Last night was a disappointment. We had a strategy set up for the progress of my healing from this cancer that they say I have.
There are many many things that I need now. This is a bit of a repeat but I still am waiting for them
a walker
Physical Therapy session
occupational therapy
some spiritual counseling,
and palliative therapy for pain control.
The way the system works here in Toronto is that my primary physician, Dr. Saleema said I could not get any of these until my Oncologist had decided on a formal diagnosis of cancer from reviewing my Biopsy.
Well they did the biopsy on lymph nodes near my urethra and they got that diagnosis back.
“Almost Surely Metastisising Urethral Cancer.” That’s what they said.’
This diagnosis didn’t frighten me or freak me out. I’ve been pretty stoic through all of this. What am I going to do? Go crazy over the inevitable? We all die someday. Maybe this is my time and maybe it isn’t.
With this “formal” diagnosis I reached out to Dr Saleema and she made arrangements for all of these different things especially a painkiller stronger and more effective than Tylenol.
The next thing on my list was to move up my scheduled Oncology visit from September 3rd to one during the week of October 26. This would be after my lung Biopsy, which is scheduled for August 19.
I want whatever treatment they are going to give me sooner rather than later.
“I want it and I want it now!”
We still need to get important information, for a definitive diagnosis.
This entire process began with a CAT scan of my lungs that showed a large mass.
I’m a bit impatient here. It was almost a month ago. C’mon folks, (Cancer Hospital), let’s get moving here. August 19 — September 3? That’s too long to wait. Get me an Oncology appointment the week of October 26th.
I want to get the treatment started as quickly as possible. In my mind, if I have cancer it is going to spread unless we get moving. Even a week can be a matter of life and death for me.
The next step is getting rid of that leg pain that had been tormenting me endlessly.
Dr. Saleema recommended a stronger drug. I’ve been living on Tylenol.
I took the new drug — Hydromorphone, an Opioid. It was no better than Tylenol. I did sleep better, but I still awoke 5–6 times with that leg pain. I took the new drug with great expectations. I woke up groggy. I hoped I would have a great night’s sleep. That didn’t happen.
I woke up at the same time as I always did with tremendous leg pain. The only difference was that I could fall back asleep easily again whereas in the past with Tylenol I would end up staying up for a few hours. The challenge here was even though I ended up with 7 hours of sleep I was intensely groggy this morning I was in no mood to write anything, which is crazy. I need to write.
I think I’m going to put this new drug on hold, and go back to Tylenol. On Monday I’ll contact the palliative therapy department for new strategies.
Yesterday was a little strange.
I don’t eat much and have little hunger. Suddenly I became very hungry and ate throughout the day. In the evening I had a piece of fish, yet I became nauseous within about 10 or 20 minutes of eating it.
Peanut butter mixed with blueberries goes down smooth.
A hot carb drink is great as well. I can’t use chocolate because of my history of kidney issues.
It seems that I need to keep all of my portions small.
I’m getting tremendous love from everybody and if love heals cancer I am very blessed.
I’m in a very positive psychological state. Pretty much normal.
It’s just the leg pain and the itching that reminds me that I have some serious health challenges.
Someone said, maybe the itching and leg pain may have nothing to do with what’s going on. I hadn’t thought about that. The doctors don’t seem to have a clue as to where these symptoms are coming from.
For now, I’m eating simple, and small portions. Avoiding wheat and sugar, and learning to master poly-phasic sleep because of the leg pain.
Poly-phasic Sleep
According to Kleandro Koka a B.Sc Mechanical Engineer
Polyphasic sleep is the practice of sleeping multiple times in 24 hours — usually more than two, in contrast to biphasic (twice per day) or monophasic sleep (once per day). The term was first used in the early 20th century by psychologist J. S. Szymanski, who observed daily fluctuations in activity patterns. It does not imply any particular sleep schedule.
While many claim that polyphasic sleep was widely used by some polymaths and prominent people such as Leonardo da Vinci, Napoleon, and Nikola Tesla, few reliable sources support that view
If you want to explore or experience it yourself you can research the Uberman sleep plan. Here is a website
https://www.polyphasicsociety.com/polyphasic-sleep/overviews/uberman-2/
It has helped me a lot when I wake up every four hours with leg pain when my Tylenol wears off.
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Hi,
I hope you’re doing well. I was recently diagnosed with Stage 4 Cancer and I need your help.
I started a fundraiser on GoFundMe and it would mean so much if you could take a look at it. Any help, like donating or sharing, gets me closer to my goal. Thank you in advance for your kindness and support.
Lewis
Lewis, it doesn't appear the doctors in Canada have a better hold on cancer than the ones down here in the States. Waiting forever for appointments, the staff often with no sense of urgency. At least your oncologist is open to pain meds. When mine was asked his answer was he's not going to federal prison for me or anyone else. So much for standing up for your patients.
Just know that you are not alone friend and you are in our prayers. We wish you a lasting and rapid recovery. One thing I would advise is getting your records at least every month. We've found so many lies and outright lies of omission that it's really unbelievable. Review your records on a regular basis and advocate for yourself because no one else is.
It’s clear that you are facing these obstacles with a level of grace and determination that speaks volumes about your character. The way you've detailed the gaps in the healthcare system while maintaining a focus on what needs to be done next is both a call to action and a reminder of the human side of medical care.
Your exploration of alternative sleep strategies and dietary adjustments also shows a proactive approach to managing your well-being. Wishing you strength and swift access to the care you need, Lewis.👍