Now that I’ve passed the ten-year mark for ending up on the right side of the dirt in spite of a terminal cancer diagnosis, it’s easier to see the positive things that came out of it – especially since the “terminal” part of my diagnosis turned out to be mistaken. Still, the cancer part was real enough and I went through the experience being treated as a goner, based on my doctors’ prognoses. S**t, as they say, got real – and it got real right quick.
As it happens, I get complimented on being real and I take a bit of pride in that because I didn’t always get a lot of reinforcement for being myself when I was young. It appears, however, that I simply can’t help it. And, happily, getting real when you’re facing cancer – and death – may be the single best ability you can have. Another thing I had going for me is a trust in the wisdom of life, in spite of having maintained the outrageously contradictory smoking addiction to which I had succumbed in my youth. I had to get real about my responsibility to my own health, illnesses and – finally – my own death. While I was going through it, though, there were a lot of things I know now that I wish I’d known in the beginning. With hope that these things will be helpful to someone in the middle of a cancer diagnosis and treatment, here are:
The Top Ten Things I Learned About Being a Cancer Patient
- You need to partner with someone to deal with cancer because one set of ears isn’t enough to hear everything the doctors are telling you. Call Gilda’s House or another advocacy support organization if you need to. Then, learn all you can to educate yourself and your advocate on how to look out for you every minute before surgery and every minute after surgery until you’re out of the hospital.
- Some doctors will respect your right and ability to learn as much as you can about your cancer and its treatment and communicate with you accordingly. Some will be astoundingly oblivious to you as a thinking, feeling person. If they have the expertise you need, just remember that their considerable expertise may be the very thing that blunts their emotional intelligence.1
- It will break your heart to hear this – but you can’t rely on all doctors to put your best interests before theirs. Some of them will provide outdated, unnecessary, or incorrect treatment because it’s what will profit – or be easy for – them, not you.2
- This is putting it too bluntly, but people want to be able to find a reason to blame your cancer on you, your actions, your environment, or your genes – because it makes them feel safer. If you’re a smoker, you’ve made it real easy to do. But, remember that true compassion doesn’t judge.3
- If you’re a smoker, some people (even doctors) will rub it in, not realizing that we smokers with cancer are excruciatingly aware it’s our own fault. Still, it’s never too late to quit smoking and, if you do, you stand a better chance of living – or a better chance of dying with dignity. And it’s going to go one way or the other.
- The Internet is a blessing beyond price in educating yourself and connecting with others who have experience with your cancer. If you’re as fortunate as I was, you will find that it’s possible to deeply love people you’ve never even met.
- Some people will think they know what’s best for you and will insist on doing things that are unwelcome or even downright stressful. Be grateful for their intention but trust your heart. If it’s not something you want – and it really matters to you – now is the time to claim your power. Seriously, if not now, when?
- When people start to call you after your diagnosis, accept sincerely caring and supportive calls from those who love you as the blessings that they are. And, do your best to be polite to callers who speak to you in hushed, mournful tones as if you’re already laid out at the mortuary, and get off the phone as quickly as possible. They’ve done their duty at that point and probably won’t be calling back.
- People will tell you that having a positive attitude or sufficient faith are the main keys to surviving cancer. There’s no doubt both are important but, think about it. If that were all there is to it, there would be a whole lot more dead mean, faithless people.
- Prepare to be surprised at what you can get real about once you finally have to. You’ll be surprised by who brings you comfort. You’ll be surprised by how much you can learn about your cancer and current treatment options in a short time – perhaps more than some of your doctors. You’ll be surprised by how much love and compassion people can have. You may be surprised at how much passing through your dwindling days can distill gratitude for your life into its very essence.
1. OMG – there were so many examples of doctors’ insensitivity that, as stunning as they were at the time, finally became funny (and, perhaps, what I perceived as stunning insensitivity on their part was actually their version of getting real). The first doc told me how hopelessly agonizing my death from cancer, in 6-18 months, was going to be and then told me to get a flu shot. Yeah, like dying from the flu didn’t sound like a far better option at that point. Another doc (head of the university oncology department) immediately told me I had not just the one metastasis (which turned out, after surgery, to have been benign) in my lungs but five (reducing my five-year-survival chances from 20% to 0%). That doc then sent me on my way to the next doc for a bone scan to see if they could find more mets. And then, that doc told me, yes, they’d found metastatic cancer in my rib cage (which turned out to have been a false positive). At this point, I finally broke down and cried (but, I’m proud to say, only a little) at which point he asked, “What’s the matter?” Like, godamighty, man – did you not hear what you just said? I sure did. And, finally, adding outrageous paternalism to the mix, the laparoscopic surgeon who told me during his consult not to worry my pretty little head about the surgery; he’d have me back on the beach in a bikini in no time. Like I was EVER a candidate for sporting a bikini or that being bikini-worthy was my motivation in pursuing non-disfiguring surgery that wouldn’t leave me with a bulge on my side that I would brush with my arm with every step I took for the rest of my life (however short it might be). I know all of that sounds like I’m just carping but my point is this: get real clear that some of what docs “know” may be a very well educated guess – but it’s still just a guess.
2. There were many examples of doctors putting their interests above mine. First, the internist who first diagnosed me with terminal kidney cancer referred me to an oncologist, from whose practice I later surmised, he benefitted financially (and I suspect this is common). The oncologist, in turn, referred me to a urologic surgeon to whom, as I later discovered, he was related by marriage. The urologic surgeon provided the best evidence that not one of them was – foremost – looking out for my best interest. Since I was facing kidney removal as part of my treatment, I had read all about nephrectomy before my visit with the urologic surgeon. Let’s just say that the traditional procedure for kidney removal severs tissue, from the navel all the way around to the spine, in a way that can be most succinctly described as “the magician’s accident” that might occur just after he says, “Watch me saw this lady in half.” However, a newer and far less invasive method, laparoscopic nephrectomy, had been in use for several years and was available in the area. When I asked this particular surgeon about having this kind of surgery, he said, “Why should I have to work through keyholes?” Clearly, not to spare me from ending up with a permanently protruding bulge that results from traditional nephrectomy. God forbid he would have to inconvenience himself by staying current in his field and learning to perform procedures in a way that produce far less disfigurement. Again, I’m not trying to complain but rather explain how real I had to get when thinking about recommendations based on how much it would profit the people making them.
3. Yes, smokers are second-class cancer patients. Have you ever seen a fundraising event being held for a lung cancer patient that doesn’t include the phrase, “non-smoker?” I never have –and can’t image a jar in the minute mart with a sign that that says “Lifelong smoker with cancer needs your help – please donate.” In fact, if you ever see a fundraiser for someone with lung cancer, it will emphasize that the person is a non-smoker. It’s hard for people who’ve never been personally touched by a tendency toward addiction or compulsion to understand that not everyone can overcome their tendency toward addiction. Please pray that you will be able to have strength and compassion – for yourself or for others – to give or to receive, as needed.
It is my prayer that anyone reading this who is experiencing a cancer diagnosis also discovers deep reservoirs of strength filled with the help of old friends, special family, compassionate doctors, attentive nurses, and the people you find through the Internet, going through what you’re going through, who become best friends you’ve never met.