not even out of choice. It’s only because my white blood cell count is too low to have chemo so I’ve had to rest up, avoid germs and contain myself in my bedroom prison till I feel better. Hence lots of time to think (and clog up Facebook’s news feed with posts about cancer and other stupid stuff, sorry about that folks).

So, just in case anyone out there wonders what it actually feels like to be diagnosed with cancer twice at the age of 31, here is my experience in black and white. You had better pull up a chair and get your reading glasses on…

Terrifying

Being diagnosed with cancer has been the most terrifying experience of my life. Even worse than the time I got stuck down the side of my grandparents bed upside down in a sleeping bag and I nearly suffocated. Even worse than the time I let my best friend drive my 1983 ford Escort at 110 mph on the motorway in torrential rain and almost flipped the car.

Back in May 2014, when the breast care nurse took me into a side room and uttered those 3 words ‘you have cancer’, it literally felt like my stomach had been turned inside out and ripped in half. The physical reaction was immense, my body went into shock, I almost projectile vomited into the face of the poor medical student who had the misfortune to be in the same room and I couldn’t stop shaking for days after. But slowly as weeks went by and I got through one hospital appointment and procedure at a time, I felt psychologically better and like I was processing what was happening. I felt stronger, stronger than I’ve ever felt before, more independent and more sure of myself. When I was given the all clear in November, I felt elated. In my head I was shouting ‘fuck you breast cancer, you can’t kill me, I’m invincible’. I started planning my new life not involving cancer, going back to work, applying for a PhD, going on dates and starting up a new band.

Then came the devastating news that the cancer had returned. That it was not only a different and more aggressive type of cancer than before, but it had now spread to my liver and most likely incurable. I was given a worst case scenario prognosis of 6 months and sent away from the Sussex Cancer Centre in a state of shock. It was at that exact moment, walking away from the hospital clutching my mums hand that I had reached a new understanding of what being terrified truly feels like.

Luckily this new found stage of terror has subsided but with every scan I have, there are results to be given and the terror rears it’s ugly head every fucking time. I cannot explain what this feels like to those who haven’t experienced the ‘results appointment’. A mini roller coaster all of it’s own, the terror of anticipation before you go in, it could go either way, good or bad. Good results = elation. Bad results = more terror.

Worrying

Probably the worst part of having cancer for me has been the worrying. It’s worse than any of the pain, any of the chemotherapy and any of the operations that I’ve gone through.

When I had primary breast cancer and was told it was curable, I was plagued everyday with the worry that it might come back. When it did come back and I was told that it was incurable, I weirdly felt relieved. I thought ‘fuck it, at least I don’t have to worry about the cancer coming back’.

Now it seems all I have left to worry about are any physical symptoms that I am feeling. If have a headache, I worry that it’s the cancer spreading to my brain. If I have chest pains, I worry that it’s the cancer is spreading to my lungs. If I’m exhausted, I worry that I’m nearly at the end and have only weeks left to live.

It seems that worry is a whole disease in itself and one that I struggle with every hour of every waking day. The only remedies I have so found for alleviating the symptoms of worry are booze, Valium and anti depressants but even they don’t work for long.

Isolating

Having cancer is isolating. Having cancer as a young(ish) single woman who should be in my prime, furthering my career, dating, planning girly holidays and having a busy social life is a devastatingly lonely place to be in. Especially when you’re surrounded by your friends doing all of the above plus having babies, getting married and buying their first properties. The last three things are experiences I will probably never have because 1. I’m now infertile due to the amount of chemo I’ve had, 2. I’m not going to live long enough to find a man, fall in love, and then get married, and 3. having cancer is so financially crippling that I can barely afford to buy a lego brick, let alone a house.

Don’t get me wrong, I don’t resent anyone for having a normal life and I don’t want to sound bitter. I just want to convey how it feels. I am so incredibly happy for my friends births, marriages, career successes and all of the other events that are part and parcel of the life one is expected to lead as a 30 something. I enjoy looking at Facebook and seeing holiday snaps and photos of engagement parties, reading statuses about baby puking up breakfast and how a newly fitted kitchen can make people so happy. I would NEVER want anyone to feel like they couldn’t tell me good news because of what I’m going through, that would be heartbreaking.

In a weird way, it feels kind of good to be the odd one out. I have always felt different and I have never particularly wanted any of the above, except of course a highly successful career as a world renowned artist slash musician (I’m still working on that).

There’s not a day I wake up and the first thing I think of isn’t ‘oh fuck sticks, I’ve got cancer’. There’s not a day that goes by when my own mortality isn’t thrust in my face and my mind ponders questions like ‘I wonder what dying will feel like’ or ‘I hope I get to record that song before I die’ or ‘I wonder what my last Facebook post will be’. Silly, pointless things that no one else probably thinks about unless they’re in a similar situation. I know my life will never be normal, it will never even be a new normal, recovering and adapting to life post cancer. Me and cancer will just have to learn to live together until one of us kills the other one.

Guilt ridden

I feel so incredibly guilty for upsetting the people I love and care about with my fucking shitty disease. No parent should ever have to watch their child go through this, I cannot even begin to imagine what my mum must be feeling. My brother, my family and my dear amazing friends are all putting on their bravest faces, rallying around to help and support me when I know underneath their cheery smiles that they are devastated. I can’t help but feel guilty for causing such pain.

I hope my nearest and dearest can take comfort in the fact that I actually feel happy most of the time, probably happier than I was pre cancer. Currently I’m not suffering, most of the time I’m not even in much pain and I’m going out and having fun when I feel up to it.

A light at the end of the tunnel

This all encompassing roller coaster of a cancershitstorm experience has given me an entirely unique perspective on life. I have never felt so loved and so able to give love. I have never felt so supported and cared about. I have experienced so much kindness from friends and from strangers, my faith in humanity is completely restored (and I was a cynical bitch before this)! I feel lucky to have what I have. I don’t feel unlucky that this has happened. I have learnt that life is too short to dwell on the past, worry about the future and obsess over what may or may not happen. I live in the present and right now at this very second, my present is a humbling and amazing place to be.

I have met an entire online world of amazing people going through a similar experience who are there to hold my hand every step of the way. I’m meeting some of them in real life next week and I hope to continue meeting them in real life for the rest of my life.

I have done things that I never would have done pre cancer. I feel at peace. I feel stronger than ever. And despite all the bad shitty news of late, I feel like I have a lot of life left to live. I still have hope that ongoing treatment will keep my condition stable. I still have hope that one day in the near distant future a cure will be discovered so that no other woman, no matter how young or old, has to experience simultaneously riding every roller coaster at a diseased theme park from hell.

23 Comments

Sarah Mac
March 3, 2015

Hey Jojo, one of your tweets came up on my timeline so just been reading through your blogs. I came off YBCN in Jan as found it quite overwhelming at times so have missed your updates. You’ve always struck me as such a dynamic, funny woman, so full of life and sass and I truly hope you prove all the Drs wrong and live a long time. After 9 months of continuos treatment (I manage to get diagnosed with aplastic anemia at the same time as the breast Cancer) I can identify with a lot of the feeling you mentioned above but would honestly say that this experience has changed me for the better and as you said I too have never felt so loved and had such a strong bond with those people in my life who mean so much to me. Sorry I’m rambling but just felt I couldn’t just look and leave without saying hi. I want to wish you a massive amount of good luck and good vibes for the next stage of your life. Cancer can fuck off, it messed with the wrong woman! Xx

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shelley oakeshott
February 28, 2015

Hi Jo, don’t know if you remember me
I used to knock around the Tumble down. Your brother Matt was in my year at college. I read this the other day as it popped up on my time lin. Penny had shared it. I’ve just twigged it’s you. I’m so sorry you’re having to fight so hard. This is not good. But fighting you are and I spose I just wanted to say I sort of salute you. we live in Brighton as well. Great place. Keep fighting and writing hon. Lots of love. Shell xxx

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Colin
February 23, 2015

Hi Jo,
I’ve just found your site by chance after randomly clicking on an Instagram link mentioning vegan chocolate orange cheesecake in a Twitter post. If that sounds frivolous I’m sorry as I had no idea what you’re going through…
I’m completely lost for words.

I’ve read the above post a few times now though and your attitude & strength is how I remember you but now amplified to 11 😉 You’re truly inspirational woman, keep on keeping on mate x

Colin B.
…from Brighton ATM (currently up North)

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T
February 22, 2015

Thank you for your honesty. I was diagnosed in 2012, went through all the usual treatments and now I am just waiting for the shoe to drop and find out about a recurrence. I am so sorry for all that you are going through. I wish you peace and ease.
I now have a much better appreciation for your perspective thanks to your very articulate post. Thank you for scaring.

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Bear Blues Band
February 21, 2015

We’ll play a song for you tonight at Blues For Boobs, mate. Watch our FB page in days to come – Maybe it’ll get to you via Melvyn Hiscock – He seems to be a fan of yours! As are we. x You keep kicking, you hear?

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Emma Joanne
February 21, 2015

Love you Jojo stay STRONG sister ..you are a shining beacon of light on a gloomy overcast day x

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Georgina Anderson
February 21, 2015

H Jojo, I am a friend of Angie and Stuart here in Crete. I heard of you from them a few weeks ago. I know no words can ease what you have but you need to know how much your strong will, and the fact that you still ;despite everything ; have the compassion to care how others feel is truly incredible. I struggle to find words to describe how amazing you are. With Angie and others, we are raising cash all the time to help get this bas…d disease beaten! Please know that there are many many people whom you don’t even know who have been changed for ever just from hearing of your amazing courage and sense of humour. Hang on in there and know you are loved .

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Elizabeth
February 21, 2015

i don’t think i’ve read anything that sums up my stage IV incurable feelings as much as this post does. i’m 30, so similar age, (though it’s rectal, rather than breast cancer), and i feel like i could tick off every point you’ve written here.

the guilt, the feeling somehow happier than you did before as weird as that sounds, the fear, the ‘oh god is that the cancer’ cough (yeah nah)… thank you. awesome, awesome post.

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- The Malignant Ginger
  February 21, 2015
  
  Hi Elizabeth, thank you for getting in touch and it fucking sucks that we’re both part of the rather exclusive but entirely shit stage IV club. Despite having to go through everything we have to go through. it’s nice to know that there are other young women out there having similar thoughts and in a weird way it gives me strength and shows me I am not alone. Wishing you all the best that you can stay well enough for as long as possible x
  
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julie M
February 20, 2015

Hi. My name is Julie and I don’t know you Jo but I am also a member of YBCN and am sure we would be friends if we met. You sound like an amazing person. What a bag of bollocks this cancer shite is. Sending you my love darling, you are a shining star. Thank you so much for your writing, you give me strength and have made me stronger. Thank you x x x x

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Imi
February 20, 2015

http://www.dailymail.co.uk/health/article-2699875/I-cured-cancer-CANNABIS-OIL.html

Hi jo, your inspiration to everyone your words really touched me. My mother also is suffering from cancer and has been going through the hard treatment. Me and my family having been looking into other means on how to help with this disease. We came across this article and have been in contact with few people regarding this…and they have given us a good response to how this oil helped them. We have not tried it for our mother yet but we are hoping that we will get hold of some and hopefully it will help cure her.

I’m not hear to sell any products or anything like that…but I just hope and pray that the future will be bright for u and others suffering!! God bless Jo! <3

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Helen
February 20, 2015

You are an amazing person, you help me and many more of us YBCN get through our days. An inspirational lady we love you jo xx

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Sarah Skitt
February 20, 2015

i’m sat in the lounge with my family reading this, and trying so hard to hold the tears in, because I don’t want to explain why I’m crying! Roller coaster is a very apt analogy and for me it is coming to the end of the ride and I’m beginning to feel ready to get off and go back to normality!!! ( I have a little box tucked away in my mind with my fear locked in it! ) You are being fab and have a fantastic attitude! I’m rooting for you and willing you on on on! X

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jo joned
February 20, 2015

HI Jo,
Just read this blog which was shared on YBCN, if which I am a fellow member. I the candor in this no frills monologue which captures the weirdness and surrealness of it all. As a fellow member of the “my boobs are trying to kill me” club I wholeheartedly thank you for sharing this. Good luck with the ongoing ride, hope there’s not too many loop-the-loops for you. Xxx

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Name *
February 20, 2015

You are an inspiration to everybody who reads this keep strong and live your life to the full sending all best wishes to you and your family also friends

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Amanda Delannoy
February 20, 2015

So sad Jojo

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paula walsh
February 20, 2015

You’re a star lady. You say just whats on my mind all the time and when you are ready to record that song you give me a call and ill be your backing singer xx

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Sam Knell
February 20, 2015

I consider myself the luckiest woman alive to have you for my daughter – there hasn’t been a day when you haven’t made me laugh or be proud of you even when I have had black times (as you know !) and laughter has been the last thing on my mind. Every single thing you’ve done – the music, the art, the positivity and the work that you have put into everything you have achieved have made me proud but most of all your humour and individuality. No woman alive could love their daughter more than I – if I could give my life for yours I would do it willingly. Don’t worry about how those who love you are feeling – concentrate on getting stronger and kicking the shitty viruses that have bought you down and hopefully getting better results after your new chemo. You are amazing and you know you have the support of so many people who love you and if love could defeat this awful condition you will still be here at 100 ! I’m praying to every god in the universe to make this happen because you are so beautiful and deserve good things to happen for a change. xx

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Vic
February 20, 2015

You are an inspiration. Thank you deeply for sharing so honestly. Wow.

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Clare Buss
February 20, 2015

I have no words that are adequate! I do not have cancer, I have lost several friends recently and have two more, one undergoing chemo and one who is terminal. Sorry, horrid word. All horrid words! But they and you remind me to be grateful. To try to live in the moment. To try for things that are scary, but ultimately rewarding. To stop regretting what might have been. To realise how lucky I am, which is sometimes difficult. Thank you for sharing xx

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Sarah
February 20, 2015

Jo, I have just read this three times. I have no words other than – you rock amazing woman.

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Phil
February 20, 2015

Wonderful words Jojo.. you are so strong… Worlds of love from me to you… xxxxxx <3

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Ivan Pope
February 20, 2015

omg, JoJo, what can I say. You take my breath away. There’s not really anything to say in response to the above except for, keep writing. You’re scaring me and you’re opening a window for me all at the same time and that is amazing. The truth will set you free.Thanks x

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