Category: Cancer

Re-wiring my brain

by  on  in Cancer, Family Life, Goals, Uncategorized • 1 Comment

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

by  on  in Cancer • 5 Comments

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.

 

Start as you mean to go on

by  on  in Cancer, Family Life, Goals, navel-gazing • 3 Comments

I mean to get outside as much as possible this year and since it warmed up to -12 degrees Celsius that is exactly what we did.

It’s my 42nd birthday today. My third birthday since being handed a terminal cancer diagnosis just over two years ago (one month shy of my 40th birthday).

I’ve written about this before but it is worth repeating: having your birthday on the first day of the year is stressful.

Don’t get me wrong – I love New Year’s. Or more specifically I love a new year and all the hope and promise it brings. I realize that it doesn’t necessarily need to bring more promise than any other day of the year but I like a fresh start. I like to begin things anew – probably because I’ve been so terrible at completing things since I started having children.

I love making lists and resolutions and dreaming about ways I can become a better person – not because I’m a terrible person but I feel there is always room for improvement. But as the old year comes to an end my list gets longer and longer and it starts to stress me out.

I MUST BEGIN ALL THE THINGS TODAY BECAUSE IT IS THE FIRST OF THE YEAR AND MY BIRTHDAY!

Needless to say I have MANY goals for this year. One of them, of course, is to stay alive but isn’t that everyone’s goal whether they have cancer or not? It isn’t enough for me to just be content with being alive, that seems like a cop-out.

You know how people like to pick one word that is going to represent the coming year for them? I keep thinking about that and what I would pick. This isn’t my word for the year but if I were to make one major goal for myself this year it would be to start feeling things again. I find that with all the emotions unleashed when I was diagnosed with cancer I just shut off my feelings. Obviously not entirely. I still feel things. I still love my children and my husband above all else and show them all the time. But I have avoided writing anything with feelings (or much of anything to be honest), or reading books that were too emotional or watching movies that would make me feel things. Some people love to cry. I hate it. I can’t even remember the last time I had a good cry and I’ve got freaking terminal cancer! I did get a little weepy when we were cutting down the Christmas tree because it was such a beautiful day and I was just so happy to be alive and out there in the woods – but even that I shut down quickly.

So I guess that is one of my words for this year: FEEL all the things. No matter how uncomfortable those feelings may make me.

The other phrase that is kicking around in my mind is NO EXCUSES because I am terrible with creating busy work for myself in order to not get things done. And so much needs to be done. SO MUCH. This could be my last year you know? (I don’t actually believe that but so many women I sort-of knew with cancer died last year that it is, in fact, a possibility.) Although maybe a better word would be FOCUS.

Maybe that will be my mantra for this year: Focus and Feel. (Sounds a bit like a sex manual.)

The rest of my goals I’m keeping to myself for now.

Do you pick a word for the new year? Make resolutions?

 

This is 42. Not quite as glamorous as someone in a bathing suit showing of their amazing body on their birthday but hey, I’m Canadian and it is January. I won’t actually see my body until late spring.

 

(Also I should probably clarify that there has been nothing stressful about my actual birthday – it has been rather wonderful with a lot of love from my little family and amazingly thoughtful presents. All other stress is completely self inflicted.)

I’m super sad about all of this

by  on  in Cancer • 2 Comments

I had just finished going through chemotherapy when the country found out that Gord Downie was sick. The summer of 2016, while the Tragically Hip were having their final tour, I was going for early morning walks in my parent’s village on the shores of Lake Ontario where the halfway point (2.5kms) was right outside a house the Hip owned… Read more →

Go away death

by  on  in Cancer • 2 Comments

I know, I know. We can never get away from death but some weeks just seem harder than others. Not only have women been dying on the private metastatic cancer Facebook pages lately but:

Maryam Mirzakhani, only woman to win math equivalent of Nobel Prize, dies at 40

She died of breast cancer that had metastasized to her bones. I think there are very few women math geniuses out there (I have theories about this but that isn’t what I want to talk about) and even though I knew very little about Maryam Mirzakhani it was nice to know that she was around and getting acclaim for her work and something she was passionate about. I often think that it is women like her who should be the celebrities and the role models that our children look up to – not the fucking Kardashians who are polluting our minds and contributing nothing to society. But now she is gone and has left behind a young daughter.

Today I also found out that Michael Stone passed away suddenly (and tragically) yesterday. Michael was a meditation teacher/Buddhist/yogi and really freaking funny guy. I had the opportunity to attend one of his workshops a couple years ago and have thoroughly enjoyed his writing. Two years after attending the workshop I am still chewing over – and laughing about – the things he talked about that weekend. He leaves behind a young family as well (I believe he and his partner just announced that they were expecting another baby).

Sometimes it seems like the deaths just keep coming. These aforementioned deaths are the ones that make me really sad – not only because these people were young but because they were touching the lives of other people. I know death is happening everywhere, all the time and I honestly try not to focus on my own death too much (which is much easier when I am feeling well than when I am laid up in bed on pain medication) but sometimes it seems hard to get away from.

I have a quote on my phone lock screen by Rachel Carson. It isn’t so much the quote that is important (although it is a beautiful quote) but it is a daily reminder that Carson worked at something she was passionate about up until the moment she died (of breast cancer). She sat in bed writing Silent Spring while the cancer ate away at her.

All these deaths are reminders of the life is short and you need to do all the things now variety that I still can’t seem to wrap my mind around. I try and focus on what is good around me – like new fern shoots coming up out of the ground or a 4-year old who is really excited about learning something new. But sometimes it is hard and all I want to do is hide away and wish I could feel the urgency that is supposed to come with being told that your time is going to be cut short.

So I guess all I can say is hug your people. And celebrate real people who are doing real things, because they are far worthier of our brain space.