I can't pretend to be an expert, but as if by osmosis, I have absorbed a dribble of understanding, so today, I'M GOING TO EXPLAIN YOU A THING. Or at least I'm going to explain it to the extent to which I understand it, which is probably more than any normal person would ever need to know anyway, unless they were and actual doctor or something.
Firstly, Hodgkin's lymphoma is only like leukaemia in that they're both classified as blood cancers, because they both involve the spodglification of blood cells (technical terminology, I promise). There could well be a couple more sciency similarities too, but they're actually completely different in the way they manifest. Hodgkin's lymphoma is a cancer of the lymphatic system, which is a network of glands in your body. I can honestly say I still haven't quite worked out exactly what the lymphatic system does, but it's related to blood and to the immune system, and it must be fairly important or I imagine they'd have pulled mine out through the nose by now. Lymph glands, or lymph nodes (which are the exact same thing, I now realise) are the same glands that swell up when you get an infection. You have them all over your body, but especially in your head, neck, armpits and groin.
With Hodgkin's lymphoma, these glands go lumpy. Links have been made to the glandular fever bug going kind of funky but nobody's established a reliable cause. Like most cancers, you just get unlucky and cells start misbehaving. Lymphoma doesn't live in the bloodstream in the same way leukaemia does, it's basically an extreme case of swollen glands, and a distinctly tumoury cancer.
I know what you're thinking - 'but Abi, you don't look very lumpy!' That's because all of my affected areas are pretty much in the middle of my chest (the mediastinum, although if I use big words like that, everyone gives me the confused look again), which is great for faking being a well person, but bloody awkward for treatment, because a) there are loads of important organs nearby, which risk damage and generally get in the way when you want to biopsy things, and b) BOOBS. Seriously, if you want an easy-to-grasp mental image, all the cancer in my body is basically behind my boobs, which isn't much of a problem until you're sat in a doctor's office, discussing the pros and cons of radiotherapy, and he's talking about the risk of breast cancer and referring repeatedly to 'your breasts' in a deadly serious tone. So weird.
Image source - bustygirlcomics
Most people with Hodgkin's go to the doctor because they've noticed that the glands in their neck are swollen and won't go down, but I never had visible symptoms, just mysterious chest pain. I don't know how my personal pain threshold compares to others', but I can say without hesitation that this was the worst thing I've ever experienced because it was so relentless. It felt a little bit like someone had grabbed a handful of flesh and was twisting it FOREVER. Over less than two months, my medication went from co-codamol, to stronger co-codamol, to codeine, to a low dose of morphine, to as much morphine as I needed in order to get any sleep at all. By the week before chemo, I was in a bizarre trance most of the time through a combination of narcotics, sleeplessness, and anxiety. It wasn't pretty.
Nobody ever determined the precise cause of that particular pain, but it went away within three days of my first dose of chemo so I have no doubt the bastard tumours in my chest were to blame in some way or another. In a convoluted sort of way, I was lucky it was there at all, because if it wasn't I'd never have had the chest x-ray that led to the CT scan that led to the biopsy that led to the diagnosis. I might still be at uni right now, drenched in sweat, half my original weight, almost entirely made out of cancer.
In my case, it was caught pretty late. It's diagnosed with stages:
1 - one group of lymph nodes has blobbified. You're mildly screwed.
2 - two or more groups of lymph nodes are spawning weirdo cells, but they're both either north or south of the diaphragm. Still only mildly screwed.
3 - two or more groups of lymph nodes are doing the lumpy thing, both north and south of the diaphragm. Moderately concerning.
4 - two or more groups of lymph nodes are glowing with cancertastic joy, and it's also spread to other organs or bones. Firmly in the grip of the lymphoma monster. You should probably elevate your worry levels to 'high'.
The doctor classifies it as type A or B depending on whether or not you've got BONUS symptoms (in my case, at least 10% weight loss over 6 months, and night sweats), and adds an X if it's assumed a distinctly masculine persona and is taking up a lot of space. The combination of numbers and letters I was presented with was pretty much the worst case scenario: 4XB. Go hard or go home.
In October, the extent of the mess inside my ribcage was delivered to me in a diluted form. The doctor did show me the images from my PET scan, so I got to see the abundance of tumours in all their luminous goodness (PET scans light up in all the areas where cancer is hiding), but it wasn't until this week that he really stressed just how much cancer there had been. Originally I had no frame of reference, so I saw that a lot of my chest was glowing, but to my doctor's credit, I had no idea how bad it was in comparison to other people with the disease. Turns out that lymph nodes around the lungs and heart and behind the collarbones towards the neck, plus part of a lung and a bit of your spine, is quite a lot of places for lymphoma to be.
Diagram doesn't represent actual science in any way, shape
or form. But it has pretty colours, right? #priorities
My consultant is a seriously fantastic doctor. He somehow manages to make cancer entertaining without being patronising, and still exudes this air of 'I know exactly what I'm talking about'. He feels like a safe pair of hands, and he reminds my mum of Nick Grimshaw mixed with Gok Wan, which is never a bad combination. In October, he told me he was prescribing six cycles of ABVD chemotherapy, and then may or may not proceed with radiotherapy depending on how well the chemo zaps the tumours. It was a lot to digest but I made my peace with it - with that plan, I'd probably be free of the bugger by early summer.
I don't think I realised how much I'd internalised that timeframe, so when I found out yesterday that it might be a deal more complicated, it was quite hard to swallow. My new scans were really good - it's nearly all gone, but there are two regions where the images were still faintly glowy which means I don't get to leave this crap behind me just yet. Apparently I'm an awkward customer because the two regions that need attention are about three miles away from each other. The preferred approach with radiotherapy is kind of 'stabby stabby'. The smaller the beam the better, because high-energy beams don't discriminate between cancerous tissue and healthy tissue, so the less good stuff you can damage the better. Treating my remaining areas of concern with radiotherapy would also mean treating a large chunk of lung, a significant blob of breast tissue, and all the other stuff that's between my breastbone and my right collarbone, which is possible but difficult and quite risky.
The alternatives presented were more biopsies to determine if the flashy pretty bits of my PET scan are actually leftover lymphoma and not just rogue inflammation, and more chemo of a different type to what I had before. Before any decisions are made, he wants to ask as many experts as he can possibly find, and get a second opinion or seventeen, which means I have to wait another three weeks before I get any real answers or any actual action plan. I was expecting yesterday to bring me some kind of resolution, for better or worse, and without that I'm at a bit of a loss.
All that's left for me at the moment is to try and concentrate on the fact that my scans showed a really drastic improvement, and to hope that whatever comes next still manages to liberate me in time for the new uni term in October. For the next three weeks, I'll just have to waft about, furiously imitating a healthy person and keeping my fingers crossed that at the end of it, Dr Ed(/Nick/Gok) tells me something I want to hear.
Abi xx
