I’ve had my scans over the last few weeks, leading up to yesterday’s appointment with my Oncologist over the phone.
I assumed that since I hadn’t heard anything from my surgeons, it must mean that everything is fine. Though I obviously knew there had been something in my last MRI that had yet to be accounted for.
I lost the hearing in my right ear around 2 months ago. It happened after my big surgery back in November last year, so I assumed it was just the same thing, though there wasn’t any reason for it to happen again, and it seemed to be getting worse, not better. The pain in my face has been getting worse too. I’ve felt this specific type of pain before. An ache that comes from cancer pushing on things. Or perhaps it’s from an ear infection (suggested my surgeon when I mentioned it). It’s been another two months of playing ‘infection or cancer’.
Although worrying in advance about potential bad things means that if they eventuate, we had to experience them twice (and who has the energy for that?), refusing to contemplate what might be coming would be foolish too.
What’s going to happen this time? Will it be too late? Or will I get another 3 months before the next scan…
It was only a couple of months ago that I got the call from my friend’s sister. He’d had a different type of sarcoma in a similar location. He’d died, after knowing it was coming for a while. His slow decline made us realise that dying from a tumour in your face is probably one of the worst ways to go. Losing him (where, behind the sofa? under the fridge?) was hard. She and I are also close, and we cried to each other down the phone, unable to hug in person since she is in Sydney, and I’m in London.
Earlier this week, the brother of someone else I know with the exact same cancer as me, same location, same everything, sent me a message saying he’d died too. Within a month of his rediagnosis.
Less than a month, he got. From ‘the cancer is back’, to dead. If I’ve got less than a month, where do I want to spend it? What about 6 months? Where do I want to go to die? That answer came easily, after being with friends through their deaths – back near my parents. I love London, it is my life’s one great love story. But if the rest of my time is to be short, and fairly bed ridden, I’ll have to leave London behind. We’ve had a beautiful love affair and nothing can take that away. But it’s not the way I want to spend my remaining days, weeks, months. But of course, I couldn’t leave while my team still had options for me, because I wouldn’t want to risk starting fresh…
And what do I need to have done by the time I die? Get the novel published? Or at least know that it will be published? Do I make a bucket list? Will I even have the energy to climb Mt Everest or swim with sharks?
I don’t know how long I’ve got left, none of us do. But what I do know is that the cancer is back. Again. At the base of my skull. A 4cm tumour once again taking over my bones. It’s been a year almost to the day since I last found out it had come back. I don’t know what my options are. I’m waiting to hear if they think they can operate or not. Oh please, let them be able to operate… That’s the only option that will give me any chance, really, no matter how slim it may be.
So for now, I just have to sit and wait until they get in touch with me. I hope they don’t take too long.
And in the mean time, balance the urges to either spend my time having baths, binge watching TV and resting, or learning Rachmaninov on the piano, finally reading War and Peace, or starting to write a brand new masterpiece…
Hoping you get answers soon x
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Sending all our love and best wishes Jen. Martyn and Liz.
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Sending love and hugs Jen and hoping they can operate.
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Jen, we’ve never met but I’m a fan of your writing and can tell an extraordinary human when I see one. I hope the surgeons and oncologists have a plan to keep this bloody disease in line. It doesn’t seem possible that such a bright star can go out, but I know you have to prepare for worst at the same time as hoping for the best. Sending love to you and yours.
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Oh Jen, I am so sorry to hear your news. Thinking of you and what you must be going through.
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To my fellow Head and Neck Cancer warrior. Sending you big hugs & I hope the eyepatch I made you makes you happy when you wear it. Ali x
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We don’t know each other Jen, but you have my deep admiration. I’m sending you a heartfelt bear hug, and I wish you peace, come what may.
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Jen, I have text you, but incase you don’t see it –
Jen, I am so very upset reading your news. This bloody illness is relentless. Your buoyancy over the last few years has nursed me into a false sense of security thinking that it would at least back off and leave you alone. I desperately beg the powers that be to find options to give you time .
On my phone I carry a screenshot of some of your wise words that have given me such huge comfort –
“ But we can make a conscious effort to put aside the things that don’t serve us, as opposed to dwelling on the unknown . And I can guarantee we’ll be better off for it.”
I hope me messaging you is not weird. You reached out to me when I needed comfort and strength and so I am sending you huge hugs and my love on an invisible string. xxxx
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Hello Jen! I’ve been following your blog, from the side-lines, in awe of your energy and attitude. I do hope your cancer team get back to you quickly with answers and options.
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Oh Jen I’m so sorry to hear this. How devastating. I hope they can operate and send you all best wishes 💕
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Jen, you incredible superhero!
I hope they give you the answer you deserve right now. Though none of what you’re going through should be happening!
Do it all, do nothing, but continue with your shining light xx
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I have been following your blog too Jen, I love your writing . I so admire your courage and strength . I hope you hear from the surgeons soon with positive news regarding surgery.
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Reading this as I am sitting on a beach in Scotland with Henrietta by my side. Just thinking about you. Lots of hugs. 🌻
On Sat, 13 Nov 2021 at 10:05, The Cancer Chronicles wrote:
> Jen Eve posted: ” I’ve had my scans over the last few weeks, leading up to > yesterday’s appointment with my Oncologist over the phone. I assumed that > since I hadn’t heard anything from my surgeons, it must mean that > everything is fine. Though I obviously knew there had ” >
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Dear Jen
I have enjoyed all of your blogs detailing your journey with your cancer, especially as I am a dentist-and your treatment has detailed so much about what it has been like for you as a patient of an aggressive oral cancer.
I am just so so sorry that you have been dealt yet another blow with this latest diagnosis. I trust that your great team of surgeons and oncologists can help you through this again. I just wanted to let you know that you are in my thoughts and prayers as you face your options at this time . I thank you for your honesty, humour and sheer positivity in your writing , despite all that you’ve been put through by this awful disease. I hope you are well again soon,
Love
Gillian
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Jen, I’m so sorry and upset and sad to hear your news. You are in my thoughts, and I’ll send you some new photos of my little black horse 🐴.
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Love you Jen ❤️
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Best wishes Jen. Your honesty and strength is amazing.
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Can’t “like” this post. It sucks! Cancer sucks. Sending you good juju and positive energy! Also to your “team” of doctors that they’ll come up with a good plan. Hugs from across the pond!
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Hey Jen
So sorry 😞 to read this, cannot imagine, where u think ur going forward only to keep being pulled back again. Hoping ur team give u a solution and soon, nothing worse than waiting.
Big love to you and your family xx
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Thanks, it’s all so rubbish isn’t it. Yep, hoping for those options. The waiting sucks!! Sending love to you too, I hope you’re doing ok xx
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I am gutted for you and speechless 😶
This one thing I can say for sure: the world is a better place with you in it. You have given me inspiration and courage through my own journey, without even ever meeting you. Thank you for being your authentic true Magic self🙏🏼💖
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Thank you for your kind words. You’ve brought a very happy tear to my eye. Hopefully they’ll be able to get me some more time because I am certain there is still so much more magic to see!
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I am lost for words (which never happens) all I can say is cancer sucks. But you will fight it and keep fighting it because that’s who you are. All my love my dear friend.
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I think I’ll rather rest than have any fights, but hopefully they’ll have some nice treatment options I can accept. 🤞🏻😍
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