Oligodendroglioma, Radiotherapy, Seizure

Waiting for the shoe to drop

Although I knew full well that it takes around two weeks for any radiotherapy side effects to show themselves, it’s hard not to interpret each and every twinge during the first half of my six weeks of daily radiotherapy as A Sign. Is this tired feeling a symptom of the treatment, a side effect of the anti convulsant drugs, the brain tumour acting up or because I stayed up until 4am watching Ancient Aliens? We may simply never know.

So on the evening of the second session, when I get a sore throat, it’s abundantly clear that this means my salivary glands are dying. Radiotherapy to the head and neck can affect your salivary glands, leaving you either temporarily or permanently with a dry mouth. That fact that the radiotherapy is all up near the top of my head, and I’ve had a mere TWO SESSIONS is no reason not to assume this is definitely happening. Farewell, salivary glands. We had a good run together, and I’m sorry for ever underestimating the simple beauty of being able to lubricate and swallow food. Ur wiv da angles now. Of course the next morning, I wake up with a snotty nose. It’s just a cold. The glands live to spit another day!

The first thing to actually go is multitasking. I usually have the attention span of a gnat with ADD, and need to be doing at least three things at once. One or two is just too boring.  After around 8 radiotherapy sessions,  I can either use the computer or watch telly. Make a drink or talk to someone. Not both.  Having decided that I will walk up to the hospital every day for as long as possible (why not when it’s so pretty? The path is pictured above), and accept lifts back home in case of a seizure, I decide to add daily tasks in to the mix, to try and stay mentally active too. On the day of session 6, my tasks are to do a VAT return and change the bedlinen. Not a gargantuan task list, but I’m pleased to manage it easily. Session 11, a week later, the task list has shrunk to sending a single email to my accountant. I manage it at 11.55pm, but only just, and only by forcing myself, refusing to be beaten.

It’s not so much the tiredness that’s the problem. I’ve been as tired or more tired than this for years. It’s the tiredness a parent of a toddler and baby feels when they’ve got a cold. Offer to show me a picture of a kitten and it’d seem like a big job. Maybe next week, yeah? The problem is a mental tiredness akin to confusion, and the confusion is mostly about other people’s speech. When anyone talks to me, I find it very hard to take in. Questions, particularly open questions are the worst. A simple ‘coffee or tea?’ leaves me blank eyed and reeling. I don’t know. Just give me a hot drink. It doesn’t matter. A list of options may as well be in Japanese. It just doesn’t make any sense. The individual words probably make sense, but they seem to bounce off my mind like it’s made from Teflon. The strangest thing is that I don’t have the same problem with text, it’s the spoken word only. OK, I’m not really up for reading Ulysses in the next couple of weeks, but normal daily information in written form is no bother at all.

Perhaps this is because if someone emails you or texts you a question, it’s perfectly acceptable to take 5 or 10 minutes to respond. The same is not true face to face or on the phone. Think about what your brain is doing when someone asks you a question. You have to:

  • Recognise that they’re talking to you;
  • Listen to what they’re saying, concentrate on it and understand it, even as they move on to the next sentence and the next;
  • Remember and understand the options they are offering;
  • Compare the options;
  • Decide which you prefer;
  • Formulate a response; and
  • Say the response.

It’s a surprisingly complex process, and I can feel each and every step of it right now. It is hard work. During half term, E has to visit the dental hospital. The consultant addresses the questions about her general health to me. I’ve never had a PhD viva, but imagine it’s considerably easier than trying to remember what your eldest child likes to snack on.  Like someone in the early stages of Alzheimer’s, I use covering tactics, also known as cheating.

Dentist: Does she have any allergies?

Me: No. *panics. Does she?* Um, you don’t do you pet?

Dentist: Has she ever had a general anaesthetic?

Me: *is she the one with the tonsils or is that the other one? Directs HELP ME look at A* You haven’t have you E?

I very nearly give my date of birth instead of hers, so used am I to parroting it 58 times a day.  My name is now Ruth Surname-Dateofbirth. However, my date of birth in this context will soon get us kicked out of the paediatric department.

Telling the radiographers about this the next day, they laugh. Apparently, they get so used to asking for everyone’s date of birth one of them recently got to the front of the queue in Tescos and absent mindedly asked the cashier for her date of birth, to which she took some umbrage. At least it’s not just me.

 

I’m almost at the point of asking everyone, even A and the girls to text rather than speak to me when 9 year old L that cracks the code, and I could not be prouder of her perceptiveness and logical thinking.

L: Mummy, I’m going to ask you a question, okay?

Me:……OK

L: What I’m going to to is break it in to little chunks and check you understand each one, OK?

Me:…..OK

L: What are the names of all the cats you’ve ever had?

Me: Moxy, Bob, Bob who turned out to be Bird, Gary and Jesús.

L: And what was you favourite out of those names?

And so on until we’ve had an entire long conversation about cats. And I understood it all!

Talk to me like I’m not a native English speaker and am new to the language, and we’re golden! The brain is just amazing. I spoke to a lady at clinic the other day who has the same level of confusion but with numbers and time. She can no longer read a digital clock, and is entirely dependent on her husband to tell her when they have to leave for appointments, and what day it is. Tell her 6 times in a row and she still can’t take it in, but is totally fine with speech.

The other symptom that kicks in in the second week is seizures. I had presumed that any seizures would be identical to the original ones; full blown paralysis, keeling over and definitely not pissing myself. It never occurred to me that they could come out in a different way. However, after two days of my left hamstring twitching like crazy, I mention it to the nurse. It seems weird that it’s only on the left side. To be honest, I only mention it then because it starts to extend to my buttock and I look like I’m doing a one sided twerk, which is just freaky. Another missed opportunity to make serious Bitcoin. After some discussion, it’s agreed that this could well be ‘controlled seizure activity’; i.e. if I weren’t already on anti-convulsants, it would be a full blown seizure. My dosage is upped again – it’s now triple what it was when I was in hospital. We’re going to be in rhino sedative territory soon. A dancing half arse is better than the electrocution type seizure, but even better to be safe than sorry.

And then do you know what? My cold lifts, and I’m fine. On a bad day I have some confusion an hour or two after treatment, but nothing like that third week. Most of the time I feel pretty good. It’s starting to look like I may get through this radiotherapy lark relatively unscathed.

And then my hair starts falling out.

 

2 thoughts on “Waiting for the shoe to drop”

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