On Wednesday, I will be exactly halfway through the six cycles of the chemotherapy planned for me. I see my Oncologist tomorrow for a pre-quad cycle catch-up. Overall, I’ve been feeling a bit tired over the last few days. It’s probably a combination of: sleeplessness (I’ve been struggling to get to sleep and waking up early, which is not ideal for sleeping!); the chemo side effects kicking in; further steroid reduction last Wednesday (as they give one a boost in energy, I surmise that, as one reduces the dose, the boost is reduced too); increased mobility, which means more short walks in an average week; and, of course, general tiredness and fatigue caused by having a brain tumour, brain surgery (twice), radiotherapy and chemotherapy!*
However, I am feeling a lot less tired than I did at this stage when I rode the bicycle. Then, I was completely exhausted such that I was often asleep by 8pm. Save for an hour or so at 8am for my morning tablet-breakfast-tablets regime, I then usually slept until lunchtime. That was not just sleeplessness but severe fatigue.
A Donkey’s Tale (Part Three)
I thought that, with the end of the first half of chemotherapy upon us, it would be a good time for a further instalment of my quest to find the tail of insight to pin on to the donkey of success (or otherwise) of the treatment that I’ve had to date. I will give you my meandering thoughts on the subject but come to no conclusions. (For those of you who have no idea what I’m talking about, see A Donkey’s Tale (Part Two).)
My biggest issues throughout Squattergate have been, and continue to be, seizures, lack of mobility and fatigue/tiredness (see above for an update on the latter). My average seizure count has recently been low in terms of frequency (one or two a week) and severity. I woke last night at 2am and had a short Snoozie Doozie but that was nearly a week since the previous seizures. As with my previous seizures, it was probably triggered by tiredness but this morning I feel no noticeable effect on my movement.
My mobility hasn’t been this good (relatively) since the beginning of October. I think that my increased mobility has helped me to walk a bit more “normally” as long as I walk in a straight line! I still have no sideways movement in my foot or ankle: I therefore find chicanes tricky to negotiate and have the turning circle of Kevin Nolan! My increased mobility, and decreased tiredness, means that I can get around the house better. I have even ventured into the kitchen once or twice and made some cups of tea. That’s more domesticity than I’ve shown since this drama began eight months ago today.
My stamina is dramatically lower now than it was back in October. The hundreds of seizures, surgery, radiotherapy and chemotherapy I’ve had since then have meant that I’ve been physically inactive for most of the last eight months. My inactivity has also caused muscle wastage, particularly in my calves. The muscle wastage is also a side effect of the steroids. Hopefully, for so long as my steroid dose remains low, my seizures stay at the current run-rate and my mobility remains the same, I can slowly build up my strength and stamina too (reach for the stars and all!).
The $400,000,000 Question
What can we glean (if anything) about the state of the Squatter based on the current state of play?
Seize the Mobility
My lack of mobility is ultimately caused by the tumour directly and indirectly (see A Donkey’s Tale (Part Two)). There is a clear correlation between my seizures and mobility: the seizures have, on many occasions, left me with no movement in my leg, which returned gradually to the new base line of mobility. Until recently, my mobility wasn’t even getting back to the base line before another seizure had struck. My increased mobility is therefore almost certainly linked to the lower number of Seiz-feld episodes of recent times. Anti-seizure medication has, I’m sure, been at least partly responsible for the reduced seizure count.
Some (hopefully a fair whack) of the Squatter was evicted through surgery on 31 October. Immediately after the operation, seizure activity increased substantially with the smaller-Squatter (and mobility decreased accordingly). Long before I started seizing, a slight loss of movement in my right foot was, in retrospect, an early symptom of the tumour. Because of the seizures, it’s therefore not a simple case that the reduction in the size of the tumour results in increased mobility.
On the other hand, any decreasing mobility even with a reduced seizure count, which is not the case right now, might indicate that the tumour has grown. As seizure activity is ultimately caused by the tumour, too, it might or might not be the case that my reduced seizure count and increased mobility indicates not just the success of the anti-seizure medication but a reduction in the Squatter’s movements/size.
Just a Swell
If the Squatter has grown or become more aggressive, I would expect the swelling in my brain to have increased. The steroids were prescribed to reduce the swelling. As mentioned, the dose I’m taking has come down significantly over the last few months. If the Squatter size and the amount of swelling have increased then I haven’t noticed any exacerbation of existing symptoms.
Let the Memory Live Again
In a recent post, I attributed my slight memory issues to being a side effect of the chemo. Instead of being caused by the chemo, it could very well be due to further growth of the tumour itself and/or any further swelling. That said, memory loss is not a symptom I have previously experienced (even with the benefit of hindsight) so it would be a new symptom of the tumour/swelling if that’s the case. Of course, hindsight requires memory so who am I to conclude anything on this point?!
If you remember, my brain collapsed into the cavity created by the removal of part of the Squatter during surgery, which Mr H said was a positive sign that he’d removed enough to create the cavity. The part of my brain where the Illegal Immigrant is squatting controls movement. That is why it was movement in my right leg and arm that was regularly tested during my Awake Craniotomy to check that Mr H wasn’t scooping out too close to the bone.
It could be that the tumour is spreading/moving into a different part of my brain than it was before without worsening my mobility. I don’t know where the Memory Palace is in my brain or maybe there are/were more than one. Memory loss might be caused by both the tumour and part of my brain still settling into their new lodgings in my skull.
You Do Know What You’ve Not Got When It’s Never Arrived**
Side effects of the treatments (hair loss, nausea, headaches, sickness etc) are apparently not linked to the efficacy of the radiotherapy or chemotherapy. The side effects I have or haven’t experienced during radio and chemo are relevant only in terms of whether they are so severe that my body can’t cope with continuing treatment.
Headaches are therefore not a factor for donkey tail purposes as I’ve atypically (for a brain tumour host) never had any headaches during my Tumour Time to date. They are mentioned as possible side effects of surgery, radio and chemo. It can obviously be difficult to determine if the headaches are caused by the treatment or the tumour itself as most people in the BT club have experienced some headaches before diagnosis.
I wanted to mention headaches in particular as the ongoing absence of headaches (the negative negative, if you like) is a real and huge positive to me. I am grateful beyond words for every single day that I don’t have the literal head-banging pain that my brother suffered from the very beginning of his brain tumour journey. He was on morphine hours after he was diagnosed as the headaches were so painful.
Place Your Bets Now, Please
All in all, some of the above might signal a glimmer of hope of success that the surgery, radio and chemo combo is slowing down, suspending or even reducing the size and progress of the Squatter. As shown on the Brainstorm chart in Part Two, I think that a lot of the factors are so interconnected and in play at different times that it’s almost impossible to interpret them individually.
Feel free to give it a whirl at home and guess whether the Squatter has grown, stayed the same or even shrunk since my surgery. My conclusion after all the donkey musings is not different from when I started: only time (and a scan) will tell.
(NB This is NOT a competition or even an invitation to share your thoughts with me. I know my humour is, at times, not completely on the Jedi side so, for the avoidance of doubt, I ask you NOT to send me guesses, nor the reasons that lead you to believe that you have the correct tail and know where to put it!)
*I’ve recently joined the Brain Tumour Charity’s closed group on Facebook for people with brain tumours and have already seen a lot of posts about tiredness, fatigue and reduced stamina continuing for many months and years after surgery. I felt both reassured that it isn’t just me and a bit demoralised that it might last that long!
**Catchier than the original lyrics don’t you think?