What it feels like to be in the oncology waiting room

My friend Ed recently asked me, “What does it feel like to be in the oncology waiting room?”

It was an interesting question. I had seen many doctors in my life, but never a medical oncologist. It feels different to me, of course. Even during my cancer experience, it felt different at each stage of treatment.

We all go through our yearly check-ups with our doctors — PCP, GYN, dermatologist, you name it. Personally, I never really thought they would “find something,” certainly not in my breasts. My tests results had always been great. Even while I had my tumor, my blood work was excellent. “I can’t find anything wrong with you!” I recall a doctor saying to me three months before I found my lump. I am young, I thought. What could possibly happen at this point in my life that’s life-threatening? And no one in my family had been diagnosed with cancer before the age of 40.

Before BC, I had different worries when I saw my regular doctors. “Will my cholesterol be too high? I’ve been eating too much greasy foods lately” or “Is this a UTI?” You know, simpler stuff.

Ok, I’ll confess. There were times when I thought they would find ovarian cancer due to my family history, but breast cancer was the farthest thing from my mind.

I never enjoyed seeing doctors. I did it because I had to. It’s what I was told to do at home from a very young age — to take care of my health. There just seems to be more issues with us females, no? Even our gynecology check-ups start at a much earlier age than men’s prostate exams. They don’t get their prostate checked until after they’re 40. But we ladies need to monitor ourselves for cervical cancer, for example, at a much younger age.

But not to distract you from what I said to my friend…

“Ed, the ‘Big D’ (‘Denial’) used to be a good friend of mine. He used to accompany me at all my doctors’ appointments. But the day I was diagnosed with cancer he abandoned me.

For me, the first two months after diagnosis were the worst because I was still waiting for the treatment plan. I did not know ‘how bad’ the cancer was. Once that was figured out, it became easier. In fact, seeing my Oncologist made me feel safe. That is, until my treatments were finished. Then it was a different story. Without the regular appointments and follow-ups and constant meetings with my team of cancer doctors, I felt I was no longer protected. I felt abandoned.

On the other hand, now all of my appointments with my general doctors are nerve-wracking for me. Now that they know about my cancer history, the attention they give me seems slightly different — they pay more attention to me now, which in a way is a good thing.

‘You haven’t gotten your period yet? Come in, we’ll do a sonogram!’ my GYN will say to me the second I complain about not getting my period. Before my cancer she would say, ‘It’s probably stress. Wait for it. It’ll come.’

Of course, it feels a lot more intense in the oncology waiting room. You are there to check for one thing and one thing only: cancer. What makes this process so difficult, unlike previous times when I saw my regular doctors, is that I’ve already been diagnosed with cancer. In my mind, it’s just a matter of time. I just don’t know when and how involved it will be. There is always the fear it will come back.

I fear what my Oncologist might tell me next. Waiting to be seen, I think, ‘What if she sees something suspicious?’ I tell myself. ‘Would she suggest a new scan if I complain about pains? What if she doesn’t suggest a scan and there is something?’ ‘What if my blood work shows something?’ And remember, denial isn’t there with me to keep me calm. Only the Ativan is, and sometimes that doesn’t even work so I gave up taking it.

In the waiting room, I reach for magazines to distract myself, but they are all related to cancer. Couldn’t my hospital have magazines on, let’s say, ‘How to get your groove-on back after cancer’?

And there is something else: I see other cancer patients while I wait. We are all in different stages — some patients may be in a lot more noticeable trouble than me — an opportunity for my mind to get creative, in addition to also feeling a bit guilty.

We all look at each other in the Oncology waiting room wondering what each of our situation is, but we are too afraid to ask one another. At least that’s the culture at my hospital. We can still see the fear when we look into each other’s eyes though. That we all have in common.”

No, it isn’t pleasant to be in an oncology waiting room. But these are the cards I’ve been dealt, I tell Ed.

Oncology appointments never really end. They’ll keep track of my health for the rest of my life. I can always choose not to see my oncologist anymore, or to see her less. She actually tried to put me in the survivorship program at MSK. This meant I would only have seen her if something came up, to which my response was, “No way, Dr. Dang!” I wasn’t even three years out from diagnosis. How could this be? So I am back to seeing her 2x a year. So, the thought of NOT seeing my Onco scares me even more than having to see her.

In a way I think I have gotten used to this “new normal.” It has also turned out to be my comfort zone.

What makes this experience challenging is that I haven’t been able to control the fears and anxieties I feel in the oncology room. And these feelings contribute to how uncomfortable it is to be there. I felt I lost control over my life when I was diagnosed with cancer. I fear it could happen again.

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
This entry was posted in c World, Coping after cancer, Follow-ups and tagged , . Bookmark the permalink.

25 Responses to What it feels like to be in the oncology waiting room

  1. fear of recurrence seems to be quite heavy at the beginning but hopefully will diminish over time, with each appointment and test. hang in there! Virtual hugs 🙂

  2. I find myself going to the doctor–even the GP–more now, and hating it. But the oncology waiting room is the worst!

  3. poly says:

    Es cierto Reb es diferente esperar en consulta de Oncología y esperar resultados de biopsia es más tenso aún. Hay que confiar en Díos y tomar jurisprudencia divina confiando de lo que el dijo en Isaías 53 QUE POR SUS LLAGAS FUIMOS SANADOS. Amén.

    • thesmallc says:

      Poly – Tu como Doctor que eres sabes de todo esto. Si, no hay cosa peor que “la espera” de cualquier resultado medico.

      Yo nunca pierdo la fe, pero aun asi, se siente incomodo.

      Gracias por tu comentario. xo

      • poly says:

        Reb es todo un sin número de pensamientos que empiezan antes de llegar a la sala de espera y los más que se presentan cuando uno llega. En este proceso viví la del lado del paciente con Rosy y me enfoque y enfrente como médico a ese episodio. Tenso a veCES indiscrectublea. Pero Díos provee la fuerzas

      • thesmallc says:

        Poly, esa es otra perspectiva que no mencione y que es muy importante. Ustedes que son quienes nos cuidan tambien pasan por esta ansiedad. Gracias por siempre estar presente.

  4. scottx5 says:

    Rebecca, I prefer my family doctor’s waiting room. It’s always mayhem with kids and parents and grumpy people who everyone ignores. Second is the branch cancer clinic. The doctors aren’t too good but the people are mostly from local farms and seem relaxed with impolite topics and bad jokes. The main cancer clinic is very serious. Until you get the the nurses it’s all frowns. Very worst is the main cardio clinic. People look awful and very worried.
    Thing is, you have to see these doctors for your own piece of mind. Even if they would like to be rid of you, they need to understand that letting them rush you out isn’t going to happen. Anyway, being an inconvenience for other people is good for them:-)

  5. thesmallc says:

    You said it! Nothing better than having peace of mind, aside from having good health. That is what makes this situation tolerable for me.

    By the way, I really like your sense of humor.

  6. nancyspoint says:

    Sometimes I still can’t believe I ever needed and still see an oncologist. It’s all quite surreal, even now as I approach my five year cancerversary. Thank you for sharing your perspectives on the waiting room none of us ever wanted to wait in.

  7. thesmallc says:

    Nancy, congrats on your five year cancerversary! That is such a blessing.
    I know what you mean about this whole experience being surreal. I sometimes have moments when I feel I am in a twilight zone.

  8. Mandi says:

    Sounds about right. ❤ I think twice a year sounds good, at least for 5 years! There is something comforting in having the check in. It is a lifeline.

  9. bethgainer says:

    Rebecca, oh boy, could I relate to this post! Every time I go to the oncologist, I vow I will conquer my fears. I make my promise that I will be calm. Yet, I’m scared to death. But I absolutely need to see my oncologist; I’d panic if he retired or something. And about abandonment, I was abandoned too —- by family and friends. Seemed worse than the cancer at the time. Sending hugs and love. xoxo

    • thesmallc says:

      Beth, I’ve skipped my Ativan thinking I would be fine, but once I get there it’s a different story. I now fear seeing all my doctors, not just the oncologist. I never used to feel this way. I still can’t believe I need an oncologist but I would panic even more if I didn’t have her. I am sorry cancer has impacted your relationships too. I can relate. xoxo

  10. Poly says:

    Oncología es sinónimo de problema. Pero Dios es más grande que cualquier problema

  11. scottx5 says:

    Hi Rebecca, back for a yearly comment:-) Beth’s comment about abandonment sounds familiar. We NEED people to talk to. Especially in order to make sense of things when our lives fall apart. For some reason I haven’t figured out, very few of our direct acquaintances or family seem able to drop their need for us to be the same or reliable and when we get shaky or start to grow off in unexpected directions they drop us. Maybe it’s too much to ask them to change? I found I was getting pretty judgmental and a pain to be around when by pure magic a VERY old friend contacted me and we’ve built a support system between us.

    We need to be accepted for who we are, how we change, that today we aren’t feeling strong or decided about anything and tomorrow we will be different and somehow even in the midst of a mess, we are cared for. Wonder if your panic at the Oncologist’s is that the caring has slipped away somehow? Or worse, ALL the explaining has to start from scratch? The most awful thing for me is the implication that I’m not working on becoming better because I’ve become fond of being “broken” because I don’t meet THEIR expectations.

    Hope this makes sense. Your picture is great. My older Daughter would have that pensive look when we sat together in the vice-principal’s office waiting for the poor guy’s hopeless advice. Was just at the cardiologist’s office and people who don’t look nervous are the one’s who should be.
    Take Care,

  12. thesmallc says:

    Hi Scott, good to hear from you!

    I’ve found myself to be judgmental at times too, but I think that’s just a reflection of wanting to get support from others. Like you said, it might be too much to ask from certain people.

    About the oncologist’s office, you made me think of how much support I really want vs. what I need. To be honest, my guy and I have been doing survivorship pretty much on our own (aside from this blog). Of course there are the occasional follow up calls from friends and family to see how we are doing. I believe people are willing to help but there’s a limit to how much they can offer, because as we both know, our health situation is overwhelming. It’s isolating to be sick. And yes, this is sad. But going back to the support aspect of things, you might be right about the need for support, which might be a reason why I panic – never really thought about it before. I like my independence, but just recently I realized I need more than one hand to hold, which is why I see a counselor at my hospital a couple of times a month. I don’t want to feel like a burden to others but I ask myself, what makes someone family or a friend?

    I think, culturally speaking, we are expected to be transformed for the “better” after facing tragedy (but not by our definition). The pressure is real and it is one reason why we isolate ourselves. I agree this is one of the most difficult parts of this situation. I am just glad we are not completely alone.

    I hope you’re doing well.

  13. scottx5 says:

    Hi Rebecca, asking for help is very hard in a society that values independence. I had a run in with a doctor who told me I’d used up way more time than the average patient with my questions and behaviours (after 1 interview). When that junk happens to a person who is in a very vulnerable state it spoils the relationship and creates a natural urge to avoid more hurts like that. And since things got worse and worse I’ve detached myself from their “care” and only do the technical stuff they ask for.

    I still need support and confirmation that I’m not a bad person who DOES realize not all cancer doctors are judgmental fools. But no more expectations of change from certain people and I’ll get my dose of humanity elsewhere. Oddly, I don’t feel isolated by this and think I might even be more invested in depending on others and acceptance of human faults. It’s OK to be broken and not so expert at being what people expect. Somebody will be there for you.

    Things are the usual mess here, we’re getting by.

  14. Christopher says:

    I hear you exactly what I went through and how I feel I’m a male of 35 years old and it all started for me when I was 23 and was diagnosed with testicular cancer.Love reading story’s and how people feel about it.

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