It is (hopefully) Chemo Eve today. I say hopefully because I have been a bit worried over the last few days that my cold might delay the start of chemo if it has weakened my immune system. What I thought was a common cold might well have turned into a version of the common viral infection that seems to go round and round: we are captive on the carousel of slime.
After an appointment with my Oncologist Consultant this afternoon, I had blood taken to check for all sorts of things that could affect my immune system and whether or not the chemo can start tomorrow as planned. I was told that I wouldn’t hear from the hospital if my results are fine and I haven’t heard any bad news. Unless I hear in the morning to the contrary, I’ll be back at the Freeman at 9.30am tomorrow to pick up the tablets and associated anti-sickness and preventative anti-biotics drugs, together with a list of banned substances while I’m undergoing the chemotherapy.
Incidentally, Dr M said that I looked well. I fear that I must have looked really rubbish the last time she saw me four weeks ago! Although I actually feel a lot better today than I have done in a while, probably primarily because I’ve had some good nights’ sleep recently, and possibly also because the fatigue caused by the radiotherapy has faded with time. Whatever the reason, it is a brief but welcome break before I expect to be clobbered by the chemo.
Chemo Rhyming Slang
The specific chemotherapy drug that I will be taking is called Temozolomide, shortened by most staff at the Freeman to Temo. Temo the chemo: it’s got a certain ring to it, and a very familiar ring at that. Temo is currently the “standard” treatment for high grade brain tumours. My brother took part in the clinical trial 11 years ago that showed that it was more effective than the previous “standard”. I am literally following in his footsteps by taking the drug.
Jagged Little Pill[s?]
The Ironic thing about saying that All I Really Want is to start chemo tomorrow is that, like many things about Squattergate, it is the exact opposite of what one would normally hope for. I wouldn’t have thought before all of this topsy-turvy Head over Feet tumour malarkey that I would have said on 1 September that “I wish I’d had a stroke” (not that a stroke would necessarily have been any better but there you go). Similarly, it wasn’t on my radar until then that I would be lying here wishing that tomorrow I will Wake Up and be able to go and pick up some poison and wilfully take it, knowing that it has a high chance of making me feel a bit rubbish!
You Oughta Know that when I found out that my chemo would be the same as my brother’s, I felt disappointed that brain tumour treatment has not advanced over the last decade. That said, Temo initially reduced the remainder of Graeme’s tumour by about a third in the first three months of his treatment so I’m hoping to follow in his footsteps in that regard as that would be Perfect!
Every tumour is different, of course, even when they are categorised as the same type and grade. The exact location has a big say in how the tumour manifests itself in symptoms and progression. Graeme’s tumour was a grade four GBM, while I have a grade three anaplastic astrocytoma. A nurse at the RVI mentioned when I said that my brother had died of a GBM (which was before we found out the results of my biopsy) that she had a GBM patient who was still alive after five years.
In short, there’s a reason that the life expectancy is a bell-curve and not a single line or even a single dot. The Brain Doctors are not able to say with any degree of certainty how successful the treatment will be nor how long we can each expect to live. As my pitiful attempts to pin the tail on the donkey have shown, I am certainly Not the (Brain) Doctor!
I feel a bit odd and nervous that this is the last of the three tumour management tools (surgery, radio, now chemo) that are available to me. Mostly, though, I feel much as I did before the Awake surgery and radiotherapy: Let’s Get it Started.
I have averaged one seizure a day over the last couple of weeks, broadly but not exclusively correlating with the amount of “activity” I’ve managed during the day. The seizures have continued on a general trajectory of being less dramatic, less uncomfortable, shorter in duration and with a quicker recovery time.
I saw my Consultant Neurologist, Mr A, yesterday. He said he was pleased that there was a change of intensity in the seizures. He said he wouldn’t increase the anti-seizure medication as there is a high chance that, with the heavy doses of the various anti-seizure medications I’m already taking, the side effects will outweigh the benefits. Dr A explained that an increased dose might reduce the frequency by, on average, a day or so, but it’s likely that the side effects will be much more debilitating than the seizure I would otherwise have had might have been. In other words, the seizures are here to stay. One can only hope that the intensity of the seizures and their effects continue on a downward curve for as long as possible.
I am obviously restricted by my permanently reduced mobility. I am also debilitated by: the prospect of triggering the seizures (that is, my fear of overdoing it and bringing on a seizure); the seizures themselves (when I’m sitting up/playing with the kids, I have to stop what I’m doing and manage the seizure); and, the effects of the seizures (the tiredness and temporary reduced mobility that comes immediately after a seizure).
Sleep Glorious Sleep
The steroid reduction (and sleep reintroduction) programme is going well so far. I’ve had a good few nights’ sleep and feel all the better for it. Both Dr A and Dr M agree that I should continue to reduce the Steroids dose as I am coping well with the weaning.
To finish on a high note, I have taken Jennifer upstairs to bed (along with Graham accompanying as a carer for me!) twice in the last four days, which is the first time since October that I’ve managed it at all. I’ve periodically read her bedtime stories downstairs since I was discharged from hospital in mid-November and then others have taken her upstairs but it has been so special for me to tuck her in.
The other day, I took her upstairs and read two stories to her. Towards the end of the second story, I felt a familiar seizin’ feelin’ coming on. It wasn’t a long or dramatic episode and Jennifer knows about and has seen a couple of times my “dancing” foot and leg. G and J sang throughout my seizure, as I did for parts of it. She pointed out when my foot was still dancing and then when she noticed that it had stopped.
Tonight, as I’ve had a long day, when she chose me to take her to bed, I thought I might be too tired and I said that I might not be able to make it upstairs so offered her a story and song downstairs. My little lady negotiated that I could sing a song upstairs but agreed that, as I was too tired, I wouldn’t need to read stories. I managed to accompany her upstairs (actually, she held my hand and went backwards up the stairs to help me up!) and into bed without me making a song and dancing foot out of it! A big almighty win for us, not least because the fact that I’d had a seizure mid-bedtime routine the other night hadn’t put her off asking me again.