Living in Cancertown brings with it some of the oddest realities. The way you existed and understood everyday life is blown to smithereens. What is up is now down, what is red is blue. No one really ever talks about these changes. You are expected to encounter them and simply get on board.

Example 1: Jobs. The number of times my oncologist has told me to ‘just stop working’ is truly bonkers. She says it in the most cavalier of tones. Like she could be telling me to wait until tomorrow to do the laundry, but instead she is telling me to just stop going to work.

She will ask me how I am doing and of course I will tell her that I am exhausted and feel like the contents of a trash can and she will say ‘maybe you should stop going to work for a while.’ She will ‘write me a note.’.

Stop going to work? Is that an option that no one has ever told me about, as an adult? Can we do that? As far as I understand it, I am required to actually show up to work in order to keep my job. And do doctor’s notes work for grown-up things? I thought this was just for, say, getting your kid out of a sport they stink at without financial penalty.

This must have been suggested to me at least 4-5 times within the last 4 months. I have asked the school where I work if there is some kind of short term disability, so I can follow doctor’s orders, but there is not. They have been crazy-generous in allowing extra days off and basically guaranteeing my job safety, so I can’t complain, but had there been a way for me to just take multiple weeks off without financial penalty or losing my insurance, I would have.

Example 2: Bloodwork and vital signs. Every time they take my vital signs, which is constantly, something starts beeping. Due to lymphedema in my right arm, I can’t have my blood pressure taken there. I have a port in my left upper arm so can’t have it taken there either. They either take it on my left forearm or sometimes my ankle/calf. I have been told that these areas are not as accurate as the upper arm, but I am still always alarmed when my BP comes back high, which it almost always does. In normal times, my BP is super low, so I find this change alarming, but no one seems to bat an eye.

Bloodwork. If you were to stumble across my blood test results with no context you would assume I was near death. This one really gets me. You know how they have a range of what is normal, and the results usually have an infographic to show where your results fall in that range? There is usually something that will indicate if you are outside of normal? Mine look like maybe you accidentally mixed my results with that of a drunk flamingo. Everything is wrong.

The doc will come in with the blood test results, to clear me for chemo, and she will say, ‘everything looks great, let’s go ahead with treatment.’ I will subsequently look up the results on the app and see that according to the data presented, I am actually dead. For those of us who are slightly in the know about medical things, and work hard to advocate for ourselves, it would be helpful if the medical team would take some time to explain why it is considered okay for our results to look like this because I know that if I walked into an ER in a non-cancery fashion and these blood results came in, I would be admitted without question.

A few weeks ago they tested me for B12. Why? No idea. My results hit the app long before a doctor read them. It said I was 10x the normal limits. A quick Google search showed that I was going to be dead within 3 weeks. I was pretty sure this was not true so I did every combination of ‘on-chemo-high-B12-results-normal?’ and nothing even came close to this being normal for someone on chemo.

The cavalier nature of the doc’s note makes me LOL
I started writing my goodbye letters

It was a weekend and I wasn’t in the mood to call my doctors asking if I had 3 weeks to live so I asked the hive on one of my breast cancer FB groups. A few people wrote back quickly saying that their B12 was crazy high too, no one cared and it went back down after chemo. I don’t know call me crazy, but shouldn’t our health care providers be letting us know what they are testing and why insane results are okay?

Example 3: Nutrition and Exercise. We touched on this recently, but there is a slightly different angle here. I have made it clear to my medical team that I am unable to do much in the way of healthy eating and exercise, due to how I feel. You would think they would say, ‘try to do you best to get protein in.’ Or ‘get out there and take a walk.’ Nope. No one cares. I have gained 15lbs in 4 months and my doctor thinks I look great. What?

Isn’t it their job to remind us that we need nutrients and not an endless stream of grilled cheese and pillows? I guess I should be glad that they are understanding of how hard it is to eat well and move during treatment, but the complete lack of motivation seems peculiar. Being heralded for packing on lbs feels like living in the upsidedown.

Attempting exercise in my pajamas

Example 4: Covid. When I was re-diagnosed with cancer late last year, I assumed I would be placed into a hermetically sealed bubble, so as not to get Covid alongside cancer treatment. Here is the truth, no one seems to care at all. I asked my oncologist about how worried I should be about getting Covid (I’ve never had it, that I know of, which at this point sort of makes me feel like a loser???) and she said that ‘none of her patients have died from it’ and then she just moved right on to the next subject. Wide-eye emoji.

No one has mentioned that I should get another booster. No one is asking me about my risk factors for exposure which are many as I live with 3 germy kids and work in an elementary school. Maybe this circles back around to her telling me to simply not work?? Unclear.

What I do know is that the vibe is laid back at best. Yes, everyone is masked at the cancer center, but when I say it feels Covid-casual in there, I mean it.

So there you have it. Cancertown is a weird place where nothing makes any sense. I am chubby, missing the no-work loophole and on paper, barely alive. This is not the multiverse I would choose to live in by any means, but I seem to be stuck here. Send me your tips for finding the wormhole please.


6 Comments Add yours

  1. Margaret says:

    Everyone is entitled to FMLA benefits. My husband took off days of work when he was too tired to work during his treatment for leukemia and his employer doesn’t have short term disability for part timers. I think you can use the 12 weeks as needed but they have someone at the cancer center who specializes in getting you the time of that you need and can help you navigate through that.


    1. Sheila Roche says:

      We certainly have to be our own advocates.
      My Hemoglobin levels were low twice during my chemo treatments T/C and A/C.
      Lowest was under 5. I had two blood transfusions that boosted the levels.

      My ANC levels dipped to almost 0 and I was given two injections (I was anemic) and at high risk for infection. I actually felt physically fine.

      My levels were watched very closely and I missed 2 scheduled treatments. I had to make up 1.

      Keep pushing for explanations as to why you are OK to continue with a treatment.

      Best of luck and that you for sharing.

      Definitely request FLMA. Your job will be safe, you will continue to be insured.
      Just no income….


  2. Maureen says:

    So I feel like a stalker becuase I don’t know you yet I read your posts, so perhaps it is time to comment. As a fellow Chicago mom, I am totally on your team and sending so many good vibes your way. You are such an excellent writer – I can’t wait for your book (surely you are working on a book or maybe you already published one and I just didn’t get that memo?!). Thanks for sharing your journey and just know that your words really, truly matter.


  3. Hello from the UK.

    Many thanks for your post. You would think the doctors are trying to kill you!

    However funny that may sound, in truth they are, even if it is through blind ignorance of what cancer is.

    I was diagnosed with cancer back at the end of 2019 after 1.5 years of tests, scans etc. I was offered immuno-therapy which I had for 9 sessions before I stopped as I realised it was not doing me any good.

    I had then worked out I was suffering from sodium nitrite (E250) poisoning which turns into nitro-samines in the right conditions/cooking. These are neuro-toxins, the later especially so and hence the facial palsy which was the initial symptom in July 2018.

    In my case E250 came via bacon I ate. E250 is used primarily in processed meats, mainly but not exclusively, pork.

    I am now working my way through detox, although there are other things in me I believe adding to my issues, caused by the incompetence and ignorance of NHS doctors.

    I am aware that by and large they are very ill-trained, but they have in many cases sold their souls to big pharma and don’t properly investigate the causes, merely manage symptoms which is pointless.

    As regards sodium nitrite this has been known about for over 100 years!! Nitro-samines have probably been known about for at least 40 odd years. Doctors really have no excuse not to know this.

    I currently suffer from various symptoms including being deaf in my left ear, and general tiredness like ME.

    I am aware that nutrition is the key to good health and avoiding cancer. Vitamin D is the key to all round protection, and people should be tested as all too many in the western world are seriously deficient. It is the true pandemic.

    There is a very good book by Phillip Day, ‘CANCER Why we’re still dying to know the truth’ It makes shocking reading if you don’t already have some knowledge of the issues. You will find the book in link below if you are interested, but I do strongly recommend it if you don’t want to research online, although it is all out there in one form or another.


    Kind regards

    Baldmichael Theresoluteprotector’sson
    Please excuse the nom-de-plume, this is as much for fun as a riddle for people to solve if they wish.


  4. Lyn Black says:

    Yes! “I’ll write you a note”!!!ha! I have had the exact same micro “lecture” several times. Is it going to be a bank note for $35,000? No, well I guess I’ll be going to work then.


  5. Lyn Black says:

    Also PS thank you so much for taking the time to be writing and posting. ❤


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