The Man in the Plastic Mask – Our Story Continues

Well, as I reported last time this was the day we were to spend down in Hamilton getting things ready for my radiation treatments. And for a few moments there, we wondered if we’d even make it.

On Monday Roberta called the Cancer Society to arrange for a volunteer driver to take us down for my three appointments today. The lady at the Society’s office told us that something would be arranged and that the volunteer driver would call my cell phone with the details sometime Wednesday night to make the arrangements for Thursday. Well, by 9 pm last night the driver still hadn’t called and since we were starting to get concerned Roberta started phoning around looking for a ‘plan B’. Unfortunately, she wasn’t too clear on the fact that the first option had appeared to have fallen through, and a lot of folks thought we had simply left asking far too late. Once that little detail was cleared up and folks realized that it was a last minute ‘plan B’ we were looking for, response became more favourable. Sorry Folks!

Anyway, a back-up plan was found; a lawyer friend of ours was willing to let us borrow one of their cars so that Roberta and I could drive down ourselves. Since no actual treatment was going to take place this time (once the treatments start I can’t drive home afterward – must have a driver) driving ourselves was an option.

About 15 minutes after we had gotten off the phone with our friends, the Cancer Society driver finally called. Turns out she had called before (the house number-not my cell phone) but because of confidentiality constraints was unable to leave a message on the machine. Apparently, and this came as a surprise to Roberta and I, a great many cancer patients never tell their families about the disease. They go through weeks and weeks of treatments without ever telling anyone they have cancer; not their co-workers, not their children, not even their spouses. For this reason, the Cancer Society volunteers are not allowed to leave a phone message in case they accidently blow their client’s cover. And since, for some reason, the office had not given the coordinator my cell phone number, we had no idea they had been trying to contact us.

Anyway, we got things sorted out with the volunteer driver and had just finished calling our lawyer friend back to let them know everything was on track when the phone rang again. This time it’s the coordinator of the volunteer drivers for the Cancer Society. While we were on the phone calling our friends (for the second time) he was telling our driver that her schedule for the next day was going to be disrupted because another volunteer was suddenly unavailable. He was calling us because we had happened to mention to the driver that we had a ‘plan B’ in place and he was calling to see if we could still use our back-up plan because he needed our driver to go to Toronto instead of Hamilton.

So, back on the phone to the lawyer-friend and this morning he picked us up at the house; we dropped him off at the office and then Roberta and I were on the road to Hamilton with an extra 20 minutes to spare. God Bless ‘em, I don’t ever want to hear any of you bad-mouthing lawyers again! Lol

The rest of the day was largely uneventful, going pretty much as planned except for one interesting little quirk at the surgeon’s office. We were just checking in with the surgeon’s secretary when he stepped into her office and asked us “Why are you here? I was not expecting to see you until after your radiation treatments were finished.” Turns out the resident at the hospital who told us to make an appointment with the good doctor for two weeks after the surgery was just following standard protocol and Dr. Gupta didn’t actually want to see us at all; he was expecting the Juravinski Centre to handle all the follow-up until after the radiation therapy was complete.

Oh well, no harm done. We did have a nice little chat with him and one of his residents and were happy to have him confirm once again that the 16mm tumour was fully contained in the tonsil and was of the P16 variety of the HP (Human Papillomavirus) type of cancer, a type which responds very well to the radiation treatments and is highly curable. Given the track record of this treatment with this type of cancer no chemo-therapy and no additional surgery should be needed once the radiation regimen is complete. Yay!

The rest of the day went smoothly; nice visit with the rad-techs at the Juravinski as they made the mould by pressing this warm net of plastic over my face (see pic –Sorry, that’s not me, it’s a file pic from web-site. Mine looks just like it though.)

Man in the Plastic mask - not me, file pic from web site

Man in the Plastic mask - not me, file pic from web site

A quick lunch at Tim’s up the street and then back to the clinic for a CT-scan that will be used to help plan my regimen of treatments and be used to aim one of the 11 Varian Linear Accelerators that will be used to administer the radiation treatments.

Well, that’s about it I guess except that I would like to make one observation.

Both Roberta and I have spent a lot of time on the phone and talking to various help care types in both Guelph and Hamilton since this whole thing started almost a year ago, and we have both noticed the same thing. Dealing with the various components of Hamilton Health Sciences has been an amazing experience. The difference between there and here in Guelph is almost like night and day.

Now I want o make it clear that I’m not talking about the people here! I am sure that the people here in Guelph are every bit as dedicated and caring as the folks in Hamilton are; rather I’m talking about the system each are asked to work under. In Guelph we have found it very much a bureaucratic, institutional system. Lots of answering machines, few call backs, overworked staff, and few volunteers resulting in a process that is designed to treat as many people as possible but with comparatively little human interaction.

The Hamilton Health Sciences setup, from our experience anyway, seems to be much better coordinated in a customer-service orientation. We call down there and talk to people within only a few steps through the computer phone system. Everyone we work with seems to be relaxed and un-hurried, their first priority appearing to be making sure we understand everything and we’re still at least marginally within our comfort zone before going on to the next step.

And the volunteers absolutely blew us away. From folks at the information desks guiding you from one part of the hospital maze to another, to the lovely woman going from waiting room to waiting room handing out coffee, tea and cookies (she even got Roberta some hot water she could use to revive her Tim Horton’s green tea), all of them were absolutely amazing. I have never had so relaxing and calming an experience in a hospital or clinic before.

Since we had the same experience at both St. Joseph’s and the Juravinski centre, either they are both reading the same play-book or Hamilton Health Services has set up a wider policy of treating people like people. Whichever it is, from where I was sitting; in the waiting room, in the Mould Room, in the CT scanning room, someone is doing something right in Hamilton.

Like I said, I really don’t believe it’s the people. I think it’s the system they are each asked to work under, one that is institutionally designed to get the job done, and another that seems designed to put patient comfort first. And if, as one friend has suggested, the difference is because both St. Joseph’s and the Juravinski are publically funded, but privately run, then give me the privately run system every time.

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