Nick’s had good and bad days since my last post. On Boxing Day he had painful sores in his mouth that made eating or drinking difficult. Our normal medical contacts were off for the holidays but we got hold of the hematologist on call who prescribed a mouthwash that seemed to help. Nothing major since then, just ongoing minor things.
The day after Boxing Day, Karen and Tom (my sister and brother-in-law) came to visit from Mississauga. They brought dinner and stayed at a hotel downtown. I’d told my sister that Nick liked American Eagle stuff and she appears to have bought every item they sell (except socks, because Nick and socks are like oil and water).
We’re in a deep freeze in Ottawa so we’ve gone into hibernation mode, leaving the house only when absolutely necessary, e.g., medical appointments, sisters’ margarita lunch. Temps are in the minus 20s, dipping into the mid-30s with the windchill. On the ‘bright’ side, “Temperatures are expected to warm up by Saturday, with a high of –18 C expected and an overnight low of –21 C”. A high of minus 18. Woo hoo. We’ve been passing the time with books (Ray), cooking videos (Nick), video games (also Nick) and puzzles (me). Nick can spend hours watching cooking videos. He seems to find it relaxing, a trait he did not inherit from his mother.
Since there’s not much to update, I’ll use this as a sort of public service announcement on lymphoma. Lymphoma is a cancer of the blood and lymphatic system and is categorized into Hodgkin’s lymphoma and non-Hodgkin’s lymphoma. It’s the most common cancer in teens and young adults. Symptoms include fatigue, fevers without apparent cause, night sweats and swollen lymph nodes (though other illnesses can also cause these symptoms). For Hodgkin’s, symptoms can also include itching.
Although Nick had very few symptoms, when he walked into the medical clinic on campus he said, “I think I have Hodgkin’s lymphoma.” (He didn’t share that tidbit with his parents until after the diagnosis.) In hindsight, there were signs, but when you don’t know there’s a puzzle you’re trying to solve, it’s hard to put the pieces together. Nick had told me last winter that he had swollen nodes in his neck, but he was also fighting a bit of a cold and was otherwise his normal energetic self, so I didn’t think much of it.
He’d asked Ray to buy some moisturizing soap because his skin was itchy, particularly after showering. We assumed it was the dry Canadian winters. We changed soaps and bought him some lotion for dry skin. When Ray took Nick to the dentist she noticed his lymph nodes were swollen, but again she put it down to the fact that he was a bit stuffed up. Ray had commented a few times over the past year or two that Nick’s colour seemed off; that he looked a bit pale even in the summer, which was strange as he’s always had quite a dark complexion. Last summer the three of us took part in a fitness study at the University of Ottawa. One of the things it tested was VO2 max, your maximal oxygen intake level. Nick’s results came back as below average for his age group. That makes no sense for a guy who climbs mountains, hikes for nine hours across the Gatineau hills, ran a half marathon without training and recently got his black belt. I put that one down to flawed methodology, but in hindsight, the 13 cm mass in his chest likely played a role. I’ve forgiven myself for not following up on the swollen lymph nodes. Hindsight is 20/20, but foresight is rather blurry, and when your child appears healthy and happy, your mind simply does not go to, ‘maybe it’s cancer’.
What does anger me, though, is the way the medical system has evolved to the point where GPs are incentivized to rush patients in and out of their office. Some offices even have rules about how many problems you’re allowed to raise in one visit. Nick saw the doctor for an (unrelated) spot on his lip over the summer. If she’d spent any time with him, or asked if he had any other concerns, he’d likely have raised the swollen nodes, or even the itching. It makes me wonder how many young people with mental health issues get overlooked by doctors because they no longer have time to find out how their patients are doing, or how many illnesses are misdiagnosed because symptoms are being treated in isolation. In any case, thanks to Nick’s proactivity, we caught it relatively early.
Yes, Carolyn…I and many others have had these thoughts regarding oversight due to a medical system that should be by now, in Canada, much more evolved than it is. We are a comparatively non-populous country and even though we are very blessed, seem to use our resources, dollars and otherwise, foolishly. All we can do as family members is be vigilant about healthcare and be ‘the squeaky wheel’ even if the doc wants to hurry us out the door.
I’m so glad, Nick, that you’re having mostly ‘ok’ days. Things will seem to move slowly for you for a while (everything seems too slow when you’re young, right?), but soon you’ll look back and say “Oss”…the end of that match…conquered that foe (;
To be clear, at least HALF of the presents I got him were from other stores. Although I did notice American Eagle has Boxing Day sales on… Uh oh.
Thank you again for the update. You are all in our thoughts many many times during the day. Good to hear that mouthwash helped a bit🙃 and thank you for the information. American Eagle and cooking shows. Good to know! Sending love. Jennifer
He ventured into watching bonsai videos for a few hours a couple of days ago but reverted to cooking ones when he realized how long it takes to grow bonsai.
Nick: add the phrase “time lapse” to your search criteria for the bonsai trees. 😉
I really like when you said “, but when you don’t know there’s a puzzle you’re trying to solve, it’s hard to put the pieces together.” Couldn’t be put better in any way .
Sorry to hear Nick has had such a horrible side effect. I was told some time ago that frozen grapes can be soothing and also act as an appetite stimulant if that becomes affected. With the weather you’re having there, just put a plate outside for a while!!
It is worrying about how symptoms must be missed with such rushed appointments, and the same problem happens over here too.I have tried being cheeky and using the supermarket promotional expression ” can I have a bog off”!!! Or ” buy one get one free”! It doesn’t always work, but hopefully brings a smile on a good day.
Love as always from all the Kemps to all of you
Your comments always give me a laugh. Thanks Lou. 🙂
So interesting to hear your comments about the docs. I had lunch yesterday with (my Aunt) Barbara (Ray’s mom), and she was telling me about her long time family doctor. Someone who was abrupt and very academic in his early years as a practicing physician. She persisted with him, although many did not. 40 years on, he is compassionate. Eager to listen. A true small town doctor. I wish they all took the time to know and understand their patients. Persist. Demand. Be Nick’s advocate. I know you will. ❤️❤️❤️
We missed you all at the Boxing Day get together. Jonathan and Leigh brought the baby. She has now got two teeth at only four and a half months so her cheeks are red a lot these days but she’s still as cute as when you were holding her in August, Carolyn! Hope you can come and see her after all this is behind you.
Lucas was asking about Nick and how he was doing. I keep him updated.
Your mum is a tower of strength as always, Ray. Rich and I saw her again yesterday. We have so much love and respect for her. She keeps us all going! 😍 We’ll be thinking of you all in the deep freeze. Keep warm and have a Happy New Year. All the best from Jonathan and Leigh too.
My doctor has a sign in his office that says “Only one problem will be discussed per appointment” which I have often thought was unfair if a person is dealing with more than one problem at a time! When needed I will say, apologetically, if I can ask him just one more thing…thankfully, he has always obliged. It doesn’t take much time to ask and have answered a couple of questions. And, it can help rule out or work toward confirming a potentially serious issue one might be worried about. I’m glad Nick was so self-aware and took good care of himself by seeing his doctor about the concerns. On another note, I’m glad you are hibernating and staying cozy (as we are, too, in Winnipeg!) This cold snap is frigid and limiting but perhaps there is a small blessing in that it may be helping you all to take it easy and rest while going through this stressful time. Stay warm and strong!
Love,
Arliss