My GPO appointment today was with my original one. What a change from the others I’ve been seeing. She listened and offered up suggestions instead of just nodding and offering platitudes.

The pain in my leg and the swelling of my foot has a name. My sacroilliac joint is screwed up. She pressed on a spot on my pelvis and I about went through the floor. I’m to do home exercises for now. Possibly physiotherapy if the exercises don’t work. This is also not helping my ankle heal properly when my healing powers are not very good anymore.

She agrees that with the increase in my tumour markers (30 points in a month) that IV chemo is next. Not looking forward to it. Will find out more on the 1st when I talk to my oncologist.

She’s concerned about my weight loss. Guess it’s worse than I thought. I’ve dropped about 8 pounds this month. My appetite is just not there. I sometimes forget I’m on chemo because they’re pills and they will have the same affect as IV chemo. She gave me a handout as well as discussed tricks to get me eating again.

And finally…for the amount of pain I’m in (her words), she expects me to be taking up to 12mg of hydromorphone a day instead of the occasional pill. I’ll have to work on that.

So there. Feels good to be listened to and treated like a person.

This is my bloodwork, GPO, pick up drugs week. It’s getting harder and harder to get through these weeks. Even if they usually only happen every 4 weeks. CT scans and bone scans get thrown into the mix for added stress and PTSD-like anxiety.

Bloodwork was today and I begged for a butterfly needle. Explained that I’ve been doing this at least once every 4 weeks for 5 years. My veins suck, not only is there scar tissue, but they zigzag. I’m now on blood thinners and am soooo tired of being jabbed and poked 2 or 3 time just for 3 tubes of blood. He argued with me, but did end up getting a butterfly. Insert rolling my eyes here because even with that he had to wiggle the stupid thing around. Why can’t they just believe us?

My GPO appointment is tomorrow and is supposed to be with my original GPO. Who knows who I’ll get this time.

I have a bone scan on the 25th and an added blood draw in the mix, before my oncology phone appointment on November 1st.

To top it all off, since I took the air cast off, my hip has been screwing up. Almost like I have a pinched nerve. Sometimes the pain runs from my pelvis to my foot, other times I feel like I’ve got a charlie-horse at the back of my thigh. And my foot swells up(it’s done this before and no one has been able to tell me what causes it). You got it! The same foot as the broken ankle! I’ve spend quite a few days in bed because then it doesn’t hurt as much. Luckily the last 3 or 4 days have been manageable. Wouldn’t be able to do these appointments if it wasn’t.

….and I miss my mom. A lot. The closer it gets to the day she died, the more hollow and empty I feel. To the point that I’d trade anything to be able to spend one more day with her. It’s really hard to live without a mom-hug, even when I lived away from her and it was only virtual.

My scheduled GPO visit was this morning. Turns out I have soft tissue damage in my thigh as well as my ankle. He says they’re likely the cause of the blood clots. And I’ll be on blood thinners for the rest of my life. He doesn’t think there’s been a study on cancer patients and broken bones and the chances of clots. If a cancer patient needs surgery, they automatically put them on blood thinners. According to him, there isn’t a chance these clots will cause a stroke or something, that they won’t move, the blood thinners will just break them down over time and stop more from forming.

My tumour markers are up 10 points to 78, but the CT scan shows no significant tumour movement so for now I stay on Capecitabine.

My GP appointment this afternoon was informative too. He affirmed what my GPO said this morning and added that with this specific drug, there’s no follow up. Because I have scheduled CT scans, it will be monitored.

He also suggested I look up Advanced Care Planning rather than signing a M.O.S.T. form. Advanced Care Planning allows for more leeway and specifics and would suit my current health conditions better.

Why are all the health care professionals I’ve seen so surprised that I didn’t have any symptoms for these clots? Is it really that unusual?

After these last few weeks, I feel like I can finally breath easy.

My goal, since mom died, was to make my death as easy as possible for my sister. She’s seen enough of it and dealing with mom’s estate was hard even though my mom planned ahead. I want her to have to do as little as possible when I die.

A few weeks ago, I was finally able to access our community’s Home Care team. This includes home health care visits and a palliative counsellor. It was (and still is) important to me to have all my ducks in a row before I need them in a row.

I’ve had home visits from the nurses, and spoke to the counsellor who gave me loads of information that is helping me along. We also discuss M.O.S.T. (Medical Orders For Scope of Treatment) and I’ll be talking to my GP about it on Tuesday.

Having terminal cancer is tough enough but then throw in other possibly complicated health conditions such as these blood clots and I’m back to feeling very overwhelmed, and relieved that I started all this.

My mom would call it serendipity that I started my “end game” before others thought I needed to. I’m glad I did.

So went for my routine CT today. An hour later they called saying I needed to go to emergency because I have an embolism.

4 hours later, it seems I have a clot in each lung. They could have been caused by my broken ankle or the cancer itself. Apparently cancer causes you blood to thicken. I’m now on blood thinners.

I had no symptoms, no shortness of breath, no nothing. My vitals are all normal.

Just one more thing…..

A week ago I sheered a slice off my ankle bone(fibula). Long story short, cat got out, grabbed cat, foot moved, shoe didn’t, fell and landed on foot. On cement. The next day, my neighbour took me to emergency. Bone broken, in air cast. No weight bearing for at least 2 weeks. Bought a walker with the air cast, but my upper body strength is nil so I sucked at using it. Neighbour brought me crutches and same thing. I was really really feeling sorry for myself at that point. Then….my aunt brought me a knee stroller! What a game changer! Still not 100% mobile, can’t really carry anything one handed or drive, but it won’t be so bad. Only concern I have is how the healing is going to go because of the cancer and drugs etc. time will tell.

My neighbour is awesome, driving me where I need to go and doing light housework for me, and my family is also reaching out to help.

Had my follow up with the GPO today. Cancer antigen markers are up again. Not a good thing, but they aren’t changing my drugs just yet. She wants to wait and see what the CT shows that I’m scheduled for on Sept 13th. I’m not holding my breath. I’m working on coming to terms with IV chemo being next. Probably before the end of the year.

Had m

Community Heath Services contacted me and yesterday a care nurse was here. I went over my situation and why I wanted to start this process now. She was here for about an hour and asked a ton of questions. She seemed really interested in me and my life. I definitely didn’t feel like just a case. Finally. For now, they’ll keep in touch with me about once a month unless I request someone sooner. She’s also going to get a nutritionist to contact me.

I finally feel less fearful and more content than I have in a very long time. I have direction.

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…