I thought it was time to write another episode of #LetsHaveALook because I need a good venting about the current status of our medical system and compassion – here in my city of Toronto, Ontario, and god only knows what’s going on in the rest of Canada. Based on the shenanigan Covid policies of our current hospital system, I must dance through hoops to get things done regarding my husband’s health. I’ve learned about some appalling policies put in place at the hospital, both while hubby was in hospital, and now in the follow up procedures.
As I’ve mentioned in past posts about my husband’s illness and his recent two-week stay in hospital, I learned about all the strict policies in our hospitals currently in place right now. Since before Christmas our city has been in complete lockdown. Now lockdown has become a word of no significance to me anymore, because, Covid or no Covid, I am locked down at home now caring for my husband 24/7.
I’ve promised to share the documented journey here on my blog in a series of posts. And until I get the complete diagnosis, I won’t be sharing that journey yet. But in the interm, I feel I need to share my thoughts on one incident in particular that sparks a flame under my ass, and that is a severe lack of compassion in a ‘certain’ department. That department would be Oncology. Yes, you read that right. The most scariest department one would have to contend with, and their policy.
Before I get ahead of the cart with the horse here, allow me to elaborate on a few mountains I’ve had to climb thus far just to be able to visit my husband in hospital.
I found out in a cruel way that visiting patients is limited to TWICE a week only, each for only two hours. That’s it! Well, anyone who knows me, knows that isn’t going to happen. And it didn’t.
At first my hub was left in emergency for two days because of a bed shortage, and while in emerge (what we call it in Canada), there were NO visitors allowed. So for those two days I was blessed to have my team of Dr. B and his secretary Lisa to get me through the hurdles and keep me in updated communication. As soon as I signed out after my second visit, a nasty admin at the nurse’s station informed me that my second visit was my last one til next week. I emailed Lisa with my complaint that this cannot stand. I cannot leave a sick weak, scared man alone for days without me. I just can’t! Lisa and Dr. B took my cries for mercy to the higher echelons of policy-making, and gratefully and miraculously I was granted daily visitation rights for two hours daily. I took those two hours to bathe and change my husband’s clothes, because I saw how overwhelming the system had become and the nurses have zero time to give a little compassion, conversation or anything else but the basics – meds and bloodwork. Yes, the hospital that I’ve always touted as one of the best of care, the nurses have spread themselves much too thin at this point.
I walked those corridors daily and saw so many seniors alone in their rooms, no visitors, no comforting attention, and it broke my heart because I know I couldn’t live that out with my husband who is reliant on me. Dr. B. promised he’d call me daily to update on the MANY tests my husband endured. I’d email Lisa nightly to let her know what time my visiting appointment was for the next day, and asked her to let Dr. B know when I’d be there so I wouldn’t miss his consults. When he was in surgery and couldn’t meet up with me, he’d call me at the end of the day. This is what compassion is about.
My cell phone is and was on 24/7. Most nights hubby would call me in a tizzy or disorientation mode of confusion and wake me at any hours of the night because he was scared or needed assistance. I’d console him then hang up and call the nurse’s station and ask to please send in a nurse to help him. Then I’d lie wide awake staring at the ceiling, praying he’d be alright and not be scared.
Now, the above was just a sampling of my world in those two weeks. After one test leading to another and my hub becoming a human pincushion, Dr. B called me mid-last week to report on what he could of the final biopsy results that had partially come in.
It began with my husband’s ascites – fluid buildup daily, requiring weekly paracentesis, blaming his liver disease – cirrhosis of the liver for the build up and Dr. B circumventing hospital policy that states NO BOOKING IN PATIENTS FOR ANYTHING. He informed me I need to get hub into hospital and the only way to do so was to get him to emerge and when they learned how sick he is, he would be admitted.
The hospital stay involved bloodwork taken from hubby’s battered and bruised arms three times daily to check his levels as his meds were evaluated and adjusted, and then an ultra-sound/liverscan to see what’s going on there. Well, ultra sound led to other Xrays, two CT scans, and finally, a biopsy. Each test produced questionable evidence leading to the next. The reason some of the tests weren’t exactly clear was because of the fluid in his belly – despite my poor hub having three drainings while in hospital before some of the procedures, hoping to enable clearer views.
P.S., biopsy results showed a mass on his liver. There were a lot of technical words and more I can’t get into yet, and as Dr. B stated, he could only read what was found so far and apparently, ‘staining’ markers were not complete and he told me he had referred husband’s case now to ONCOLOGY. I do not need to elaborate on how that word and news has affected me. Dr. B assured me oncology doc would get in touch with me soon.
Gratefully, but not really grateful, the secretary of the referred doctor called me the next day. This was when the next act of cruelty was presented to me.
The secretary called to give my husband an appointment to meet and discuss findings – operative word – husband. I questioned her. Certainly, I was coming with him? Nope. I was told, “Unfortunately, during the strict lockdown, doctor will only have one person in his office” and that I COULD WAIT IN THE WAITING ROOM!
I DON’T THINK SO!!!!!!!!!!!!!!!!!!!!!!!!!!
I tried to remain calm and use ‘honey’ instead of the actual venom I felt rising within. I told her that my husband is very ill, weak, scared and old. I am his voice and his caregiver and that he doesn’t absorb information easily. Again, I reiterated, that sending him on his own was NOT going to happen. She said she’d talk to the doc and call me back. She did, and nothing changed. So I sent off an email to Lisa to inform her about this policy and how cruel that is, and I will not do that. Lisa emailed me back that night and agreed with me on the sorrowful lack of compassion, and let me know she’d sent a new referral to a different oncologist.
The next day I get a call from the different doc’s secretary. She noted that she’d seen a prior referral to another doctor, and the note Lisa attached to the the new referral, stating that patient’s wife must accompany. But then she apologized and told me, it doesn’t matter which doctor you have in oncology, the procedures are the same. I lost it.
I told her I’ve spent two weeks visiting my husband and seen many nurses and doctors, one on one through that time, and asked her how on earth oncology can be so uncompassionate? I asked her why the doctor couldn’t take us into a ‘bigger’ room so he wouldn’t catch our cooties. I told her there was no way I am sending my husband into this stranger doctor to be given devastating news on his own. NO WAY! She went back to the original doctor to speak with him about my concerns and called me back. She informed me the doctor said I could wait in the waiting room and he would call my cellphone and let me listen in on speaker phone! JUST NO!
In my tattered and tizzied state, I asked her where the compassion is for the scared people going through nightmares in these predicaments. I also asked her why every other doctor is giving us telehealth calls, phone calls, and some even doing Zoom calls, surely we deserve that option than to scare what’s left of a person’s dignity to death before they even know what they’re in for. Again, she said she’d call me back and speak with the doc.
She called back a few minutes later, letting me know the doctor has agreed to speak with us both at home on speaker phone. Charming not, but I at least won the war.
Now I ask, WHERE THE HELL IS THE COMPASSION? I went through hoops and ladders to get as much as I did. Who else has this fight in them when they are faced with these dreaded circumstances? How many can push like I did? How many succumb to living in fear and uncertainty? Not this girl, as long as I’m able to I will fight for compassionate rights of the elderly. I am truly astounded at the heartlessness of this policy!
The Covid has not only turned all our lives and our personal worlds upside down, but despite the pandemic, people continue to get sick and die in numbers much larger than from the Covid. My stomach turns at the amount of people with dire illness who don’t have a Dr. B or a Lisa, or even an advocate who is tenacious and adamant to fight for rights against stringent policies. And I can’t help but wonder how many doctors themselves who have sick loved ones, wouldn’t fight tooth and nail themselves to ease the fear of their own loved ones in similar predicament.
Humanity? Humility, dignity. I really do believe that hospitals need to be able to make exceptions without having to go to the end’s of earth and sanity to do so. And oncology needs to find their compassion again. Put on a Hazmat suit, get a bigger room to chat in, heck, use the danged food courts that have been shut down, but just stop the madness! The people that have to go to oncology, DON’T WANT TO BE THERE in the first place. So please, bring back compassion!
The road is proving more difficult as the days pass. My time is no longer my own as I wade through this new role. I’ve been my husband’s caregiver for a few years now off and on while he’s been able to do most things on his own, but he can no longer get out of a chair by himself. With the help of our Ministry of Health system, he now has an occupational therapist, we’ll soon be getting in a physiotherapist, and this past week or so he’s been home, I’ve managed to have delivered all the seniorizing, safety items needed to assist him and around our home.
We will have our call next week with the oncologist, and I’ve currently got some phone numbers to call to get some homecare to stay with hub a few hours once or twice a week so I can run errands and get basics – like food. When difficult times come, it’s been interesting to actually see who shows up to the plate. Not many.
I am ever grateful for the friends I have who call, message and email me to check up on me and keep me uplifted, especially in the those moments when I could use a word of encouragement. I wish you all lived closer to me, but I am grateful to have you in my life. It’s not difficult to see how mental health can be eroded when our plates runneth over and there’s nobody else around. And the damned Covid restricted insanity to add to the mix.
It’s so often friends who are more the family than blood relations, as is definitely the case for me. Maybe that’s because we get to choose our friends and not our families.
Note: This posting went live March 9th morning, later that evening, my husband was rushed back to hospital. If you don’t see me around the usual haunts, it’s because I’ve laced back up my warrior boots and doing God’s work again.