“I made the hardest call I've ever had to make to my mother and told her I couldn’t go on with my radiation. I have never been so torn in my life. But, I'm happy that I trusted my instincts. I just wanted to live as normally as possible” -Thomas
Facing choices about whether to continue treatment, making decisions about advance care planning and arranging our own funeral are not the usual conversations we have as young people. Here we talk about how we come to make decisions, voice our choices and prepare others for a time when we may no longer be able to make decisions on our own. We also discuss what leaving a legacy means to us.
I had to initiate end-of-life discussions with my healthcare providers.
When I said to my oncologist, "I want to talk about DNRs and palliative and hospice care," she said "We’re not there yet." I said, "Well, I still want to talk about it." My palliative doctor was very supportive and said, "This is the time to do it. When you're not at the point of needing hospice, this is the time to have the conversation, when you're clear-headed. These are the times to make these decisions." Every time I've heard a professional tell me that this was a good idea, it was very empowering. I always thought it was a good idea. But when a professional says "Yes, this is very helpful. We've seen people in these situations where their loved one hasn’t done this, and it's been a nightmare”, that was enough for me. One of the conversations that was crazy helpful was about DNR. My palliative-care doctor sat there and talked to me about how on TV we see somebody floating in the ocean and then they get rescued and resuscitated and within 5 minutes they're up jogging home. He said it's nothing like that. He explained that in my case if my heart stopped as a young woman, odds are good it will be because of the cancer. He said if we can resuscitate you, your ribs will be broken, your chest wall will be damaged, your muscles will be all torn. If we bring you back to life, odds are good the cancer has affected your heart and we're not going to be able to do much for you. He gave me some stats. Only 25 % of people are even able to be resuscitated, and then from that very few actually live afterward with a good quality of life. It really opened my eyes. He said, "I will support any decision you make. I just think that you should know some facts." And I thought, “I'm really glad you told me that because I didn't understand that part of it.” It really opened my eyes to what actually happens. It made it a little less emotional and more factual, which I really appreciated because a lot of this is really emotional. One resource that I found very helpful was a workbook called “Speak Up” and it’s all about advance care planning. I flipped through it and I thought, these are good questions! Advance care planning is tough, but not being able to communicate my wants and needs later is going to be tougher. Making decisions and talking about what I want if I can’t make decisions for myself later on has been hard. When we're talking about DNRs (Do Not Resuscitate orders) and being kept alive by machines, those are shitty conversations. It wasn't that long ago that my husband and I talked about whether he knew my wishes if I were to become unconscious. I realized I had not communicated them to him and I asked him if we could go through the questions in the Speak Up workbook, and he agreed. He was very receptive, but it was hard. There were tears. I talk about this stuff all the time. I speak in front of people. I write. I'm very active on social media. It was still hard going. Talking about it makes it real. This is actually happening. He just said, "I don't want you to die." That's a hard one. But is that conversation harder than me becoming unconscious and him having no idea what I want? No, it's not. I'm happy we had that conversation, and my husband is too.
I have done everything that I think I can do ahead of time.
A will is done, a power of attorney is done. I’ve had those hard conversations about what I want if there comes a time when I can’t speak for myself. I’ve made funeral arrangements with the funeral home. It’s really hard, but I do not want to put the burden on my loved ones of trying to guess what I would want because I couldn’t handle having those conversations now. That's way harder. I would never want to put that on my family. Ever.
I wish my family wasn't so scared of my upcoming death.
I don't have the luxury of going into denial about it, and I'm at peace with it. Accepting my prognosis has actually liberated me to focus on the time I have left, and on planning my funeral. I used to think I'd spend my 20s planning a wedding and I laugh at myself often thinking that planning a funeral is in fact quite similar. The funeral planning means a lot to me. I've been giving some of my things away or labeling them for people that might like them when I see something that I know one of my friends will really like... but funeral planning is special. It's an opportunity to share who I am, what my life means to me, and what those around me have meant to me. Given the fact that many of my friends and family have been scared off by the social awkwardness that comes from my prognosis, or that on many days I just don't have enough energy to communicate with anyone beyond my boyfriend and my parents, it's my only chance to share my 'favorite things' with all of those who know me. And this will carry on my legacy for me once I pass. Having this type of control over the future helps me reconcile the fact that I won't be able to make the impact I had hoped to make in the world as an adult.
My husband and I have talked about it and we've talked about who we want to take care of our children if both of us go.
I've already also mentioned to my husband that if I go I want him to start dating again. We've had those kinds of talks. My father also has a plot of land for cremation if we wanted to do that, but it hasn't been top of mind. I guess there’s still been some sort of denial. It's something that should be discussed because I don't want it all laid on my husband after I'm gone. At the same time, it's not something that we are discussing in detail all the time. There are still a few small things that we need to talk about.
I've been on the other side where I've had to plan someone’s funeral when we didn’t know what they wanted.
We were looking at each other asking, "Is this the poem that you think he would like?” I don't want my family to be worried about what friggin' poem to pick for my funeral card. I went to plan my funeral when I went back to my hometown for a visit with my parents. Shot a one-minute video before I went in, shot a one-minute video after I was done. We're from a small town. My brothers played hockey with the son of the person who opened the door into the funeral home. That's the kind of town that we live in. I went by myself. I would have asked my husband, but he wasn't able because he works. I just knew my Mom couldn't do it. I didn't want to put her through that. She's already having to go through the real thing. I didn't want to put her through the dress rehearsal. I didn't want anybody else's opinion, and it’s not like I have hard and fast rules about my death or my funeral. I didn't shed a tear. To me, it was my last gift to my family and friends. The last place they're going to want to be two days after I die is the funeral home. They're going to want to be together sharing memories, going through pictures, crying, eating, drinking, whatever. So I decided I’m going to pick out these boxes for them. They will still have to go, but hopefully, it will be easier for them and it's a 10-minute meeting of "She said this," or “Are you fine with that?"
I look after all the finances and bill paying, and I’ve already planned for when I can’t do it anymore.
I am very Type A. I have everything written down for him: instructions on how to do things, policies written down and passwords. Anything and everything you can imagine. We haven't gone over it because we're not there yet but, I have taken care of it all. I have so little control over anything right now that if I can take control over things like this, it helps.
My father in law was diagnosed with Stage IV lung cancer a few months before my cancer came back terminal, and he died within 10 weeks.
We watched him die in palliative care and he started that death rattle. We had been warned about it. The way the nurse explained it to us was that the lungs fill with fluid and they can't clear their throat or lungs, and that's the terrible sound. We thought how awful that must be! And then recently, we watched a video about death. The palliative doctor described the death rattle as your body being in such a state of relaxation that it's not so much a struggle as it is a side effect of everything calming down. Your breathing is more shallow, and you’re in and out of sleep. I thought if I had not been willing to watch these videos and to try to learn about the process of dying, I wouldn't have that piece of information. I ended up sharing it with my husband, and I know it gave him some relief about how his Dad died. And I'm hoping that if I get to that point where I have that side effect, he'll be less panicked for me, and hopefully he'll realize that it's just a side effect of what's to come.
When I first I found out that I wasn’t going to survive this, I thought, “Oh My God, I have to single-handedly donate and fund a children’s hospital in my name!”.
I’m going to have to come up with millions of dollars because nobody is going to remember me otherwise. And then I began to realize the difference between tangible legacy and intangible legacy, and the intended legacy and the unintended legacy. We’re all living our legacy, whether we want to admit that or not. Whether you're terminal or not, you're still living your legacy. When I make somebody laugh so hard that they pee a little, that is part of my legacy - that I consider myself to be a funny person. The way that I make people feel, the love that my niece and nephew feel from me, is part of my legacy. The stupid memories that we all have from growing up together. I have been best friends with three of my four bridesmaids since we were in kindergarten. Part of my legacy is that I have friendships that last forever. I think being a “price matcher” is part of my legacy. It's all the things that people know me for. It’s the tangible aspect of it too. My Youtube channel is part of my legacy. You don’t have to be in a textbook or build a massive hospital that saves millions of children a year to have a legacy. That isn't necessarily what it means. I'm a good wife and a good daughter and I have a strong relationship with my brothers. That’s what legacy is. We all have a legacy.
I have a box of cards for all occasions for my children.
There's about 36 in there. Once I start to get some bad news, it's there. That's my saving grace. I'm going to start filling them up. There's going to be birthday cards, anniversary cards, Christmas cards, everything. Originally, I went through the whole panic of "I'm not going to be here" because my cancer is highly aggressive. I wasn't expecting it to lay dormant for a year and a half, but when it comes down to it, I had put some stuff aside for each of the kids. Now that I'm stable, I've told myself that I'm not going to get into that until I get sicker.
Advice from Health Care Providers
Contemplating the future and thinking about making tough decisions can be very difficult. The idiom “plan for the best and prepare for the rest” can be helpful when considering decisions about future care. You can hope that this current treatment will continue to work and, at the same time, think about what is most important to you if the treatment does not work or if the side effects are too many. There is no “right answer” in these situations, but they require an exploration of what is most important to you and a careful balancing of the risks and benefits of each treatment and intervention. These decisions are even more difficult in times of high stress, like when facing a crisis or acute change. Therefore, these conversations may best be started in times of relative stability, taking the time to contemplate the “what if’s” of the future. Additionally, these are not one-time decisions. They need to be revisited and contemplated again over time as things change. You might want to think about involving others in your decision making. You do not need to make decisions alone. After sharing with your team the things that are important to you, if it would be helpful you can ask your doctor and/or medical team for their opinion and recommendations. Consider sharing this information with your friends, partner, parents, or other supportive people in your life. That way they can understand the context for why you are making decisions and can provide support to you.
Decisions about stopping treatment
The decision to discontinue cancer-directed treatment is one of the most difficult decisions one can face. This decision needs to take into consideration your illness experience – what you have endured, what you have overcome, what is happening with your disease right now. Knowing everything that you have been through, it is important to consider what is most important to you. What are you hoping for? If a cure is no longer possible, what else are you hoping for? Continue asking this question until you have identified all the things that may be important to you right now. Are you hoping for comfort? For the chance to see next Christmas? An opportunity to travel? More time at home? If your current treatment or other possible treatment options cannot help you achieve these goals, it might be time to consider discontinuing treatment. Additionally, careful consideration of the burdens or risks of treatments should be weighed against the possible benefits or outcomes. If the balance tips too far toward the burdens or risks, this also might be an important consideration in deciding to change or to stop treatment. Including others in discussion around the possible benefits and burdens or future of continued treatments and reminding them of the ups and downs of your cancer care is essential. These kinds of discussions may shift the perception from “giving up” to “changing priorities.”
It can be hard to think about a time in the future when you might become too sick to be able to make decisions for yourself. It can be even harder to have conversations about your wishes with those closest to you. You might be ready to talk about these decisions but your partner, family and/or close friends may not be and inadvertently shut you down by saying something like “Don’t talk like that. Don’t give up hope.” On the other hand, others close to you might be wondering what your wishes are, but are afraid to bring it up in case you are not ready to talk. Planning ahead has nothing to do with hope. Planning ahead is a way of helping ensure your wishes are carried out, and helping those closest to you so that they are not left second guessing if there comes a time you cannot speak for yourself. These are not everyday conversations, especially when you are young. If you haven’t already, you will soon discover that many of the resources and the information that is available about making wills, funeral planning, powers of attorney and advance care plans (sometimes called “living wills”) tend to be geared to older people. This can add to your feeling out of step with your peers and feelings of isolation. You might find it helpful to watch a video or read about how others in your situation have tackled this. Every situation is different and depends on many factors including things like whether you own property, if you are single, partnered, legally married or have children. Different provinces and territories in Canada have different laws. Some people choose to have joint ownership on bank accounts and property (like houses and cars) with beneficiaries. Seek legal and financial advice from experts as needed. Consider: Advance care planning – Hopefully, you will always be able to speak for yourself and express your wishes for your medical care. But if you can’t, you and your loved ones will be glad you talked about and recorded this. There are many resources to help you start these conversations. One helpful resource is the national Speak Up Campaign that provides resources on advance care planning. Wills and powers of attorney – Because laws are not the same in every province or territory, it can be helpful to seek legal advice. Situations vary greatly depending on whether you are partnered, have children, own property and/or other assets. Funeral planning: This includes your wishes in regard to burial, cremation, religious ceremonies or services, celebration of life, obituaries, etc. Many have said that they found once they had done this type of planning, and had these hard conversations, they felt relieved and more settled. They could then put these things aside and get on with living.
My husband and I talk about everything together.
When it comes down to it, it is my decision in the end as to what I do. But we can talk out exactly what the result means from what our GP says. Our GP only has a basic understanding of what the scan results are saying but can at least tell us if they saw any significant growth. Just being able to start thinking about what strategies we might go with next, whether it's chemo pills, more IV-chemo, or even more radiation. [At this point I've reached the safety limit for radiation therapy for my chest wall, so any more radiation to my ribs would be for palliative purposes, as a way to control excruciating pain].
My cancer is very likely to return but hasn’t yet.
I think about what I might decide to do when it does. When my grandmother had a terminal diagnosis, she wanted her treatments prolonged in order to see her grandchildren graduate. For me, I’d skip the treatment and try to travel.
After my medical team announced that all treatment options had failed, I was offered radiation to potentially extend my life.
At this point I had received numerous surgeries, had a giant open wound on my neck, and was sleeping about 16 hours a day... but I wanted to live to see my cousin get married 7 weeks later. I thought it was a no-brainer, I would do all the radiation they could possibly give me and maybe I would even make it to the May long weekend, my favorite time of the year. This was my new goal. Making it to May. Two weeks into intensive radiation, the skin had started sloughing off all around my neck wound, and peeling off the side of my face. I felt sicker than ever and thought I might die of the side effects of the radiation. Quitting any kind of treatment had never occurred to me before, but in the last few weeks, I had spent so much time reassuring my family and friends, that I had accepted my upcoming mortality. Having tried to convince those around me to not fear death so much, I worried what they would think if they saw me in a casket with half my face covered up. It is really important to me that my funeral serves to reinforce how positive a life that I've had, and the thought of my loved ones cringing as they saw what had become of my body was the final straw. I made the hardest call I've ever had to make to my mother and sobbed as I told her I couldn't go on with the radiation. I have never been so torn in my life, but I'm happy that I trusted my instincts. I lived to see both my cousin's wedding and to go camping for the May long weekend. Even if I hadn't survived this long, the decision was the wise one to make for me. Still, those kinds of decisions and hard conversations stay with you. I got the courage to stand up for myself more and more after that decision, saying 'no' to any and all 'miracle cures' others kept finding for me. I just wanted to live as normally as possible.
I will never not be hopeful for a cure but I'm also the one who goes to the hospital three times a week right now.
I have to balance hope with reality a lot more than anybody else, except my husband.