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A man sitting on a couch looking at his phone with the Twitter bird logo sitting on his shoulder

Cancer: It Can Change a Thing or Two

It has now been nearly six-and-a-half years since the awful moment when I was told that I had incurable blood cancer.  In the ensuing time, I have had many difficult days and months (and a couple rough years as well), not the least of which was the six months of my life that I was forced to forfeit to chemotherapy.  What I have learned along the way – among many other things – is that having cancer forever changes a person.  And these changes are not always what one might expect.

Chemo brain, relationships, and constant worry

Of course, there are many readily obvious ways in which having to live with cancer alters one’s life.  There is the constant concern over – and focus on – one’s health, the ramifications from chemo brain (which can cause one to forget what he said just a moment before), strain on family and friends, the ramifications from chemo brain and, last but far from least, the negative impact on the number of birthdays one can count on celebrating (along with the attendant loss in cake-eating opportunities).

Changes to body composition

Yet, often it is the less overt manifestations of living with cancer that can change a person.  For example, prior to undergoing chemotherapy, I had to make a major wardrobe adjustment.  As my cancer progressed – and the number of useless white cells joining the party kept multiplying – I noticed that none of my collared shirts fit me any longer.  This was due to a two-fold change in my body composition:  an ever-expanding neck from too many throat-based lymphocytes along with a winnowing of my waist as these burgeoning white cells churned through loads of calories.  (It’s an effective diet to be sure, but I am not sure I would recommend it.)  I must say my tailor was quite perplexed by the changes in my proportions.

Impact on social interactions

Another unexpected result of having cancer is its impact on my social interactions.  I would not necessarily classify myself as a recluse, but I am certainly not actively courting new friendships.  But when one has the misfortune of cancer, and that one is somewhat of a misanthrope to begin with, there is always the “opportunity” to extricate oneself from unwanted social occasions.  Particularly if anyone at such a would-be gathering has been known to so much as sneeze within the last 96 hours, that is a perfect opportunity to avoid any undesirable get-together.  I find this to be most useful when it comes to family affairs – a dicey proposition under the best of circumstances – and whenever there are school-age children involved.

When everyone else is enjoying exchanging pleasantries and germs, another change in my lifestyle can come to the fore:  nap time.  I have always been a firm believer in napping, in large part because I do not sleep well at night (something having a cancer diagnosis did nary a thing to improve).  Whether it is from still trying to rebuild my decimated immune system or just the stress of all that having cancer entails, it is tough for me to make it through the day without catching at least twenty winks.  Fortunately, our couch is extremely comfortable and is perfectly positioned for me to doze off while watching the television.  I am a father, after all.

A surprising cancer-related change: My new love of social media

But perhaps the strangest result from having cancer is my newfound love for social media.  As noted above, a people-person I am not.  Yet, after living with cancer for so long, I found a need to be in touch with others who share my misfortune.  I considered support groups, but that seemed like too much of a commitment for me.  So, much to my surprise, after the urging of some real-life friends, I got on social media.  Initially, I joined some groups on Facebook for others similarly afflicted, but I found that to be unsatisfying, in large part because there were a great deal of people acting as if they were oncologists but were really just turmeric growers.  I was thus about to give up on my short-lived experiment with having virtual friends, when I did the previously unthinkable:  Twitter.

Up until this point, I was convinced that Twitter was just a means for athletes and actors and the like to say something in a fit of pique that would be misconstrued and which would result in work for the tweeter’s PR team to try and explain away.  So imagine my surprise when, as I started sharing my experiences with cancer, that I found others on Twitter – of all places – to whom I could completely relate.  Even more importantly, I found that the cancer tribe on Twitter was full of extremely supportive, non-judgmental and compassionate people.  And I have, despite myself, made some wonderful friends on Twitter, although I am not sure how close @julia12345 and @S#!tHead99 and I truly are.  But they follow me so who knows!

Grateful for the Twitter-verse

Many of us with cancer have sadly lost or, at a minimum, become somewhat estranged from our physically-identifiable friends.  Cancer is tough, and that encompasses tough on personal relationships.  And as someone who is not overly-skilled at maintaining friendships, I was doubly-impacted by my diagnosis.  Thus, I feel so fortunate to have discovered the Twitter-verse of friends to whom I can truly relate.  It has greatly ameliorated the loneliness and helped to fill the void left in my already wide-open dance card.  And the longer I have been on Twitter, the less lonely I have become.  I even have a fair number of followers, the number of which seems to grow most rapidly with the less I tweet.  Go figure.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Yolanda Brunson-Sarrabo moderator
    1 week ago

    Im glad you found your way with social media. It seems to be the new way to connect as many feel the same as you with commitment and attending support groups. Wishing you the very best!

  • russp
    1 week ago

    Wow.
    great writing my cancer fighter friend and funny too!
    I’ve got AML but 15 years since stem cell transplant
    still have bad chemo brain/short term memory loss and poor sleeping like you but developed almost super human physical endurance in long distance ocean swimming in my late fifties….wtf?
    keep up the good work and cool self rediscovery
    best
    Russ

  • Deb Wesloh moderator
    3 weeks ago

    Thanks for sharing your story and how cancer has changed you. I liked your perspective on social media. Social media has been kind of a love/hate relationship for me. However, my interactions with others with polycythemia on different related forums has been a life saver. This is especially true since PV is somewhat rare and it’s hard to find face-to-face support groups. It does help one not feel quite so alone. Best of luck to you. (Deb Wesloh BC Moderator)

  • Ann Harper moderator
    4 weeks ago

    @JeffNeurman I have never been on Twitter, but after reading your post, I might try it. Thanks for sharing your story.

  • Susan Gonsalves moderator
    4 weeks ago

    @JeffNeurman–There’s so much of this I can relate to as well. I’ve for sure been limiting the amount of social interactions of a big nature for my own sanity and not stressing so much over the ones that got away–the friends and family who have distanced themselves. Always embrace the nap when it is needed as well! I wish you the best.

  • Ramae Hamrin moderator
    4 weeks ago

    I can relate to this on so many levels, Jeff — the body changes, risky social interactions, and the oh-so coveted naps. I felt the same way about Twitter a year ago and never would have believed that social media would have begun to fill the void that estranged friends and family have left behind. We can share our stories, fears, and victories without the worry of a single cough or sneeze. I’m so glad you wrote about this supportive community that many may be unaware of!

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