Advice, From Within & From Outside

I’m not going to lie, the past 10 days have been rough. It’s probably because I overdid it a bit at Thanksgiving, but I was OUT OF COMMISSION, as in flat-on-my-back in bed, for a week.
We had the MOST amazing Thanksgiving in Wisconsin with Evan’s parents, so much good food and games, movies and fun!  We were snowed in for an extra day — and ENJOYED it — so that says a lot about our wonderful weekend!
 
The past few days I’ve been able to get up and go downstairs once or twice a day, but I paid for those excursions with incredibly nausea, headaches. Must have been the change in elevation (joke…)
 
At any rate, I’m more myself today, I actually made yogurt, and if all goes well I’ll try to make it to Gilda’s Club tomorrow.
 
It’s hard to swallow that this is still my reality 11 months after finishing my chemo. I definitely have ups and downs in my recovery, and when I overdo or force myself past my limitations, I end up paying for it afterward.
 
That’s the hardest thing to accept. I can’t push myself out of this, I have to just let recovery happen in it’s own time.
 
There’s an unhelpful voice in my head that tells me, “Other folks have ended their chemo and they’re back to their regular lives!” That same voice tells me that I’m being lazy, not really applying myself, not working hard enough to get better.
 
That voice is often joined by the voices of folks who would like to point me in a specific direction for my recovery. That’s been happening a lot this week in private emails (folks are worried because I’ve been on radio silence)

ADVICE ON GIVING [Medical] ADVICE
So, with that in mind, I’d like to offer my OWN advice for what is not terribly helpful when you’re speaking/writing to someone battling a serious disease*
 
• Please do not feel you need to comment with some new herb or mud-bath regime that a sick friend MUST do. Often those kind of “helpful” suggestions simply make one feel even worse, as though they, themselves, are definitely to blame for a slow recovery.
 
• If you know a person, and you’re friends in real life, and you’re speaking from personal experience, suggestions are easier to take.
 
• If you’re just passing along something you ‘heard’ from another friend or from the media, please keep it to yourself.
 
• Please don’t insist that your sick friend MUST try something because it’s GUARANTEED to work. Nothing is guaranteed.
 
• Please don’t try to guilt someone with an illness if they don’t do exactly what you feel they should do (a friend is now a former friend after a series of messages explaining that eating meat is DEFINITELY what caused my cancer…)
 
I cannot tell you how much I appreciate the love and concern that folks have shown me! Sometimes, though, the medical-friend advice can be a little hard to take when I’m at a low point in my recovery. Thank you for understanding!
 
*I’m in remission, my last scans have been good. But I still consider myself battling cancer as my exhaustion, back and hip pain, and numb legs are due to the Lymphoma and the chemo.

14 thoughts on “Advice, From Within & From Outside

  1. Annie- I totally get what you’re saying. All I can say is you are doing the right thing by listening to your body. When you feel like crap, it’s time to rest. There’s no timetable to healing from the horrific cancer treatments. I was diagnosed with early stage breast cancer the same month I separated from my husband of 20 years, and moved out of our house. Lots of big changes. Had two surgeries and just finished a fairly short course of radiation three weeks ago. I can’t believe how awful I feel on some days. And when that voice in my head says “ You’re lucky, you didn’t have it so bad.” I tell it to shut up, and I sit on the couch with my dogs and a good book and relax. Cancer sucks, but the treatment is devastating. Yet every morning I wake up grateful for this crazy thing called life. Keep it up, girl…you’ve totally got this! Love to you!

  2. I hope you start having more good than bad days. It’s wearing both physically and mentally. I know it’s hard to stay positive and am glad you have such a great support system.

    I have an item to add to your don’ts from my battle with cancer (though your list is very good)

    Don’t under any circumstances share your story about Aunt Nancy that had your same diagnosis and died or had gruesome experiences. It is SO not helpful and puts your friend in a worse place.

    I wish you peace a strength and would make you chicken soup if I lived near you.

  3. Hi Anne,

    I have been following you on Facebook and you feel like a friend now. I’ll keep this simple and let you know that I will be praying for you to feel better very soon. Count on your energy level increasing and that sense of well-being to be magnified. I’m not a voodoo healer; just a Christian who REALLY believes in the power of prayer. Many blessings to you and your family this holiday season. Be well!

    Candace, Caldwell, ID

    • If you’ve been following me, you’ll know that I’m atheist. Please feel free to pray all you like, I firmly believe folks usually do that for themselves, which is fine (and fair!) Wishing me well is just as good. I realize it’s meant as a kindness and not as a way to ‘back-door-witness’ to me. Just don’t expect me to pray with you.

  4. About getting better? It takes the time it takes. And your advice is spot on. Years after several health issues (twin pregnancy and health stuff, Lyme disease and pneumonia) I just have to accept that some days are like this, you do the best you can and ignore or talk back to the people who have no idea what you have been through. I finally got better at saying “wow, you must be so much more competent/healthy/stronger than I am!” (Pick one) and then, walk away. It was the opposite of all the manners and training I was raised with, but it is necessary.

    You are incredibly strong and wise and you have to just listen to yourself. Your body will tell you what it can do. It is ok to listen! I am so glad you had a good Thanksgiving, i wish you healing and peace and confidence in politely telling people you will not try their weirdo upside herbal immersion that cured their Great Aunt Franny. You are spot on there, 🙂 i wish you refuah shelemah, ok?!

  5. You are not your cancer. You are an amazingly strong woman who is dealing with a lot of hard things. Listen to the wise voice and hear yourself do what needs to be done, like rest when needed. Listen to the gentle voice who tells yourself to stay kind to yourself. And listen to the badass voice and hear yourself tell those other unkind and unhelpful voices to shut up, whether you hear them in your head or from other people.
    You rock, even when you feel like crap. Your efforts are admirable. I hope we all learn from your advice.

  6. I’m an ex cancer research nurse and all I can say is kudos to you. I’ve been following you for quite some time and I think you’re doing just fine. You’re not just recovering from cancer treatment. You’ve also suffered a huge loss. Looking back you seem to have improved so much each day / moment at a time and celebrate those good memories which you are still making! Long may you create great memories for you and your loved ones!

  7. Listen to your body. It’s your very own expert on healing itself (unless it tells you to eat the whole chocolate cake, then it’s being a 5 year old!)

  8. Great advice! I just don’t know why people think they know what other folks should do in healthcare situations. I’m a doctor and I rarely give unsolicited advice. And, if I do, it’s usually just advice on what kind of doctor to see or where to go. Healthcare decisions belong between the patient and the provider! I hope you have a restful holiday season and spend good quality time with your kids. You deserve it!

  9. You are so right-I honestly feel like many people seem to think that if I just (fill in the blank – healthy food, exercise, perineum sun or whatever) I would self cure my MS. Sometimes I even fall into it myself, because I love and trust the people who say those things. They mean well – but it can leave me with a terrible sense of guilt and the feeling that I just need to do better. I wish you weren’t going through all this.

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