Can I just say how overwhelmed I’ve been by the response to the blogs? When I started them, I never really expected anyone to actually read them – I was writing for me and because I decided I had something to say. It was pretty soon after I was told I had something like a month left to live and I’m pretty sure I was still digesting that.
Now, it is a month later. I’ve digested the reality of dying soon as much as I think one can; it’s just not really happening yet. My mother tells me I look like a healthy person. Sometimes I think it’d almost be worth it to ask for a quick bone marrow biopsy just to see what sort of level the leukaemia inside it is at. It was 4% last time it was checked, several months ago. As for the leukaemic cells in my central nervous system – gotta say that whatever else the radiation did to me, it does seem to have killed off the bad cells. I’ve not had double vision since last year (except when I get really tired) and I’ve had no headaches, which I guess is just more proof that Acute Lymphoblastic Leukaemia is very susceptible to radiotherapy. If only my legs worked, I’d actually be able to drive.
(NOTE: This is a thing for me because since I passed my test on March 11th 2015, I have been medically allowed to drive for about three and a half months, with the odd week here and there throughout the last two years. I’ve either had double vision or not been allowed to weight bear – and now I physically unable to. It sucks. I quite enjoy(ed) driving.)
Moving on. I still can’t decide whether I would agree to have the radiotherapy again, if I was back where I was last year, knowing what I know now. See, they give you consent forms for procedures that have risks; we always used to joke that it was signing your life away each time you signed one. The risks are all listed on them, even the really rare and horrible ones – “only 5% of patients end up with that”, you get told – and you’re lulled into this sense of invincibility because it always happens to someone else, right?
But doesn’t cancer always happen to someone else?
Neither the radiology consultant nor the haematology consultant were able to guess the effect the radiotherapy would have on me. I was already an anomaly in the field of neurology before we started; white matter scarring already on my brain brought an element of uncertainty to the equation. The scarring had come from a previous neurotoxicity in 2013 – I don’t have the best luck with the ol’ noggin, do I?
I started out radiotherapy quite well. The radiology centre in Southampton is quite pleasant. Modern. And it was all spruced up for Christmas, tree and baubles and all. It’s not an ideal time to have radiotherapy – it’s not a good time for any hospital treatment to be honest – but I think they rushed the technical calculations so I could get squeezed in. Before the actual radiation, I had the pleasure of getting a mask made of my face and shoulders, skin-tight (good job I’m not claustrophobic). They literally made a mould of my face; I’ve heard you can make a 3D copy of someone’s face from one of those masks, it’s so tight. Then a CT scan to check the measurements of my spine; I came out of this with three more tattoo dots. If you’re a Friends fan, I’ve copied Phoebe and got the world tattooed on my torso five times. You need to break open my chest at the exact point between my lungs? I’m set.
Radiologists are lovely people. They’re so nice you can almost forget the horrible things they do to you. And they have good banter – I think they have to, or they learn to, because the waiting times can get pretty damn long and I imagine placating patients is a common part of their job description. It must be hard to keep to track when some patient treatments take ten minutes and others, like mine, took forty minutes at least. Special props to the one radiologist who consoled one old man who’d been waiting for over two hours and looked like he was going to be waiting a lot longer with: “And that’s why they call you patients.” Plus the waiting room always had a puzzle to do, which I thought was cool.
Most of that forty minutes I spent in Linac B every day (once in Linac C when the normal machine one was broken) was spent being positioned on the ‘bed’ in the exact same position, having my torso slightly shifted and my legs pulled until I was within their agreed margins. They let me have music though; one of the team was tech savvy enough to plug my phone into a speaker. It was suggested that I create a playlist to listen to during this time. Despite having very little else to occupy my time with, I never created a playlist. But I’ve never been too fussed over what I listen to; my parents always played Wave 105 on the car and home radio, so I’ve grown up with a tolerance for many types of music. When I used to have an MRI back in the day, I’d always listen to what was previously playing. And when I started my physical decline, I was just happy to listen to whatever their iPod played.
I don’t know whether this makes me strange or whether it’s a common situation, but when I was having my radiotherapy or when I’ve had an MRI (they take a significant amount of time) I always started to fall asleep. The noises from the machines, particularly the MRI, just seemed like a kind of white noise. I know some people get really distressed in those sort of situations, but I just never got what the fuss was. The radiologists never minded if I fell asleep and a nap is always nice, so I guess it was a win all round.
Before the radiotherapy started, I’d been told tiredness was a very common side effect. This was especially true for the type of radiotherapy I would be having since the brain and spine cover a large area of the body. Cranial-spinal radiation is, apparently, the second most intensive radiotherapy after Total Body Irradiation, which I previously had last November as part of my conditioning for my stem cell transplant. Unlike most people I know who had TBI, I had very little post radiation tiredness so I didn’t expect anything serious this time around. And while I was tireder, I wouldn’t say that I was massively affected by it.
What I was getting affected by was weakness. As the first week of radiotherapy progressed, I was finding it harder to remain steady on my feet and my speech was undeniably slurred. I didn’t think much of it at the time – after all, wasn’t this supposed to be happening? But at the end of that first week of radiotherapy it was Christmas Eve. This would’ve been of little note except for the fact in the evening I stood up from the sofa and was so unsteady on my feet that I required crutches (left over from the year before’s AVN issues) to safely manage the stairs. This unsteadiness did not cease the next day and, frankly, made for a pretty rubbish Christmas Day. Of course, we tried to make the most of it but when your body isn’t working right, it’s not something you can easily ignore.
Now why didn’t we go to the hospital right away? Something was obviously wrong and it wasn’t going to get better by sitting at home. I knew that. It’s just that for the past few years – I think three out of four – we’d spent some part of Christmas in some hospital. It gets old. Fast. The staff try to make you feel better about it but there’s always that thought that you’re not where you want to be on Christmas. So I made a deal with my mother: we’d go in to the hospital on Boxing Day.
As many of you probably remember, Boxing Day is still a holiday and so was the day after. This meant that while the mainly regular nursing staff were on, all the usual doctors and consultants were not. I’m not here to begrudge them their holiday – they work hard and undoubtedly deserve the time off – but it is extremely annoying having a doctor with no real idea of your medical history attempting to make a diagnosis. You know, sometimes the problem isn’t actually due to the cancer. I can understand why that is the first assumption, but I can’t understand why it is the only one.
Anyway, eventually it was decided that I had cerebellitus as a side effect from with the interventricular chemo (through the portacath in my head, previously mentioned in another post). This, apparently, was the cause of my slurred speech and unsteady legs. I was given a zimmerframe and exercises by the physios to help me move about but it was tiring work. I kept at it but it would’ve been quite easy to quit.
Meanwhile, on the 27th of December, I started radiotherapy again. To make up for the bank holidays, I was to be having sessions on Saturdays as well as the week days so it felt very full on with a day less to recuperate. The good news was that since I was an inpatient, we no longer had to travel to the hospital every day. Most of the sessions were in the afternoon, but it becomes a real slog when you’re on the motorway every single day. While waiting for porters can be a task in itself (once the radiology team got so tired of waiting that they came and got me themselves after waiting an hour) it was a hell of a lot easier than driving in each day. Most of you won’t be aware of this but the car parking situation at Southampton is shockingly bad; hopefully the new car park they’re currently building helps out, but I have my doubts. And, of course, I didn’t have PIP (Personal Independence Payment) and therefore wasn’t applicable for a blue badge to park in a disabled space. Not particularly relevent while I was an inpatient but it was definitely something to think about when we got discharged; we’d need a larger space to allow me to get into the car with the zimmerframe and then to get the wheelchair out/in too. We would have just temporarily parked in the disabled spaces and my mum would’ve come back after I’d been dropped off in the ward to find a normal space but at the time we were devising this genius strategy, the hospital decided to change the company that managed the car park to one that fined for parking in the wrong area. Alternatively there was also the drop off zone that we could’ve used where you get twenty minutes parking but there were several problems with that: there were never any spaces because they were filled with taxis; you then had to rejoin that extremely long queue to get into the normal car park; my mum would’ve had to have left me on my own for a long period while this happened.
We asked our social worker to phone travelwise (the carpark people) to see if we could strike a deal to park in a disabled space but that was a no go. There was no way I was going to qualify for a blue badge – you have to have had your disability for at least three months and other things like that. So we didn’t bother and when we were discharged, we just tried to find two free spaces next to each other (that did not happen often).
Call me strange but when something’s wrong with me, I generally expect it to get better. Maybe not right away, but to have some sort of sign of improvement. When I came home, I didn’t have any sign of things going that way. I had to keep on using the zimmerframe to get around and I ended up sleeping downstairs since I could no longer get up the stairs. I found it hard to actually stand up from the sofa (I’m gonna blame the sofa being too low down for this one) and had to be lifted from both sides up to the zimmerframe. Without the zimmerframe, I could manage perhaps a step or two if supported. It didn’t seem to me that it was getting any better, despite all the physio exercises I was doing every night. If anything, it seemed like it was getting worse.
Which it was. Everything was just getting harder. My leg muscles were just refusing to cooperate more and more – to actually get to the hospital, we had to call my dad home from work so he could bodily lift me into the car from the wheelchair. He drove us there and lifted me out on the other side too. Then I think he went back to work. We, meanwhile, once again became inpatients.
My gradual decline continued during out stay but it was strange in that there was no consistency to it. One day I’d be able to raise both legs but the next I’d only be able to wiggle my toes. To be fair some days I’d be able to do something in the morning and then five minutes later I’d be completely incapable of it. On the day I was admitted, I had an MRI scan of my brain and spine; it was after this that I learned the doctors suspected I had nerve inflammation and that my mobility issues weren’t necessarily going to get better. I wish I’d known back when the issues started that that was as good as it was ever going to get again. I was so convinced that it was going to get better again – I thought maybe it would take a few months, but I’d get there. The frustration when you stare at that gap you can no longer cross by yourself is unbelievable. Just the simplest things become mountains.
And you know what? I read a quote that said facing challenges makes life interesting and overcoming them makes life meaningful. What a load of crap. My life was interesting before this and I sure as hell felt life was more meaningful when I could walk. Facing difficulties just makes your life hard. Does anyone truly want to be the person that suffers so people can point and say “Gee, their life must be so hard, what an inspiration they are to us all,”? Because I can’t imagine anyone choosing that as their dream for the future.
So I guess I’ll end here. I’ve run out of steam. This blog is over 2,500 words. The medical stuff is as I remember it being, which means it’s perhaps not as accurate as it should be – I tried but I’m no doctor. Hope you enjoy it regardless of my incompetence and hopefully it gives more of an insight into what’s actually wrong with my legs; I know it can confuse people. Thanks for reading!