I finished off my last blog post, pushing through the immense amounts of pain in my head with gritted teeth, repeating ‘I have a future, I have a future, I have a future…’

Over a week spent in bed with some sort of illness that presented as a raging fever and a hell of a lot of cancer progression pain. The pain started first, knocking me out for three days before the fever kicked in. Seeing my temperature soar above 38 came as a relief as it surely mean it’s all fine, something else is causing the exact sudden onset of pain that I had at the exact same time last year, when it was my cancer rapidly progressing…

‘It’s not cancer it’s not cancer it’s not cancer’ – you’re welcome to chant it with me. Though they say (who?) not to focus on the negative word at all, even if you’re trying to focus on a negative version of it (have I lost you?). So I guess rather lets chant ‘I’m healthy, I’m well, I’m so alive, I’m fine.’ Feel free to substitute my lil ol name in there, or take the boost for yourself. Your health is my health is our health.

My last ‘more or less stable’ scan came with a ‘but we’ve found something in your neck that we’d like to ultrasound’. Sigh. Nothing’s ever easy, is it. Sure, ultrasound my neck, fine. I’ll come back in for another appointment, then come in again to see the Oncologist to discuss results. I know there’s nothing wrong with my neck, but yes of course, check it. Fine.

I got off the phone and my memory went to work. Wait, I remember when they did this last time – they pretended I was only having an ultrasound, yet the appointment came through as a biopsy, and when I got there, they shoved a huge needle in my neck and caused me a lot of pain…

And indeed, the same happened again. I walked in to the hospital on the morning of the FNA Guided Biopsy (not ultrasound) talking with my bestie Katie in Sydney, wearing my most blingy eyepatch and piratey outfit. A few days before, an admin staff member had called to confirm I would be turning up to the biopsy. I explained to her that I was considering declining to have it at all because I don’t appreciate being lied to, because of the past trauma (both from the original time, and the fact they lost the sample and I had to have a repeat neck needling), and because I knew I didn’t need it. She said I could go along, get the ultrasound bit (yeah so there is an ultrasound component, but then there’s also the biopsy bit) then refuse the needle if I wanted to. I guess that led me to agree, but I said I wanted the expert, not just anyone. She informed me that all their staff are adequately trained, but she would put a note in my file that I might need some VIP care.

When I got there, the consultant introduced herself and said that a trainee doctor was going to ‘give it a go’.
‘No,’ my mind screamed. ‘I am not a give it a go person. No. No.’
‘Oh, ok. Sure. Fine…’ were the words my mouth formed. Why is it always so hard to say no?
He shoved the ultrasound wand on my neck so hard, I was choking under his weight. He didn’t let up. I coughed and spluttered and he pushed harder. I clenched my eyes closed and dug my fingernails into my palms, desperately willing the assault to be over.

‘Move your head left’ he mumbled so quietly, I could hardly hear him and had to gasp at him to repeat. I tried to move, but it was hard to move under the weight of his hand on my neck.

After what was surely twenty more long hours, the consultant took over to have her own look, gently running the wand over my neck and describing what she was doing as she went. I was fascinated as she talked through what bits were missing in my neck, due to previous surgeries.
‘Sorry,’ she explained, ‘I’m just describing to [heavy hand] what I’m doing.’
‘Oh, that’s fine,’ I said. ‘You’re very gentle!’ I exclaimed, hoping that somehow, the meaning I imbued into that comment landed somewhere. She could keep going as long as she liked. It was almost relaxing in comparison.

‘Ok, here’s the spot on the left side of the neck that we’d like to biopsy…’ She said.
‘Oh, wait, left? Well that’s going to be nothing then… there’s no way it would have jumped over there, especially when it’s otherwise inactive.’
‘Yeah, exactly. It would make no sense for it to be cancer, osteo just doesn’t spread like that (osteosarcoma generally spreads through blood, not the lymph system in case you were interested). But, always best to check.’
‘It’s just I… well… I’ve had quite a traumatic experience with this before.’
‘Oh, really?’ She said – she’d had no prior warning that the admin staff assured me she would. ‘Well we can probably do an even smaller needle – you may need to come back for a proper full FNA biopsy, but I think we should be able to rule it out with just a small needle and a tiny sample, using a normal cannula size. And I’ll anaesthetise your neck first. And if you don’t want me to go ahead, or if you want me to stop at any point, I will. Otherwise, we could not do it at all, and just keep monitoring with ongoing scans…’
With a big sigh, I said ‘ok, go on then, I’m here now, let’s just get this over with…’
Thankfully Heavy Hand didn’t suggest doing it, the consultant had taken over – if there had been any suggestion he wanted to ‘give it a go,’ I absolutely would have found a way to say no to that. And I survived. It wasn’t too bad. Clarence smiled through it with me.

Anyway, that was then, this is now. I got through the biopsy, it came back as fine, and my Oncologist sent me off for three months waiting until my next MRI. With the stern warning: as soon as you get any pain, you let us know immediately, and we bring that scan forward.

Ok, cool, goodbye, see you in three months… that is… until pain appeared in that exact spot and wouldn’t go away. After three days of it not going away, I sent an email to my CNS (clinical nurse specialist – if you remember, this is the contact I have with my team at UCLH. They’re meant to coordinate everything. But if you remember, they rarely actually do).

After my initial email saying I had new pain and my Onc needed to know, I got a call back from a CNS who was very confused – she told me I’ve already got a scan in September and couldn’t seem to understand that I was asking for it sooner. She asked if I meant I wanted it sooner that week (in September) and I said no, I need it now. Asap. She said she didn’t know anything about that. So I told her to speak to my Onc if she’s unsure what scan to book me. She told me she could maybe send him an email. I said no, I need you to send him an email and sort this out. Or call him. Even walk into his office and ask. I don’t care, just let him know I have pain and I’m guessing I need a scan…

I never heard back. Later that week, I got sent a letter confirming the date of my scan – still in mid September – a pretty rubbish way of telling me they weren’t going to take me seriously and wouldn’t get my scan moved any sooner.

Which terrified me.

Knowing that they are either unwilling or unable to organise me a scan if I need one is incredibly worrying. To be honest, by that stage, I wasn’t sure I actually even wanted the scan to be brought forward because I wanted the pain to go away itself (and it kind of was…). But I also didn’t want to let it slide – I’m relying on them to help me catch this quickly if I need it, but seeing that in reality they won’t or can’t… What the hell do I do going forward?!

That answer came easily, carried by my friends – What I do, is get reminded that the CNSs are no longer the only people I have contact with. I have my pain-team-of-dreams, more officially known as Enhanced Supportive Care, who are also part of my team, who also have influence. ‘We’re here too,’ I was reminded when they checked in a few days later. They seem to keep needing to remind me of this, and I am always grateful for the reminder. Years of only having the CNSs is hard to undo. ‘With your permission,’ they said, ‘I could raise it with the Onc and team?’

‘Oh, yes. Please. Please do.’

I was resistant to getting the scan moved forward. I didn’t want to admit that despite all my good work to disconnect with the ‘I have cancer’ narrative, to remove cancer from my vocabulary, there it was, waiting to derail me all over again. I knew the pain couldn’t be cancer… surely… the temperature had proven that. The pain was mostly lessening. But once my pain team (and so much more) had flagged it with the Onc and he brought the scan forward (of course he did, as soon as it was actually mentioned to him), I felt a weight off my shoulders – I had discharged duty of care. It was no longer up to me.

But, my friends, at risk of turning this mere blog post into a novel, the saga does not quite end here.

The scan was moved forward and set for the one, best date it could have been – the day after we get back from Paris (yes, I’m off there again for just a quick trip to show a visiting Mum and Dad my other home and my Paris family), and the day before my parents leave. It couldn’t have been more perfect – I wouldn’t have to scramble for a friend to come old my hand in the dreaded MRI, I’d have my Mum! And she was happy to get to help out. Great.

I realised I hadn’t written down what time the scan was. So about a week before, I looked at my MyCare App (UCLH have upgraded to using an app, which is great, but it doesn’t send notifications and is generally pretty un-user friendly) to see what time it was for next week and see…

MRI – 27th September

W….hat…? Someone has cancelled my scan at the end of July and moved it TWO MONTHS INTO THE FUTURE? Even later than my original scan… And didn’t think it was worth telling me…? I emailed Enhanced supportive care in disbelief, asking them to look into it for me. Which they did, and they got it moved back, but the earliest slot they could get was weeks away, long after my parents had gone, and a fair way into the future…

When I got over being shocked by the whole thing (though by now I should be used to these sorts of admin-type mess ups), I got angry.

I was angry for the version of me who didn’t happen to check the app and turned up for my scan only to be told there wasn’t one.

I was angry for the version of my that actually has rapid cancer progression (though I know I don’t), to whom a scan moved two weeks in the future, let alone two months means the difference between life and death.

I was angry for all the other people this happens to, who perhaps do die or have to deal with huge amounts of inconvenience.

I was angry for the fact that I have to be so on top of things to make sure someone doesn’t just decide they want to move my potentially life saving scan well into the future and keep it a complete secret from me, the person who needs that scan, who needs to show up at the right time at the right place…

I was angry for all the fails I have endured for years at the hands of a system that I owe my life to and love with all my heart, but has dropped the ball so many times for both myself and other people I love.

I was angry for all the times I have had to save my own life.

And for the fact that I would probably now lose that perfect day and having my mum there…

I raged to my parents who peered at me, unsure how they were supposed to help. I hit my hands down on my dining table as I sat across from Rosa, raging about the injustice.

My rage was met with a compassionate ear, and people I love raging right along with me.

Then I fired up my computer and wrote a strongly worded email to Enhanced Supportive Care, stating just how…

…Grateful I was for them.

That they sorted it for me. That I had them.

Part of me wanted to make sure someone was held accountable for this mess up. But who? It certainly wasn’t my friends at ESC. I don’t know who it was.

So now I’m just grateful. Grateful I caught the mistake. Grateful I’ve got a scan. Grateful I’ve got some great people by my side. And grateful this is just to put our minds at rest. I feel in a very different place to the last time it was cancer pain – my pain is improving, not getting rapidly worse. It’s ok. It will be ok.

And something kind of amazing happened. When I found the error and was immediately scared and worried I’d lose that perfect day, I asked my friends and family to join me in manifesting the scan being put back to that day. Yes, I know, this ‘manifesting’ thing is kind of eye-roll, and I’m not sure where I stand on it. Some people describe it in a way that makes me think there might be some value in it. Others tell me to announce to myself in the mirror every morning that I am rich and wealthy and that’s ridiculous because I’m brassic (this is my new favourite word – crowd favourite Rosa taught me it this week and it’s Cockney rhyming slang meaning ‘boracic lint’ or ‘skint’). But if there’s anything to it, I want it to go to work getting my scan back on that exact day.

Buuuut….. It failed me. The scan was put ages away. But then, I got a call from the imaging department. Could I come in this Saturday? No. I couldn’t. I’ve got a big catch up with some old friends, and I’m introducing my parents to the gang. No, I’m not cancelling that to have a scan, there’s no way.

‘Ok, well, there’s nothing else sooner then.’
‘I’d really just like it moved back to the perfect day thanks, where it already was.’
‘There are no slots on that day. Though… Actually… I could do two days after then – the Sunday morning…’
Ok, so there are slots sooner, but only if I know to ask… right…
‘Yeah, ok sure, fine. I can do that.’
Parents will be gone the day before, not sure if Sunday is an easier or a harder day to get a friend to come, but I’ll work it out. Sunday it is.

I go and complain again to my parents, and mention that it’s the day after they leave.
‘No, that’s the day we leave…’
‘Wait, I though you were leaving the day before…?’
‘No, we leave on the Sunday. What time is the scan?’
‘9:30am…’
‘Our flight is as 9pm… we can come with you, have a celebratory brunch after, then make our way to the airport…’

Ok so the universe didn’t quite give me exactly what I wanted, but in reality, it got the meaning and delivered….

So, fine, scan next week. The fever has now passed, the pain retreating, a big part of me doesn’t want to waste my time and energy on an MRI so soon, but I’ll take it. I’ll have Mum to hold my hand in it, so I don’t have to do a mad scramble to find a willing and available friend to take over the role (my friends are just so brilliant though, I’ve never had to go alone).

Catch ya on the flip side.