Finally, an update!

Being a cancer patient is not for the faint of heart! I’m just home from another routine CT scan. I get them every three months. The scans may be routine, but my reactions are not! Sometimes I feel stressed. Sometimes I’m relaxed. Often I’m in a pretty good mood and have enjoyable conversations with people I encounter at the hospital.

This time, I felt unusual stress in the lead-up. I don’t know why and I don’t think there has to be a reason. It’s very common for cancer patients to face “scanxiety”.

Maybe I’ve been thinking too much about this time last year: I was feeling great, went for my CT scan and was blindsided by the results which led to a change of meds. The new meds seem to be working well, and have far fewer side effects. I have no reason to suspect there will be bad news from this scan.

But still the lingering stress trudged through every day. I prayed and asked my Bible study group to pray too. That made a real difference, but even so I occasionally noted the undercurrent of stress ready to ripple through my (mostly) peaceful heart.

In the hours leading up to my scan I felt fine. Joyous even. On my way into the hospital I was thinking of a friend – a lovely person who works at the hospital and just got a big promotion. I was hoping for the opportunity to congratulate her in person, and prayed that I would run into her along the corridor by the coffee shop. There she was, right where I prayed I would see her, and it was wonderful to give her a hug and hearty congratulations!

I found myself praying for other folks in the waiting areas and happily chit-chatting with hospital staff. All was going well until I heard the CT machine from the next room saying, “breathe”. The strangest thing happened: a chill went up my spine and for that moment I was filled with dread about the procedure. I prayed and felt calm again, but that was a tough moment, and this scan wasn’t an easy one. The nurse couldn’t start the IV on the first go. He fished around and still couldn’t find the vein. (Ouch!) I prayed it would go better on the second arm, and it did. The technician was joking about a bunch of things and we were laughing together, but then suddenly he started talking about the changes to our city in recent years and the dramatic increase in gun violence. This is a subject close to my heart, and it’s hard to hear this as I’m lying on the machine about to have a test. There were a few other things that also made it hard to keep calm and relaxed.

But while I was waiting in the observation area afterwards, I became aware that other patients were having a much harder time than I was. The nurse had an even worse time finding a vein in the woman after me. She sounded extremely stressed. The man after her was worried about having a reaction to the dye, since that had happened to him before. CT scans are not for the faint of heart.

I’m thankful I made it through fairly well. Now I just have to wait for the results from my oncologist!

IMG_2995Thank you for standing with us! It has now been a little over four years since my diagnosis, and we give thanks that my health is so good!

There is so much I’d love to tell you about! I know there was a longer-than-usual gap between posts, and I’m sorry if you felt any anxiety about that. I was very sick and tired out through November and December and even part of January. I’m so thankful to be getting my energy back! Here are a few quick updates.

My Lung Cancer and Jelly Beans video has had over 700 views, and many of you have made donations toward lung cancer research. Thank you very much!

 

Here it is if you want to see it again: (pardon the look on my face at the beginning!)

I’ve recently done some fundraising to help me get to the LUNGevity Hope Summit this April. I just learned today that I have raised the full $1500. Thank you to all who have given! Your gifts are both encouraging and helpful!

A large group of us are raising money to fund research into the specific kind of cancer we have: ALK+. Together, our whole team has raised about $300,000. (I think!) We surpassed my own personal fundraising goal of $500., and I’m wondering if I set my goal too low. If you would like to make a contribution towards research into my specific kind of cancer, you can still give here: Jill’s ALK+ Lung Cancer Research Fundraiser. (This is to an American charity, so receipts will only help those who pay US taxes.)

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Our pilot project for the Ottawa Lung Cancer Support Group is completed. It has been a tremendous success! This group of women connected well and we have really enjoyed spending time together. In fact, I invited them over to my home last week! Our leader is a real gift to us, and her skills and experience make a significant difference in the quality of the group. We have shared some ideas and soon the decision will be made about how to move forward to support more lung cancer patients. We are very grateful for the generous support of Lung Cancer Canada and The Ottawa Regional Cancer Foundation. If you know someone diagnosed with lung cancer in the Ottawa area, and you’d like to learn more, please be in touch – either with Lung Cancer Canada or with me.

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One in thirteen Canadians will be diagnosed with Lung Cancer

I’ve participated in a few other (lung cancer) events and there are a couple of more in the pipeline. I’ll try to keep you updated better in months to come!

Thank you again for standing with us. We can’t tell you what a difference that makes!

 

 

What to say?

When someone you know is going through a tough time, it’s hard to know what to say. Recently one of my facebook friends learned through the obituaries that the wife and receptionist of someone she was about to have an appointment with had died. She put out a poll on facebook, asking for wisdom on how to handle the situation. She wanted to say something, but thought that this grieving man might not want to talk about it at appointment after appointment all day. This friend has many wise friends, and I enjoyed reading their comments.

Sometime after my diagnosis, one of my good friends read a book about how to support a friend going through a difficult time. She asked me how I would feel about reading it and sharing my thoughts with her. She thought it might be helpful for our circle to have a conversation about how to support me. I assured her she and they were doing a marvellous job! I read the book and thought it offered some good wisdom. I really appreciate that my friend raised this question with me.

I’m a people person, and have spent my life interacting with people about deep and significant things. I have tried my best to not let fear (or other emotions) keep me from being present with people when they have gone through difficult times. Over the years I have learned a lot about how to care for people – both through trying to be a carer and from being the one cared for.

It’s not easy.

When I was in University, an older neighbour passed away. He was a fairly close family friend, and the next time I was home from school my Mom took me over to visit his widow and share my condolences. It was only to be a brief visit at the door – dropping something off, I believe. I planned out a brief phrase to say, but when she opened the door and I looked her in the eyes, my own filled with tears and we hugged. My Mom gently prompted me to speak, but I had no words. The lovely widow kindly told my Mom that I didn’t need to say anything, that she knew what I meant. What grace! She saw beyond my fumbling inability to speak: she received my presence and non-verbals as a message of love. I felt encouraged and blessed by her, and that has made a big difference to me. Not many people in pain have such love and grace to extend.

Sometimes words seem so inadequate.

Sometimes there is nothing to say.

I read an article about a series of greeting cards to send to people with cancer. It got me thinking: if I were to design a line of such cards, what would they say? (What would yours say?)

All my years of wading in with people in a variety of difficult life situations, and I’ve learned a lot… I’ve learned a lot about praying for guidance and help. I’ve learned a lot about using all the listening skills I’ve acquired over the years to try to hear what the person is saying – whether or not they are using words. I’ve learned a lot about speaking words and I’ve learned a lot about being a silent presence. I’ve learned a lot by trying. I’ve learned that it’s complicated and ever-changing.

Everyone is different. Every situation is different. Everything can change from moment to moment.

It’s not easy. Sometimes the hardest part is wrestling with our own fears, grief and feelings of inadequacy. It takes a lot of courage to try our best. It takes bravery to engage rather than avoid. I have been honoured to dive in and tried to swim these strange waters with friends. It hasn’t been pretty. It hasn’t been pleasant. But there’s depth and realness and overwhelming grace that is unspeakable gift. There is pain that comes with this profound privilege. It’s hard and it is worth it.

What to say?

There’s no one right answer, except to use all the wisdom you’ve been given, use all the skills you’ve acquired, use all the love you can muster … to intentionally listen as carefully as you can, to bravely be as present as you can, ask questions as appropriately as you can, and speak the truth in love as best as you can. (Some of you are probably thinking: she’s not going to go on and on about speaking the truth in love again! 😉 It’s a great biblical principle which I’ve spoken on many times! You can read about it in Ephesians 4:15, for example!)

Some of the things I’ve appreciated hearing at various times over the past year and a half (these are just a few off the top of my head and in no particular order):

You’re not alone. We’re with you.

We love you.

Waiting for the diagnosis is the hardest part. Once you’ve got the treatment plan it’s easier because you’ve got a plan.

Would you like me to give you a foot rub?

How can we help? (Often the person won’t know, and sometimes specific offers are more helpful.)

Would it be helpful if I _______________?

Our daughter is doing gymnastics on Mondays. How about we sign yours up too, and I can pick them up after school and take them together?

Can I pray for you? (Some people wrote out their prayers and sent them to me. Some sent encouraging Bible verses or songs. Some are posted where I can easily read them again and again.)

Can we bring you a meal this week? Any allergies?

I love cleaning! Would it be helpful for you if I come over for an hour on Thursday morning and do some cleaning for you? I could maybe do your bathrooms or vacuum or dust- what’s best for you?

I love doing jobs around the house. Do you have any small repairs I could do for you?

Yes, I’d love to help your husband install the dishwasher – thanks for asking!

Cancer sucks.

I’m so sorry.

I don’t know what to say.

Can I bring you some muffins? Would tomorrow afternoon be a good time to drop them off?

Let me know if you’d like me to take you to appointments or pick up your kids or get groceries for you. I’d love to help in any way that’s helpful for you. Please ask! (Repeat these offers because memory gets mushy in stressful times.)

I’d love to come over and help, but if that’s not helpful for you I completely understand.

I’d love to have coffee with you … are you up for it?

We’re praying for you.

… There are too many more ways to say how we’ve been blessed.

Obviously it depends on your relationship with the person, who they are, and how they are doing. If someone has recently been diagnosed, they are likely in a very different place than if treatments are going well. Even when they are doing really well, there are always good days and bad days, and in my experience sometimes it’s really unpredictable, even from one hour to the next. I’ve got to tell you I am so grateful for a friend who just yesterday graciously received the news that I was cancelling our plan for an afternoon walk with her for the second time in a week. In the morning we firmed up the plan, but two hours later I suddenly realized I wasn’t up for it. She extended so much grace to me and didn’t take it personally. I am blessed with so many good and generous friends!

Offer to help, but don’t push. Be as gracious as you possibly can. Listen hard. Try to be specific. Be flexible. Follow their lead. Don’t take it personally if they say no … some things can be surprisingly tiring! Don’t overstay. Even if you think you’re not overstaying, ask and listen for subtle responses. (Some people are too polite!) Ask questions, but not too many! Pay attention to non-verbals. Follow their cues. If you’re not sure, ask! If you’re visiting / talking, make it easy for them to tell you they’re getting tired and need to rest. If they say this, graciously go straight away!

There’s a principle regarding direction of support that I find helpful. Put the person going through the tough time at the centre and draw concentric circles around them, with the closest people who are most affected closer to the middle and acquaintances further out and strangers further out still. Support should always flow inwards. In other words, you support the people closer to the middle and you don’t look to them for support. You look to people who are farther out in the concentric circles for support. Ask the people who don’t know your sick / hurting friend as well for support, or maybe a counsellor. Does that make sense?

Lastly, and perhaps most importantly, don’t forget to support the spouse (and/or others close to the centre)! Loads of people have been praying for me, encouraging me, sending me cards and flowers and all kinds of other gifts. Obviously our whole family benefits from much of that … but don’t forget to support them too! I am so grateful for those who ask my husband how he’s doing and invite him out for a beer, or care for our children in appropriate ways. It’s so hard for them too. It’s hard for them to see me unwell. They experience deep disappointment, fear and grief. There are so many more jobs for them to do around the house because I just can’t do many of the things I used to do. My brain is mushier, so I’m not there for them the way I used to be … the way I’d like to be. They have much more on their plates in so many ways, and life is much harder than it used to be. We are working at it and learning to adjust to a very different life. Please, pray for us all and support us all … that’s one of the best gifts you can give to me!

What to say? I don’t have a specific, clear, simple answer, but even though I haven’t spent a lot of time specifically thinking about or planning this post, I do apparently have a lot to say! 🙂 It’s hard to boil it down, but if I had to … I probably still couldn’t! I don’t think there is one right answer, but if there was, off the top of my head, I think it might go something like this:

Be bravely there for your friend: be as present and as sensitive and as gracious and as generous as you can. These things are communicated in many ways, and don’t necessarily require words. Being a humble, loving listener can go a lot farther than even the most eloquent of words.

What speaks to you?