Again, I’ve packed my bag full of clothes for the week. Which clothes are the best to wear when having drugs connected to you for all ours of the day and night?
It felt different this time. Four years ago there was a sort of excitement of curiosity for it all. Where would I go? Who would I meet? What was going to happen? But this time I knew exactly what was going to happen. Well not exactly, I had new drugs to learn about. But I get the general gist. There is comfort in the familiarity of it all though. I don’t want to do this all again, and that’s fine. But of course I will, because that’s the only option. And I’ll find my usual little ways to enjoy myself along the way.
But before I get to that… Friday was a long 11 hours of appointments.
9:10 – Rosa and I both had our Covid swabs, ready for our big week.
Rosa had stayed at mine the evening before. I’d made us a pie containing some misc meal in my freezer which turned out to be a chicken paprikash I’d made a little while ago. And we drank a bottle of champagne. We’d laughed so hard, we cried. Then I laughed and cried so much that blood started coming out of a hole that has opened up in my thin bit of skin under my non eye (after the cut all the adipose tissue out from behind it in my surgery last year). But laughing so much you cry/bleed is never a bad thing, I think.
Friday morning we got the bus in together to the cancer centre. The swabs were quick and easy.
9:30 – PICC Line insertion
Last time, over four years ago, it had been a fairly tumultuous experience getting my PICC line in. The anaesthetic hadn’t worked well enough, they’d managed to thread the line into my neck, it was all a bit wild and I can’t say I was looking forward to doing it again. But we immediately liked the person who was consenting me for it. Liz. She’d asked about my last PICC Line and I told her I loved it for the fact it meant no cannulas, but my body didn’t particularly like it. It ha
d a few teething issues, and it hurt constantly. She said that was odd and she hadn’t heard of them hurting always. I turned to Rosa and said ‘yours did too, right?’
‘Wait… You’ve had one too? What?’
Yes, she has. And I realised how odd that might have seemed. Like when the Friday before, my new CNS (Clinical Nurse Specialist) had said we’d both have to have a Covid swab and she asked for my hospital number and Rosa’s email address to send her details. Because why would my emotional support human have their own UCLH hospital number? But of course, she does. When I was getting my first PICC line out in 2018, she was just getting hers put in. She wrote about hers too – in blog format at the time and as a brilliant, successful show later.
But I, as always, digress.
It hurt me a little at first when they started going in and Liz stopped the person who was doing the procedure and said ‘just give her some more anaesthetic and just wait a little bit. They did and we did and it was much better. So much so that I actually couldn’t feel it (unlike the pain I’d experienced the time before), and it all went smooth and easily. They used ECG to help guide it in this time whereas last time it had been more guesswork as to where it was going. Interesting. Anyway, it was a success, which was a brilliant way to start our day.
10:30 – GFR (Kidney test)
The GFR is another experience that has caused some issues for me in the past. We were running late thanks to the PICC Line taking longer than they’d expected. We turned up at 11:00 and I waited a little while longer until they were ready. The way the GFR works is they have to have two veins – one to inject into, then one to take subsequent samples out of. So even with my shiny new (and still numb) PICC Line, I would have to have one brief cannula.
‘Some people have problems with my veins…’ My spiel went, as usual.
I’ve stopped saying ‘my veins are difficult’ or anything where I’m taking responsibility for this because as I have been shown enough time out of the hundreds of traumatising ones, some people have no issues at all.
But this absolutely brilliant human being had no issues whatsoever. She went straight in, it hardly hurt (other than what you’d expect) and I thanked her. She joked that it was a fluke but I told her I thought otherwise.
‘You can’t see them,’ she told me, referring to my veins, ‘but you can feel them.’
This is a sentiment that is not new to me. In fact, my blood taking soulmate who I remember really fondly on a previous hospital admission went into my veins with no issues, and with almost no light.
‘I don’t need to see it,’ he’d said. ‘I just need to feel it.’
And that is how you know you’ve got the right person on the case.
So that went wonderfully. I’ll also say that every cannula I’ve had while Rosa has been around (though she wasn’t in the actual room for this one) has gone perfectly first time. I’m sure she’s starting to wonder if I’ve made the whole ‘troubling veins’ thing up…
11:30 (for an 11:50 start) – the dreaded MRI
My last MRI was only a month ago but of course, I’ve been scared at how much bigger this thing will have got within a month. So when I saw my Oncologist last week I made sure I pushed to get another one. Which felt like an odd choice for me considering how problematic they are, but needs must.
We turned up at about 11:40 after the GFR was done.
Thankfully Rosa was on it and reminded me to take my Lorazepam.
A woman ran us through our forms – we both have to fill one out since Rosa comes in with me. Not like IN in, she doesn’t lie on top of me or anything, she just holds some random body part and we occasionally shout ‘I love you’ between scans.
However, the woman who was getting us ready had all the wrong sort of energy. She was very… business-like, ticking off things and had a very nervous unsettling energy. Then she said:
‘Oh I see you’re claustrophobic. Have you had an MRI before? Where have you had it? Have you had it here?’
‘Not on this level,’ I replied, ‘But I have had many here, yes.’
‘Well our machines are the tightest, smallest ones… they’re very enclosed.’
All I could hear were the words ‘tightest’ and ‘smallest’ going around and around and around in a swirling vortex.
It turned out all she needed to say were ‘do you usually have yours at the Eastman Dental Hospital? Because they have larger, more open ones.’
I only finally understood this after I panic listed every place I’d had an MRI – 5th floor at UCLH, the Macmillan Cancer Centre, West Moreland Street, Frenches Forest in Sydney…’
It turned out the West Moreland Street (and presumably 5th floor) are the exact same machines, so it was just the normal horrible machine I was used to. But there were at least 10 better ways she could have said this without barking ‘smallest’ and ‘tightest’ at me when she knew I was already claustrophobic about them.
It also gave me a flashback to the time they’d sprung a PET-MR on me and I ended up lying with this blanket of cameras over me, with a man saying ‘let me know if it’s too heavy, some people struggle to breathe under it…’ and about to be put into what seemed a tighter, smaller tube than I’d even expected.
It was only after I panicked, realising this was not a normal PET Scan that they said ‘oh we’ll just move you to the PET-CT scan then, no worries.
But it wasn’t that this time, it was the normal MRI machine that I’d had just a month ago. But I was shaken and my mind couldn’t help but keep throwing back those words at me.
I shakily got through the rest of the consent form almost in tears.
I knew I needed to do something.
Thankfully after she bristled and pushed and checked my PICC line, she sat us down to wait for the person before to finish. Rosa came and knelt by my arm where I was sitting – human touch from someone calm who you trust is a great panic stabiliser (and of course I was holding Clarence too) – and I took nice deep breaths and just said things like ‘we are calm, this is fine, normal machine, we’ve done it before.’
When we got into the machine there were two other people who were getting things ready and their energy felt a lot calmer. I also said to everyone: ‘I get quite panicky in MRIs so we’re just being nice and calm and relaxed and hopefully all will be fine. And if possible would it be ok if you start the scan kind of as soon as you can once I’m in?’
Because once it starts I’m usually OK but that infinite waiting time wondering what’s going on is where my brain runs riot. If that time is as short as possible, it’s a lot better. And – bless them to the end of the universe – they did. The guy doing the scan even checked in between scans to keep me updated at where we were and seeing if I was ok. The original lady also seemed to calm a bit after I said my little speech so that helped.
But you know what else helped? Rosa. She actually held my hand through it this time, and usually I’m fine with just a hand on my foot or leg but this time I was grateful for the actual hand hold. AND as I was being put in, she also reached over and put a hand on my other hand which was sitting sort of on my stomach holding Clarence.
‘Ohhhhh,’ that made me realise. ‘If she can touch that hand, I’m really not that far away. And if she can hold this one then she is actually right here, right next to me.’
It just pulled me right out of the isolation of the machine and my mind and everything was fine. I also popped another Lorazepam right before I went in which I knew takes 20 mins to kick in but I hoped it might have some placebo affect if nothing else. Another sign that I was in control.
And you know what? I was SO VERY CALM. I was super relaxed, didn’t feel stressed or panicky at all. Absolutely nailed it. My system of marginal gains – Clarence, Lorazepam, eye mask, friend – helps (Though having Rosa with me is more than a marginal gain). As does breathing, rubbing my fingertips together, reciting poetry, making up songs to the beats of the MRI and singing to myself make a difference if I feel like I’m pushing towards the panic end of the scale.
12:30 – break time
We got some food and coffee and took it over to the Living Room, the little communal sitting area in the Cancer Centre. We also got to meet up with our other good friend, Krista, who was also in for check ups and scans. It was so nice to get to see her briefly though it’s never nice to think that we’re seeing each other because we’re both having cancer treatment.
We sat for a bit and caught up. Rosa and I were parting ways at this point. I was sending her home to go do some work and i could do the last bit of the afternoon on my own. I had to run off to get back for my next blood sample at 13:20. But as I was leaving, the Oncology clinic called me saying I could go there now.
I said I had to go to the GFR but would come over later.
I was now running late.
13:30 – Run back for blood taking in GFR
When I got back to the main hospital and up to level 5, she ushered me in.
‘I called Sam because you were late.’
‘Yes, you were late so I called your friend. He said he would message you.’
I realised that Sam was evidently still on file at the hospital as my next of Kin, since he’d been the one to pick me up after my last admission last year. Poor Sam was in a work meeting. He knew I was going back for chemo, but he had no idea I’d been in that day. So a call saying ‘can you tell Jen to come to her blood test’ was rather out of left field and slightly odd. But he’s a good sport and it makes for an amusing anecdote about why he had to step out of a meeting.
Anyway, it all went smoothly and so I went back to Oncology clinic in the Macmillan Cancer Centre. Krista was still waiting so we got a bit more of a chat before she was called in.
15:20 – GFR
They hadn’t called me to clinic by the time I needed to get my final GFR blood sample so I went back over to the main hospital to get the final one. Everything went smoothly so I once finished, I made the trip again across to the Cancer Centre, where my name was on the board and I went straight in.
A new Onc who I’d never met before consulted me for chemo. I also saw my CNS who said she would order my chemo so it was ready for me. Great.
16:00 – Pre chemo full blood count
Down to the lower ground floor to give over some more blood.
16:30 – Pharmacy
Back up to talk to the pharmacist about all my meds, ready for Monday. There are loads. Aside from the chemo, I also have lots of anti sickness pills, steroids, and additional things to take to protect my bladder. I will have to do self injections again and take preventative antibiotics after I finish the chemo (note to self: get some probiotics to counteract). She also told me to start taking vitamin D tablets too. Ok cool. Can do.
17:15 – third Covid vax
I’d managed to get provision to get a third vax, since I am soon to be in the ‘extremely vulnerable’ group. It’s not just a booster either, it’s a proper third shot. Then, in 6 months when the chemo is all over, I’ll get my booster shot. Chemo can of course impact your immunity (by clearing you out of white blood cells) so to be safe, I’ll need another dose then.
The clinic doing it right by King’s Cross/St Pancras Station, so I’d managed to get in the system just in time that morning, and book an appointment for the end of the day on my way home. It was an extremely efficient affair and just two days before they’d kitted the whole place up in festive decorations. Everyone was wearing Christmas jumpers or clothes or at least a Santa hat. I told them all how amazing it all was and how much I appreciated it. They certainly brightened up my day. I usually don’t allow Chritmas things to start until the 5th of December (the day after my birthday) but it was nice on this occasion.
As I left I got a sticker and was handed a mince pie. What a delight.
18:45 – home time
10.5 hours after I’d left that morning, I was back home. It was a huge day. But successful. And I was all ready for everything to start on Monday.
I didn’t have any side effects from the vax the other two times, but on Saturday I was FREEZING. Proper freezing all day and even a long hot bath didn’t help. I was thinking my goodness, if I already can’t get warm and it’s still only November, how on earth will I survive the winter? But then I thought to check my temperature – 38.6 degrees.
So I was relieved to find out I had a lil post vax fever, rather than a complete lack of being able to handle the impending cold weather (which I do really have anyway, but in future a bath should actually help with that).
Of course from now on, since I’ve started chemo, any high temperatures will mean I will need to get to A&E (emergency department) very quickly because an infection would be trying to kill me. But for this moment, I wasn’t neutropenic and it was fine. But cold.
Other than that, I had a beautifully restful weekend and spent Sunday packing and cleaning a bit and getting ready for my big week.
I’ll leave it there for now, but there will be more to come soon.