Again I saw a different GPO from my last appointment. I had to repeat things over again about side effects etc, that seems to be a common occurrence because I never see the same person twice in a row.

Told her about my flare ups of pain that I’ve had and where it was happening. Explained again that I have a high pain tolerance which she “got “ when she pressed on the area. I declined X-rays, chances are they won’t show anything and if they did, there’s nothing to be done for it anyway.

I asked about a care team. She went on to tell me that usually my GP sends a recommendation for that? What? That makes no sense to me when I’m under the care of the cancer clinic. She then tells me she’s part of that team. I got upset.

I told her that I’m feeling like a “case” and not a person because I never see the same person twice in a row, how Victoria didn’t call to tell me they’d canceled my appointment because it was the wrong oncologist. I understand that the medical community is short staffed but I don’t care. It doesn’t do me any good to keep repeating myself at each appointment, that I think it’s important that my care givers get to know me, and me them. She agreed with me. I’m hoping she’s sincere.

I said that I know my treatment options are few from this point forward and I need help with end of life stuff. What’s it look like for me, what do I need to do before that happens? I said that I’d like to have my ducks in a row before I need my ducks in a row. That I didn’t want to burden my family with stuff I could have taken care of. I told her about my sister calling my neighbour to check up on me because I feel foolish asking for help with things like housework or unloading the dishwasher the times when I’m not physically able. I told her I’m tired. Just tired of dealing with all this for so long.

I finally got somewhere. She says she can recommend me to the care team. She’ll get the councillor who deals with end of life to contact me to help me navigate it all. She’ll get the care nurses to contact me. They’ll keep in touch once a week or once a month, whatever we decide. She’ll get the booking receptionist to do her best to book me with the same GPO each time.

I’m not holding my breath. It really sucks that in order to get the help I think I’m entitled to (yes, entitled!”), that I have to get upset. Far as I’m concerned, all these things should be a package deal. We, as terminal patients, shouldn’t have to figure out what it is we need when we have no clue what that even is.

This post is not about cancer 🙂

Not long after I moved into mom’s condo, I started seeing this crow that was hopping funny and his wingtip was dragging on the ground. The more I watched him,the more I saw how messed up his wing and leg were. It looked like he’d been hit by a car at some point. When he flew, the one leg would hang down. The injuries seemed to be old, he was used to them and got around ok.

Me being an animal lover, I felt sorry for him so I tossed him some cat food. Next day he was on my fence. I fed him again. He’d show up every couple of days. After a while he was showing up every day. I decided to name him Draco. (means serpent or dragon in Latin). He could see me sitting on the couch and if I ignored him, he’d caw to make sure I knew he was there. After a while he was showing up more than once a day. He learned my routine and will patiently, quietly wait for me in the morning. I’m not always up as early as him. When I do wake up, I can see him watching me through the sliding glass doors in my bedroom and he’ll “follow” me to the living room when I get up.

A couple of months ago his mate started showing up with him. She‘s classy and quiet and a real lady. She’s smaller than Draco. She is constantly grooming Draco and doesn’t take any guff from him and will stop him from stealing her portion of the food by chirping at him. I named her Stella.

Then there were 3. Their kid started coming with them. Noisy little bugger. He’d caw relentlessly and beg Draco and Stella to feed him. Occasionally they’d get angry with him and knock him off the fence and pin him to the ground. I call him Chucky. It took me a while to figure out how to make sure they all got food so that Chucky would shut up.

Every so often there are 4 others that show up (the band of brothers) but they only seem to show up in the mornings.

These 3 now show up at least 3 times a day. Yup. Breakfast, lunch and dinner. I can get pretty close to them, about 3 feet before they get nervous and fly to a different area on the fence. I love watching how they interact with each other and have learned so much about them. My neighbour teases me about being a bird whisperer.

So the Victoria oncologist called me today. He apologized for the appointment mixup.

He went over my scans with me. I’m stable. There’s been no movement since my last scans so I’ll continue with this current drug regimen. I’ll have scans again in 3 or 4 months. My original oncologist should be back by then.

I mentioned my concerns about feeling like just a chart number and how many GPO’s and oncologists I’ve seen in the past year. How they can’t know what is best for me or what will work for me when they aren’t given the chance to know me because I keep getting passed off to someone else. He said he’ll make sure my scans get scheduled properly this time.

He agreed and said I needed to contact the BC Cancer Agency and voice this to them as well. He went on to tell me that at least half of the oncologists on the island have left in the past year. That they’ve been flying oncologists in from Vancouver to help with the load. Not my fault. Is my problem when it impacts my care though. I’ll need to work on a statement that makes a good impact and find the correct contact to send it to.

We also talked about “what’s next”. Looks like it’s IV chemo. 3 or 4 different strains to try. Wonderful 😦 We talked how they start us patients off with the most promising drug and work our way down through ones that may not work as well. Or until our bodies or minds can’t take anymore. Like I’ve said, it’s a toss up as to which will kill me first, the treatment or the cancer.

I’m exhausted…

Was supposed to get a phone call from an oncologist today at 10am. 10:30 rolls around and no phone call. My sister was waiting with me and was on a timeline of her own…I said “maybe I wrote it down wrong.” Maybe it’s at 10:30. 10:50 I finally called Victoria. They told me they’d booked me with the “wrong” oncologist. This one only deals with waist down cancer. She said they were in the process of rebooking me. I told her to thank them for calling me and letting me know!!

I’m so angry. Feel like I’m getting lost in the shuffle. I’m feeling like just a number with all the different GPO’s and oncologists I’ve been seeing because none of them is getting to know me. Guess I was spoiled seeing the same oncologist for 8 years before I moved back home. I need to find me an advocate. I know if I try to advocate for myself, I’ll be seen as “too emotional “ if I get upset, and “difficult “ if I ask too many questions and want more information that they see fit to give me.

My bone scan results are ready today too. although there’s “no clear progression “, and “stable uptake”, they still note the new uptake in my sacrum and in my upper C-spine(my neck). Also arthritic-type uptake in the hips and right foot and ankle. No real clue what all this means because there’s no oncologist to decipher it for me! Guess I’ll consider myself stable until told otherwise. Insert big huge sigh here.