Post treatment support for monitoring side effects.

Agree everyone thinks when you ring the bell it’s all over. Far from it. Hard to forget it when your feet hurt everyday from the neuropathy. Noticed the Princess of Wales mentioned the same thing about the struggle moving forward and adapting to changes

We seem to be living the same life. It is a terrible club to be initiated into, but at least we are in good company.
One day I wrote down the physical side effects of my treatments and practically filled a page. It was good to dump it out of my brain but eye opening as well. Maybe the saddest part is how it has changed my outlook. I alternate between sadness, fear and anger; I am a different person. I have become a woman with a calendar of medical appointments, discomforts, and frustrations. But I put my mask on when with others. On the good days, I fake it. And if I get a few hours of forgetting, it’s a gift. Thank you for understanding.

I'm not in post-treatment because I'm participating in a clinical trial for enhertu. But the side fx are the same as described by almost everyone here. Most severe fx is gastronintestinal, seconded by peripheral neuropathy. My oncologist and study nurse are attempting to manage GI issues with anti-nausea meds. and laxatives, but the condition -- severe constipation around the 5th day after treatment--remains. If anyone else has this issue would you tell me how you're coping? I'm thinking about stopping the treatment if this doesn't resolve.

Totally understand. I didn’t even mention the ever present fear of recurrence. Every change makes me wonder it it’s back yet I don’t want to be the difficult patient by calling the oncologist even though they have been great. It’s been difficult finding a therapist who has experience with this. Instead spend time explaining the procedures side effects etc which leads to the frustration. Agree have become a very good actress and just respond I’m fine so family doesn’t worry

I also respond, “I’m fine” when asked how I am. That is mostly for me because 1) I don’t want to talk about it when I’m supposed to be out doing normal things, 2) below the waist issues can be embarrassing to talk & hear about, 3) it upsets all of us, 4) I don’t want to hear toxic positivity from ignorants, and 5) the information travels in the gossip circles. I can always tell when somebody knows something personal about me that I didn’t tell them myself.
Maybe sharing here, with those who get it, will help all of us.

Absolutely,I have terrible muscle cramps and my skin is so sensitive my clothing hurts ,along with gastrointestinal issues ,I never know what’s up and gives me constant anxiety

Yes I do ,try coconut oil ,and products for diaper rash ,sick cream,my doctor gave me estrogen cream to be used 3x per week in a very small amt only on the outside,good luck,hope you find relief

Yes, Denise, I agree. I have Medicare and Medigap and it’s implied...“my job here is done”, next. And they do not take into account the mental, or emotional trauma when you’re dealing with the long term side effects of the illness, even after the “cure”.

What are you doing to help with GI issues?

I'm in the US, treated at a teaching hospital. The answer to your 2 questions is no. I received pamphlets to
inform me about possible side effects from the various chemo and maintenance drugs. The communication over the patient portal and the monthly checks with an onco nurse are good and timely, I can voice all my concerns and ask. I learned to take initiative for myself, I scheduled appointments with other specialty physicians as I needed them and keep a record of my questions for my next appointment. This works for me.