So as you all know, once my conventional doctors started telling me they had nothing really to help and that I’d die any day (over a year ago now, suckers), I started to look for what other options there might be out there in the wide world, because I wasn’t keen in being given up on and left to my own devices. So one of the new members of my new Jen appointed team is a cancer metabolic treatment specialist. In my initial appointment with her, where we went through the extensive testing she’d ordered in order to understand what’s going on in my body, she said ‘oh, you’re in a great place, we can definitely work on keeping this managed for some time’. It was a much preferable narrative to the other doctors who were hell bent on making sure I didn’t have any hope, and mostly just shrugged at me, saying there was nothing they could, or would do. Just the occasional scan that would take two months to get results for and would require a lot of effort from me to drag it out of them.

So, my new specialist had a whole lot of suggestions and created a protocol specific to me, which involved getting me on a swathe of new medications and supplements and treatments, and one of her many facets for management was Hyperbaric Oxygen Treatment. If you want to know more about it, you can Google it. But as a brief summary:

Hyperbaric Oxygen Treatment (HBOT) involves breathing pure oxygen in a pressurised chamber, which can significantly increase the amount of oxygen that our blood and tissues can carry. This oxygen-rich environment is believed to make it more challenging for cancer cells to survive, as they often prefer low-oxygen (hypoxic) conditions. While results vary, preclinical studies have shown that HBOT could inhibit the growth of specific types of tumours. HBOT may also have a positive effect on the immune system, which will help my body hold against the cancer too. It can also help with wound healing, and hey, I’ve got a huge hole in my face. Plus, it can help lower infection and inflammation in the body (bad), which metabolic testing showed I have a constant low level of (not surprising – literal hole in my face). It’s also good for general recovery (I’m still recovering from last year’s Radiotherapy, believe it or not), and it might help with neuropathy (nerve pain) too. Woohoo!

Yes, preclinical studies. As far as I know, there are none of those huge Randomised Controlled Trials done on this – the ones that conventional medicine require to consider taking anything seriously. But by the time there are some, I’ll be long gone. And I’ll probably be waiting forever and ever for there to be one for osteosarcoma, specifically. There just aren’t enough of us. So preclinical studies are going to have to be good enough for me – plus, hugely subsidised pricing for treatment, thank goodness. Otherwise I’d have no chance. People pay hundreds of pounds a session to do this privately for ‘wellness’.

I’m actually having it at an MS centre which I find really interesting. But they take on some people with cancer and also long covid. It took a while to get it all sorted out and approved and booked in, forms zipping back and forth, signatures, even my GP had to get involved, but I finally managed to get approval and find 5 weeks where I was in the country (what even is my life?!), so I wedged it in, 4 days after returning from India.

I made the trip out to the centre for my first session on a grey, gloomy Monday morning – about 1-1.5 hours of travel each way, for a 90 minute session. I apparently had to do 4-5 sessions a week, which was just exhausting to think about. So I tried not to think. For now, I just had to get through one.

I had left plenty of time to make sure I arrived 15mins early, as requested, but the bus I took from the train station was on diversion and took me miles away (ok, not actually miles). So I got off and started walking. Then my Maps took me to the wrong side of the industrial estate the place is in, and I couldn’t for the life of me work out how to get in. I walked back and forth trying to see the entrance my phone assured me was there, but to no avail. So I walked all the way around to the other side, to what appeared to be the main (and apparently only) entrance and walked through the estate to the very back corner, where the place itself sat. Still early enough, but not as early as I’d planned. And there’s nothing I hate more than feeling rushed, being rude, and running late.

The woman who runs the centre is quite short and terse. She scares me a little. She takes me into the room, and into the diving bell, where the treatment would be happening. There are three different types and colours of chair and she tells me to sit in one of the big blue ones – the comfy ones, she says, they always get taken first. She pulls out a gas mask, saying ‘size medium for you, I think.’
‘Oh, ok, I think I might actually be—’
‘Medium.’
‘…Ok…’
She sits me down and starts to clamp this gas mask over my face. It’s huge. The straps to hold it to the top of my head are twisted, and she pulls it tight on the strap around my head so I can’t move my head up and have to gaze down at my lap. She starts hooking me up to two pipes on either side of my chair.

‘Just breathe,’ she says. ‘And if you start to feel claustrophobic… well… don’t. Because then we’ll have to bring you all back up and it’ll take 15 minutes anyway, and you’ll ruin everyone else’s dive.’
‘Um… uh… ok… I’ll try…’ I say, feeling sweat crawling across my brow.
Being told not to panic because I’m actually trapped and can’t get out any time soon is really helpful, thanks.
‘Don’t worry,’ says the guy two seats away from me around in the little circle we were sitting. ‘You’ll be fine. And don’t forget we’re not actually diving, there is still air in here, if the mask gets too much, just take it off.’
‘Thank you,’ I say, trying to flash him a small smile through the mask which he obviously can’t see. All I am in this moment is one little eye peering out between the mask and straps. It feels so obvious, of course, that it’s air. It feels mad he’d even think to mention it. But somehow, that reminder is exactly what I need. He knew.

‘You can feel the oxygen coming in, yes?’ Short and Terse asks.
‘Um… no? Not really…’ I mumble through the mask.
‘Good, good,’ she says, ‘Now remember, you MUST relax. It won’t work if you don’t. YOU MUST BE RELAXED, OK? That is the most important. Otherwise it won’t work,’ she says as she leaves.

Once the 5 of us (capacity) are in and hooked up, a different woman, with a kind smile, pops her head in to say we’re ready to start and that she would be running the ‘dive’ today. They close the heavy metal door and lock us in. Then they start to depressurise the diving bell, as, presumably oxygen flows into our masks.

Very quickly I realise the mask is not a great idea for my face-not-face. It doesn’t have anything to sit against on the right side, so it pushes the plastic that has fallen out through my face back against my nerves, my implants, my remaining teeth, my tumour, my brain. The pain is increasing by the minute. I try to hold the plastic teeth/roof of my mouth in with my tongue so that the mask has something to push against, rather than pushing everything back in, and my teeth down and out. It’s hard to breathe like that but it helps a little with some of the pain.

Relax. RELAX. YOU MUST RELAX.

I’d planned to use these sessions to do my final read through of my novel before it’s ready to publish, but the men around me are breathing so heavily, I can’t hear myself think. How are they doing it? They’re literally heaving. They sound like they’re about to keel over. I try to make noise like them when I breathe, but when I try to pull the air in and out, I can’t hear a sound. Am I doing it wrong? How is it even possible to make that much noise?

No phones in the diving bell – well you can take them, but they must be on airplane mode. I’m not sure if bluetooth is allowed so I just put my earphones in and hope that they’ll mute the noise a little. They don’t, really. I’ll bring non-bluetooth headphones tomorrow. I bought some new ones recently because I keep reading how bad bluetooth is for our bodies. But I tried to use the new ones once on a call to my bestie in Sydney, and my whole face heated up to burning point and I was forced to take them off, so I’m not sure about them… But I can’t stand the noise of 4 men heavily breathing. It’s honestly so loud, it’s echoing through my whole body. So much for getting some work done.

By the end of the hour and a half, the pain is just too much. I worry it’s doing some sort of damage. I smile and thank everyone until I get outside, then I start crying. I cry all the way to the bus stop.

I’m hungry, too. I have to fast before each session. So that means no eating from 5pm the day before. Considering I get home at 3pm, that gives me a 2 hr window to eat enough to sustain me to the next afternoon. I’m meant to be in ‘Ketosis’ for the treatment, in order for it to be effective. I’ve been trying for a week now to get this elusive ‘ketosis’ and haven’t had any luck, practically starving myself in the process. I must try harder, I’m wasting the sessions by not being in ketosis, my mind prods. Which is all well and good but there is nothing more I can do… I’m doing it all. It’s just not happening…

Between my sessions I listen to a podcast with a cancer metabolic expert who says you absolutely MUST be in ketosis for the treatment because otherwise you are DAMAGING your body as well as rendering the treatment INNEFECTIVE. There’s nothing still nothing more I can do. I try to reassure myself by the fact MY specialist just said to fast and take ketones, and that I can’t find anything online that says it’s dangerous, otherwise, and hope that it is in fact enough.

Day two is a little better because I know what to expect. The pain is worse though, compounding over time, I suppose. The diving bell is filled with women this time, who breathe more quietly than the men, but still loudly… I must be missing something…

I spend the session worrying about the fact that a lot of my air comes through the massive hole in my face, which is OUTSIDE the mask. So I’m probably only getting a subset of the oxygen, as the rest filters out through that hole, and non hyper-oxygenated air comes in through it.
‘Breathe through your nose,’ I’d been told.
‘Oh, I can’t,’ I replied.
‘Ok then, through your mouth then…’
But it’s not quite as straightforward as that.
Short and Terse doesn’t ever have a lot of time for me to discuss any of this with her. It’s just short sentences (hence the nickname, not any reference to her height) and quick dismissals. It’s not that she’s unkind, she really isn’t. It’s just how her communication style and busyness come across, I suppose.

After the session I ask the dive lady, another one with a kind smile, if there are any other options of masks, as due to all my surgery etc., wearing the mask isn’t working so well for me. She tells me they have a mask they use for children, which is more of a hood than a mask, and it goes around the whole head and seals at the neck. She thinks it might work and tells me to ask Short and Terse if I could try that – she’s sure I am small enough to fit it.

So after my session, I go to ask her.
‘How was your session?’ She asks as I front up to the counter.
‘Good, good,’ I reply. ‘Um… I was just wondering, is there maybe… a different option that I can use for the mask, as this one is interfering with my past surgery and causing me quite a lot of pain.’
‘No. I didn’t know that, but no. There isn’t. There is only the ones we use for children. But you are not a child.’
‘Oh, ok, well, I’m quite small, I’d probably fit it…’ I reply, backed up by the conversation I’d just had with Kind Smile.
‘No you are not a child. You will not fit. Here, come, I will show you. But you will not fit.’
We walk back to the dive room and Kind Smile says ‘Oh yes I was thinking she could try the children’s mask.’
‘Not possible, she is not a child.’
‘Yes, but she’s very small. Smaller than some of our children, I think it would be fine.’
They get it out and put it on me. It fits, fine. It’s like a big crumpled plastic bag made of thick plastic that seals tightly aroundn my neck. I wonder if it’ll trigger my panic of feeling trapped, but I can see through it and it feels fine.
‘Yeah, that’s cool, can I try it?’ I ask.
‘Yes ok, you will try it tomorrow.’

I go home feeling somewhat relieved that I would get to skip the pain and the worry that it wasn’t working properly. But also slightly worried about how I would go with a big bag over my head for an hour and a half…