After being diagnosed with Hodgkin’s lymphoma, nearly everyone I spoke to told me I ought to write a blog, to which my stock response was, ‘yeah good one – you don’t think I have enough on my plate right now with the constant doctor’s appointments, and the endless Googling and the general fear?’
As it turned out, they were all correct, and I did want to write something down, as it turns out, so I thought, why not write something useful for everyone else? Being diagnosed with cancer comes with an almost constant barrage of information, medical terminology and more general fear (a recurring theme here, so much so that I’m considering shortening it to ‘GF’ just to save time) so I thought I would write about my experiences and the process in general in a non-terrifying way, for the next person who has to go through this.
I was going to start the usual way, at the beginning, with the initial scan that led to the diagnosis, but that was so hideous and unexpected (I thought I’d damaged my neck during circus training – and I realise that sounds like I’m joking but I’m not) that it gave me a panic attack, followed by a comedically inappropriate attack of the hiccups, from gulping in all the air during the panic attack, and the embarrassment that caused is still resonating through me now, so instead, we will start with the PET scan, because the wonder and awe at medical science that it inspired in me is similar to what most people would reserve for a ride on the back of a woolly mammoth.
So, the PET scan. NOTE: if you are reading this as a medical professional, you may want to skip ahead, because I was attempting to explain this to a friend at brunch yesterday in front of another friend, Ruth, who is a doctor, and I noticed that my non-medical, layman terminology was causing her to grip the base of a candle tightly until her knuckles turned white, and when I asked her if she found me attempting to explain a PET scan painful, she said, ‘No, I’m just…looking at this candle‘, through gritted teeth, so I assume my explanation was not science-standard, but when you have cancer everyone has to be nice to you and not call you a complete berk, like they usually would.
A PET scan comes after your initial cancer diagnosis, and it is to find out how far into your body the cancer has spread. SPOILER ALERT: mine was only in my neck and upper chest, which is what they had found on the initial ultrasound, so that was a relief all round, what with me having spent a week imagining the doctors telling me I was ‘riddled with it’, and then wondering if a doctor would actually use the term ‘riddled’, being as I am a human being, and not a woodwormed sideboard.
So, the scan, which was one of the oddest experiences of my life so far – and I have shared a dressing room with a 10-piece mariachi band in togas and sombreros…which is probably another post for another time. They kick off by asking you to sign a form that confirms you’re definitely not pregnant, because they are going to inject you with a radioactive substance, at which I laughed, because I thought it was a joke. IT WAS NOT A JOKE. The idea behind the PET scan is that they inject you with a radioactive dye, containing glucose. Cancerous cells use up twice as much energy as normal cells, so as the dye makes its way around your body, they will glow on the scan. That is literally the most non-scientific explanation going, but it is, objectively, totally fascinating that medical technology can do this.
The bit that I found completely insane was the preparation – I had to fast for 6 hours beforehand, then when I arrived at the hospital (note – I had this done privately so I’m not sure how the NHS differs), put me in a private room and injected me with a radioactive dye (the nurse did this, and then said to me, ‘now you are an atomic bomb!’ This, unlike before, was a joke).
I was then warned not to go near pregnant women or children for 6 hours afterwards because I would be radioactive. This time, unbelievably, not a joke. The entire experience wasn’t unlike stepping into an early 80s kids cartoon, and I kept wondering whether to use my superpowers for good or evil.
Because of the dye showing up which cells are using the most energy (I can literally see Ruth shaking her head in despair right now at this poor excuse for an explanation), you have to stay very still, with absolutely no stimulation, in a room, alone, for an hour before the scan. This means no phone, no reading, no radio, no company. So, to put this in context, you know you have cancer, you are waiting to find out how advanced it is, and all you are allowed to do is sit in a room alone for an hour, hungry, and thinking about this. Like, I’ve had better afternoons.
This was a little internal dialogue that I had with myself:
‘I need the loo. The nurse said it was fine to go to the loo so I should just get up and go.’
‘But what if the energy used going to the loo makes the cells go crazy and they think I have cancer in my legs and my arms too?’
‘But I need to go. Maybe the effort of holding it in will make my bladder area go insane and then they’ll think I have bladder cancer.’
‘But the nurse said I should stay as still as possible. Did this cover loo visits? Should I try and move very slowly to the loo, in the manner of someone performing interpretive dance?’
‘Maybe I’ll just hold it in. But what if thinking about needing the loo is making my brain work overtime, and then they’ll think I have brain cancer OH GOD.’
In the end, I went to the loo, and no one told me I had bladder, brain or arm and leg cancer, so that just goes to show that one can overthink these things. But in my defence, I’m not sure what else I was to do, in a room, alone, without even a copy of Hello for company.
Anyway, after I sat for an hour (and I did actually drop off for a bit so it wasn’t all bad), they whacked me in a scanner for about half an hour – which looks like a half circle and not like an MRI full body scanner, which I was relieved about because I am deeply claustrophobic, probably from being ‘hidden’ in the blanket box by my elder siblings when I was small. Thanks siblings.
They they had to put me back in again because typically, I had moved while they were scanning my neck – the most important bit. After that, my boyfriend collected me and I was free to go and wander the streets of Marylebone, radioactively, intoning ‘WATCH OUT BABIES – RADIOACTIVE WOMAN IS COMING.’ (Not really, although only because my boyfriend wouldn’t let me.)
I had my scan on a Friday and had the results on Monday morning, before an operation I was due to undergo, to remove some lymph nodes for further analysis. Again, this is private, so I don’t know how long it takes to get the results on the NHS, but either way, you don’t get them immediately. As I said before, the results of mine were the best possible outcome – it hadn’t spread further than we knew, and for that I feel extremely fortunate. Now I have three weeks of fertility treatment and then four months of chemotherapy to look forward to, so no doubt there will be more substandard medical explanations here to look forward to very soon.