I’ve been hiding and a little bit mad…

I’ve not written to you all for a few days now. I’ll be honest, I got a bit scared. Firstly, I genuinely thought about 5 people would read my blog not the nearly 1000 of you that have done so far! What on earth is going on there ‘eh?? Don’t get me wrong, I’m absolutely thrilled that I’ve not been laughed out of town (yet) and that the messages from people in similar situations to my own are just flooding in. I have received messages of support, love, thanks – it’s been incredible. But in a way, it has been a stark reminder of just how serious my story is. That it doesn’t matter how many jokes I weave in to my journey, the fact remains the same: I climbed the fence and peered over at what’s on the other side of life and only by sheer luck (and more than a touch of stubbornness) did I somehow manage to start to find my way back down.

I also chose to launch the blog on with hindsight, a bit of a crazy day! Just after I set these words free to the world I set off to the hospital for my “end of treatment 2” review with my oncologist. As my friends and family say, I never do things by halves! And I sat there waiting to see him watching the numbers of people who had viewed my blog rise up and up,  and I felt the panic set in. What on earth had I done? Who did I think I was actually going to help with my strange mix of heartfelt and quirky humour? And then I saw the doctor and life seems to have changed its course again…

One of the first things I said to you all was that I wouldn’t get the happy day of “the all clear”. Well, that remains true. When I saw my lovely but very pragmatic (if there was ever a patient/doctor match made in heaven it’s probably us two!) he got straight to the point. “I’m really happy with the response we have had to this treatment, BUT, we are far from done with you missy”. I don’t really know what I expected; I’m the one that has been reminding everyone to not expect a grand finale. And yet, something about him saying that just broke me a bit.

So the news I did get was, as is usually the case with these things, partly really good and partly not what I’d hoped for at all. The good news is that, for now at least, we have finally managed to contain the cancer it seems. My body scans show that there are no further tumours and the ones that were in my kidneys have shrunk to pretty much nothing. Utterly amazing!! But, the doctor took great pains to stress that his view is that as soon as I stop treatment the beastie will be back to its old tricks, the bar will re-open and the drinks will be flowing!

The wise doctor’s recommendation is that at this point I move on to long term oral chemotherapy. Again, I know, I know, that compared to the alternative, in so many ways this is an excellent result. It should mean that I get a reasonable length of time before I require intensive treatment again; however, it does mean that life will continue to be restricted. He immediately advised me to not to even attempt to return to work full-time, that I would need to ensure I didn’t push myself too far. I would need plenty of rest, there would probably be some of the changes that had happened this year that wouldn’t return to “normal” such as my taste and other senses. It is fantastic that this is even an option and yet it feels like yet another card I’m being dealt that I have to just accept and make the best of. These aren’t things I am going to need to do for a set period of time; this is forever we are talking about now. I feel a bit like I’ve spent a year compromising and shifting my expectations down in life.

In the days that have followed I have felt genuinely angry for the first time in this whole process. Even my beautiful puppy dog, Bear, who has been my saviour throughout this year in sooo many ways, seems a bit concerned that at any moment he is going to get turfed out of his comfy bed! In fact, I did actually shut him downstairs for the first time in months the other day because I just felt like I wanted to be completely alone with my hurt and my rage. His little cry was too much for this softy to bear – I lasted all of 5 minutes before I longed for that cheesy wotsit paw smell to be snuggled up next to me! It’s completely normal for people facing any life changing situation to feel anger, of course it is. I am the first to say this to everyone else. And yet when it comes to me it appears I am not very good at taking my own advice… Having viewed the whole process as a journey and tried to suck up as much learning as I could from it, it seems to have come as a bit of a surprise to me that on Tuesday evening when I sat making my calls to family and friends as they said reassuring things about the news being good,  all I wanted to do was scream at them that it wasn’t good, this wasn’t my life, I wanted to get off…

I’ve gone from a 28 year old woman who was full of plans for a future not yet lived to someone who has to live completely in the moment to not fall apart. I could definitely give mindfulness coaches a run for their money now! You’d be amazed how long I can stare at a crack in a wall for…Believe me, I could win an award for wasting time.

So, here I am today. I am sat in my hospital bed, the last of my intensive IV chemotherapy treatments has just started its journey through my veins! Shortly I will feel drunk-I’ll try not to keep writing at this point but I’m one of those chatty drunks so if you read this and the end doesn’t link to the start at all – soz I’m just high on the delightful cocktail of anti-histamines, steroids and alcohol that prepares my body to receive the chemotherapy. I’ll be here all day today. There will be moments where I will wince in pain; most chemo doesn’t hurt when you receive it but this one is a nasty bugger and stings (another “little” understatement there – for those of you who have ever received high dosage treatment or supported someone who has, you’ll know what I mean) as it courses through you. Then, I’ll sleep, that kind of heavy drug sleep that leaves you completely confused about what year it is and who you are. And then I will leave. I will walk out of here and (all being well, barring me not doing my usual trick of getting some completely obscure side effect) be free from the weekly trips to the hospital for the next 4-6 weeks whilst my body heals enough to start my next journey.

And I don’t know what I’ll do or how I’ll feel but one thing is for sure: today, I have decided to use all that anger and hurt and sadness and amazement I feel. To harness it and build something better; for myself, but also for all of us. The response I have received so far assures me to the core that this is exactly what I should be doing. Sat here writing this is where I should be. I am the “proper” cancer patient I was so scared of becoming. Sometimes I falter, sometimes I feel like I’ve had enough and I can’t cope but I will never give up, I’ll never be ready to say goodbye. I’ll go stubbornly into this next phase of my life with my head held high and a new sense of joy in the small things in life. I’m not saying I’ll never moan about my hair again (oh I’m actually longing for that day at the moment – I’m staring waaaay too much at women with long dark curly hair like mine used to be) or that the kitchen roll has been left in the “wrong” place (admission of OCD tendencies there for you all). Jeez, I’m not a saint! But I am strong. I know that now. They’ve removed my womb but they’ve not removed those muscles after all…

JJ x

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5 thoughts on “I’ve been hiding and a little bit mad…

  1. You are such an inspiration JJ. I’m a friend of your Mum’s and have been following your blog since she told me about it. What a read!! So powerful!! My Dad has incurable cancer and never opens up to talk to us about it. He keeps it locked up inside…..maybe it’s to protect us? Maybe he can’t bear to talk about it? Who knows?

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    1. Hi Elaine, thank you so much for your message. You know, I have had so many messages similar to your from the families of people living with cancer who have said the same as you. Makes me even more sure I am doing the right thing saying all the things that so often go unsaid. By myself as well! I’ve tried to keep a lot of how I have felt from my family too until now. But sometimes, you’ve just got to trust that the right thing to do is let it out. All the best. X

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  2. But I know one thing for sure, reading your blog has helped me to understand what he may be feeling. Without knowing it you have helped others and for that I am truly grateful.
    I will definitely stay with you on your journey. Sending love, hugs and positive thoughts ❤

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  3. You are an absolute **star**…I have laughed and cried reading this. Your tenacity is inspiring. The message is clear. I can hear your voice in my mind as I read it. Don’t ever stop being strong. You have an army of us who will fight with you. However much fairy dust, rose petals or unicorn poo (did I get that wrong?)…it takes…you are one very special lady. Thank you for sharing your story.

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