July 12th, 2016
Everybody knows that cancer sucks. There are sides to being a cancer patient that are ugly or not very studied yet and many people don't talk about them at all. Yes there are still taboos- and I’m not talking about things like vomiting after chemo. After going through years of treatment, I have noticed a few things that I'd like to write about.
1. "Cancer Competition" is real.
I have been through disfiguring surgeries and years of meds that harm me, but I still have long hair. I did not have chemo because the doctor decided for other treatments. The reactions vary in intensity from a mild sigh to a loud, "so it was nothing!" but the basis is still the same: That it was not “real cancer” because I have long hair. There’s a sense of competition about who has it “worse” sometimes. I don't see the point in competing in cancer but the competition is real – and nobody says it out loud. But I will.
2. People disappear.
Many people talk in anonymous forums about friends suddenly disappearing , even if the image of cancer is much more about camaraderie between patients and sweet care from family and friends. A confused patient is not very pleased when people suddenly are not here, and sometímes this happens after they proclaim how helpful they would be.
3. It is a lonely place.
Stories in the media could make one believe that if you get cancer, people rally around you, shave their heads in solidarity and bring you flowers and freebies. Myth: If you are a woman, of course there is a husband that shows his love daily, showers you with flowers and does all the household tasks. Reality: If you do not have a husband, boyfriend or any other type of partner, seeing these sob pink stories hurts tremendously. Because you see what you could have as a "reward" - if you had one.
It would be nice to sometimes show the reality of being alone and seeing friends disappear - some sooner, some later. Sometimes the relationships with friends stay but are very damaged - in short, your "friends" are tired of your shit. For the first few months or weeks, everything seems okay. But then, big drama happens and people slowly disappear.
After a few years you might still be in treatment as your body continues to deteriorate - even after having the tumor removed, you could still be on meds for years and experiencing severe pain in your joints, heart or liver. You hurt and are tired. But other people think that cancer is “over”. The people who stayed around you now start to hint that they start to hate this. Any pity or tenderness you were getting usually diminishes after months, so now there is a big nothing when you call for help.
4. The meds suck.
I am a breast cancer patient - I didn’t have chemo but had a thing called Zoladex for 2 years which is a weird capsule shot into your belly once a month that makes you menopausal. And Tamoxifen, which is a hormonal treatment, for 5 years (now serving my third). My liver is damaged, I have hot flashes (I was told they would disappear in months, they are still there after 2 years), my joints ache. Nothing works for hot flashes (the only thing that works, used in menopausal women, is taking hormones – but I cannot because my treatment is all about destroying hormones). My liver gets worse, and joints too. I have a big belly and a big appetite, mood swings, and weird gynecological problems. Plus a few other minor things like skin problems and such. I refuse to call myself a survivor. If i have to take these crazy meds, I am a patient, and they are the worst meds I have ever experienced.
5. You lose time.
Having cancer is like having a job that depletes your stamina. The meds often have side effects requiring other treatments. Since my diagnosis I haven’t had a week without a doc appointment or physical therapy, usually I have about 2. They are often far from home, and often I wait for hours, or the treatment or test takes hours. This is money lost and nobody will ever return this time to me. Having cancer makes you acutely aware of the possibility of death that might come very soon, so losing time is especially unnerving.
6. You lose your libido.
I lost my libido along the way (realized this was pretty common) which is something I would not have been able to imagine before cancer. I was this girl who wanted it daily. I loved even the average sexual encounters. Having no physical urges is weird and doctors don’t discuss this at all. I tried to talk about it to my doctors or a nurse but I got just a blank stare, like this was another thing I just had to accept. The answer is again the hormones - but shouldn't the patients be warned about this before treatment? I have the sexual urge of a 90 year old. I am not really sure I would have accepted the treatment if I knew this was going to be a consequence along with hot flashes and other side effects that have no treatment. Do not trust those euphemisms like "the side effects can be often managed." No they cannot, these things have no treatment at all. And they do not go after the castrating treatment ends, which I was also unprepared for. It might sound extremely weird, heretic even, but knowing that the treatment would destroy my body (and I am not talking of the patchwork and weird shapes that I have on my chest, that is something I could accept), I might not go for it, or only would have accepted surgery. Would it mean I'd die sooner? Maybe.
This is the worst thing about treatment: If you have to take those crazy hormones after surgery, you are required to take them even if there is no sign of disease. Is it possible I let my life be ruined with treatment that is not needed? Yes. Many more people are with me. I really hope medicine makes new discoveries to help future patients find treatments that would not be as damaging.
Seeing your body deteriorate, seeing your friends disappear and fearing the few ones that stayed would go, too (they never go with warning) is a very complicated, complex way of feeling.
It makes you stronger and kind of proud you went through this and managed to stay active, worked and helped others...but it is hard. Hopefully the next generations might have other options apart from having their life blasted like it was for me.
What other ugly sides of cancer have you experienced that you want to talk about? Share in the comments below.
to continue the conversation.
Want to blog with us ?