Hot town, summer in the city

on

So my bestie Katie turned up on the Sunday morning. I opened my door and she was standing there on the other side. Katie. In person. On my doorstep. We hugged each other, tears in our eyes. When we finally broke apart, we grabbed each other’s arm weirdly and both said ‘it’s you’.
Yeah, not much gets past us.

The next few hours of sitting on my sofa consisted of many comments like ‘I can’t believe you’re here’, ‘I’m really here!’, ‘this is so strange’, and ‘I love you’. With the right people it doesn’t matter where you are or how much time has passed, everything very quickly becomes normal again. It took a while to realise that the body connected to the voice I speak to weekly from my flat was actually inside it.

Off we set into swims, pub quizzes, pints, walks, catching up with friends, all our favourite things. We scheduled a rest day but ended up talking all day. Oops. By the following day, my face was really starting to hurt. ‘Right,’ I said, ‘tomorrow I need a day where I actually don’t speak or smile because I need to rest.’ So on the Friday she went out and about and I stayed in and remained mostly silent.

But things went kind of downhill from there and by the Sunday evening I was in the worst pain I think I’d ever been in, and it was the type of pain I’d only experienced on specific other occasions – when my tumour was growing. Paracetamol and Ibuprofen wasn’t cutting it. I could hardy sleep from the pain in my face over the Sunday evening and on Monday morning I emailed my Oncology team telling them I was in pain. That pain. They immediately jumped on it, referring me to the Enhanced Supportive Care (pain) people and trying to move my scans forward. Panic mode.

The Enhanced Supportive Care team were amazing. Caroline and Jo hustled, checking in with me once or twice a day and liaising with my GP to get meds prescribed, tweaking doses and sorting it all out, which Katie was then able to pop out and pick up from the local chemist for me. With both of these wonderful women, their compassion leapt out of the phone and I feel held, listened to and supported. It felt so different from the last time I was facing this kind of pain (late last year), when I was getting progressively worse and couldn’t get anyone to listen to me, reply to me, prescribe me meds, hasten my scan, do anything…

My Onc team are just so on it. They have brought forward my PET Scan, which I had on Thursday. They’ve also scheduled me an MRI, which will be on Sunday 31st.

Although I was obviously hoping I would get more time before things started going downhill again, sadly this is otherwise all expected. We have really just been waiting for the day where the tumour starts progressing again and things get worse. None of this should really be coming as a shock to anyone, it’s doing literally what it says on the tin. BUT MUST IT HAPPEN NOW?!!!!!! I knew it wouldn’t take long, but I just wanted a little longer. I wanted to get to make the most of the whole 3 weeks Katie was here, not just 1. I wanted to go to Edinburgh for the Fringe fest, to go watch India fly in a circus in Ireland. For some reason cancer doesn’t seem to want to play by my rules though. Rude. Honestly, cancer mate, I can send you my calendar if you like, let you know when I might be able to fit you in. I think I have some availability somewhere around the year 2071…

We have still been having a lovely time though, I’ve just spent quite a lot of the last week in bed. It’s also given Katie a chance to run around and do a few things around London, then we reconvene for Love Island and a takeaway.

Ok so… Really, everything is pointing to it being the cancer progressing. The pain in my face, the exhaustion, the immediate loss of any remaining hearing in my right ear, my right ear pain, my mouth getting slightly puffy on that side. And so the logical part of me thinks yeah ok, so this is the beginning of the end, it’s time, we’re onto the last stage, the last treatment which may or may not help. As my nurse said, we don’t know yet, but um… you know, we kind of know…
But the other part of me just thinks ok yeah but like give me a week to myself, let me rest, not have to go anywhere or do anything or engage with anyone, and I’ll sort myself out again and we’ll be back on track. I’ve just been doing too much.
The classic old tale of ‘have I done a bit too much or am I actually dying’.
Of ‘I want to make the most of every moment I have, but also physically… that’s not possible.’
I’m actually pretty bloody good at resting, it’s kind of my super power. But you never know you haven’t rested enough until you haven’t rested enough. And then there ain’t much you can do about it.

Anyway, I will keep you posted, obvs. We’re doing fairly well with managing the pain, though I’m taking quite a lot of Oxycodone. A fun side effect is that every single part of my skin feels itchy 100% of the time, which is working on driving me mad, especially in the heat. I’m trying not to tear my skin off, I’m mostly succeeding. The other side effect is ‘difficulty passing urine’, which for some reason is a lot more uncomfortable than I thought it would be – having to squeeze out every last drop is exhausting. But either my body is getting used to the drug, or I’m just making sure to smash a LOT of water, because I think we’re mostly on top of that one now.

I guess the main thing that’s effecting me is how absolutely shattered I am, that for a lot of the time, all I can do is lie in bed. I get so exhausted that I can’t speak anymore, can hardly lift a bottle of water to my mouth, I just need to lie down. I’ve never quite had it to this extreme before. I’m hopeful I’m really just in need of some serious rest. Which is so totally fine and expected. But yeah who knows what’s going on and what’s at play. No one. Hopefully these scans will tell us something. Or more importantly, I suppose hopefully they don’t. Hopefully they show that it hasn’t got any bigger, that the activity hasn’t increased. Hopefully they show no obvious reason for a change to have occurred. Then we’ll all lift our shoulders and shrug. The scans can’t show what degree of ok things are, only if things have got worse. And although everything is pointing to that it probably has, I say we don’t know until we know, so no point in wasting effort on it until then.

So in the mean time, peace out, and if you’re in my part of the world, enjoy this spectacular sun (many apologies to my Sydney/Australia crew who probably don’t remember what a day without rain and floods looks like).

27 Comments Add yours

  1. Virginia Hexter says:

    So sorry to hear this Jen. My thoughts are with you. Hope you are managing the pain. You are one special and brave lady xx

    Like

  2. Kirralie says:

    Yeah…what she said
    “We don’t know until we know”
    Tis true!
    She’s a wise woman than Jen…

    Rest is sometimes the best medicine (even if it’s not our first choice)
    Yoga Nidra is top quality, excellent, top notch, yummiest of all rest in my humblest opinion. I’ll email you with links to some of my favourites Jen.
    Love you x

    Like

  3. Alexa Parker says:

    There is nothing like one of your closest friends showing up unexpectantly and brightening your day! I enjoyed reading your post. It reminded me of one of my best friends. Those best friends always have a way of showing up when it is needed the most.

    Like

    1. Jen Eve says:

      Oh my gosh no, thankfully it wasn’t unexpected, that wouldn’t be very nice at all! Someone just turning up on my doorstep and announcing they’re staying 😂 no thank you. But we’ve been planning this trip for about 6 months so it’s so nice to finally have her here. Even if it’s a more subdued trip than we’d intended.

      Like

  4. Eve says:

    Oh Jen I am so sorry you are having to deal with this pain and uncertainty , especially just now when Katie is visiting , not that any time is a good time but hope you know what I mean. In the meantime I hope it settled enough with the analgesia to at least let you salvage some part of the time left with your friend . Sending you a gently hug

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    1. Jen Eve says:

      You’re absolutely right – it’s never good timing, but this feels like particularly cruel timing. But yeah the pain meds are def helping us to make the most of our time so I’m very grateful for that 😊

      Like

    2. Faith says:

      Thanks for skyways sharing your journey, Jen.
      Glad you have fun company with Katie, who sounds absolutely lovely.
      Holding out hope that it’s not the dreaded return of the unwanted Cancer, that you’ve still got plenty time to enjoy some lovely rest and continue to spread your awesome magic🙏🏼❤️‍🩹❤️‍🩹❤️‍🩹

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      1. mmurtagh545gmailcom says:

        Jen I hope its just over talking and exhaustion. You deserve some quality time and a break from cancer. I love how you write. Its just so everyday but so special. Much love and fingers crossed for you.

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      2. Jen Eve says:

        Let’s hope!!! Thank you so much for your kind words xxx

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  5. Sarah Manser says:

    Ah just rest as much as you can and keep all your thoughts and wishes positive. Sending love xxx

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  6. lucidwhim says:

    Lovely Jen,
    I am sending you the biggest hug 💜 Your ability to say it how it is and still remain funny and resilient reminds me so much of Amy. I am so glad you have Caroline and Jo making you “ feel held, listened to and supported”. Cancer is such a villain and just when you think / hope it is on a submissive path it starts defiant acts of rebellion. I hope the pain relief is working. I hold one of your quotes very close to my heart. It’s wisdom comforts me. Now is a good time to recite the words,
    “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.”
    Onwards 👍🤞💜 💜

    Liked by 1 person

  7. Pia says:

    Cancer truly is a gift that keeps on giving.. all the wrong things, at the wrong time. Still, let’s hope for the very best news. The main things is that you are painfree and that you have such wonderful team looking after you. You are often in my thoughts 🥰. Take care xx

    Like

  8. Tochi Balogun says:

    Thanks for always sharing your journey, Jen.
    Glad you have fun company with Katie, who sounds absolutely lovely.
    Holding out hope that it’s not the dreaded return of the unwanted Cancer, that you’ve still got plenty time to enjoy some lovely rest and continue to spread your awesome magic🙏🏼

    Like

  9. Donna Congalton says:

    Oh gosh Jen, so please Katie is there and you two are making the most of being together even if Cancer has changed it for you both. Yay for pain meds but downer for itchy skin :(. Sennding heaps of love to you both and love you heaps.

    Like

  10. Donna Congalton says:

    Oh gosh Jen, so please Katie is there and you two are making the most of being together even if Cancer has changed it for you both. Yay for pain meds but downer for itchy skin :(. Sennding heaps of love to you both and love you heaps.

    Like

  11. loversjump1 says:

    You’re a remarkable writer, Jen. If only I could

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  12. loversjump1 says:

    Oops!
    ………If only I could find the right words too. Your courage is a radiant beacon, and a reminder to treasure our relationships, for everyone who reads this blog.
    Sending loving admiration from your true buddy Ferg and all of us still here xxxx

    Like

  13. Jane Doherty says:

    Thinking of you Jen. Hopefully you can enjoy time with Katie.

    Like

  14. Sharon Daly says:

    Terrible news. Like everyone else I was hoping for much more good time for you. I was struck by your comment, “Did I do a bit too much or am I actually dying?” Over the past 8 years with cancer, that thought has been on a loop in my brain. Fortunately, my onc, like yours, jumps right on with moved up scans. So glad your cancer held off until Katie’s visit, and hope the pain & fatigue lessen so you can enjoy it. As always, your brilliant writing is a joy.

    Like

  15. tlj61 says:

    I really hope it is down to tiredness and not tumour progression. So sorry that you have to go through this. Thinking of you.

    Like

    1. Jen Eve says:

      Thank you. Fingers crossed xxx

      Like

  16. as.kling@bigpond.com says:

    You look so beautiful Honey…Love S&A

    Like

  17. Ash Ross says:

    “We don’t know, until we know”. Keep loving this mantra and rest and spend time with Katie and not thinking about this bloody awful cancer (easier said than done). I love that your super power is resting well. It’s also your magnificent ability in descriptions and create a world or a feeling with your words. My heart broke when I read that the pain had returned, knowing what it meant last time. But you don’t know, until you know. Xx

    Like

    1. Jen Eve says:

      Exactly. It’s all a bit shit, but I’ll keep finding ways to hold onto the less shit bits for as long as humanely possible! Thanks for always being here by my side xxx

      Like

  18. Clancy says:

    Hope you can also enjoy the spectacular sun (maybe horizontally on a nice patch of grass somewhere? Possibly with a pint that can be administered with a straw?!) and your time with Katie. Thinking of you and hoping for the best. Heaps of love 💜💜💜

    Like

    1. Jen Eve says:

      Hehe yes, sun and pints have been consumed in equal measure! Been having a beautiful time amongst it all ❤

      Like

  19. Julia says:

    Jen, I love your love for life in spite of all the everything. It is so tough. Sending you much love xx

    Like

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