The bond between cancer survivors is strong. That's why it's so hard when we lose each other

PhillieG
PhillieG Member Posts: 4,866 Member
edited July 2016 in Colorectal Cancer #1

Some may find this post inappropriate, others may not. I thought it sums up (yet) another issue we all have to deal with.

 image

 Photograph: Alamy

 ‘I’m constantly worried about losing the people who best empathize with me, and when I’m not worried about them, I’m expected to worry about strangers, or about the possibility of a recurrence.’

I’m taking a weekend trip to Canada next month. While I’m there, I’m staying with my friend who has cancer. I was supposed to have lunch the other day with a writer I work with this week who canceled because of cancer. Last week, on my way to meeting my grandfather for dinner, I stopped en route to visit another friend with cancer.

There hasn’t suddenly been a sudden spike in US cancer cases – in fact, deaths have been dropping for decades. But fewer deaths mean more survivors – and longer survival times – and since my own cancer treatment nearly five years ago, I have found that the cancer veterans always manage to connect. I have yoga friends, writer friends and online friends who are also cancer friends. This is not by design, but it happens. And when a disproportionate number of friends and acquaintances have a life-threatening illness, the odds of avoiding grief aren’t in your favor.

Part and parcel of surviving cancer is knowing, and loving, far too many people who won’t be as lucky.

This makes some kind of sense: people go to support groups in the hope that those who share their experiences can empathize on a profound level. And anyone with experience close to major illness and trauma knows that there’s life before, and life after, and they’re pretty much skewed lines.

This may be especially true for cancer, which leaves a psychic scar that, inscrutable to the uninitiated, lingers years past the diagnosis and treatment. It’s all starker in the young adult cancer community – we’re often younger than our waiting room comrades by decades, our friends and lovers have little personal experience with confronting mortality, and we have to consider how treatment might impact fertility. That’s why I’ve gone to young adult cancer social outings, on a young adult cancer surfing trip, and it’s why I’ve been known to spend Breast Cancer Awareness month snarking with my online cancer pals, railing against the ubiquity of pink ribbons. What, from the outside, can look like a morbid fixation on death, excessive gallows humor and a lack of passion for quotidian happenings is, those on the inside know, just rejiggered priorities and lingering trauma.

Many of us get a lifelong sentence of scans and doctor visits. Civilians have a strange urge to relate every single cancer tale they stumble across, as though we all want to hear about other people’s cancer woes all the time once we’ve had it. So I’m constantly worried about losing the people who best empathize with me, and when I’m not worried about them, I’m expected to worry about strangers, or about the possibility of a recurrence. I feel trapped in some pink hamster-wheel cancer hell greased with heartbreak. And there’s no exit.

But there’s a flip side to the grief cycle of survivorship: everyone who gets sicker instead of better needs empathy more than I don’t need pain, because I’m the lucky one – I’m healthy, and I’ve had wonderful, caring friends encouraging me the whole time, including people I’ve only known digitally, and people who live far away. Returning the love is the least I can do. But it’s hard to explain this cumulative, ongoing anguish to non-cancer folks, who don’t necessarily understand the stakes of the whack-a-mole game we’re all playing from our first moments on Earth. And honestly, the longer it takes people to develop that empathy, the more peaceful their lives will be, so I don’t hold it against them.

So we carry each other in our parallel cancerverse. And if fellow travellers die, it becomes my responsibility to live for them, too. So while living with impending sorrow can make it tempting to decide that nothing matters, that’s no longer my call. I experience joy and love and ice cream not just for myself, now, but for Cait, and Jody, and for Karen. As their cancers advanced, all of them continued to support and reassure me about my own far more trivial anxieties.

On days it’s just too hard to live for myself, I go on for them.

Link to original article

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Glad you posted this

    It is all so true.

    It is the price we pay.

    But pay it we do.

    Because someone here held their hand out to us without reservation.

    Those gone are not forgotten, as long as we carry on their kindness and love.

    Marie who loves kitties

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #3
    All too true, I went to Lake

    All too true, I went to Lake Havasu over the holiday to pick up my granddaughter and told the relatives I wanted to celebrate a bit, closing on 2 years NED with exams being extended to 6 months for the first time in nearly nine years. It started fine with an evening of toasts and looking at stars I can't see back in SoCal, but the next day at my nephew's bbq, I began to feel so removed from the rest of the group, the mixing, the small talk, seemed so vacuous. I kept thinking about what I've been through, what others are going through, and I was jealous that they could lose themselves in the moment, and I somehow, couldn't. I'm supposed to carry on for Cindy, and do the stuff we loved doing, and now I find I may not get back to that life or the person I thought I was. A few family, and people here on the blog may be all I can even relate or open up to anymore, so if that comes with the risk of loss, loss is something I now know and carry.....................Dave

  • John23
    John23 Member Posts: 2,122 Member
    #4
    A short (personal) story

     

    I'll not only never get back the life I had, all my future has been taken away as well.

    When we are robbed, gunpoint or not, we have been victimized. When a woman or man has been brutally raped, they have been victimized. When you have lost personal effects of any kind to anyone that has no regard for your personal losses, you have been victimized.

    Cancer does all of that, and more. It takes and takes and takes, and is never forgiving. You may rally when you think you've beaten it, but it returns when you least expect it to, and it again ravages your body and soul unmercifully, and beyond the average comprehension.

    It doesn't matter if you take the harsh route of radiation and chemical therapy, or the more softer route of natural medicine (or TCM), the chances of cancer returning to kill you are very high. You simply cannot predict or avoid the recurrence; it is what it is.

    I have lost so, so many personal friends, neighbors, and family over the past years due to cancer. Some succumbed to the rigors of treatment, some from the advancement of cancer that took it's toll over their bodies, but they're gone. Some felt I was an exception; some sort of a very miraculously lucky individual, and others gave credit to the path I took, but I'm at the same spot in life anyway..... facing a demise I have no control over.

    I was victimized. I never saw it coming and I couldn't avoid it if I had a chance to. It's taken years of my live since 2006, and it's taken my intestinal tract, leaving me vulnerable to every nuance of the lack of a digestive tract.

    I now (since November of 2015) have a recurrence. A major tumor in my "rectal stump". My plea for a colonoscopy/sigmoidoscopy fell to deaf ears. It wasn't needed, I was told. The symptoms I had were said to be due to the normal degradation of the rectal stump. It turned out to be a tumor, and it grew into my bladder... possibly into the prostate and rectum, and perhaps further. I was slated for major surgery for a "total pelvic exentoration". Further study indicated that the massive surgery was not necessary, that if the tumor was removed, I would be spared the loss of everything except the rectal stump, bladder and possibly prostate, etc. No chemo, radiation, or anything else was necessary for this surgery. The tumor would be removed, and I will only require a nephrostomy for my remaining life (I have one now)

    The surgeon that was to do the operation had to take a sick leave. He went out prior to March and will not be back until August. The surgeon filling in will not do the surgery. He claims to be bound to the Tumor Board's requirement for Chemo and radiation treatments. The original surgeon (and others I conferred with) did not feel chemo etc was necessary; they felt it was needless and would do more damage than good. The surgeon refusing the surgery did not agree and claims he has to adhere to the Tumor Board's plans.

    I was told in November that if the tumor is not taken out ASAP, I could expect a few months to a year of life left. The tumor is still in me. I seriously doubt any Herbal remedy can knock down a tumor this size, but I will not go against the surgeons that feel chemo and radiation is a very poor choice in my circumstance.

    In China, they provide herbal remedies intravenously, or by injecting the formula directly into a tumor. They have had great results with their procedures. We can not do that in this country, and I cannot afford to travel. And if I could, I would not.

    I am presently taking an herbal formula that may or may not be of benefit. I do not have a complete digestive tract (only less than 25% of my entire intestine remains), the lack of absorption requires me to take hydration daily at 3 liters per day via a PICC line. Any medication should be taken via IV, since there is no way to know what chemical will be absorbed and what will not. My intestines left will not uptake Magnesium or B12, among a host of other required chemicals that we need to survive. How much of an herbal compound will be absorbed? Totally an unknown factor. I had a nearly complete intestinal tract in 2006, and the herbal formula I took (see the blog) worked well (I stopped taking those herbs for that purpose in 2008/9 after continuous "clean slates"). I was called "the miracle man" by my physicians. But I have been robbed of my intestines due to surgeries to remove adhesions causing blockages. I had been victimized once again.

    Live for the day. Make the best of everything that you are able to. Cut yourself free of the burdens of life; of the individuals that give you more grief than you can tolerate.

    We all miss those that fell along the way, we can not help feel the loss. We mourn for each one and honor them for their valiant fight for survival. But it also harshly brings to our attention, that we too are fighting for our survival, and we too are as vulnerable as those that have fallen. It makes me wonder at times if the sadness every stops.

     

    Make yourself number one. Life's short and you're gonna' be "number two" for a lot longer.

    Be well.

    John

     

  • ron50
    ron50 Member Posts: 1,723 Member
    edited July 2016 #5
    I have always said that surviving survival is not easy

         I have not found anything to change my mind.  One of the many things that I have learned during survivall is how to deal with death and dying. I was there at the end with many of the people I went thru chemo with. It is not easy watching friends pass but it would not have been fair or right not to be there for them. As one of my best friends from our chemo circle said, I may be dying Ron but I need my friends more now than ever. I must admit that I do not go looking for cancer sufferers to befriend but I don't dodge them either when our paths cross. I still feel each and every death of acquaintances and friends particularly those that I have made here on CSN . I guess the thing I have learned most about cancer and dying is that we have no choice but to accept that not all of us will make it. I am certainly sad when someone passes but it no longer puts me into the deep depression that it did when I first joined here. We all seem to have our own way of dealing with stuff , some don't stay here after they are feeling better others do and I am happy that they do as It makes others feel better about their situation. There is no handbook on how to deal with cancer , there is a handbook for everything else  but not cancer. I don't even know how you would go about it or perish the thought, what you would call it. One of the things that I have always thought strange about cancer is that no one in the mediacal profession seems remotely interested in long term survivors. If we survived ebola they would have us in a lab doing tests before we knew it.

            My best wishes go out to Phil for the way he has handled cancer as a chronic disease and for John for never parting with his sense of humour in the face of a daunting journey thru cancer, best of luck guys....Ron. 

  • NewHere
    NewHere Member Posts: 1,428 Member
    edited July 2016 #6
    So True

    I have kept my discussion of having cancer to a very limited few.  With one exception.  When I find out someone has or had cancer.  There is the immediate bond.  And then there is the potential of loss.  There were a few people here who have passed away since I joined.  I never met them other than on this board.  But they helped me.  And I burst out in tears upon reading of their passing.  And I still think of them almost all the time.

    And the part of knowing of the potential time bomb inside is something else for sure.  Everytime I have a port flush, blood test or scan coming up, my mood changes even if not consciously thinking of those things.  And this week a scan to follow-up on bloodwork which indicate a potential of another cancer, not CRC.  

    But all of you in this thread (and others) are truly amazing individuals who have gone through so much that I feel almost guilty in my cancer - one surgery, 6 months of chemo that was handled pretty well and now the last physical vestiges of chemo seem to be resolving in neuropathy in hands and to some degree the feet.  

     

     

     

  • Mary1864
    Mary1864 Member Posts: 39
    edited July 2016 #7
    Agree!

    I do not post very often, but I do come back and check up on everyone!  I know that since my original diagnosis, this forum (the wonderful people) was welcoming and honest To me.  I will never forget and always be grateful.  I am done with treatment and feel like I struggle more now emotionally than I did during chemo/rad.  And from this forum, i know I am not alone.   

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