So I had a bit of a weird moment last week. Since this pain and exhaustion etc. started, I was in contact with my new wonderful pain team and also my nurse who is my contact to my Oncologist and well, everything at my hospital.
So I emailed my nurse in pain on Monday two weeks ago, feeling pretty desperate; she’s my one contact point for all of my care. That’s when we started getting some better pain meds and tried to move my scans forward where possible. Everyone was scared. Pain arriving out of nowhere exactly where the cancer pain comes is terrifying. I’d said to my nurse that hopefully it’s just that I’ve done too much, but I appreciated them bringing the scans forward. She said we can all hope but it’s unlikely, it’s probably going to be the cancer progressing.
Yes, ok, I know, I’m not in denial, but I can still hope.
On the Friday at the end of that week, they made an appointment for me for the Monday, in at the cancer centre. As we got towards the Monday, I realised I didn’t know why we were having this appointment and that unless the scan results were back (which they wouldn’t be) or we needed to discuss things that we couldn’t over phone, it didn’t make sense for me to go all the way in just to have a chat. I really just needed to rest and sleep. So I emailed them and said I’d rather just come in for my appointment the following Monday when we would hopefully have scan results, rather than go in another time as well, when we didn’t have any information. Cool, makes sense.
My nurse called me and said ‘we just wanted to see you’ (meaning her and the pain team etc.) and maybe talk about next steps. I said that I felt like I was getting on top of the pain but I think it would be best just to save it a week because I imagine we can’t talk about next treatment options until we have the scan results.
Then she said ‘there are no more options, this is it’.
My brain went blank. The power of such words – no more options. That’s it, that’s the end. That’s my death. No hope left, no chance of getting extra time, that’s it, it’s over. I stopped for a moment, trying to find words to reply. They didn’t come. I took a deep breath.
‘What about… TKI’s?’ I said eventually. I’d previously spoken about them with the Oncologist as something to have in our back pocket for when the time comes. I also have a friend who is on them, and they’ve been working really well for her. What happened to them?
‘Oh yes,’ she said. ‘We can apply for them on compassionate grounds. But any options now aren’t very good.’
She then offered to email me the information on what options might be available for me to try next so that we could have an ‘informed conversation’ about it, which I said yes to. Though to be perfectly honest, I don’t want to have to be the one to research my own care, that’s what the experts should do. She then sent me an email saying that there’s TKIs, a potential chemo, and that my Oncologist is in talks about whether there might be a radiotherapy option.
I got off the phone and was feeling quite shocked. Katie was still here (she’s gone back home now, yes I miss her), sitting on the sofa. I walked out and looked at her, in a weird sort of daze.
‘I just got told there are no options left…’ I said.
Neither of us knew what to say or quite how to process it.
‘But I also just got sent some potential options…’
Katie and I talked over the conversation I’d just had, through confusion, through tears, through hugs. Even though I knew ‘no more options’ wasn’t true, it absolutely broke me to be told it. I know there’s no cure, I know any options now are pretty unknown and the only hope is that they’ll keep me stable for a little bit longer, to eke out some extra months, dare I dream years. But options are our last glimmers of hope and we cling to them to keep ourselves afloat, to get through each day. As long as we have options, we have hope. And you can keep going on a surprisingly small amount of hope. But you need some. In that second, all mine was taken away.
Then of course it was handed back, thankfully I knew the name of one of them to ask. But not before those words were said.
Anyway, the resolution Katie and I got to was that they haven’t even seen the scans yet, we don’t even know if it is progressing, let’s wait until we have the scan results before we start thinking about how we might react to them. Of course, we’ll have to react to a bad scan one day, but maybe it’s not quite yet.
So this Monday just passed, I went in for my appointment to talk to the Oncologist. I’d had my MRI the day before, so those results weren’t back yet. It was a nice Sunday afternoon MRI with my wonderful friend Nicky stepping in this time as emotional support human, holding my hand through it (and Clarence holding my other). They tried to make it tricky for me, by not asking me about all the questions on my form until after I was lying in the machine waiting, which Nicky then did her best to answer on my behalf (I’m just so grateful for my incredible friends). So there was lots of waiting in the machine for it to start (which is what I specifically request they try to make as short as possible in order for me to actually be able to get through the scan). Nicky was there to sing ‘Apple bottom jeans (jeans) boots with the furrrrrr, the whole club is looking at hurrrrrr’ with me while I lay there (for the uninitiated, for some reason very much not known to me, this song is almost always stuck in my head. If you don’t know it, it’s probably best to keep it that way to be perfectly honest, you’re not missing out). But we got through it.
Even with the PET and the MRI results together, it’s still pretty hard to get any idea what’s going on in there, so just having one gives even less of an idea. But my Onc said that just from looking at the PET scan, there’s nothing jumping out at him to say that it has started progressing again. He said the activity actually looks less from the last PET scan – this is as would have been expected (without this pain) as my last PET Scan was half way through my chemo. But it’s nice to hear the activity did lessen over the last couple of cycles of chemo because obviously cutting down the amount I was getting was scary. He said it looks more dense (no idea what that means) but the activity looks ok, so it doesn’t suggest that the cancer has started progressing again yet. But he’ll have a better idea once he’s seen the MRI too. I’ve got a phone appointment next Monday so hopefully it’ll miraculously be back by then. He said his biggest fear now is that it’s started growing but not enough to show up in scans yet. So I guess we watch this space carefully? Not sure.
But anyway… no new bad news for now! Which is obviously great! But as my friend Rosa pointed out, it’s hard when the best they can say is ‘we don’t know why you’re in pain but it might not be cancer right now’. There’s nothing definitive, just loads of unknowns. In fact we actually UP-ed my pain meds that day when I spoke to my pain-team-of-dreams which was needed but also kind of scary… Pain is an indicator of something, I’m hesitant to just switch it off too much… But then again, who can improve when they’re in loads of pain, so I’m happy enough to take it. I’m just continuing to rest and hoping it starts to improve. I still don’t seem able to sleep for more than about 20mins at a time, even though I’m so tired that I can hardly keep my eyes open during the day… It’s been about 3 weeks now, not sure how long it can go on for. But I’ll keep trying my best to ensure good sleep hygiene and hope for the best.
I got to meet the darling Dr Jo from my pain team in person, which was so lovely. Very grateful to have her on my side. She’s another one with that beautiful caring quality that I sometimes talk about coming across in very special nurses, immediately putting you at ease and making you feel like you’re the only one in the world that matters. There are some truly wonderful people working in the NHS.
As for no options… well… my brain is still occasionally going back there. One day it will be true. But not today. Still got to wait to see what this MRI says but I’m hopeful I’ll get to go to the Edinburgh Fringe Festival for a few days at the end of the month, and hopefully get to go see my friend India fly in the circus again. Hopefully my summer isn’t over yet. Hopefully we can get through this pain and get a bit more time before I need those options, which DO exist…
But hearing that sentence was a bit of a wake up call I guess (not that I really needed any more), and I’m doing a bit of reprioritising in my life to make sure I’m not putting off any important things, lest it all gets pulled out from under me quicker than I’d been hoping. I think we can all benefit from remembering that we won’t live forever…
Anyway, for now, please enjoy this photo of Katie and I in our throwback to being 16 and wearing fishnet gloves. They got busted out again while she was visiting.
For some reason I couldn’t put my finger on a pic of both of us together wearing them at 16, just photos we took of each other, but these will do for effect. We were so cool, though we were perhaps the only ones who could see it at the time… (and no, I never got over my punk phase. Though if I admit that photo of me was from a Good Charlotte concert, my punk credentials might be pulled into question. We bopped along, it was a lot of fun. No regrets.)