Month: February 2022

Total Brain Radiation

Posted in Treatment9 Comments

My apologies for the delay since my last post however as flagged in my first post, unexpected circumstances pop up and slow things down.

Total Brain Radiation

So while we awaited the results of the lung tumour biopsy, I was also referred to a brain oncologist for a consultation.  Sister Sue (RN) had the day off and offered to meet me at Princess Margaret Hospital as a second pair of ears. The consultant’s advice was to start five consecutive days of reasonably low dose radiation in order to halt the growth of the ten or so small tumours in my brain. There were a variety of potential side effects flagged including losing my hair, but they did not seem to outweigh the option of doing nothing.

They offered to let me take my mask home.

With the call made to proceed, they quickly (this was Thursday!) set up the treatments to start on Saturday. First, however, they needed to create a mask moulded to my face to which would keep my head locked in place during the treatment. Luckily they were able to do this while we waited.

Now the bureaucratic part started LOL. I had been transported to TWH to PMH by a transfer ambulance while my sister met me there. I was dropped off in time for my 9:30 am consultation and by the time we completed everything it was just before noon. Reporting back to the transportation coordinator we were told my return was booked for 4:30 pm.  Nobody wants to sit around in a hospital doing nothing for another 4+ hours so my sister noted she was an RN and asked if she could just drive me the 10 MINUTE drive to TWH. Apparently, this was a highly unusual request and took almost 30 minutes to get a doctor’s approval/release…sigh.

Treatments

Not me!

The five treatments were virtually identical: transfer ambulance staff pick you up from TWH, and take you to the treatment room in the second basement level at PMH. (While their vehicles had little suspension, the attendants were all very friendly and attentive!) When the six-inch doors to the treatment room opened, the low lighting, soothing music, palm tree wallpaper, and fake window of a beach scene, were clearly meant to make this a relaxing experience lol.  You are transferred onto the radiation table, had your radiation mask locked to it, and then listened for the chimes to signal the count down as the technician slipped out and the door slid shut – the same Westminister chime used in the Old City Hall clock tower opposite our offices at 401 Bay St LOL

The machine whirs around your head for about ten minutes and then you’re done! And they pack you back up and return you to Toronto Western.

Sacrifice

One afternoon during these treatments, I was reading my book while a member of the housekeeping staff was changing the bedding on my roommate’s bed. When she was done, she asked if I wanted mine changed too and I gladly accepted.  I stood back out of the way as she quickly stripped the sheets and replaced them. The bottom sheet was fitted but the top sheet required what both my mother and the military had taught me were “hospital corners” and when the Filipino-born housekeeper started to make the folds, I chuckled and said out loud “ahhh…..hospital corners.”

She smiled and told me that 16 years ago when she first arrived in Canada, she had no idea what “hospital corners” were because in the Philipines she didn’t have a bed per see – just mats on the floor. She mentioned a son who was just 6 years old when she came to Canada and how it had taken 5 years to bring him over as well.  All before the era of instant text messaging and video calling. I couldn’t help but be moved by her story which she shared without any bitterness – if anything with appreciation.

Holidays at the Hospital

Posted in Diagnosis7 Comments

After testing negative for COVID on Christmas Day, I was moved from my rather luxurious single isolation room to a semi-private room which, at least for the first night was just occupied by me – and by the window no less. And I was very pleased that the steroid I’d been prescribed, had relieved the “brain fog” I’d been suffering from for the previous few days.

The “modified holiday menu” that day included a chocolate yule log dessert which was quite edible.  I know everyone likes to dump on hospital food but for the 13 days I was in hospital I ate everything that was brought on my tray and only once was there mystery meat – which I ate anyway.  Perhaps I’m just not that picky – or perhaps I subscribe to the thinking that if I don’t have to make it myself, it can’t be all bad LOL!

The next day I received a “roommate” who highlighted for me the challenges staff face in caring for patients when their first (or perhaps even second) language is not English. This was actually the case with most of my fellow patients: Chinese (I couldn’t tell if it was Mandarin, Cantonese or another dialect), Greek, Italian, Portuguese. Not surprising of course considering the diversity of the city or that the hospital was barely a five-minute walk to Kensington Market. It was impressive to hear how staff would make every effort to be understood – made even more challenging by their need to wear masks and sometimes face shields. Sometimes this meant contacting an adult son or daughter by phone (visitors being restricted by then) to help with translation. Sometimes if the messaging was less critical (like “Mr X, you need to eat”) it meant using Google Translate from their phones. Sometimes it meant asking a fellow staff member who spoke the patient’s language to assist. And sometimes – usually a conversation with a doctor – staff could book a phone appointment with an official translator (through AT&T I think) who had training in medical terminology. In every case I was privy to (and curtains between beds are definitely not intended to be soundproof LOL) staff made every possible effort while being pleasant and respectful.

After a couple of nights in the semi-private room, I was moved to the 4th floor into a 4-bed ward. My OPS colleagues would probably ask why, when my health plan included semi-private coverage, I would not ask for one.  I knew OMICRON was ramping up and semis were needed for isolation until COVD tests came back. Within a couple more nights, I was moved to another 4-bed ward on the third floor so they could change the fourth into a COVID floor. It just seemed a bit selfish (and probably pointless) to even ask.

My sisters, while not allowed to visit, sent up care packages of clean underwear, socks, books, toiletries, and even some food. During the last move, my phone charger disappeared – and luckily they rushed a replacement to me or things would have got pretty tense! LOL

While patients weren’t required to wear masks in their room, they also weren’t allowed to leave their room unless going to or from an appointment. Either a hospital porter would arrive with a stretcher or a transfer ambulance team with their stretcher.  I was probably no more than 12 steps to the washroom but there was no way of getting any exercise like laps around the floor’s corridors that you might have done pre-COVID. I really wasn’t feeling bad so made sure to get dressed every day and usually sat in a chair beside the bed to read, listen to audiobooks, or watch tv or videos on my phone.

Biopsy

The next steps were to schedule a biopsy so they could confirm the type of cancer. The obvious culprit was lung cancer since that was the largest tumour so for this, I was under the care of a thoracic (i.e. lung) oncologist, Dr. Liu at Princess Margaret, but the procedure itself was done at Toronto Western. After more scans and x-rays, I was given a local anesthetic. The biopsy itself consists of taking numerous “core samples” of the tumour using special needles while watching under some high-resolution cameras to ensure accuracy. I don’t recall the whole procedure taking more than 30-45 minutes and was painless. Because of the holidays and staff shortages due to COVID, it was made clear that the results may take 10-14 days which was longer than usual.

Back in the ward, and after various follow-up x-rays, a small pneumothorax (or collapse of a portion of the lung) was identified. Luckily it was small enough that supplemental oxygen was all that was prescribed. It did mean some further reduction of mobility but after several days, it disappeared and the oxygen was no longer required.

UHN Portal

Any of you familiar with any of the University Health Network Hospitals (Toronto General, Toronto Western, Princess Margaret, and Toronto Rehab) will probably also be familiar with the UHN Portal. It’s a one-stop website that contains all your appointments and all your test results, and can also send you email notifications when new entries are made. So those of us with a smartphone (and English as our first language…) would get the information at the same time as the attending doctor – and often hours before they were actually able to tell you in person lol.  It’s true that some of the information definitely used obscure (at least to a layman) medical terminology but one could generally get the gist of it. For example, it was clear that over several x-rays of my lung post-biopsy, the pneumothorax was shrinking and eventually undetectable.

The “clinic notes” were the most amusing though. They all began:

Mr. Stephens is a pleasant 64-year-old gentleman diagnosed recently with...

I mean I think I was very pleasant with the doctors and was initially flattered. After the third oncologist used the same wording, I started to wonder what description they’d use for a grumpy patient who may or may not have behaved very gentlemanly LOL.

Now we just had to wait for the results of the biopsy and various related blood tests. And arrange a consultation with a neuro (i.e. brain) oncologist.

NEXT UP: Total Brain Radiation

The Talk

Posted in Diagnosis8 Comments

So as requested, I returned to the Emergency Room at Toronto General Hospital the next day. The ER was obviously busier during the day but eventually, I was taken to an internal waiting room designed I suppose for patients that didn’t necessarily require a bed.  There were perhaps a dozen chairs all separated by plexiglass shields and a TV in the corner quietly playing CP24.  Clearly, this was a case when I should have brought my earbuds!

After several hours and a CT scan, an ER doctor called me into the hallway to tell me what they had found. “I’m sorry” he started without looking me in the eye, “besides a tumour in your lung, and at least one in a lymph node, the scans show several smaller lesions in your brain”.  Inside my head I’m thinking, wow that escalated quickly.

He quickly moves on. “I’m referring you to the Lung RAMP program [Lung Cancer Rapid Assessment and Management Program] at Princess Margaret Hospital. If you don’t hear from someone about an appointment within a week, call this number.” He then hands me a pink copy of his mostly illegible notes with a phone number, and that was pretty much that.  As he walked away I couldn’t help but notice how tired he looked.

As I’m trying to process all this, I find my way out of the ER and walk the subway on the opposite corner of the large hospital complex. Even for someone who really doesn’t know much about cancer, the fact that it had spread to various parts of my body, certainly didn’t sound good. On the other hand, I had no idea about treatments or survival rates, and I had no obvious symptoms of anything being awry. I guess I just decided to adopt a neutral mindset until I knew more.

I have three younger sisters, Anne, Lynn, and Sue. Each of them has had or is still dealing with their own cancer experiences with members of their respective families. In addition, Sue is a Registered Nurse working in a hospital and while she doesn’t deal with cancer patients per se, she is certainly helpful when it comes to questions to ask the various doctors. I shared what news I had at this point with each of them. At some point, I also told my 88 and 89-year-old parents who still live in the family home, 160km east of Toronto, built by my great-great-grandfather circa 1869. As I expected, they were all extremely supportive.

I did receive a telephone appointment for the PMH RAMP clinic for the following week. I kept in touch with my sisters too however they were increasingly concerned that what might have been originally attributed to shock was something more serious. I was finding it harder to finish thoughts and sentences (yes more than usual lol) – what is often referred to as “brain fog,” and by December 24th they decided an “intervention” was required. Sue let me know she was coming to pick me (and the dogs) up and dropping me at the Toronto Western Hospital (also part of the University Hospital Network or UHN) and taking the dogs back to her place. I didn’t argue as I knew things weren’t right and did my best to pull together all the things she would need for the dogs.

I was able to check myself into the ER, and after the usual wait was assigned a cubicle and all the checks from nurses and doctors. More scans revealed edema around the brain masses that were the most likely cause of the brain fog and so prescribed a strong steroid to control that problem. By this time my other sister Anne had somehow managed to talk her way into the ER to hang out with me and was relieved when they decided to admit me in the early morning hours of Christmas Day. I vaguely recall being moved to a single room with an anteroom, a nurse wearing all the PPE you could wear taking a COVID 19 swab, then drifting off to sleep.