Category: Cancer

Meeting of the Cancer Club

Image is from a walk we took in the fall.
“Mum, take a picture of me in this tree!
Now take a picture of me in this tree!
Oh wait, this one too.”

Yesterday there was an impromptu meeting of the Cancer Club – which isn’t really a club and only has two members in it: myself and my friend with multiple myeloma. Our daughters dubbed it “the cancer club” because we try to get together for our bone juice (bisphosphonate infusion) appointments every three months. But this month she couldn’t come because her cancer took an aggressive turn for the worse – thankfully it has turned back but her story isn’t really mine to tell.

What I do want to talk about is the discussion we had which seemed so normal to us but upon reflection might seem weird to others.

Here is the thing about Stage IV cancer – you can be ticking along stable for months and then gone two weeks later. That is always in the fore front of our minds. It has happened time and again to women I know with metastatic breast cancer. It isn’t always like this of course, sometimes it is a long drawn out process. Sometimes it isn’t. None of us ever know how long we are going to get top-side but some of us know we aren’t going to get as long as we would like.

Anyway, this friend had a book to recommend about raising teenage girls. She and her husband are reading it and as there is the very real possibility that he will be left alone some day raising teenage girls (their girls are already teenagers) she thought, especially after the recent health scare, that it was a good idea they read it together. And she thinks it is a good idea that Mister and I read it together because there is a very real possibility he will be left alone raising teenage girls. These are the things you talk about in the cancer club. You don’t always cry about them either – often you laugh (at least we do) because what else can you do? Do we want to leave our husbands – who are also our partners and our very best friends – to raise our children alone. Not at all. But this is our reality and the longer you live with it the more you come to accept it. Cancer club discussions also include showing off your recent war wounds, discussing what you want for your funeral and what you definitely don’t want, and telling your friend that it is okay she hasn’t organized 10 years of family photos because it will give her family something to do when she is gone. (I’m the friend in that scenario and I appreciated this advice SO MUCH but I will probably still stress about those photos.)

We also talked about making plans. Because you can never stop making plans – and I didn’t realize how hopeful this action was until I was giving my dad the break down of our summer plans the other day. Because I am a PLANNER our summer holiday is booked, the AirBnB is booked, the summer camps are booked and all that is left to do is live our lives until it is time to leave and hope that cancer doesn’t throw any road blocks in our way. But back to my dad. We were on the phone and he needed the itinerary (I am his daughter through-and-through) and he said, “you’re making plans – that is so great” and he sounded so happy for me and it wasn’t until that moment that I realized how important making plans was – not just for myself but for every one around me. It gives us all hope and, as a mom with cancer, I feel like that is a big part of my job. (A job made much easier when one is feeling well I should add – when you are constantly battling sickness things tend to get a lot darker.)

Our plan for the summer is to take the girls out of school a little early and go on a road trip to the coast – and then come home and enjoy our city. My friend’s plan is to take the family to visit family in Europe. Let’s hope we both make it.

My little treehugger turns 6 in a week. That’s a whole other post but I couldn’t resist sharing these photos.

What else is there?

Currently we are reading Catch-22 for book club. I think our book club is currently being called People Who Actually Read the Book club but I haven’t been following along with the discussion. In my head I call it Mensa Book Club Drop Outs & Their Spouses (I’m the spouse, not the Mensa person in case there was any doubt) but either way I’m not sure I’m going to be finishing Catch-22 this time around which I feel rather bad about since it was my pick.

 

I’ve slowed down my reading a whole lot lately. I came across this bit this morning and didn’t want to continue until I had ruminated on it for a while. In this chapter Dunbar is talking about how much he loves skeet shooting because it is so boring and makes time pass slowly – to him the slower time passes the longer your life. Dunbar and Clevinger bicker about it for a while (there is a lot of bickering in this book) and then Clevinger concedes:

“Maybe a long life does have to be filled with many unpleasant conditions if it’s to seem long. But in that event, who wants one?”

And as you can see from the photo above Dunbar wants one – as do most of the men in this story because it is set during WWII and all they want is to get out of the war and go home. I think most people facing death would trade it for a long life no matter how boring.

Which comes to the thought that has been circulating in my mind lately: what the hell am I doing with my life these days?

When I was first diagnosed I didn’t want anything to do with thinking about death (or reading about death) but now it seems like it is constantly on my mind (and a lot of my reading is focused on people talking about death). Not in the sense that I am thinking about my death all the time but I am thinking about this culture of living grief that seems to be surrounding us as medical science is able to hand you a terminal diagnosis these days and then keep you alive for an indefinite amount of time.

I remember in high school when we had to put our beloved Dalmatian, Belle, down. My dad was away on a business trip and we were waiting for him to come home so we could do it. At the time I likened it to living with a criminal on death row because we were just in the odd period of limbo while we waited for her death. Every day she was with us but not. Then one day I got off the bus and I knew, I just knew that she was gone. I told myself “if the car is parked the driveway then Mum took her to the vet today.” And so I started running and sure enough, there was the car in the driveway (Mum should have been at work) and when I went in the house Mum just said sadly, “I just couldn’t’ wait anymore” and I understood, I really did. I wasn’t mad, we had been saying goodbye to Belle daily for weeks. I was just sad – we all were (Dad was relieved that he didn’t have to be a part of it, old softy that he is, he hated that dog for years but would never have been able to watch her go) – but at least we didn’t have to watch her deteriorate anymore.

Sometimes I feel like that criminal on death row.

For the past couple months I have been thinking about starting a podcast where I would talk to other people who are also living with a terminal disease. But then my friend Jocelyn told me about how much her friends who have started podcasts ended up hating them because of all the work and now I’m not sure that is the direction I want to go in. I still want to interview people who are facing death – and not just women with Stage IV breast cancer either – but writing has always been my medium of choice and that is probably the direction I will take. I miss interviewing people and writing articles. I miss writing and having purpose but I’m trying to slow down and figure out a good balance. To not worry when I don’t finish a book. To not beat myself up when I am not feeling well enough to go to yoga. To sit down and focus on one task at a time.

Our trip to Ireland is coming up and so there is a lot of little things to get ready for that as well. I’m also attempting to knit a sweater for the first time and trying to get it done to take with me. (And nowhere does my perfectionist nature shine through than when I am knitting because I have cast-on this sweater eleventy billion times and switched yarn so I can get it just right.) Plus I was hoping to finish a story to submit to a contest before we leave.

Slow fashion.

Slow reading.

Slow writing.

Long life?

 

Let’s hope so.

In mourning or Pity Party, Table for One

I’m a mess guys.

February was spent exercising which was great except that when I am fully dedicated to exercising I seem to be unable to do anything else. Like write. Or blog. Or function as a person with more than one interest.

And then everyone got sick and it all got shot to hell. And then I got sick and now I am on week three of recovery and I still have a nose full of cold sores but at least my voice is back.

But I can’t seem to get motivated to do anything these days. I feel like I wander around doing nothing from the moment my girls leave the house until they come back for lunch – and then again in the afternoon. At least while I was exercising I got that done before wandering around the house doing nothing for the rest of the day.

I’ve tried to start meditating again and today I started a 7 Day meditation dedicated to anxiety and I couldn’t tell you a single word of it as soon as it ended.

My plans for going outside every day this year were abandoned early in the year because – let’s be honest – I hate the cold. It may be the 6th of April but my girls had to have indoor recess today. Do you know what the criteria is for indoor recess? -20 degrees celsius! MINUS TWENTY.

Mostly I just want to sit around and read crap, eat crap, and cry.

I have come to the realization that I am in mourning. Mourning for my breasts which I still have but probably won’t by the end of the summer (definitely not having them removed before going to Ireland). My emotions for this oscillate between being happy that I never have to wear a bra again and terror over surgery and what having a mastectomy means in terms of recovery. Also, I’m not looking forward to having hideous scars even if I can wear sun dresses bra-less for the first time in 20 years. As a 40-plus woman who is on the other side of child bearing (the downward slope of child bearing, because everything is now sloping downwards) it is hard enough to like my body without all the shit that comes with cancer treatment (like the painful face rash I was sporting for a month).

I try not to think about the – possible – upcoming mastectomy, except I have this large tumour in my boob that I can feel at all times reminding me constantly that there is a war going on in my body. Oh, you want to sleep do you? Sorry, we are just going to shoot sharp pains into your burning breast all night.

So yeah, I’m a mess and have been hiding away because I hate being all wah-wah-woe-is-me.

How are you guys doing? (And I mean that sincerely, I want to know how everyone is doing – good and bad. Don’t feel you can’t mention good things or bad things just because I’ve been throwing myself a month-long pity party.)

 

Re-wiring my brain

In love with the winter sun.

My goal for this month is to post two blogs a week on Monday and Thursday and I have already fallen down on that goal. But my other goal is to tell myself – repeatedly – that my goals don’t have to be all-or-nothing. I am very much an all-or-nothing person and I’m trying to re-wire my brain and teach myself that each day is a day to start again. So even if I don’t know what to write about OR if it is Tuesday instead of Monday I am going to post a blog.

Warning. Today’s blog post is rambley and talks about parking again.

Yesterday I had an appointment with my oncologist for 10:10 in the morning. We arrived at 9:55 and paid for two hours of parking. I saw the doctor at 12:10. This is pretty standard. The oncology department was busy this morning and we knew there would be a delay (there always is). I don’t really blame the oncologist for this either – there are just SO MANY of us with cancer these days. Anyway. I stayed around afterwards for some X-Rays and left shortly after 1pm. One of the things I noticed while I was walking around the waiting room was that the hospital provides all these “free” programs and support groups for people going through cancer but I wonder how many people don’t go to them because they don’t want to pay for parking? I know that is always one of my deciding factors when it comes to any activity.

I did tell my oncologist that I need to be fully fit and healthy by mid-June because we have bought five plane tickets for Ireland for a month starting on the 14th of June and I want to enjoy this trip as much as possible. My oncologist said she often thinks about how terribly sick I was when we first met (I refer to it as “actively dying”) and what a difference she sees in me now. Then she said this: “I can’t cure you but I can try and give you as much quality of life for as long as possible.” Which is exactly what I am trying to do. I’m glad we are on the same page.

Today I was supposed to volunteer for an all-day field trip with Fionnuala’s class. But due to back and hip pain I cancelled. I think I was being overly ambitious by hoping that I could survive a day like that but if I’m not overly ambitious I’ll never get anything accomplished in this life, right? Fionnuala was very disappointed though and that’s just one more thing they are going to remember when I am gone.

I leave tomorrow for a quick trip to Ottawa for the funeral of my godfather whom I affectionately called Uncle Bunny. It’s a bit of a family reunion and I am more excited than I probably have the right to be since it is for a funeral – but I will take adventures where I can get them these days. You know what else I’m excited for? Four hours of uninterrupted reading time on the plane BY MYSELF! I’ve already downloading Neil Gaiman’s The Ocean At The End of the Lane on audio since it is next month’s pick for book club and now I just need to nail down a knitting project I can do on the plane for maximum child-free enjoyment. Plus the two other books I am currently reading. The possibilities are endless.

Trying to get outside every day.

Parking anxiety

I’m in between hospital visits right now – literally. I had an appointment at 7:45 am to get an injection and have to be back at 10:30 for the bone scan and possible X-Rays. This is all related to the back injury I gave myself in June that just won’t go away. Although it has been a lot better lately so I’m feeling hopeful. I don’t really have scanxiety yet because my scans are always clear (this will change someday). What I do have is parking anxiety. Mostly I get mad at how much we have to pay for parking and I am very grateful that I can come home between visits and not have to pay any more than necessary. I’m going to rant a bit here about parking so feel free to close down this window if you aren’t interested.

 

At the hospital/cancer centre I go to they have (what I call) a “predict pay” system of parking. Before they shut down the parking lot right beside the cancer centre you could pay when you were done – but that lot is currently under construction (to make it bigger). All the other lots ask you to pay for how long you need. But here is the thing. YOU NEVER KNOW HOW LONG YOU NEED. I often have oncology appointments around 9am. Sometimes I see the oncologist within the hour. Sometimes I see her at lunch time. If I pay for three or four hours and then am done in an hour that is one free parking spot the hospital gets to charge to someone else while still making money off me. I’m not going to lie, I’m totally incensed by this. I don’t understand why they need to charge so much. It cost me $4.50 this morning for an hours worth of parking. If I stayed for my 10:30 appointment I would need to pay for at least 4 hours of parking. Very few people can leave and come back (and then fight to find a parking spot again but that is a different issue) and I have the luxury of being dropped off later and then either get picked up or walk home. But when I was going through chemotherapy I would consistently be at the hospital for 2 to 4 hours a couple times a week. Nothing says compassion like making money off of patients and their families. It regularly cost us $13 or more to pay for parking on treatment days.

I have a good friend who, when her brother was in the hospital for a month following a serious accident, paid hundreds of dollars for parking to be with him. This is what you do for loved ones. What about the people who travel hundreds of kilometers for tests and treatment and also have to pay for hotels? (I once met a couple who drove 7 hours for tests.) What about low income families? People go into debt to pay for parking. I’m pretty sure there has to be a better option out there.