These are the facts* of my radiotherapy treatment, which ended just after 2pm today:
- 28/28 radio sessions completed on the days scheduled (100% attendance record, with no tardiness on my part thanks to Contingency Cole).
- I had zero seizures during the sessions (100% no-seizure record).
- 24/28 sessions (85.7%) were carried out in Room 6 (as scheduled), with 3/28 (10.7%) in Room 4 and 1/28 (3.6%) in Room 7.
- Each session comprised of seven fractions or “zaps” (196 zaps overall).
- The seven zaps came from the Spaceship that moved into specified positions to aim its fire at the Squatter from different angles. It started somewhere to my left and moved into a further four positions, ending directly overhead.**
- According to my discharge letter, the dose of radiotherapy was “56.00 Gy” and the modality was “15 MV Phot”.
- I brought The Mask home!
- During each session, the seven fractions were timed by me as follows:
Zappy The First: 12 seconds
Zappy The Second: 5 seconds
Zappy The Third: 2 seconds
Zappy The Fourth: 6 seconds
Zappy The Fifth: 2 seconds
Zappy The Sixth: 10 seconds
Zappy The Seventh: 14 seconds
Contradictions in Convictions
I am in no small amount relieved, thankful and joyful to have made it through the whole course of radiotherapy. As stated previously, I feared that my ongoing seizures would delay, suspend and/or prevent all or some of the sessions. It could also have caused me some pain/distress if I’d had a seizure whilst my head couldn’t move. This didn’t happen, for which I’m grateful.
I am pleased to be able to change the focus of each weekday from preserving energy and reducing the risk of seizures specifically for the trip to the hospital for Radio sessions to…preserving energy and reducing the risk of seizures generally!
I’m also pleased overall with the side effects of the treatment, which have been less demanding than I had feared. Just like the first half of my radiotherapy (see The Midterms), the second half of my radiotherapy brought me no headaches, skin irritation, sickness (other than suspected food poisoning) or exhaustion. It also saw a further reduction (on average) in the frequency, severity and recovery time on the seizure front.
I am not aware of suffering from any memory loss or lack of concentration that can be a side effect. Of course, I could have memory loss but it could be such that I can’t remember what I can’t remember (the unknown unknowns, if you like) so I’m happily oblivious to any such loss!
I have lost an estimated 75-80% of my hair, which is much more than I expected. I contracted the viral infection that is knocking even the most hardy of souls, including almost all of those immediately around me. I actually recovered quicker than some people I know but, ever the drama Queen, in my event ended up spending half a day in A&E. I also used the ambulance service for a short-lived but violent sickness “thing” that was suspected food poisoning.
Perhaps the biggest thing that is making me feel that the end of my radiotherapy road is not entirely positive is the uncertainty of whether it’s been effective. Dr M confirmed on Monday that the plan is to move onto chemotherapy without a scan (see below) so there’s no way to be sure if the zaps have stopped the Squatter in its tracks.
As Dr M’s plan has always been to move on to chemo after the radiotherapy, a scan wouldn’t affect my treatment plan. Further, as I previously mentioned, the swelling caused by the radiotherapy apparently makes it difficult to see “what’s what” from a scan so it almost certainly wouldn’t give us any meaningful results.
Nevertheless, as I’ve approached the final stretch, it has increased the intensity of my internal speculation about the success (or otherwise) of the treatment. It seems the uncertainty will continue for a while yet…
On balance, I feel mixed emotions about the end of this step of Squattergate resulting in a neutral position. I weigh up the positives and the negatives and come out feeling like it’s good to have a sense of balance in the Force, especially when a sense of balance from a mobility perspective is beyond me without aids and aides!
This is the bell next to the radiotherapy reception, with the poem next to it:
My “treatment” is not over as I’ve got chemotherapy to come, so I was in two minds about whether to ring the bell or not. Graham and my Mam had encouraged me to ring it; and, one of my regular radiographers and Dr M had each mentioned that it would be time for bell-ringing today. When I came out of the radio room, I felt sheer relief at getting through it without any major imcidents. I then saw my parents and Graham, who greeted me and looked so happy and emotional that, after hugs with them, I instantly knew that it was right to mark the occasion with a ding dong so I went back to ring the bell:
I was tempted to wear The Mask for the bell-ringing, tying in the Hannibal theme once more. However, I thought that potentially freaking out a room full of people in a Cancer Centre awaiting either radiotherapy, chemotherapy or clinic appointments might not be the way to go, so I restrained myself.
Dr M(oratorium) and Ms M(oving onwards)
I saw my Consultant Oncologist, Dr M, in clinic on Monday:
- She told me that the Specialist Nurses are pleased with how I’ve coped physically with the radiotherapy.
- She went through the consent form for the chemotherapy, which will consist of a four week cycle comprising of one daily dose of tablets for five days, followed by 23 chemo-free days.
- I am scheduled to undertake six cycles and I’ll have blood tests on a monthly basis and meet with Dr M in clinic to assess how I’m doing and check that I’m ready to press on with the next cycle.
- I have been granted four weeks’ Parole from treatment (I’m not sure if it’s for good behaviour), have an appointment with Dr M on 21 February with the first day of the first cycle of chemotherapy due to start the following day, 22 February.
- The side effects of the tablets I’ll be taking are mostly “standard” for chemo, including sickness and potential susceptibility to infections. She did, however, mention a “very rare” infection, which I don’t for one minute take for granted that I will avoid.***
- Dr M agreed that no one was sure exactly why I was experiencing ongoing seizure-related activities and that I had “intrigued many of [them]”! (“Them” being members of the multi-disciplinary Neuro team that meets every Friday – see *** again.)
- Dr M suggested that I should reduce my daily dose of steroids from 8mg to 6mg from a week today for two weeks, followed by a further reduction to 4mg for two weeks. She encouraged me to see how I feel with the change in dose. If I feel worse, I should go back up to the last dose that I was on before any negative effects kicked in. Nothing like self-medicating with Steroids…. I’m hoping that the reduced dose in Steroids will be smooth and will bring back some much-needed relief from the Steroids’ Mandatory Wide Awake Drill every morning at wildly unpredictable times between 2am and 6am!
The Only Way Is Down?
I need, from an OCD perspective, to get something off my chest that has bugged me every single time that I’ve had an appointment at the Freeman (33 to date, I believe). The mould room, scan, radiotherapy and clinic appointments are all in the same area on the ground floor. There is literally no way to go further down other than with the use of Yellow Plant. Yet, for some reason, when returning to the elevator to go UP a floor to the exit (the only way one can travel once in the lift), the only button to press to call said lift is infuriatingly upside down:
There, I feel better already!
* I mean this in the dictionary definition sense of the word rather than the oxymoronic term “alternative facts” (aka fiction, outright lies, untruths and falsehoods, among many other synonyms) promoted by the thoroughly dishonest, hypocritical, despicable and shameless Trump, Spicer, Conway and associated deplorables. For the factual definition of “fact”, see Merriam-Webster, The Cambridge English Dictionary and Dictionary.com.
**I’m pleased that the people and/or software involved in the Trident test last year appear to have had nothing to do with the Spaceship as who knows what might have happened with misdirected zaps.
***Rare/atypical events are apparently my speciality, and not in a good way! Rarities that spring immediately to mind are: the chances of a sibling who has/had a brain tumour having a brain tumour; the migraines I experienced pre-Squattergate, if caused by the tumour, would not be expected to be stopped in their tracks with regular migraine medication; my lack of headaches throughout is unusual; the purple glove reaction to an IV of phenytoin has never before been seen by any of the many medical staff I’ve mentioned it to; the fact that I don’t lose consciousness during seizures; and, the ongoing seizures despite a cocktail of drugs to control them.
Funnily enough, I had an “on this day” notification on Facebook yesterday about a rare event a few years ago. A local anaesthetic injected into my gum temporarily paralysed my eyelid. To me, it felt like my eye was constantly blinking, which wasn’t the case, and watering, which was the case. It freaked out the dentist as it had never happened to any of her patients and she sought assistance from one of her dentist colleagues. He hadn’t seen it either and asked me to wait for an hour or so after movement returned.
I consented to continuing with the treatment I was undergoing as I figured if I was going to be there a while anyway, I might as well get the filling I was there for! My dentist said she would write up my frozen eyelid as part of an ongoing log of experiences for what sounded like a record of continuing professional development. She rang me first thing the next morning to check that I was ok. I like to think it was due to good patient care rather than a fear of me being a lawyer and suing her for something or other. So, there you go, my medical anomalies are not just limited to brain tumours!