What a week … It feels like it’s been a year.
The Tamox has not been kind. Nausea. Hot Flashes. Weird puke-burps. No appetite. And of course the worst part for me is the joint pain. The pain went from zero to 60 and it caught me off guard. And I’m only on a 10mg dose. I’m supposed to be on 20mg!!
Despite me feeling crappy I was determined to go see my family this weekend so we hopped the ferry and it was really great being able to see my parents and Gerry’s folks …
But the entire trip I kept thinking “Is this my life now? To be so uncomfortable that I can’t sit for too long and also so uncomfortable that I can stand for too long either?” By the time we got home I was exhausted. Thank goodness I brought my luck-dragon with me for comfort and cuddles.
Speaking of Fergus … I would like to get him certified as a “PTSD” dog but I can’t seem to find any good solid info (yes I’ve googled) about PTSD Service Dogs for Canada in particular BC. Anyone out there have any info?
Speaking of PTSD the fear I have about the Tamox is intense. I’ve been crying just about every night about the pain. Gerry rubs my back while I sit and sob. This whole year has been about learning to let it go so instead of trying to be stoic – I just let it out. It’s not cute but it’s effective.
These Tamox tears are so intense. Gerry told me I was “darker” then he’s ever seen me. It’s much more difficult to recover from Tamox tears … so I’ve made an appointment with a therapist at the Cancer Center. I have a regular therapist but I want to talk to this particular woman at the Cancer Center because she’s my favourite therapist who does the Guided Meditation.
The therapists all take turns running the meditation but this woman is particularly creative. I dig her outlook … so since she deals with cancer patients every day, I think she might have some new insight for me. Fingers crossed.
During one of my nightly melt-downs I had an epiphany. I realized I wasn’t taking everything the Naturopath suggested for joint pain so I went and looked at the sheet of his suggestions for supplements that won’t interfere with the tamoxifen and I was right. I had totally forgotten to pick them up after my appointment with him.
He had suggested Curcumin for joint pain as well as Glucosamine. I think I hadn’t bothered with the Glucosamine because I knew it was made with shellfish so I did a quick Google search found a vegan friendly Glucosamine and the next day I ran to the vitamin store so I could get started.
It’s only been 5 days since I started with both … and I already feel like I’m doing better. I still have achey knees at the end of the night but I don’t feel like jumping off a bridge. So I am now feeling a teeny tiny bit hopeful that I can navigate my way through the Tamox with the support of the supplements.
So let’s all say a tiny “yay”. I’m not ready for a big YAY yet.
In other news – I went to see Carol Armstrong who had come to my YWCA Encore class to talk to us about lymphedema. I am SO THANKFUL that she does this kind of outreach because my arm has been bugging me for a while.
I also want to say thank you to all of you out there in internet land who sent me messages to be mindful about Lymphedema.
I’ve asked my Surgeon, my Oncologist and my Radiologist to look at my chest wall/arm and they gave me a few pokes and told me I was fine. They all said “You’ve only had 3 nodes removed so don’t worry about it”.
My arm has been weak and feeling weird ever since I finished radiation at the end of Dec – but I kept waiting for it to get better. First I couldn’t really use my arm that much because of the radiation burn. Then I thought it was stiff because I had favoured it so much. Then I thought it was stiff/heavy feeling because I had started the Encore program and I was exercising it too much.
Anyway … I had a funny feeling it was something else … so I booked an appointment with Carol for an assessment and guess what. I have edema. Which is swelling in both my arm and my trunk area and some truncal rigidity where I had the mastectomy. It’s early stages and Carol feels that we can get things normal-ish again but it’s going to take some time. She’ll be doing lymph drainage massage and working on breaking down the scar tissue …
So #1. I’m pissed that none of the doctors knew to measure my right and left arm for comparison.
#2. There is no support at the Cancer Center for Edema/lymphedema except for the library. They give you an oncologist. They give you a radioligist. They give you a nurse hotline. They give you mental support with therapy. Where is the lymphedema expert?
#3. If Carol had not done outreach at the Y. And I had listened to the doctors instead of my gut I would be walking around thinking my arm was fine and it would be getting worse.
I feel like I SHOULDN’T HAVE TO DO MY OWN DIAGNOSIS. That they should know what to look for. Ugh. So now I have to get fitted for a compression arm sleeve …
I went to the Rexall located on Nanaimo Street. I love that store. The staff there are so helpful and anytime I’ve gone in there with questions or looking for something medical they go out of their way to help.
The woman who fitted me for my sleeve made me feel so comfortable and kept assuring me that I was going to be fine and that the sleeve would make me feel much better. Then she said “Do you want me to order you a black one? You look like someone who likes to wear black.”
Ha ha. How did she know??
I was talking to Dr.B on the phone the other night about how scared shitless I am not to take this Tamox. I told her that I hadn’t anticipated all the side effects from after cancer treatment.
I was so focused on the tumor and getting through the surgery then the chemo/radiation. I didn’t anticipate the Tamox to be just as difficult. I didn’t expect to have issues with my lymphatic system. I didn’t expect to be as weak as a baby. I didn’t think I would have no appetite and not enjoy food anymore. I didn’t expect to have such deep PTSD and anxiety from all the trauma of cancer treatment.
So fingers crossed this Curcumin and vegan Glucosamine keep doing what they’re doing to help offset the Tamox joint pain and while we’re at it let’s all take a deep breath and ask the universe to cut me a little bit of slack.
That’s not too much to ask for… is it?