Here we go again

There seems to have been some misunderstanding from the post when I said that the cancer is back. I mentioned that when it’s time to die, I will go back to Australia to be with my parents. Some people have taken this to mean now. But I’m not ready to die yet. Please, don’t write me off so quickly! Please hope for options to prolong this beautiful life, rather than death. There’s more for me to live yet. One day, probably in a future not too distant, it will become inevitable. But for now, I don’t want to follow death and all of his friends. Not yet.

But, I will say, he is closer than ever before. I see him in my peripheries here and there. He’s moved into the hotel down the road – nearby, but not here yet. And it terrifies me.

I start chemo in a week. They call it palliative chemo. These are new drugs I’ve never had before – Ifosfamide and Etoposide. The hope is that they will stop it growing. I asked how long until we start and they said ‘around two weeks’.
‘I don’t have that much time,’ I told them. ‘My last scan was over a month ago, I know it’s grown since then. Back then I had no pain, today you’re prescribing me oxycodone to manage it. It has grown. I need another MRI and I need chemo to start in a week. I can’t wait for two, I don’t have that sort of time to play with.’

They told me they would see what they could do, but there are so many things to organise, many that require a timescale:
Covid test two days before I get my new PICC Line in. GFR (kidney) test, preferably after the line is in. MRI before we start, also preferably after PICC line. Covid test two days before chemo starts. Clinic appointment to discuss all in full before we start.

It was unlikely all this could be scheduled within a week. Then late that night, I saw the appointments all come through in my app. My new CNS (nurse) had somehow managed it. I would be starting on the 29th. What a bloody relief.

I asked if I could have a port so I could still pole dance and swim but they said because I’ll be having backpack chemo again, it has to be a PICC line. I’ll be moving back into The Cotton Rooms for a week at a time while I have chemo pumped into me for 24 hours/day, Monday to Friday. Then I’ll have two weeks off and, everything going according to plan, chemo working, I will do it five times. I will lose my hair again, and have all the same side effects – neutropenia (no white blood cells so I’ll be prone to picking up infections that might kill me), neuropathy (losing feeling in hands and feet, which I still have permanently from last time anyway), nausea, exhaustion, etc. Hopefully not mouth ulcers though, which is a relief.

The other thing is that I need someone to stay with me. With Ifosfamide, there is a tiny chance of encephalopathy (damage to the brain). I need someone with me over night to make sure I’m not literally losing my mind. I could not have been more grateful that the evening before, when they said to come in on Friday morning, our darling Rosa was hanging out at mine, and she offered to come with me. She recorded the whole conversation with the Oncologist on her phone for me, and she stepped in to help me explain how much pain I’ve been in. She was perfect. And then she was there when they said I needed someone to stay with me over chemo, saying that she absolutely would.

I could not be more grateful for my friends. They said I at least need someone to move in with me for the first two, I’m not sure if it’ll extend, and I might be able to spread the task around a bit so Rosa doesn’t have to do all five, but right now I’m only thinking of this first one. And it’s her and me, baby. We’ve decided we’re going to have a wonderful little adventure. We’ve been wanting to do a little writing retreat together, turns out it’ll just be in central London, and I’ll be connected to cytotoxic drugs. But we’ll watch movies and play Scrabble and I’ll measure my wee (yep, that again) and pop to the cancer centre each day to get my drugs replenished.

They doubt they’ll be able to cut it out. It’s too big, the location is tricky. Certainly at this stage, it would be dangerous to try. If they cut into it but couldn’t get it all and left some there, the disturbance would make it run away on us scarily quickly. And considering how scary its speed is already, I don’t want to find out what that means. I have to come to terms with this reality, but I will hold out some hope that somehow, they will eventually find a way to remove it in a safe-ish way, after the chemo. We will discuss the possibility of surgery after the chemo. There are also some other back pocket options to maybe look at later to slow its growth (like the new and exciting TKIs just coming on the market)

Chemo does not shrink osteosarcoma. Though weirdly, mine has come back in the soft tissue, not actually in the bone. They don’t really know how it’s going to react. Maybe, just maybe there is a glimpse of hope that it could shrink a bit (though unlikely).

We also need to remember that last time, it didn’t really respond to the chemo. Though I have a friend who has just had her third recurrence on the outside of her skull and hers also didn’t respond to the first round of chemo, but the Ifosfamide worked really well. So I’ll keep holding onto this.

I told my Oncologist that he needs to tell me when we’re looking at no more options and possibly only a few months left, because that’s the point I’ll leave. But he said we’re not there yet (hopefully).

I’m so so glad that we’ve still got options, though we really are getting towards the end-of-the-road types of options now… But I’m trying to think about that as little as possible.

I don’t want anyone to think I’m taking this information in any sort of weird ‘strong’ or ‘brave’ way, because that would be insane. I am neither of those things. I’ve done a lot of crying. I don’t want to die. I can’t tell you how much I don’t want to die. And I especially don’t want to die from this. My parents shouldn’t be having to think about burying their daughter, it’s not meant to work like that. But at some point, I guess I’ll just have to accept this because what is the alternative? Spend the last of what time I do have in anger and rage? Or crying? There will be many of those moments, but for today, I messaged my friend Nicky, and we went for a swim in the Hampstead Heath Ponds. My last swim before my PICC line goes in. The water was 10 degrees. It was freezing, but perfect. Today, I am alive.

11 Comments Add yours

  1. Jody Gelb says:

    Sending you more love and HOPE for a strong amount of relief and TIME to get this tumor removed. Time and removal is what I hope for you.
    And friends and love and music and writing!

    Jody

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  2. Glyn says:

    💪💪💪🤩

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  3. Ruth Davies says:

    Sending you hugs and positive vibes x

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  4. Kristi Potter says:

    I always read your blog. You’re such a good writer. My daughter had etopiside during her stem cell treatment this summer. I’m hopeful this combo will shrink that tumor and give you options to remove it. Fucking cancer is 👎 pure shit. I’ll be thinking of you and reading along as you go.

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  5. Ash Ross says:

    Poetic as always Jen. I have hope that this new round of chemo (with new drugs!) You’re definitely not giving up, I would never think that you would. I am SO thankful that you have wonderful people like Rosa to support you physically, emotionally and ‘chemo-ally’. Take each day, procedure and medical news as it comes my dear friend. I am praying for you for strength and peace.

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  6. John Kirby says:

    Hi Jen. I missed your earlier message, but I have read this one with great interest and some sadness. I will be in touch. John

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  7. Sue Starling says:

    And today I feel like I’ve just had a conversation with you. One day at a time is what I say. Each day I think of what you’re doing every minute of it and say to myself, all is well today. Love you Jen 💞💞

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  8. jenanntuck says:

    Hi Jen Just read your post. Really hope you can get the treatment quickly and that it will have a positive effect. Wonderful you have such a good friend to be with you for support. How wonderful to swim at the ladies pool! As you know it’s one fave things to do when I’m in London. 10 degrees! Brrrrr Sending lots of love and thanks for your blog even though it’s tough to read it must be even tougher to write and live it. Big hugs 🤗 Jen xxx

    Jenny Tuck

    >

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  9. grannyK says:

    Sending good thoughts and well wishes your way.

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  10. Cindy Powell says:

    I’ve been diagnosed three times with bladder cancer and the first two times I had surgery and done. This last time was a tumor attached to my psoas muscle so deep I used a wheelchair and the chemo/radiation/immunotherapy did eventually kill the tumor to the surprise of absolutely everybody but me. The surgeon that would remove it said he had no idea what to tell me to expect because ppl with this type of tumor don’t usually make it to surgery. That was 3 yrs ago. Keep searching for things that make you happy and fuck cancer!!!

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  11. Adrian Warnock says:

    Jen, I get that you don’t feel strong but weak. But your willingness to share that weakness with others in these blogs is blooming inspirational. I get that you don’t feel brave. But bravery is NOT the absence of fear it’s just the sheer bloody minded determination to push on regardless. You are in fact incredibly brave. But that’s not a surprise to me because I still remember our conversation in that macmillan centre. Our journeys continue to be very different, but thst afternoon we connected in a deep meaningful way. And your willingness to be open and share in these posts does that all over again. Many who read these posts are going to be deeply moved. And best wishes, or, for those who do, prayers are coming your way. But you are also making a difference to others. Making an impact. You are truly amazing and I say that knowing that you don’t feel that way at all. And it in some kind of twee false way. But just allowing us to see the real you as you go through things nobody should have to. Thank you for being you. And we all join in hoping fir the very best for you.

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