Chapter 3: Friends & Family
Talking about, friends, friends, friends.
Knocking at your door, friends, friends, friends.
That’s what friends are for
Friends when you’re young or old,
Everybody needs, friends, friends, friends….
I am sorry that your friend or family member got sarcoma. Not so much am I sorry for you, rather, I am sorry that they are going to have to take this journey. That was very cool of you to buy this book and read this chapter so that you have some suggestions from the lifeguard chair as to what may be helpful and what is not so helpful.
This book is designed to be a deep dive for sarcoma people and their friends and family, so please make sure you don’t cheat and only read chapter two here. Were I you, I would absolutely read the chapter about how to read peer reviewed journal articles because medicine is completely and totally evidenced based. This is why when you have pneumonia, the insurance company will not pay for leeches, if your doctors wanted to bleed you like they bled people with hundreds of diseases back in the day. There is no peer reviewed journal article that says bleeding someone with leeches will cure their pneumonia or alleviate any of the symptoms. Therefore, the insurance companies will not pay for it and if the insurance companies will not pay for it, then medical professionals will not do it. Because they, like you and I, like to get paid when they work. Your belief systems and my belief systems do not matter one little bit in evidence based medicine. How you and I “feel” about something does not matter one little bit in evidence based medicine. It is all about peer reviewed research, so read the “how to read peer reviewed research” next. Reading that chapter will help you understand why coffee enemas do not cure cancer, nor does any diet or any of that bullshit that slapdick Chris suggests in his bullshit book where he lies about curing his own cancer.
The tee shirt below is a cool tee available somewhere on Vint Cerf and Al Gore’s InterWebs. There is no link to where you can buy it in the book because I am writing this to fill the hole in sarcoma books, not to make money. Plus, I despise when The Man tries to buy writers. Damn The Man, even if I am…technically…The Man. Plus, I am not a fan off black tee shirts. I was, back in seventh and eighth grade when everyone was wearing black AC/DC, Kiss, and Led Zeppelin tee shirts. However, that lost its allure when I got to college and I only buy white and heather grey tee shirts these days. Back to that shirt. That shirt explains exactly what your friend or family member is going through. There is an entire chapter on pain here because sarcoma, compared to many other common cancers, can be ridiculously painful. The tumors removed are in odd places, they have to take super wide margins when they remove them, the systemic treatment regimes are some of the strongest in cancer care with horrible side effects, etc. This is your friend or family member’s life for a few years. If they are a metastatic sarcoma patient, this shirt represents their new life until the day they die, and they will die because no one with metastatic sarcoma lives. It has a survival rate of 0%, which you will see in the chapter on metastatic thingies.
What does this have to do with you? You have one job as the supportive friend or family member: remove as many bags of rocks as possible from the patient and do not ever add any bags of rocks. Simple job, yet as an active observer of friends and family for years, a job many fail. Say this out loud when the Tripping Daisy song ends. Remove. Bags. Of. Rocks. Add. None.
Let’s do a random list of questions you should never ask and comments you should probably never make. This is not stack ranked, nor is this complete. This list is just top of mind and my top seven pet peeves. Like stopping at the top of an escalator and looking around. Only morons stop at the top of an escalator and look around, thereby inconveniencing everyone following them. These are the cancer talking point versions of stopping at the top of the escalator and looking around.
- How did you get this sarcoma? If you have ever asked that question of a cancer patient, what was your goal? If the goal was that you are deathly afraid of cancers of all times and you ask “how did you get this” of all cancer patients to add to your list of things to avoid, then the question could possibly be acceptable. But not really. Half the people out there will hear it in an accusatory fashion, as if they did something wrong. Sarcoma is a rounding error in genes and the result, generally, of a gene translocation. Nothing more and nothing less.
- Have you prayed on this yet? This one would depend on the deity and which of the 79 larger religions the person adheres to in their personal life, however, given that the person’s chosen deity probably put the cancer in there, the odds of them wanting to immediately remove it is less than zero. If a deity wants you to have cancer, you are going to HAVE cancer. Unless you can find a more powerful deity that can countermand the sarcoma. Like the Christian Bale character Gorr the God Butcher in the 2022 Thor flick. No one has ever had their sarcoma cured through prayer in this universe and all tangential universes, so praying on it is not going to do anything. Plus, unless you are super tight with that person, you never know what their background is. They may have escaped from Warren Jeff’s FLDS cult and religion really turns them off.
- Have you looked into holistic treatments or cures yet? This is tantamount to asking the person if they want to die faster. With sarcoma, everyone needs to get that primary tumor out and generally as rapidly as possible. Leaving that primary tumor in place, especially is there is significant vascular involvement, is a great way to get mets down the road. Given that 100% of “holistic” treatments and “cures” are as useful to cancer as rubbing hot apple pies on your head (each has a 0% improvement in overall survival and a 0% improvement in preventing recurrence), suggesting to your friend that they investigate holistic voodoo crap is very much akin to wishing for their death. The reason there are no peer reviewed studies that show that “holistic” things improve overall survival in literally any cancer has nothing to do with evil big pharma and it has everything to do the fact that they do not work. This goes for any diet, as well. The reason MD Anderson, Sloan Kettering and the Mayo Clinic have stand alone pages explaining very, very clearly that precisely zero diets prolong lives. Which is why strict vegans and people who have removed all sugar from their diet still get cancer at precisely the same rate as everyone else. When asking someone if they have “looked into holistic yet”, remember that is the same sentence as saying “I hope you die from your cancer”.
- You can’t give up. This is interchangeable with “you never know what may happen” and “I read somewhere people who do not give up hope live longer.” Taking the latter first, that is complete bullshit and those who have hope and those who have no hope live equal amounts of time. There are zero peer reviewed studies that say “if you have hope your overall survival is longer”, so please stop that nonsense. Those sorts of bullshit comments make some sarcoma patients feel guilty when they are having a crappy day. Besides, they can give up any damn time they want to give up. And how, precisely, are you defining “giving up”? Were you the one who got the surgery and the radiation and the chemical treatments? Did you sit up night after night, trying to breathe with lung mets, or was that them? Maybe they already used up all that “hope” just living through today. Remember, you are not the one living with pain 24/7 or having trouble breathing or feeling exhausted every day, all day. That’s them. They are the one with the shitty quality of life. If you want to be a good friend, feel free to tell your friend that they can give up any time they want and you would be fine with that. Sad, yet fine. Lord knows they have enough unthoughtful people saying “don’t give up” every day in that three minutes they have to think about cancer that day.
- Everything happens for a reason. In general, it is a good idea to remove this from your vernacular any way, regardless of your sarcoma friend or family. If you ever said this to me, I would very sincerely look you in the eye and say “really? Interesting. Walk me through what the reason was for Princess Di to die in a fiery car crash in a tunnel. We have had plenty of years for the reason for that to surface, so please share that with me…the reason for Di dying in that fiery car crash.” Then I would wait for you to answer and you might shrug it off and say ‘well, that is a one off” and I would reply “OK, then let’s explore Andres Behring Breivik killing 77 people, many of them children, in Norway in 2011. Plenty of time has passed and if everything happens for a reason, walk me through that one.” Not everything happens for a reason. Some things happen for a reason, like using the designated hitter in the National League and progressive taxation. You could very clearly explain the reason for each of those to me because they are in the “some things happen for a reason” bucket. Sometimes bad things just happen. No need lying to your friend or family member by positing that there is some cosmic significance to the bad luck.
- Stay positive! This is in the top three of “don’t say”, as this list is not stack ranked. Who are you to tell someone who is probably in pain 24/7 and sucked it up to have lunch with you or call you to “stay positive”, unless…of course…you can figure out a way to take on their pain for a weekend? Because of my lack of a colon and eight weeks of post op radiation after surgery to my pelvis, sometimes I crap my pants. I do not even feel it coming on, it just happens. Do you know how hard it is to “stay positive” when any time you may crap your pants. You may be in line at the super market and BOOM…crap your pants. How positive would YOU be if you could crap your pants at any time. The right side of my penis and the right side of my pelvis look like Deadpool on one of Deadpool’s good days, from the radiation poisoning. It hurts each and every time I urinate and I no longer want to have sex with anyone because I picture them screaming and running from the room in terror when they see my crotch. Do this. Don’t have sex for two years and get a urinary tract infection for two years straight so that it hurts every time YOU urinate and then have all your friends toss “I know you are sexually frustrated and there is no end to that and it hurts each and every time you pee, but remember to stay positive!” Would you like that? Think about that the next time you want to tell a cancer peep to “stay positive” And that horseshit about “well, if you are positive and you can manifest yourself to recovery, then you can make your cancer go away” or the “people have cured themselves with the power of positive thinking” garbage. I know a lot of people who have died from cancer, more these days. All of them were incredibly positive and all of them are dead. Your point is not valid. Allow your friend or family member to be miserable whenever they want to be miserable without your platitudes about positivity. Give them room to be miserable without giving them an impossible task like staying positive while washing the crap off their leg in the shower.
- How are you feeling? While this seems like the logical thing to ask, imagine if you will when you got back from your honeymoon. You know how it was fun to describe your honeymoon for roughly a week, then you got really tired of talking about your honeymoon? That is how it is when every single person you speak with in any given day starts every single conversation with “how are you feeling?” This, of course, does not apply to those type of people who like to whine on and on and on and on about how they feel terrible and why the hell would you want to give one of those people a softball like “how are you feeling?” any way? This especially applies to those with chronic sarcoma that has mets or keeps recurring. You know how they feel almost every single fucking day of the year? They feel like shit because they have a cancer that never, ever, ever, ever ends. And when they get their next scan the doc will probably call and tell them they have more cancer and then that cancer will start hurting in that place eventually. When you ask someone with a chronic sarcoma how they are feeling, you are also saddling them with a bag of rocks because they will probably lie to you and say something like “aces” or “I feel great!”. That is their way of lying to you so that maybe you quit asking that question every damn time you call or text them. Final note on this one: a lot of sarcoma patients figure out how to live their lives as best they can by packing the cancer away in a box for hours at a time each day, not to be thought about while in said box. Know that your asking “how are you feeling?” all the time…when you now know the answer is “like shit”…pulls that cancer out of the box. That’s not cool.
While we are on the topic of phone calls and texts, also know that there are roughly a trillion topics that are non sarcoma related that you could discuss with your friend or family member via phone call, email or text. There are the Dodgers. Or how the Houston Astros are a bunch of cheating bastards who, for some odd reason, were allowed to keep each and every win that they cheated on in the World Series year. There are volcanoes and NASA and how even years later, it is truly fascinating that the CERN large hadron collider was able to identify and track the Higgs Bosun god particle. Along those same lines, there is dark matter and all the theories around dark matter. There are dogs and cats and puppies and kittens. There is the world inflation rate being at roughly 7% and how when the whole world’s inflation rate is at 7% it is extremely hard to drive your own country’s inflation rate below 5%. There is Elon musk, whether you love him or believe he may be the largest douchebag to ever live in the Silicon Valley, which happens to be my opinion of him. Those topics right there could take up four or five hours and I have not even started scraping the trillion topics that are not related to sarcoma.
It is extremely boring to talk about cancer day in and day out when you have cancer. Unless, of course, you are one of those morons who defines themselves by their cancer and wears it like a badge of honor. An odd behavior, given that millions of people get cancer each year and roughly 90% of them live a long life. It’s not that terribly special that you lived, given that most people live who get cancer. I have an ex who had a simple lumpectomy years ago and the way she describes herself, you would think she beat brain, pancreatic and liver cancer all at the same time. People like that need to just shut up and move on with their lives. In any event, find something else to talk about 99% of the time with your sarcoma friend or family member. My three sisters and I have spent the last three years talking and texting and have spent .001% of that phone time on sarcoma. It is ridiculously easy to do.
Sarcoma patients…how do you make sure you do not have to deal with those who overuse the seven items above or people who always want to discuss cancer? Simple. Do not take their calls or answer their texts. I have done that for three years and it is blissful. Now, to be fair, tell people well in advance that you will be ignoring them if they break the rules. My rules are three simple rules: do not ask me how I am feeling, do not talk about cancer and do not ask me where my Winnebago is. Because those three questions would be all I get and they bore the daylights out of me. Set your boundaries, make your rules and then stick by them. You’ll be glad you no longer communicate with those who disregard your boundaries because they would have ignored ALL your boundaries any way. I do not miss the 173 people I benched two years ago. Not even a little bit.
Finally, given this three thousand two-hundred fifty-seven word soap box diatribe, what can you do to help? You know what sucks on bad days? Cleaning the house. I especially hate cleaning the house because I cannot easily band over. Quite often, my place looks like Fred Sandford’s front and back yard. Pre-pay a house cleaning service for the for six months. Hire a lawn crew for a quarter to spruce up and maintain their lawn. Subscribe them to one of the hundreds of places you can find on line that ships a dozen fully made meals a week. Take them to a movie and don’t talk at all during the movie. Especially about cancer. Find a local wash and fold and pre-pay it for a year and tell them you already paid for it and they need to start dropping off their laundry there once a week…because you already paid for it.
The key is you pay for whatever you do up front and then they cannot argue with you because there are no refunds. You can lie about that. It is A-OK to lie to a sarcoma patient, especially the terminal sarcoma patients. The odds of that terminal patient catching you in the lie before they die is super duper low. Lie away! Tell them they look dead sexy when they are emaciated or bloated, the two most common cancer looks. I digressed. Pay in advance and lie and say there are no refunds. Are they barely making ends meet because having long term sarcoma is expensive and it is challenging to work when you want to sleep eighteen hours a day? Find a means by which you can get cash to them without making them feel like a bum. For example, maybe you rob a bank and after removing the dye pack, you hide the cash in a garbage bag and then hide that in the bushes and leave an unsigned note on their door.
Whatever chores and daily tasks in your life that you find annoying on a weekly basis is probably something in their life they find annoying. Even more so now that they have cancer. Not as annoying as hearing “you have to stay positive”, “everything happens for a reason”, “you can’t give up”, “how are you feeling” and “have you looked into holistic things” all day long, yet annoying. Help the remove or finance the annoying things in their life and you will probably not get blocked on their iPhone.