A few steps forward, a few steps backward …

HibiscusIn spite of the good work of my physiotherapist and all the stretches and exercises I’ve been doing, my shoulder is only a bit better. My physio said it would likely take six weeks, and I’m trying to be patient and disciplined!

I’m feeling more energetic at times, and at other times completely exhausted. I can’t find any patterns (apart from the fact I tend to feel more fatigue in the afternoons & evenings), so making plans is challenging and sometimes discouraging. On the upside, my 8yo and I enjoyed a long stroll together yesterday evening, and I felt up for another walk this morning. This is encouraging!

duck watchingIMG_0272signs of fall

I’ve now got this itchy rash on my arms & legs – mostly where my skin was tanned in the summer. My oncologist doesn’t know what causes it: possibly a combination of the meds and something else. A friend suggested putting aloe vera on it to help soothe the itchiness, so I tried it and it seems to make a big difference for a few hours. That made falling asleep last night easier than it’s been in a while!

Having a sore shoulder and being itchy isn’t so bad compared with not being able to breathe well. I’m trying to keep things in perspective. 🙂

Here’s an encouraging note:pollinators at work

Every three weeks I have two days with clinical trial appointments. Blood is drawn from my arm each of those days. Left arm on Mondays, right arm on Tuesdays. The Monday blood is sent to a local lab to make sure I’m healthy enough to continue treatment. The Tuesday blood marks the beginning of the next cycle of treatment, and is sent farther away to a lab for the clinical trial data.

Last month I started thinking about the process, and wondering why I had to have blood removed two days in a row. Couldn’t the procedure be changed so that I only had to be poked once every three weeks? (I also get poked whenever I have a CT scan, but that seems unavoidable.) As I thought it through, I couldn’t see any reason that would require blood being removed two different days, except that’s the way the trial was set up. I was open to the likelihood that I was missing something, since I have no background in medicine or pharmacology.

So, at my appointment last month, I raised the question with my oncologist and clinical trial administrator. They could understand my desire to avoid being unnecessarily poked with a needle, and promised to look into it.

When I received word of my appointments booked for this week, something was different! I went in to the clinical trial unit at the hospital, and they poked me once and filled up all the vials that were needed: two for the local lab and a bunch more to be sent away for the clinical trial lab. Only one poke this week! Yay! Then I went to see my oncologist, and he told me that several hours of discussion went into this decision. I’m so thankful! … and I hope that many future clinical trial patients will benefit from my raising the issue and the people in authority investing those hours.

Sometimes we feel powerless. From what I’ve observed, cancer patients tend to feel this quite a lot. Going though tests and treatments is really hard, and even before the diagnosis much of our power is stripped from us. It’s scary and stressful and painful and unpleasant.

I’m glad I was able to think about the blood work process, and felt empowered to ask the question. I’m thankful for those who were open to considering the possibility and willing to invest hours in wrestling with this question. I’m also grateful for the generous folks in the clinical trial section who now graciously welcome me there two days in a row instead of one. (I still have to have the other tests on the second day.) I know that makes extra work for them. Everyone is so busy. There are too many cancer patients.

Earlier this week I was thinking it would be nice to bake some muffins for our family, but I was too tired. Then a friend arrived at our door with homemade muffins she had baked for us! The next day another friend came with some more! Now we have two types of delicious muffins. We are so abundantly blessed!

Last week an envelope containing two gift cards for the grocery store arrived in our mailbox! Thank you, anonymous friend!

So that’s some of my news! … and I will also add that on my walk today I ran into three people who hadn’t seen me in a while (I haven’t been out and about much in the past two years), and they all commented on how good I’m looking. At least one didn’t recognize me at first. They all love my long curly dark hair, and one even said I look twenty years younger!

I’m thankful for these things and for so much more!

neighbourhood garden Fall flowers beauty

One thought on “A few steps forward, a few steps backward …

  1. Dear Jill, A life with variable and unreliable energy is, indeed, tough to live. I guess my blessing is I don’t have a lot of other people who rely upon me for things. I have had to let a lot of my standards drop, concentrate on the things that aid my health and things that aid my soul. The rest is just dust bunnies and dirty windows.
    I also thought you looked terrific the last time I saw you and ever so pleased you are breathing better. 😀
    Amazing that you were able to challenge the procedures at the Cancer Centre to improve your (and many others’) treatment experience. So happy for you that the outcome was positive.

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