Horatio update: Post radiation results in

[FallenPixels]

Sharie Mulkewich
Regional Director, Cancer Society
[email protected]
[email protected]

Ralph Meyer
President, Juravinski Hospital and Cancer Centre, Hamilton Health Sciences
Regional Vice President, Cancer Care Ontario
905-387-9711 x63001
[email protected]
Executive Assistant: Lynn Foy
E: [email protected]

Dave Murphy
President, CUPE Local 7800
905-518-5218
[email protected]

Politicians:

Dr Eric Hoskins
Minister of Health
[email protected]

Parliamentary Assistants
Health: John Fraser
[email protected]
Long Term Care: Indira Naidoo-Harris (also a local politician - Halton)
[email protected]


Councillors: The hospital borders two Hamilton Council wards
Both sit on the local Board of Health

Ward 6: Tom Jackson
[email protected]

Ward 7: Scott Duvall
[email protected]

Member of Parliament
Chris Charlton, MP
[email protected]

Local MPPs
Andrea Horwath, MPP
[email protected]

Monique Taylor, MPP
[email protected]

[TaraF]

Thank you so much Fallen for all of the contact information, I've contacted them all. I received a response back from Dave Murphy and he asked if he could pass on my email and contact information to a reporter he speaks with to contact me, so I said sure. I obviously feel very passionate about this having just utilized their services for my own cancer treatment. It would be incredibly shameful for them to close it. For anyone interested in my email it is below, it has a tiny bit of TMI in it, but it's also the reality of cancer treatment.

I learned recently of the impending closure of The Lakeview Lodge connected to Juravinski Cancer Centre in Hamilton,On, in March of 2015. As a cancer patient that just completed a 6 week stay there during my treatment for brain cancer, I am not only shocked, but disheartened.

My journey began in 2010 when I had a craniotomy to remove a brain tumour, and it landed me in chemotherapy and radiation at Juravinski Cancer Centre on August 20, 2014 for recurrance. Being that I was from out of town, and finding transportation was going to be an issue for my 6 weeks of treatment, I was so happy to learn of Lakeview Lodge. I was even more excited to know that, for a small fee, my husband could stay with me for the duration of my treatment.

I went into the Lodge healthy (as healthy as a cancer patient can be), but the effects of the chemo/radiation combination and an incompatible chemotherapy drug soon took its toll on me. I was on the oral chemotherapy drug Temodal, and I found myself so incredibly sick I couldn't keep a thing in me. Not food, not water, not even the anti-nauseants meant to prevent me from becoming nautious. I was so ill it was to the point that all I was bringing up was pure chemotherapy. It wasn't pleasant, and it burned all the way up and out. This was all new to me, and even though I had my husband with me, it was all new to him as well. We had no idea what was going on and we were scared. My husband went downstairs to ask the day nurse for some new garbage bags as I was vomiting in the garbage can (I couldn't make it to the bathroom), and the cleaning staff came up with their gloves on to remove the waste. The toxic waste. Not to mention the nurse came up to check on me. She wanted to know how I was doing.

As a few days passed, the same scenarios kept unfolding and the day and afternoon nurses took it upon themselves to contact all of my Drs as I needed them to, they cancelled my radiation appointments for me as I obviously could not be bolted to a table with a mesh mask on my face while in full vomit mode, and they would come to my room to check on me when I didn't emerge for my meals that were waiting for me in the commons room. The cleaning staff continued to dispose of my temodol-laced vomit in proper procedure, with gloves on. I emphasize this now for a reason that I will come back to later.

I woke up one morning after all of this heaving feeling rather dry after I stopped the temodol, upon awaiting a meeting with the chemo Dr, something was really off. I had a few "weird" symptoms and went downstairs and spoke to the day nurse. She thought dehydration. She immediately called a porter to take me to patient assessment who shoved me to my Oncologist who inturn sent me to the ER at Juravinski Hospital. Yep. Dehydration. I've never felt like that before. Chemotherapy + Radiation + Constant Vomiting = Bad. Really bad. The weird thing is I was drinking a litre or more of water a day. I guess with the radiation and the chemo it wasn't enough. But these aren't things people think of, especially when dealing with cancer treatment.

Throughout the course of my treatment I ended up not only running into dehydration, but also the unpleasant abdominal effects that come with treatment. Ahhhh yes. Constipation. Only, was it constipation? Or was it my gut being torn up from the chemo and the drugs I was on? Or was it both? Who knows. But I was in patient assessment so many times I can't count. Seriously. Check my chart. I dare you. If I wasn't staying at the Lodge and had to take a cab every time I had an issue because I was staying at a hotel off site, I wouldn't bother bringing any complaints to the Drs. One could argue that I could mention them the next day during my next treatment, this is true, but unless it's a pressing issue at that exact second, for someone like myself who has brain cancer and can't remember where she's going when she enters a building half the time, that's kind of a moot point. Oh, and reminder notes tend to not work either, I forget where I place them. And yes, there is always 911 when you think it's an emergency, but those dealing with illness don't want to live like hypochondriacs and "jump the gun" for every little thing. It turned out my dehydration wasn't a little thing, and thankfully I had one of the nurses on site at the Lodge to nudge me in the direction of onsite patient assessment or things could have been worse. I was severely dehydrated by the time I entered the ER.


So, aside from the above issues I personally ran into and found benefits from being onsite at Lakeview Lodge, here are a few issues I could see cancer patients running into. Now, I know when taking the chemotherapy pill you're supposed to flush the toilet twice with the lid down and, well, if you vomit up pure chemotherapy you are supposed to dispose of that properly as well. What happens when a patient becomes violently ill at the hotel and is on an oral chemo drug and their vomit isn't disposed of properly because they aren't making it to the bathroom (such as I didn't) and are vomiting into the trash can? What if they call housekeeping and they don't dispose of it correctly or the patient doesn't make housekeeping aware of the fact they are actively on chemotherapy? And since we know that common sense isn't all that common nowadays, what if the patient isn't using a garbage bag in said garbage can and just rinsing the can out when done and says nothing of this to the hotel cleaning staff? This obviously puts future guests at risk. I know from my extensive conversations with the cleaning staff at Lakeview Lodge, the meticulous way in which they wash the rooms down after each visitor has left, ensuring that there would be no contamination for the next cancer patient that comes in. How will hotels be able to guarantee the same for future patients? Cancer patients, especially those going through treatment, have suppressed immune systems, though I really shouldn't have to tell you.


And even if the Lodge is paying for their stay for the duration of their treatment, who will be covering the cost of their cab fare to Juravinski for their daily treatments? Or for any "pop up" appointments that happened along the way? That was another huge benefit to staying at the Lodge, the constant changing of my appointment schedule, I can't tell you how many times I had an "update" on my schedule of another appointment throughout the days. Well it was nice to be able to go upstairs to my room, rest after radiation and come down to wherever I needed to be whenever I was required to later that morning or afternoon. Will patients be required to pay for the cab fare for all of the back and forth between the hotel and cancer centre or will they just be expected to pull up a chair between treatments in the cancer centre and snooze?

When staying at the Lodge I was able to be on the food plan for a mere $18/day. I ask you, where at a hotel will anyone be able to eat for that price? That's if your hotel of choice even has an eating establishment on premise or in the area, which brings me to a whole other point; one of the last things those going through treatment want to to do is eat, or move around much, but getting out of bed and going down to the commons lounge to fellowship with the other patients, and the nurses, while having my meals was something that I actually looked forward to. Being in a hotel would just isolate a patient further, (especially if they are staying without a family member or friend) and it may end up being hard for them to obtain a meal.

Again, heading into "the cancer game" a person may be feeling "okay," but by the time the effects of radiation and chemotherapy hit them the last thing they may want to do is to head outside to forage for food. Staying at the Lodge, it was comforting to know you could go downstairs and your meal was on the table at a certain time, and knowing that if you were in treatment or sick in bed from treatment, or napping from treatment through your meal, it meant the nurses would be kind enough to place your meal in the fridge for you for when you were ready to partake of it.

I think it's absolutely horrible to put more stress on cancer patients and potentially place them in a
more dangerous situation for their health all for you to save $100,000 a year. Surely, if money is the issue, there has got to be a better solution.

Even if that solution is as simple as keeping the $45 nightly fee for a patient's guest that wishes to stay with the patient at the Lodge, but giving the patients a choice: We will continue to cover your lodging. IF you stay at our hotel of choice, or, you can pay a reduced fee of $20/night to stay at Lakeview Lodge.

While I personally feel it would be a shame to have to pay to stay at the Lodge if I needed treatment in the future, I would prefer to pay a reduced rate to stay at Lakeview Lodge where everything is accessible to me as a patient, and where the staff are familiar with the proper cleaning procedures to keep me safe, and there is a nurse that could assist me immediately in the middle of the night should something happen due to my cancer treatment, than to be staying at some hotel anywhere in Hamilton.

[toban]

Tara, that is great it didn't show any change for the worse. You're a fighter and I'm sending you positive wishes.

My Oncology nurse worried me when she prepped me by saying, "sometimes your first post radiation MRI is worse than your previous one," and said my Oncologist was reviewing it as I sat there and waited. But when Dr. Whitton bounced in with a smile on his face, I knew the results couldn't be too bad. He said the scan was good and didn't show any change, meaning nothing better, but nothing worse. I'll take it. Especially since I was just expecting worse! No further chemo or radiation, and observation here I come. Woot! Another MRI in 4 months to revisit where I am at.

Attachment 262987

[TaraF]

Thank you toban! I just wish this gut issue would get figured out. My abdoninal xray came back "clear of rocks" lol that's how my Dr said it so now I await my scope.

And FallenPixels, you may have awakened something in me regarding the Lodge. lol I was contacted today about appearing at a few press conferences and media interviews regarding the impending closure of the Lodge to speak to the importance of it remaining open. I said I have no problem doing so as long as they work around my appointment schedule (they will), and they will take care of transportation for me as I don't drive either.

[Patty Smyth]

WTG Tara, hope the good news just keeps on coming. Looking forward to the day when he is our only Horatio.

[FallenPixels]

Thank you toban! I just wish this gut issue would get figured out. My abdoninal xray came back "clear of rocks" lol that's how my Dr said it so now I await my scope.

And FallenPixels, you may have awakened something in me regarding the Lodge. lol I was contacted today about appearing at a few press conferences and media interviews regarding the impending closure of the Lodge to speak to the importance of it remaining open. I said I have no problem doing so as long as they work around my appointment schedule (they will), and they will take care of transportation for me as I don't drive either.

When I saw the story, it really looked like you were exactly what they were looking for - lots of people think they should, I mean it is $100k savings - a lot of money to most of us, but in the grand scheme of health care budgets, you could fire a single manager and make the savings - but someone who can speak to what it means to them

[TaraF]

Thank you Patty! Right about now I could go for his hair too. Ahhh to have some hair on the side of my head again. It's getting cold now even with a hat, I really feel for bald men now!

The union guy (I've spoke at length with) said it perfectly to me when he said, he doesn't view it as a union issue but a healthcare cut issue. Taking away the Lodge impacts people across the Province and actually beyond. Truth. Because according to the article the 3 nurses that are staffed there will be placed elsewhere. I stayed in contact with a few people I met at the Lodge (one from as far away as Sask) and they are contacting him as well as Dr. Meyer and others to voice their concern too. I'm still trying to figure out how the Cancer Society owns the building but the hospital runs it, and so WHY is the cancer society letting the hospital do this? If they own the building should they not have final say? Could they not turn around, either hire someone for admin or just "shift the load" to someone else in their office for the admin to run the building and tada? Something isn't adding up here.

And I have to say I encountered the dermatologist from H-E-L-L yesterday. I was referred because I was concerned over the mole that popped up on my temple during radiation. He walks in and I remembered him from years ago, then he looks at my file and starts babbling about why I was there years ago. I'm like "yeah so that's not why I'm here today". And he keeps babbling on about this nummular eczema from years ago (which swear to this day was a misdiagnosis anyways. lol Because I was removing food from my diet to see what could be causing this odd rash and since I haven't touched a beet in 2 years I haven't had a rash. Anywhere. Without using cream or meds and even through last years harsh winter. Hrrrmmm.) Anyways. He's blabbing on about that and sees my head which is scaly and dry (no way?!) and he starts in and his numular eczema rant again, and I said "look buddy, I just finished 6 weeks of brain radiation, so I'm burnt and dry."

He has the nerve to say, "yeah well the eczema will hit you soon, it hits this time of year". So by this point I just want to get out of his office and I'm like "okay, nice, thanks". So he notices these "nubs" on my face, which again, are from the face mask I had to wear daily for 6 weeks, like, they are RIGHT in the spots the "nubs were" on the mask. I can line them up. But, "oh this is an age spot, this is (something in a long medical term) then he swings around in his chair fast and to my left which I don't see at, and back, and starts spraying something on my face. I'm shocked. I'm frozen. I'm like "what the hell!".

He's like "oh these will just fall off"

Who asked you! What Dr does something without a patients consent? Especially on their face? My husband stayed in the waiting room which he normally doesn't for my appointments, I wish he had come in with me. I was so not happy when I left there, he literally blind sided me with a can of that freezing stuff. I called my Aunt to tell her about this and I guess he did the same thing to her husband back in July to something on his leg! Just turned around and sprayed him without consent! The problem is that specialists are so hard to come by that if you don't drive (which I don't) you generally have 1 within the city to see, 2 if you're lucky. Oh and he really didn't even look at the mole, all he said was, "Yeah secondary cancers are a concern after radiation, but you don't usually have to worry about those until a few years after treatment."

[FallenPixels]

From what I heard, the Cancer Society do not actually own it, it is partially funded by the Cancer Society and they provided the start up capital, but the Hospital owns the land

There was a story in the Spec yesterday that said the Cancer Society, despite giving them over $2 million in capital funding, have an office in the Lodge building and pay the hospital rent. That person from the Cancer Society also said she was at a loss to why they had nurses on staff - seems the Cancer Society is behind the hospital on this one 100%

They also said there isn't a need for it because people no longer travel as far because of local cancer care centres, but Tara is a prime example of the fact that this is not the case

http://hamiltonhealthsciences.ca/body.cfm?id=2376
Here is a list of the salaries of the CEO/Presidents and VPs etc, if they reduced the salaries of only these 14 people by just 25% they could cover a $1 mill shortfall in the budget and the lowest paid of the group would still be making $150k

[TaraF]

Very interesting Fallen. Innnnnteresting, even. lol I just finished my interview with the Hamilton Spectator, awaiting the photographers arrival. Egads. I am sooo NOT ready for my close-up! But the article should appear in tomorrow's paper for anyone in the area who is interested in picking up a copy!

[FallenPixels]

oooh I will actually get it since he is away too (he usually steals it before I wake up)

[TaraF]

I'll be checking online tomorrow for the article, and to see which photo the photographer went with. He took like 2+ dozen photos of me. I was starting to wonder if he wanted to keep some for his private collection. haha

[FallenPixels]

They usually put a few photos online too

[Lynn49]

[TaraF]

I didn't find other photos online Fallen. THANK GOD! The one in the article is horrible! I think they went with the worst possible photo. The worst. lol Ahh well. Cut me some slack, eh? I'm trying to save a Lodge here. I am so happy they talked with Tim because he offered insight into the hotels that I couldn't. Anyone that wants to read the article can do so here: http://www.thespec.com/news-story/50...tion-in-hotel/

Don't mind the photo. Please. lol

Oh but Lynn I slept wonderfully last night. I think your sweet dreams worked! Thank you.

[FallenPixels]

Tara's story made the front page of the paper!