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Jan 31

Leaving Cancerland, now visiting State of Limbo

Yesterday, fellow cancer ass-kicker and blogger Mina over at Cocktails and Chemo wrote a great post about how she feels after treatment. Stronger? Not so much. Changed? Absolutely.

It’s interesting to me how so many of us are left feeling exactly the same way after treatment. I could have written that post. Just like I could have written the one from Stephanie at Pass me Another Cupcake.

So how do *I* feel? Most of the time, I’m annoyed.

When I was in treatment, I had a plan and a purpose to each day. Get up and fight this thing. That meant doctors appointments, treatment, counselling, a lot of watching TV and resting and knitting. But I had a purpose, a direction and a team of professionals guiding me and supporting me.

Now that active treatment is over, I am nowhere. I still go every 3 weeks for Herceptin, but I’ve also gotten bumped twice from speaking to the oncologist to make room for new more pressing cases. I get it. I totally get it because last year, I was the one causing other people to be bumped.

The thing is, I have questions. Like why I haven’t I started Tamoxifen? And what the heck can I do about these insane hot flashes? Can I take something for the wicked leg pains in the morning? If I get the DIEP surgery, does that impact the rate of recurrence in the tissue? I could go on and on, I have so many questions. But no one to answer them for another 10 days. Fingers crossed that appointment doesn’t get bumped again.

I’m also annoyed that I feel worst now than I did during most of the treatment. On a daily basis, my pain/annoyance scale is at 3. Sure, during treatment it was sometimes 8 or 9, but it was always short, and there was always something I could do about it. Pain? Dilaudid. Nausea? Gravol. Cough? Saw the specialist. Now, I wake up 2 to 3 times a night in a sweat, I can’t stand up in the morning because my knees and ankles are too stiff, I try to go to work but I have to leave mid-day to take a nap… And don’t get me started on the phantom itching.

Now? I get to talk to nurse G. She reassures me everyone goes through this and that yes, all of these annoying ongoing side effects are normal, but there isn’t much to do. So I’m stuck. Stuck in this State of Limbo. Interestingly enough, nurse G was telling me she is working on a possible program for women in the 30s and 40s who are post-treatment. Because she hears the same things over and over again ‘people expect me to be back to normal’, ‘people think I’m passed cancer’, ‘I want to go back to work but I don’t feel able to’, ‘everyone expects me to be happy it’s over, but it’s not over’….

There is comfort in knowing I’m not the only one going through these emotions. But it’s still annoying.

 

While I am feeling quite stuck in State of Limbo, I will be taking a brief jaunt out of here and head to NYC for my almost-annual visit to the gift show. More importantly though, I am going to hang with my pal Mrs. Figby for some much overdue wine-drinking and trash-tv watching. I’ll be back next week!

7 comments

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  1. Carrie/3CMum

    Have loads of fun in NYC! Enjoy, relax and hopefully the wine and TV will make you feel just a wee bit better!

  2. Anna in Turin

    V, you are a pro-active person, being stuck in limbo is delirious for you….take this brief trip to NYC/NJ as a way to put it behind you for a while…you’ll come back energized and ready to continue this battle…

  3. Mary S

    thank you for the post and once again, letting me know that I am not alone. Lately, I have been feeling kind of shitty and down in the dumps – more now than at any point last year. Active treatment finished on Dec 23rd and it took until Jan 18 for my burns to finally heal. I burst into tears yesterday because I am frustrated with everything around me. I feel like I have no direction. I am done treatment and need to go back to work financially but I just can’t work up the energy to deal with work right now. My lovely husband tells me to stop being so hard on myself but I feel like I should be in a different mindspace but I just can’t figure out where.

    Thanks for letting me vent a bit.

    Enjoy New York. It should be fun doing something out of your regular routine.

    1. outrunningthecloud

      Mary: I also feel very alone. and it wasn’t until the other bloggers wrote about AND I spoke to the nurse that I realized it’s like this for a lot of people yet nobody talks about it. We’re in the same town, let me know if you want to meet for coffee one day

      1. Mary S

        I would love to meet for coffee sometime soon.
        I’ve been meaning to tell you that CanSupport offers a free workout class to cancer patients three times a week at the Westmount Y. It runs for 10 weeks 3 times a week. Unfortunately I went to the first class two weeks ago and then I caught a really bad cold and have missed all the other classes. I go back on Monday. The instructor made a point of telling us to tell any other friends who might like to attend. If you think you would like to give it a try, let me know and I will email you the info.
        Let me know when you get back from NYC and we will make a coffee date. Have fun next week!

  4. Nance

    Have a great visit to NYC and Mrs. Figby

    Normal is not the same as tolerable. It sucks that you have all of these phantom itches and pains and stiffness.

    Sigh

  5. Steph

    Argh. Sorry you are feeling like this. Of course, I can relate! Things should start getting better soon. Tamoxifen can cause some nasty hot flashes, so def ask for something for that if you’re finding them difficult. I take Effexor and it doesn’t make them go away completely, but I think it does help. Some nights can be a bit rough though… I wake up sweating all the time as well. Not fun. And I still need a ton of sleep! I went back to work too early I think and have felt a lot better taking some time off. Hopefully can return again soon. I know it can be hard when people don’t really understand what you’ve been through and expect you just to get over it. Just remember to go easy on yourself and rest and relax. You deserve it! Have a great trip to NYC :)

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