I'm Jojogingerhead, a 31 year old artist & musician based in Brighton (UK) satirically documenting the highs and lows of my secondary triple negative breast cancer diagnosis. Trying to see the light in a dark and scary situation without using the words fight, battle, journey or survivor.
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Return of the Jedi. Did I say Jedi? No whoops I meant cancer.
Return of the cancer.
It’s exactly two weeks since I found out that the cancer has returned and ten days since I found out that it has spread to my liver. I don’t think I will ever forget the look on the young oncologists face as she nodded pitifully at me and told me that in the worst case scenario, I have 6 months left to live.
Quite clearly that will not be the case as I am way too much of a stubborn fucker to be told how long I have left and there are way too many art and musical projects I have left outstanding that will take longer than 6 months to complete.
So here I am, 17 bottles of wine, 2 packets of valium, a lifetime supply of anti depressants, buckets of tears and many more buckets of anger and frustration later, writing an update of the the past 2 weeks events. It’s taken till now for me to process what’s happened and feel strong enough to sit down and see it all in black and white.
Just to clarify things in technical terms, I was diagnosed in May 2014 with grade 3 Oestrogen and HER2 positive breast cancer and treated with chemotherapy, lumpectomy and radiotherapy. In November 2014 I was told I had the all clear. Then just before Christmas 2014 I found a tiny lump in the exact same spot as the original tumour was removed from and after a biopsy in January 2015, I found out that the cancer was back. The breast cancer has now spread or metastasised to my liver and possibly other parts of my body (I’m waiting on scan results to see if it’s spread to my bones but initial thoughts are that it hasn’t). This means that I now have stage 4 secondary breast cancer, which is pretty much deemed as incurable.
To throw a spanner in the works, I appear to be some sort of freak of nature as the cancer re occurrence is a different type of cancer to my original one. I now have triple negative breast cancer. The oncologists seem to think that I’ve had two different types of breast cancer all along. The original one has now been treated but the triple negative one was there from the beginning in a tiny trace that didn’t show up on any biopsies up until the recent one where it had grown and spread to my liver whilst I was having treatment.
I was referred to the Royal Marsden which is a world leading cancer specialist hospital in Sutton on Wednesday for a second opinion and to see if I was eligible for any clinical trials but at this point we were still under the impression that I had my original type of cancer. I was then given a treatment plan to start a new drug called Kadcyla that targets HER2 positive cancers. Practically on the way home, the hospital rang with my full biopsy report saying that the cancer was a totally different type and that I’m now triple negative so my treatment plan has changed again. I start Carboplatin and Gemcarbon (basically more chemotherapy drugs) on Tuesday.
I am now being tested for gene mutations BRCA1 and BRCA2 as my mum had triple negative breast cancer at the age of 56. If I test positive for either of these mutations then I may be eligible for clinical trials where I’ll receive targeted drugs. I have to wait for 8 weeks for these results. The option of surgery is up in the air as I have to wait and see how my body responds to these new chemo drugs. I hope that they blast the shit of the of those bastard cancer cells but who knows. I will have regular CT scans to moniter my progress.
Although it does kind of feel like the NHS have given up all of hope of me surviving this, I will never give up hope that something can be done about my disease. I am talking to lots of lovely woman on the internet in very similar situations to myself and have glimmers of hope for certain treatments but this means fighting and seeking a lot of information for myself, which I am fully prepared to do.
One thing I know is that I will not mope and feel sorry for myself. I’m alive and well right now in this very second and I’m going to live every bloody day as it comes and make the most of what I can whilst I can. I don’t want people’s pity or sorrowful looks. I do want them to buy me drinks and bring me presents (large house red, kittens and studded objects please).
They don’t call this whole cancer thing a roller coaster for nothing. It was only a few weeks ago that I was planning my cancer free 2015, going on dates, deciding what colour and style to have my newly grown hair and worrying about what to wear to flatter my fat Christmas food belly.
Now I am dumped in a place far darker than ever before, literally fighting for my life. Fighting physically to remain healthy, fighting the NHS and oncologists to get the best treatment for my condition and fighting my own brain to stop torturing myself with thoughts of my own death and the effect it will have on my family and friends.
I guess that no one knows what their future holds. The same goes for me and I will cling onto any hope that I can, the thought of a world without hope is just too bleak. Life seems so much more technicolour and intense right now. I feel very much loved by my amazing mum, family and friends. I appreciate every waking day that I still feel healthy and well. I take joy in the small pleasures of life. I feel overwhelmingly supported by every message and comment that I’ve received both in real life and online. And I take comfort in what appears to be some sort of collective positive force of minds willing me to get better.
So, for now all I can hope is that… may the force be with me!
Jo i have only just read this as i had seen it on Facebook but not actually read it here. What an amazing and inspiring woman you are to others. Stay strong never give up never surrender. Live you life, enjoy every moment.
This really touched me and i am so sorry that this has happened to you, i wish i could do something to help or gain the superpowers i always thought i had to blast it out of you (i think ill get them for my birthday) you truly are a amazing person. If you need anything ever from me or boys i will do it. We are all here for you. And will you will always be The London Road Rose xx
TommyK xx
Awwww thank you Tommy for such a lovely message, it made my eyes wet! The London Road Rose appreciates your lovely kind words. Hope to see you play soon. Take Care x
Jo I followed your brilliant beautifully honest blog after a recommendation from Tessa I Can’t believe it What a blow ! But I can already hear in the tone of the blog that will fight this with everything you have .I can’t imagine the roller coaster of emotions and feelings you have to deal with but I honestly wish you well and will keep you in my prayers .Stay after the fucker you will catch him and kick it’s ass ! I know a girl here in Oxford who also has triple negative and she has a great blog /website .Making Triple Negative A Positive is Claire Grants work and it follows her plan and the many ways she is working to fight this bugger i hope it gives you some good information and inspiration .Wishing you well Jo .Look after number 1 -YOU !
Hi Brigid, thank you so much for your comment and for directing me to your friend in Oxford, I am all over her website right now having a good look! Comments like yours really mean a lot and help give me some fight for this bastard disease! Take care x
Wow Jo Jo,
You seriously have such an amazing way with words! I reckon you should be a writer! I would seriously read all your books x
On a serious note though you are the strongest toughest gal I know and just can’t beleive what shit you have been put through x Really sucks what you are having to deal with but I know you are going to do everything, crazy and sane) to get through this and we are all here to support you x Big Jedi hugs Jo Jo x Love u x
Dear Jo,
My old mate Melvyn passed on your story. I feel for you, very much. I have metastatic renal cell carcinoma (kidney cancer), diagnosed back in 2006. Inoperable and seemingly resistant to pretty much everything my excellent oncologist has chucked at it. I’m about to start on Interleukin-2 in a week or so, which I understand is a very tough regime. It’s a bunch of laughs this cancer marlarky as I can read you well know :). Jo, keep fighting the fight, never give up, you WILL win through. You’ve done it once, you can do it again, and clearly you want to win.. So you WILL!
I wish you the very best of good fortune, good luck, good will and warm, positive thoughts. If you ever want to talk about it, or moan, or cry or shout then feel free to use me as a sounding board.. 🙂
With very best wishes for the future… Graeme Hills (07729909914) x
go girl give that cancer hell and show it whos boss. Sending possative thoughts and hugs your way xx stay strong xx
I compleatly feel your pain, anger, confusion, dismay. You sound like a strong independent woman and that’s exactly what your going to need to get you through every minuet of every day. I also have BC and I was told last year I would never be in remission as I have lymphovascular spread. I took a deep breath and said ok so what can I do. And so like you I take each day as it comes. The very very worst part of all this was sitting down and telling my children I have really never felt pain like that. And I was cometary honest with them both. I am now supporting my daughter with the decision she has made to have a double mastectomy. I feel so so guilty for all of this even though they keep saying it’s not my fault. I really do feel it is. I would go through anything to save my children suffering any more. So I get up every day do my hair put on my make up paint on a smile and keep making the most if every minuet I have with my family and friends. I really do send you the very best and hope you get a treatment that works. It’s going to be a bumpy ride.
What a great blog post. I can’t imagine how you’re feeling but as someone who doesn’t know you at all, I finished reading your post and felt full of drive, hope for the future and determination. I can very much hear your fight, your “next steps” plan and your energy in attacking this head-on. Keep that strength, nobody knows what life holds and i’ve never heard a cancer patient say “they got it right”, so trust your intuition and let the battle begin. And make sure you have time for a whole load of fun and good times with your friends and family too. Oh and read up on marijuana oil, you can get it in Amsterdam and many of my friends who have suffered from cancer swear by it for both general well-being and recovery. Wishing you the best of luck on the epic adventure before you. C x
Love you. That is all I can give and I hope it will give You hope, will warm a little, make the world a little less dark and I pray you get to take it with you for I love you with no other reason than that you are another human soul and because of that worthy of all my love, my respect, my support and my good wishes. Love.