October 08, 2009

Are You Welcome in the Cancer Club?


“Are you going to write in your book about the people who died?  It is so depressing,” a person in the publishing world asked while I was writing Everything Changes.  My answer: a polite version of “You better f***ing believe I am.”

How could I write a book about cancer and exclude the people who died and their families?  Yep, it has its sad moments, but that’s why cancer sucks.  That’s why we raise money for research.  That’s why I write a blog and wrote a book, and promote young adult cancer organizations: all so we can support each other around the pissy hard times.

Charissa is an recent widow who I’ve become friends with.  She is an incredible woman who I adore.  (See her recent post Mourning As A Young Adult?)  And I love my regular communication with a few different patients who are end-stage.  The death aspect of other people’s cancer experiences does not freak me out.  I don’t know why.

There are,  however, many young patients barreling through illness who do choose to steer clear of relationships with end-stage patients and grieving partners.  I do not judge these patients for giving a cold shoulder to death and hence a brush off to other patients and families facing it. The need to cocoon yourself from death when you are a young adult trying so hard to live does make sense to me.  Plus, I have papillary thyroid cancer – a disease from which very, very few people die, so I’m never faced with the question of communicating with someone who is dying from my disease.  Maybe it would make a difference to me… maybe not..

But let’s look at the other part of the equation: The patients and families who are facing death.  They’re still part of our community.  Cancer doesn’t end when you stop taking chemo.  Cancer doesn’t end when you enroll in hospice.  Cancer doesn’t end when your partner, who had lymphoma, has been dead for nine months.

Yet, I talk regularly to end-stage patients and grieving families who say they feel unwelcome in the young adult cancer world, from seemingly simple conversations where patients insist that everyone is a survivor and nobody is a victim, to feeling unable to express their fears of dying or phases of mourning in chat rooms, at conferences, and in support groups.  That stinks.  And it needs to change.

Have you ever avoided dying patients because they feel unhopeful to your own survival?  If you’re end-stage, have you found support in the young adult cancer world and what do you want that you aren’t getting?  If you are grieving, do you want to stay connected to the cancer community and how have you been received?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Spoiler alert: most of the people are still living but not all of ‘em.

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  1. winediva Says:
    October 8th, 2009 at 3:31 PM

    I’ll admit that I seek out healthier looking patients to chat with in the waiting room at NMH Lurie Center. I look for people with some kind of “spark” that is visible: a bright colored scarf, animated face, “save the boobies” t-shirt…something that gives an indication that this person might have a kindred outlook. Maybe its a self-preservation thing, maybe its selfish, no clue what it may say about me. Wondering if anyone else does the same?

  2. charissa Says:
    October 8th, 2009 at 3:32 PM

    Thanks for posting this Kairol. Its exactly the thing I tried to touch on in my original post for you. And something I think about every day as my “friends” get back to their “Regular” lives, and I find myself having no one to connect with in any real way. None of my friends have had cancer. None of my friends have lost their partner. I have to go out of my way to find people to connect with, and they have mostly either been internet folks or people currently going through cancer treatment, or both. It feels like I have to do a lot of work to make meaningful connections, and sometimes, after loss, thats really hard to do.

    I certainly dont have any real answers to this problem, but I think you are right on with some of your assessments. As a wife, I still went to all of the appointments, I sat in the treatment area. I talked to the doctors, I waited nervously for results. I picked up medication refills, I cleaned up unpleasant messes, I cried and laughed and hoped and feared. I didnt experience the cancer in the same way my husband did, but I have a cancer related experience that is all my own. We, as a family, had cancer.

    Now, as a single parent and sole breadwinner, I cant always get to support group meetings, and I dont even know that there is one happening near me that I feel comfortable with. Sure, I have some things in common with the 30 year old woman whose husband died in a car crash, and while our situations are both tragic and we are both grieving, we come form very different places. We dont necessarily belong n the same support group.

    Long story short, I do agree that the cancer community needs better follow through, and its something I am trying to keep in the planning for BRICKS. Cancer doesnt stop when someone dies. Its a part of me now, part of my life and who I am and who I am becoming.

  3. Rich Devlin Says:
    October 8th, 2009 at 7:43 PM

    Like Charissa, I feel drawn back to the cancer community because my grief is so deeply and intimately connected to the cancer journey. Acceptance grows knowingly from our mutual experiences as survivors and caregivers. Our depth of understanding and compassion has been forged in pain and sustained through tears.

  4. angelika Says:
    October 8th, 2009 at 11:35 PM

    Just wanted to say I really like reading your blog – I love your writing, even if the subject is a tough, yet important, one.

  5. Stuart Says:
    October 9th, 2009 at 12:09 AM

    Ugh, so I had this really super long response all typed out and then I got an error when I submitted and it’s all gone. LOL So here goes trying to remember what I wrote.

    This is something that’s very close to me. I’m a 29-year old guy whose partner just died 4 months ago from lymphoma. The young adult cancer community was extremely great to us…giving us support, love, encouragement, help in finding new treatments, etc. It truly was like a second or even third family. But as soon as things started going bad…and then when it was the end…that second or third family disappeared. Poof! Gone. No support. No love. Nothing.

    That didn’t bother me at the time, though. People are busy, I get that. Here’s what got me: Much of the young adult cancer is all about the fight, the drive to beat cancer and get well. I’m all for that. Of course I am…who wouldn’t be!? I was all about the fight when my partner was first diagnosed on May 28, 2008. I was right beside him every step of the way. I fought hard right alongside him. And exactly one year later – to the day – when he took his last breath…I was still there right beside him fighting to make sure that he died in peace.

    But when he died, I wasn’t done fighting. I’m STILL not done fighting. Just because he’s gone doesn’t mean my battle with cancer is over. Far from it. This disease took the love of my life…and I’m NOT going to give up trying to kill it. But no matter how fired up I am about that…lately it keeps getting thrown back in my face by individuals and organizations who don’t seem to want the help of a widower. And you know what that makes me thing? Because he didn’t win…because he died…his fight didn’t matter. My fight didn’t matter. They make me feel like the last year of my life – the toughest thing I’ve EVER gone through – didn’t matter. And that just sucks!

    I understand that for those who are still trying to beat things thing…they may not want to hear from those of us with such sad endings. But here’s the thing… don’t judge me because my story has a tragic ending. Don’t think that I don’t want you to make it. Don’t think that because his fight is over that I’m just going to forget how cancer changed my life. I want you to make it. I want you to beat this thing. I want to be the cheerleader by your side, high-fiving our way through all of the little victories.

    I want to see for myself the positive side. I want to see that people can beat cancer. I need to see it. I need to experience it. I need to keep fighting for the man I love because he can no longer fight for himself…because that is how I will know that he hasn’t died in vain.

    (this wasn’t nearly at all what I wrote before – which angers me LOL – but this is the jist of it…oh well)

  6. Kairol Rosenthal Says:
    October 9th, 2009 at 12:27 AM

    I don’t know what you wrote before Stuart, but this one brought a little lump to my throat. You kinda cut through it all and leveled the playing field – that it is not about “winning” or “losing” but it is about rooting for each other no matter what the circumstances. Thanks. Winediva – in response to your comment – I think I am the opposite of you – I think I often tend to gravitate to people who look like they have less verve. I always wonder if my connection will be more helpful to the more scared, lonely, down and out seeming patients. I am also sometimes a tiny bit afraid that super animated people are going to start preaching to me about a reason for everything happening and how happy they are that they have cancer. This is just judgmental fear on my part, because even when I talk to what Tracy in my book refers to as the “cheerleader cancer types” I can still make great connections with them and have meaningful conversations. Hell, you’ve got verve and you are one of the coolest cancer patients around!

  7. Mikha'el Says:
    October 9th, 2009 at 9:36 AM

    As your book title states, everything changes…unfortunately that means some don’t survive. The conversations need to be fully open to all, even those facing death. Appreciate your honest writing.

  8. Andy Fox Says:
    October 9th, 2009 at 1:03 PM

    I get a awkward look from people with cancer as well as people without cancer, when I tell them that I am no longer seeking treatment. They always ask me about what length my remission is in and I have to point out out to me that I’m not in remmission. The conversation always ends awkwardly as we both try to find polite topic changer to ease the tension. Instead of pretending that the next logical place for a conversation about terminal cancer is to end with discussing the merits of the days weather, I have always wanted to say “I’m not giving up on hope, I’m hope to enjoy what I have.”

    I understand death is frightening it scares me as well, but it doesn’t mean I’m dead yet, so please don’t treat me as such.

    Thanks for letting me rant some what

  9. anonymous Says:
    October 9th, 2009 at 1:09 PM

    I have posted on here a couple of times. My husband has End Stage Renal Disease, which means that he is on dialysis. Because of his illness, the disease often returns in a transplanted kidney and destroys it. Thus, a transplant (one already failed) is a major gamble. So, what keeps him alive is dialysis; he is 30 years old.

    I know that this site is a cancer website, but I keep looking at it because I find a lot of the concerns you raise similar to the ones we are dealing with. Any kind of life threatening disease at a young age changes you. I hope that I am welcome in this community, even though the illness that touches my life is different.

    I live in a major city and I’ve looked for support groups. I even called the National Kidney Foundation in my area, asked about dialsysis related support groups and I was told there were none. I’ve thought about a general caregiver support group but the focus of the ones I’ve seen are for individuals taking care of an elderly person. I know the concerns may be somewhat similiar, but the reason I cannot imagine going to one of those is because I burst into tears anytime someone says to me, “But, you’re husband is so young to be having these issues.” It leaves me feeling so defeated — that we are in the unlucky minority.

    And I think being a spouse of someone with a chronic illness places a different type of stress. Like Clarissa discussed above, I go to all of the doctors appointments with my husband; I’ve sat in the waiting room during numerous procedures. And I watch him do dialysis every night at home. I want to make things better for him, but I realize I have no control over this disease. And that is truly devastating. Our lives are so different from our peers, and sometimes it can feel rather lonely.

  10. Kairol Rosenthal Says:
    October 9th, 2009 at 3:11 PM

    Andy, I think your rant gives us all a ton to think about. Thanks for sharing it. It can be so hard to bring ourselves to have these real and sometimes uncomfortable conversations about death with people who are so immediately facing it – but hell, the way I look at it is that it is a complete luxury for me to not be facing death in this instance, the least I can do is try to be open and honest with others who are.

    Also, to the wife of 30 yr old end stage renal disease patient – thanks for being here. I often get emails from young adult patients with many diseases that are not cancer. My book and blog are for everyone. One resource that I list in my book is youngcancerspouses.com I don’t know how receptive they are to spouses caregiving for other disease types, but I certainly hope they would welcome you and all you are dealing with. They have a great discussion board for partners only.

  11. anonymous Says:
    October 9th, 2009 at 6:42 PM

    I’ve been on both sides of this fence. Long before my own diagnosis, I lost friends and family members to cancer and I learned how terribly important it was to them to be able to discuss their death in an open and honest way.
    I now have late-stage cancer that will likely kill me sooner than later. I have accepted that and live my life as normally as I can. I don’t focus on my death, but I don’t ignore it either.
    I have had an ongoing problem with people who hold the belief that accepting my death means that I have a “bad” attitude, or I have “given up”. This has happened alot, and it has ruined some friendships and left me often wanting for better understanding.
    Because of my experiences, I have made myself available to others with advanced cancers as a peer-support person (it was a significant challenge to even find a non-profit which provided TRUE peer matches – i.e. allowed stage 4 patients to provide support for other stage 4 patients). In this capacity, I have lost 3 people this past year from the very same cancer I have, 2 of which I became very close with. It was at the end of their lives that they needed honest understanding and support more than ever, yet it was the time that support was the hardest to find, even from their own families.
    Death is a part of every person’s life. It comes in many shapes and at different times, but we should never be so afraid of it that we leave people alone at a time when they need us the most.

  12. Pat Steer (Gaelen) Says:
    October 10th, 2009 at 7:03 AM

    I could have written the post from ‘Anonymous’ from Oct 9, 6:42pm – especially this part, “I have had an ongoing problem with people who hold the belief that accepting my death means that I have a ‘bad’ attitude, or I have ‘given up’.”

    I’m not end-stage; my stage IV cancer has gone into remission (again.) But earlier in my treatment, when it didn’t look like surgery would ever be an option, I had to come to terms with how much chemo/treatment I wanted (and didn’t want). Once I did that, I took a lot of heat in a couple of colon cancer support communities, hearing exactly the same accusations of giving up and having a bad attitude. It even inspired some pretty vitriolic threads questioning whether my admittedly-realistic approach could co-exist in the same threads with what is perceived by many as ‘hope.’ The version of hope that is nothing less than a cure is the place many people start from; the reality that most Stage IV CRC patients won’t survive was/is incompatible with that perspective.

    And from that place, while caregivers who’ve lost a partner or parent or child are always given the ‘of course you’re welcome here’ answer, they’ve all indicated that while they miss the friends they made in the community while the patient was in treatment, they feel out of place with no patient as part of their current story.

  13. Alli Says:
    October 10th, 2009 at 12:24 PM

    I am an end stage cancer patient that has surpassed my “death day” expectations several times, but I know my time is near. I don’t know if it is weeks or months, but I listen to my body and I feel it shutting down.

    Like many others that have commented, I have had a lot of support from friends both in and out of the cancer community throughout my treatment, including health professionals. Once treatment stopped working and was told there was nothing they could do that would be curative. I was encourage to do treatments that could give me more time, but would most likely make me very sick and weak. I decided that I wanted to focus on quality of life and have my last days me spent the way I wanted instead of being debilitated. Many people saw this as giving up, including my health professionals. I believe that especially for young adults the community focus is fight, fight, fight and feel that young adults are too young to die. I did not give up, I chose to live. My timeline is just shorter than most, but I was determined to make the most of everyday.

    But the reality is that I am dying. I have noticed that many of my friends have pulled back as I have gotten sicker and do not want to talk with me about my feelings around dying and end of life issues. There have been a few exceptions in this which I will talk about. There are very few resources out there to help a young adult in my situation. I wish there was a guide book for the patient and their loved ones and for the professional community that discusses the issues they face and suggestions of what they can do to be supportive.

    I go to a young adult support group once a month. This is made up of young adults with cancer that range from in treatment, just finished treatment, in remission for several years and me. When I first joined this group I was in treatment and found a lot of support from those who have “beat” the fight as well as those that were experiencing the side effects of treatment. As I got sicker though I felt like “Debbie Downer” whenever I talked about what was going on with me. As the months have passed I have been faced with much different issues than the rest of the group and wondered in I should stay in the group. While I got a lot out of their support, I did not want to hinder their own journey. I brought this up at a meeting and was unequivocally told that they wanted me to stay in the group. They said that it was a privilege for them to me to be there in this stage of my life and while they did not always know what to say, they wanted to support me. We have also talked about how they wanted to be notified about my health status when I could no longer come to group and ultimately about my death. I am so thankful for this group and the support they provide. I wish everyone had such a group to be a part of.

    I know if is hard for cancer patients that are going through treatment or even those that are in remission to hear about someone that is having a different outcome. I realize positive outlook is important during treatment and many can not deal with the possibility they will not survive. However, as other people have written, the cancer community as a whole focuses on prevention, treatment, research and cures. They will quote the numbers of patients that are being diagnosed each year and the numbers of those that are dying, but what are they doing to support those that are dying and their caregivers?

    It is hard for me when someone says that a person has lost their battle against cancer. Someone told me recently that I am not a survivor, because I will not survive cancer. I hate labels like survivor or victim because they have so many different connotations. I am a Survivor. I have survived the last two and half years of chemotherapy, radiation, countless side effects and being told the treatment has not worked. I am fighting to the end and will never give up. As the Lance Armstrong Foundation motto is LiveStrong. I am Living Strong, and I am dying Strong.

  14. tara Says:
    October 10th, 2009 at 3:59 PM

    Alli, I love how you put things in the above post. And I can’t believe someone told you you weren’t a survivor! I want to smack them for you! I’ve always hated “survivor” or “fighter” labels. Just cause one person’s body happens to respond to treatment and another’s doesn’t, does not mean she is more of a survivor or fighter than the person whose is an “end stage” patient. the end stage patient can be 10x “stronger”, it has nothing to do with whether the cancer responds to treatment.

  15. charissa Says:
    October 10th, 2009 at 9:07 PM

    Wow. SO many amazing amazing amazing comments I dont know what to say or where to start.

    I always hate(d) the implication that was husband wasnt a “survivor”. He lived with cancer for 10 years, way longer than he “should have”. Id say thats surviving. He did what he needed to do. In the end, he didnt “give up”, he just died. He didnt “lose” anything. Im not sure how to resolve the issues around the jargon, are there better words we can use? More accurate? Or are all of these words and concepts generally acceptable?

  16. Kairol Rosenthal Says:
    October 11th, 2009 at 11:29 AM

    Thanks all for contributing to this really juicy dialogue. 1.) Anon. 10/9 – Did you ever find the organization that made TRUE matches, including those who are stage 4 – and if so, please share with us the name of this organization. 2.) From Alli’s post about others thinking that talking about death is not positive for other cancer patients. Your comment has made me rethink what I wrote above, my statement that of course it makes sense that others in treatment or in remission would be freaked out by talking to end-stage patients. While this is true for some, I see from your comment that perhaps other patients could also gain a lot of positive hope in talking to end-stage patients too… Not to put dying patients on a pedestal or turn you into our beacons of hope – but why not look at your situation the way we look at and find hope in anybody’s struggle: You are facing a really hard time and we can learn from your ability to be honest with yourself, be present in the midst of scary stuff, be resourceful and ask for what you need in the midst of a really hard time. We, I, the cancer community needs to get past the big ‘D’ and see the human situations that end-stage patients are facing that apply to our own struggles with cancer and learn what we can from them. Isn’t this what community support is all about? Sharing our hard times so we can learn from each other and find new ways to get through? 3.) Charissa – When I interviewed your husband in Everything Changes, he talked a lot about how he loathed the word ‘fight’ and all of the battle metaphors. Instead he looked at it as ‘work’. I find comfort in using blunt medical terms: patient, person with undetectable cancer, in remission, end-stage, in hospice, dead, died. For me these terms are accurate and avoids the problem of slathering onto someone’s life my own emotional trip about who I think they are, were, or should be. Keep the comments coming everyone.

  17. Pat Steer (Gaelen) Says:
    October 11th, 2009 at 12:47 PM

    Kairol, you asked “Anon. 10/9 – Did you ever find the organization that made TRUE matches, including those who are stage 4 – and if so, please share with us the name of this organization.”

    I’m not anonymous, but I can share the name of an organization which tries to provide true match support – the Colon Cancer Association Buddy line tries, as much as possible, to match caregivers with caregivers, and new patients with others who are the same stage, who are facing the same treatment(s) and surgeries. As a stage IV buddy who has had both HAI pump therapy and liver resection, I’m usually paired with patient who are newly dx’d stage
    IV, and/or at the treatment point where HAI or liver resection are now an option. Occasionally I’m paired with a caregiver of a stage IV patient, but most often it’s with patients. And like Anon. 10/9, I’ve lost several of my buddies — 4 out of 6 in the last four years. I’m also part of a recurrent cancer support group which meets face to face twice a month. I joined that group because, for one thing, it helps me cope with being a buddy. Survivor guilt is enough topic for a whole other post. At any rate, CCA’s buddy program is one source of true-matches:

  18. frank Says:
    October 12th, 2009 at 9:35 AM

    I love this post and the conversation it’s generated. There are so many things that seem taboo in the cancer world, but there’s really no reason for them to be. I hate how hard it sometimes is to talk about the tough issues surrounding diagnosis–fertility, mortality, etc. Thanks for doing it here Kairol!

  19. Sarah Wenstrand Says:
    October 12th, 2009 at 2:55 PM

    Hi All,

    I’ve appreciated this post and the discussion that has come from it. I often question, or check in, with my own feelings as a young adult cancer widow still highly involved in the community. I was also a young adult cancer girlfriend, bride, caregiver, childless couple, and countless others, so widow isn’t the first label or awkward situation cancer forced me to face. We had to make our delicate or clumsy way through those but widow is one that will stay with me for the rest of my life, now without Mike. There wasn’t as active or connected of a young adult cancer community during his treatment and I didn’t have time to advocate for anyone else but him, so this is something I can do now. And what it comes down to is that I’d prefer to be there for others who might be going through similar or same things, either in the foreground where people might have to deal with the reality of this insidious disease, or the background where I might feel less awkward at times.

    Mike was a guy who, despite an amazingly positive attitude, willingness to undergo any procedure that might help him, and decision to live without treatment that would leave him in the hospital for his final days, died after living courageously with cancer for over eleven years. When I get wrapped up in who I am to this community, who I may or may not be serving with my involvement, or how I might be a “downer”, it helps to think of Mike and the way he approached his disease — with humor, with irreverence, with dignity, and with an attitude that transcended life. That spirit remains and reminds me why I’m still involved.

  20. Luke Says:
    October 12th, 2009 at 5:21 PM

    “I did not know what to say to him. I felt awkward and blundering. I did not know how I could reach him, where I could overtake him and go on hand in hand with him once more. It is such a secret place, the land of tears.”
    ~Antoine de Saint-Exupéry~
    The Little Prince

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