What a time to be alive, so they say…

On this blog there are ‘categories’. I wouldn’t expect you to know this, I often forget to even use them. I doubt any of you use them, but they’re there. And I make them for different sections and the idea is that I tag different posts with the same tag to group them. I guess after 5 years I should make a new tag for my posts – Radiotherapy. We’re definitely here.

Thursday was a really rough day (I originally wrote ‘a bit of a rough’ day, then I realised that was an understatement, so I went for just ‘rough’. Then I thought I should probably say it like it is, so went with ‘really rough’ and it’s probably still understating it, I often refer to this cancer malarkey as ‘a bit rubbish’ so I clearly need to work better at accurately representing my life…)

It started with me vomiting my pain meds up. Wednesday had started the same. When the pain gets bad, I seem to vomit up the one thing that might help – my liquid oxycodone. I hoped that since it was an hour after I’d taken my pain meds, I might be ok but it certainly didn’t feel like I’d taken any at all. My ambulance transport minibus turned up around 45mins before my appointment which was great. But oof, I was in pain. I went to my zappy zappy machine, which is number F and right down the end of a long corridor. They were running a bit late and there was a lady also waiting who wanted to chat. Usually in life I don’t mind a chat but I was struggling to keep upright and conscious, let alone keep up conversation with her. Especially since she said she was deaf but spoke very quietly. So I had to both shout everything and ask her to repeat everything. We talked for quite a while about all sorts of things, mostly fairly heavy. We are both really scared of what dying of this will look like – mine in the middle of my skull, her in her lungs with occasional spread to the top of her head. She said she’s not so bothered with the idea of being dead (she was maybe in her 70s) just the process from here to there. I’m bothered by it all. I was asked by my lovely friend Katie the other day (I had a dream last night where she tried to drown me so not sure what that’s all about) what it was like with my other friends who had died – what were their thoughts by the time they’d reached the end. I said they seemed to find some sort of peace with it. In many ways I’d love to find some peace, it sounds like a much more enjoyable experience. But I’m not there. I don’t want to die. With every bone in my body (other than the ones that are actively trying to kill me, I suppose) I really don’t want to die. I’ve got so much more to do first. I’ll keep you updated if I ever get to a stage of peace with it. Clearly for now I’m still accepting very un-peaceful treatments at the chance to stay alive for longer. I was awake a few nights ago thinking about what happens if I don’t die instantaneously from a squashed interior carotid artery, what will it look like? Will the tumour get so big it stops me breathing and I choke to death? And what happens if I can no longer keep my denture in because of the swelling… It’s already getting difficult to eat because my plate/teeth aren’t fitting properly (either from the inflammation or the tumour growth…) – if I can’t keep it in, I’ll spend the last of my life not able to speak or eat or drink… Argh.

But I have to remind myself that’s not happening today. And I don’t know the future, so I can’t pre-empt it.
‘But I can!’ says the annoying voice in my head who probably sounds like some kid who bullied me in school, or some teacher who said I could do well if I just tried applying myself.
‘I’ve seen my friends go through it,’ it says, ‘and it’s been awful and mine will be too.’
‘But,’ counteracts the measured voice of my psychologist ‘you only know what their deaths have been like, not your own. And as you very well know, no two cases of cancer are even remotely the same.’

One of my wonderful cancer friends told me that when she spirals out about her future, she reminds herself that she’s here, today, and today she’s ok, and that’s all that matters right now. I also remind myself often of a quote by Danny Penman:
‘If you’re still breathing, then there’s more right with you than wrong with you.’
That provides some comfort.

I trialled not taking Lorazepam for my zappings this week. Well… More like… I realised I completely forgot to take it on Tuesday when Rosa was with me and I was fine. I took it on Wednesday because I was feeling a bit stressed but I was just super exhausted on Thursday so decided not to take the anti anxiety meds and I was fine. Felt the same as always – slightly stressed but fine. I’ve never really felt like it does much anyway so that feels fairly accurate. I didn’t need it Friday either. That feels like a win, I think.

I contacted my Pain-Team-of-Dreams on Thursday, scared about the amount of pain I was in. I expected them to say we’d up my prolonged release oxycodone, but they didn’t. They essentially said ‘let’s try not throwing up an hour after you take your meds’. Which… Makes sense. So I did try that. But first, I cried after I got off the phone because I felt helpless to the pain and then I panicked that perhaps the reason they didn’t up it is because I’m reaching the limits of how much I can take and there would be a point soon when the amount of pain I was in that day would become common and there would be nothing they could give me. Then I went to sleep.
actually went to sleep as soon as I got home on Thursday at around 2pm. Then I woke up to speak to my pain team, stayed awake until 7:30pm waiting for a ‘treatment review’ my paperwork said I was meant to have – it said they would call me sometime by 7:30pm. I had no call. So I went back to sleep.

I also had another transport saga on the Thursday. I was feeling so, so ill, in so much damn pain, and utterly exhausted. I just wanted to get home after my treatment but between waiting for the ambulance and waiting for other people to be dropped off before me, it took me three hours to get home. It would have taken 45mis on the bus. I absolutely crashed when I got home. Honestly, those two days… the Wednesday and the Thursday… Really hard. It took everything I had to just get through the day. It was…It was almost unbearable. Those sorts of days are really scary.

The pain woke me up on Friday morning at around 5am. I woke up crying, I was in so much pain. I took my morning drugs, tried lying on my bed of nails, which often helps but didn’t, then I ran a bath and got in it (I have my things that I do that can help with pain). I remembered my task – try not to throw up. So I sat in the bath and ate blueberries and 4 Ritz biscuits. I actually started to feel a bit better. Then I took my liquid oxycodone and didn’t throw it up. Then I went off to the hospital. And sure enough, I felt so much better than I had the two days before. I had vomited around an hour after taking my pain meds the previous two days and I thought that was surely long enough for my body to have absorbed them but perhaps, it seems, it wasn’t. Perhaps I had been existing for two days on a subset of my pain meds and woooooo it had not worked. When I spoke to my Pain-Team-Of-Dreams again, we were relieved all around that things weren’t quite as bad. And we decided to up just my night time amount of prolonged release oxy slightly to hopefully help with that 5am wake up pain. Hopefully I’m back on track. I just can’t quite tell you how beautiful and human the wonderful people in that team feel compared to some of the interactions I’m having with medical professionals at the moment and I just want to hug them all. Talking to them feels like a hug in itself. And everyone I’ve spoken to who has had interactions with them has said the same thing.

The radiographers took their time getting me in again on Friday – first they said they were waiting on nurses. Then they said they needed to check something. I have no idea what it ended up being but I went and had my zapping, as I often do, to the soundtrack of The Beatles. My mask has been getting significantly tighter over the past few days for some reason and leaves a fun pattern of marks on my forehead which is… Cool… They ask me every day if it’s ‘too tight to handle’ and I don’t really know how to answer that so i just say ‘no I guess it’s fine…’

Just before I went in for my zapping, I had a message from one of my favourite people in the world, Krista, saying she was in at the Cancer Centre and was I around? I sure was! So we went for a coffee at a cafe called Happy Bones, which Krista pointed out was beyond ironic that two Bone Cancer pals were going to a cafe called Happy Bones. As if that’s its name. Feels like it was made for us. She asked if I was sure I was up for it and I told her I was tired, but keen to see her. As soon as I got in her company though, I didn’t feel tired anymore. She is absolutely a batteries included friend. I feel so energised and uplifted after seeing her. And it just reminded me how important seeing my friends is. Not that I was thinking of not seeing them, and there was no way I would have been up to it the previous days. But that day, I was. And days of mostly only having my own company or getting my seemingly constant reminders from medical personnel that I’m about to drop dead, well… it gets to you. But seeing Krista was everything I needed to start feeling like myself again. It’s not surprising you might lose track of yourself when you’re either asleep or getting zapped or waiting for an ambulance or in excruciating amounts of pain and only just managing to keep it together.

But I’m back. Now that the pain’s under control (ish) and I’ve had a couple of hours with someone I love, I think I’m me again. And indeed I did the same thing on Saturday, catching up with my besties Rosa and India. Gosh, I’m so lucky to have such wonderful people around me. I’ve not got words for how much these people mean to me.

Also with regards to finding peace in death… the wonderful Maddie, another one of my cancer pals, wrote a post about a friend of ours, who died a month ago. I mentioned her at the time, but her death felt really hard and really cruel and it’s starting to feel like there aren’t many of us OG Sarcomies still around. But in this post, she spoke about Danna and she wrote the following:
‘Danna showed us that even when dying, you can live and have fun. She withstood the most harsh medical regimes just to experience more life. In one of our last conversations, I asked her how she finds the motivation to keep going back for treatment, even though it makes her suffer. She told me that she had been so close to death so many times, she would rather have a little more medicine that makes her suffer, than die. The closer she got to death, she said, the more she was willing to give up in terms of quality of life. She wanted to suck every minute out of life that she could get. It makes me so sad that she has died, but I know she was grateful for every bit of it – much moreso in her short 26 years than most people get out of a lifetime.

Seeing this at the end of that Friday… I just really felt it. I felt like I was sitting with Danna. She was more comfortable with death when it wasn’t imminent – I think that’s easy to be. I think we should all be like that. We should all read ‘With The End In Mind‘, and live our lives actively knowing we’re going to die. Because that only brings value to our lives. But the closer she got to death, the less comfortable she got with it. And I feel that. So perhaps it’s not peace for everyone. Perhaps for some of us it’s more accepting those days of suffering, like Wednesday and Thursday of last week, for the chance of days like Friday with Krista, and this weekend with Rosa, India and Sam.

I was meant to get my first tattoo today! I’d always wanted one but had never quite settled on what I want. I’m sure many people in my life have heard of one design or another that I’d been thinking of having but this one is something that has always been with me. I decided I didn’t want to die before getting a tattoo and shortly after I decided that, I finally found the exact one I wanted. And I was meant to be getting a similar one to the picture I’d found, but designed by the artist I chose, today. But alas! She was sick! So we postponed. But I can’t wait to tell you about it once it’s happened… There are some pretty cool stories around the tattoo itself and also where I’m getting it (both where on my body and where it’s being done). Lots of meaning, I can assure you. There’s always a story.

But alas that’s been postponed but luckily I still got to catch up with some pals today. And on Sunday my mate Sam is coming over for us to play some music together. And I’m getting him to sing on a couple of tracks from this upcoming album I occasionally dangle in front of you. Yeah… We’re getting closer!

It’s been up in the air what treatments will happen on Monday and what won’t – apparently it’s a public holiday because the Queen died. Australia has a public holiday on the Queen’s birthday every year (ooh what’s going to happen to that now!) but we don’t here. So I’m not sure why we’re suddenly deciding to care now she’s dead, but ok. I found out yesterday that my life saving treatment is not happening on Monday. Which on premise, isn’t great. But in practice, I was feeling slightly overwhelmed at being busy on both days of the weekend so now I get an extra day where I will just REST. So the timing has worked out quite well I guess. Thanks for thinking of me Lizzie old gal. I hope you’re at peace, I guess.

I shall leave you with a pic of the light of my life Krista, who I saw on Friday, and my other loves Rosa and India who I got to see at one of my favourite pubs on Saturday. And I suppose I’ll say it again… WHAT A TIME TO BE ALIVE!!!

Oh and I have a fab sequin blazer that makes me sparkle in the sun so… what more could you want really…

5 Comments Add yours

  1. Sharon Daly says:

    How wonderful that your loving friends accompany and support you, make you smile and laugh, and can sometimes distract you from the natural fear and anxiety. At 78, with stage IV, disabling neurological disease, and now, COVID! I’m pretty much used up. You, on the other hand, are bubbling over with talent, love, strength of character, humor, and great promise, and I’m furious that this awful cancer happened to you.

    Like so many, I search eagerly for your posts as though you were my beloved daughter. From across the pond, Sharon

    Sent from my iPad



  2. Carole says:

    Jen dear you always sparkle, even when the sun dosnt shine your inner ✨️ light shines through. ❤️ you Carole. X


  3. Jen it is beautifully heart warming to hear of your wonderful friends who clearly see you so fully and care for you so deeply (and receive the same from you in return). So good… Especially in the midst of what is otherwise just so hard. You are so loved.


  4. Penny says:

    You are totally Sparkling Jen (purposeful capital on sparkling) – and I don’t just mean the outfit (though it is damn awesome). This honest contemplation about death is so powerful for us all. Thank-you for sharing it. To me the situation is utterly unfathomable, but I am here watching your courage, and it makes all humans better and our world more beautiful.


  5. dubhain says:

    I’m astonished and inspired by your wonderful joie de vivre and complete lack of bitterness, Jen, while you contend with this bloody disease. I’m so glad that your pain is more under control now and that you get to spend precious time with your lovely and most dear friends. I’m wishing many happy autumn days now for you in your favourite city.
    You’re some writer , girl!


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