By Kit Schindell
Read time: 6 ½ minutes
Chestnuts roasting on an open fire. Clinking glasses. The aroma of delicious food wafting through the house. A regal Christmas tree, with glistening ornaments and twinkling lights commanding attention in the living room. Bing Crosby crooning ‘White Christmas’. Your nine dozen fresh-baked cookies nestled in festive boxes for your guests to —
Wait. What guests? We’re in the midst of a pandemic. So, remove the guests from this scene and you have all the other merriment, right?
No. You’re a caregiver. You have other priorities. You’re caring for someone with bladder cancer. Perhaps your parent or spouse is in the hospital, or in and out of the hospital, or ill at home. You’re not the “identified patient” (a hospital phrase), but let’s agree that you also are trying to survive. And Christmas doesn’t help. And a pandemic doesn’t help. Merry? Really?
There are a bazillion articles on stress-busting online. Many are written by people with excellent credentials. I urge you to take a look at them. Some suggestions are terrific, and will help as you try to get through each day. By all means, breathe deeply. For sure, drink lots of water. Absolutely, take a quick walk. They all help. Others…well, sure, learn a new language. Take up sculpting. Have you fed your sourdough starter today? Excellent ideas for people with time on their hands. Probably not you.
So, how will you get through the holidays?
I’ve done the suggested things. I’ve taken my vitamins and drunk plenty of water. I’ve worked extremely hard to stay healthy so I could take care of my very sick husband. I’m a retired registered nurse who has taught stress-busting to groups over the years, but I’m coming from my role as a wife here. Here’s what helped me.
Let’s talk
Let’s face it, bladder cancer is not #1 on the list of conversation icebreakers. Sometimes people are embarrassed to discuss it. And there you are, just needing to talk to someone who won’t squirm (“They removed it? Well, how can you…?”) or demand an explanation after every phrase (“Nephrostomy? Huh?”) or even argue (“No, you must be wrong. BCG is for TB. I had that shot in 1968”).
Sometimes we just need to talk about it. Doctors are generally kind and concerned but, undoubtedly, have another eighteen patients in the waiting room. Friends can be wonderful, but they also can be unable, unwilling or unreliable — you do not want your loved one’s private details spread around. The team at Bladder Cancer Canada (BCC) will talk with you. BCC knows the questions and many of the answers. BCC will provide you with peer support, someone to just talk to, someone who’s been there. And all the programs and services are free. Call 1-866-674-8889 today for support during the holiday season.
Let’s not talk
So many times I needed silence. I could not utter one more sentence about fever or output or leaking anything. Sometimes, I’d tuck my husband in bed for the night, and return to the living room, light a candle, and turn off the lights. I needed to think. About him. About the future. About cancer. And also, I finally had a moment to think about what to send my grandkids for Christmas, or how to find someone to come over for a couple of hours so I could get my hair cut. I’m not trying to romanticize this. Sometimes I skipped the candle. Sometimes I had a cup of tea or a glass of wine. I just needed silence. And it helped.
Accept offers of help
I was so grateful to people who made specific offers of assistance. They did not say, “Call me if you need anything”. They dropped by with chocolate cookies for my husband (I’m allergic to chocolate. It’s not in my kitchen). They “husband-sat” — they arrived with a book and a beer and sat in my living room while I flew out to pick up prescriptions and groceries. They took bottles back, they collected my recycling, they just showed up. Get through these holidays with help. Sometimes, you might have to ask for it, but that’s ok. In my experience, people love to feel needed. They do want to help.
Offer help to others
Sometimes I needed to remind myself that in the Big Picture, there were other people suffering. While I was not in a position to go out to help, I was able to listen and talk and care via email. There are a lot of lonely, scared people out there. It helped me to remember that and offer what I could.
Keeping it normal
It also helped me to make sure that the small things in life were part of our day-to-day new normal. My husband had little appetite, but he liked my chicken soup. I made chicken soup regularly, with more care than usual. I served a delicious breakfast, which he loved, every single morning, knowing he would eat it, even if other meals were Just. Too. Hard. I made sure he had the newspaper. Those little things helped us both.
Except it’s not normal, folks
Our lives changed drastically. We did nothing. We went nowhere. Our wonderful young family doctor even consulted via email so we would not have to exhaust my husband with the huge energy required to get to his office – just as doctors are doing in this pandemic. We felt in limbo. Just going through the activities of daily life – breakfast, lunch, healthcare interventions, rest…helped us both. He needed the low-key schedule. I needed to feel I was helping to keep things from spiralling out of control.
Keep laughing. Please.
Humour has always been part of our life, and when this aggressive cancer invaded our residence, we needed it more than ever. Healthy laughter is wonderful. And it found a place in our overwhelming situation. I mean, when your dying husband is sitting beside you, and well-meaning friends ask, “So — are you going to marry again, Kit?”, you can only laugh (because you might otherwise dissolve into a thousand pieces). I remember glancing at those twinkling brown eyes, him trying to keep a straight face. I kept a list of the weird things people said for us to chuckle about. We tried to keep it real. We tried to find the funny side of hell. Have to say, sometimes it was a stretch.
An attitude of gratitude
No, my middle name is definitely not Pollyanna. But I found it helpful to try to find the positive wherever I could. When the caregiving was difficult, I came to understand what a privilege it was for me to be able to be that person. I was (and am) grateful for our long marriage and our wonderful life side by side. It helped me very much to concentrate on appreciating this life.
Keep on keeping on
What we are dealing with is part of life. But how we respond is truly our choice. I want to be remembered as someone who did her best to be caring, not as someone who made nine dozen cookies. You have limited energy. Perhaps few options. I urge you to make your choices and live your life as fully as you are able to, even if you can’t get out the door. May your holidays be rich in their own weird way, even as it is stripped down, and perhaps lonely.
Remember, you’re a caregiver. You’re gold.
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Disclaimer: The Bladder Cancer Canada blog is not a substitute for professional medical advice or treatment. The content on this blog shares the personal views of the writer and is for information only. Always consult your physician and do not rely on the information on this page when making decisions about your health.
Author Bio:
Vancouverite Kit Schindell enjoyed a 42-year career in health care, retiring at the director level in 2012. In the 1990s she also began editing fiction and non-fiction, a secondary career, which continues to this day.
Kit’s husband was healthy until suffering a stroke in 2006. He was then diagnosed with Non-Hodgkin lymphoma in 2014, receiving chemo and eventual remission. In 2015 he underwent open heart surgery. The next year he received a new and worrying cancer diagnosis and endured dozens of diagnostic procedures, appointments, consults, and, finally surgery. He received a very hopeful outcome, which was a great relief. Then in January of 2019 he was discovered to have a new fresh intruder in his system – advanced bladder cancer. Eight months and ten hospitalizations later, he passed away. They were married 46 years. Kit brings her wealth of health care and editing expertise as a “book doctor” to the blog, along with 13 years experience as a caregiver for her husband. Involved in her church, charities and health organizations, she’s also an active grandmother to six awesome kids, one of whom also has a blood cancer.
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