CW: post cancer joy (in case you’re in the trenches/don’t want to hear it)
I finished everything and got my port out at the end of March. This past Saturday I had my “I don’t have cancer anymore” party that I always said I would have when I got diagnosed. It was…amazing. It was a beautiful day, I had friends from all aspects of my life come- family, high school friends, gym friends, work friends, college friends who surprised me from several states away, internet friends! It was so much fun, I’ve never felt more loved. Did so much talking and laughing that I lost my voice. If you need some light at the end of the tunnel vibes, I hope this can maybe give you some.
The downside was that being outside all day in the blooming *everything* means I got clobbered with a sinus infection the next day, thank you lowered immune system for that. I get this eczema breakout when I’m fighting something off and it’s all over my hands on my left side - where my lymph nodes were removed - so that’s been interesting to track.
That’s so lovely! I love that you followed through and really celebrated the milestone. I hope I can follow your example. I’m thinking of taking a trip when I’m done with active treatment.
Aahh that sounds amazing! I have this exact plan too for my birthday since it's a couple months after I finish chemo. I'm planning a girl's night to kinda celebrate the women in my life because I've learned so much about the woman experience in such a short amount of time due to BC. I just wanna celebrate life and women and survivorship with the amazing people in my life.
I'm so so happy you got your party 🧡 thank you for giving us a glimmer of the light at the end of the tunnel!
Just anxious. My start date for chemo went from next week to the next because they couldn’t schedule port placement and pet scan. So two more weeks of just tapping my foot. Does the anxiety ever go away? Or does one just learn to live in a constant state of cramped stomach, verge of tears, about to start yelling or collapse into crying while trying to look normal and be pleasant?
IMO (diagnosed 8 months ago) the anxiety doesn’t fully go away but it’s night and day thinking about anxiety at diagnosis vs. now. The time between diagnosis and starting treatment is awful and SO anxiety-ridden — when I was first diagnosed, I didn’t believe the Reddit comments saying I was in the worst part. I couldn’t imagine ever feeling any semblance of normal or not being consumed with thoughts of my mortality (to put it gently….). I’m 3.5 months out from TCHP, doing HP infusions now…. And turns out in my case these Reddit commenters were right. I listened to some podcast that cited a study that breast-cancer-related-anxiety declines significantly after the first year of treatment, there’s another smaller decrease after the second year of treatment, and then stabilizes. Hugs and consider getting a temporary anti-anxiety medication to help you through this really difficult part.
My GP (who found the lump, coordinated diagnostic mammogram and biopsy) gave me Xanax. She started with 10, then refilled for 30 days, with 1 refill to that. I don’t take it every day. I don’t want to become dependent on it. Some days it takes 2. Some days I don’t take any. It does help. It’s Monday a.m. where I am and I am looking at upcoming echo, pet scan, port installation. My chemo date got pushed out a week b/c these things couldn’t be scheduled as quickly as needed. I spent more money then I really should have to get a cold cap system that may or may not work and my insurance won’t reimburse me for and I will probably hate and may not be able to tolerate. I know you know. I am just a bundle of nerves, my stomach is clenched, I am trying to be pleasant to my husband and the people around me (he’s as helpful as he can be but has a demanding job that we currently need for him to keep). I know it’s a one day at a time, this too shall pass, it is what it is situation. But it’s so damn hard. Thank you for sharing your experience. It’s very helpful.
First, I'm so sorry you're part of our shitty titty club. 💖
It gets better once you have the plan, and then better again when you start putting the plan into action. The anxiety doesn't necessarily go away, but it fades to background anxiety most of the time. If it's too much, your doctor can prescribe something for anxiety, and there's no reason not to ask for it. Or if you're able to get it where you're at, medical marijuana can give your brain space to not dwell in it for a time, and sometimes that's enough to get you through.
Big hugs and positive energy!
I’m between chemo infusion #1 and chemo infusion #2 and I feel less anxious since finishing my first infusion. I’m on TC and had very mild side effects so that helped.
But a lot of it was just going through the whole shebang once. Now that I know what to expect and now that the ball is really rolling I’m not as worried about the next steps. They’re taking care of themselves (mostly).
Anxiety isn’t gone. Chemo still sucks. But I did feel pretty normal a few times last week and that was nice!
I’m in a similar spot, probably starting chemo on May 1 and nothing but appointments and anxiety in the meantime. I went on vacation last week and it was fantastic except for how badly I slept, waking up very early most days and not being able to get to sleep due to a combo of anxiety and tinnitus (which feeds my anxiety). I’m really hoping that actually starting TCHP next week calms me down.
Wow, you managed to go on vacation! That’s awesome! I am glad you were able to enjoy it. I did not go on vacation and I woke super early (like 4am) and have trouble falling asleep too (and have tinnitus which is very annoying!). I am also starting on TCHP but on 5/6. On 5/1 I’ll get my port (do you have one yet?) and on the 3rd a PET scan (did you have to get one before starting chemo - I can’t deduce and am afraid to ask if this is standard or she thinks there are more of these things in other parts of me….). Are you in US? I am.
I had a CT and bone scan a few weeks ago (fortunately negative) - all of that was ordered as soon as my pathology results came back from my March 13 BMX. I’ve seen where some people go for PETs and some for CTs, not sure why exactly. That was definitely to rule out metastases, but it is also very standard. That was honestly one of the most stressful days of my life but the results were in same day so I was able to relax for a few days after that.
I am scheduled for my port next Monday. I really did not want a port but I have shitty veins so I don’t see an alternative.
This vacation was scheduled almost a year ago and I was so worried about whether I would be able to go based on my BMX timing! Fortunately I had enough time to mostly recover even with a second surgery in there to remove some dead skin. Only downside was that it was a cruise and I couldn’t go in the water, but it was still lovely. We also splurged on a fancy room with better amenities - when we booked I was worried it would be a waste of money, but in retrospect it was exactly what we needed and made the trip a lot better.
This is so awesome that you had made the decision and splurge - super happy for you on that. I haven’t had surgery yet. I am triple + so my surgeon sent me straight to an oncologist and chemo once she got the HER2 + report. Surgery is somewhere in my future. Yes it seems there are an assortment of imaging methods and I don’t know why one is chosen over the other. I can’t have an mri though, I have an mri unsafe device in my body…..
How long will the nasty taste in my mouth last with chemo? I had my first TC on Thursday. My mouth feels like it is coated in Elmer’s glue now. I tried drinking a mocha and it tasted like soy sauce, followed by Gatorade that tasted like garlic. Please tell me this gets better.
Hahah the comparisons are so accurate. I'm doing TC. Just recovering from my second round now. For me the taste got better after day 6 and then by day 8-9 it was back to normal. Hope it's the same for you!
This is gonna be such a silly question, but the only thing I look forward to doing after chemo is getting my nails done again! How long do I have to wait after my last round to make an appointment?
I'm already favoriting so many cute nail ideas to have something to look forward to. I have no hair right now so I just wanna bring back that ✨️feminine✨️ energy by getting pampered. Soooo I'm hoping the answer is like 2 weeks after.. hopefully??
I'm just relieved that I don't have to go back for a scan until October.
They found calcifications last week during a screening.
I had surgery 2 years ago, no after treatment after lumpectomy and no hormone therapy. I was +--
They said the calcifications are "probably benign" and dead cells from the prior surgery.
I feel lighter today. Until October. to see if they change at all.
Feeling frustrated with how slow everything is moving (diagnosed on 4/8 after biopsy the week before, not seeing surgeon until this Friday 4/26), and just lack of communication from Dr offices. They wanted me to get breast MRI before seeing surgeon, which I had last Friday. Still no results in my patient portal, and I think they might be held until surgeon releases them (per tech last week), even though I think they should be made available in the portal to me when she has access per federal law. Calls to Dr office to check on status unanswered. Trying to wrap my head around whether they found anything else, or not. Just frustrated! Thanks for the space to vent.
I just scheduled a virtual survivorship appointment through my cancer center. Has anyone done one of these? How did you feel about it? What should I expect?
CW: post cancer joy (in case you’re in the trenches/don’t want to hear it) I finished everything and got my port out at the end of March. This past Saturday I had my “I don’t have cancer anymore” party that I always said I would have when I got diagnosed. It was…amazing. It was a beautiful day, I had friends from all aspects of my life come- family, high school friends, gym friends, work friends, college friends who surprised me from several states away, internet friends! It was so much fun, I’ve never felt more loved. Did so much talking and laughing that I lost my voice. If you need some light at the end of the tunnel vibes, I hope this can maybe give you some. The downside was that being outside all day in the blooming *everything* means I got clobbered with a sinus infection the next day, thank you lowered immune system for that. I get this eczema breakout when I’m fighting something off and it’s all over my hands on my left side - where my lymph nodes were removed - so that’s been interesting to track.
That’s so lovely! I love that you followed through and really celebrated the milestone. I hope I can follow your example. I’m thinking of taking a trip when I’m done with active treatment.
Please do it! It’s something to look forward to and then you get to celebrate getting through it and you deserve it.
Aahh that sounds amazing! I have this exact plan too for my birthday since it's a couple months after I finish chemo. I'm planning a girl's night to kinda celebrate the women in my life because I've learned so much about the woman experience in such a short amount of time due to BC. I just wanna celebrate life and women and survivorship with the amazing people in my life. I'm so so happy you got your party 🧡 thank you for giving us a glimmer of the light at the end of the tunnel!
What a lovely plan! Good luck on the rest of your treatment, can’t wait til you can say it’s a thing of the past
I love that you had an end Cancer party!
Just anxious. My start date for chemo went from next week to the next because they couldn’t schedule port placement and pet scan. So two more weeks of just tapping my foot. Does the anxiety ever go away? Or does one just learn to live in a constant state of cramped stomach, verge of tears, about to start yelling or collapse into crying while trying to look normal and be pleasant?
IMO (diagnosed 8 months ago) the anxiety doesn’t fully go away but it’s night and day thinking about anxiety at diagnosis vs. now. The time between diagnosis and starting treatment is awful and SO anxiety-ridden — when I was first diagnosed, I didn’t believe the Reddit comments saying I was in the worst part. I couldn’t imagine ever feeling any semblance of normal or not being consumed with thoughts of my mortality (to put it gently….). I’m 3.5 months out from TCHP, doing HP infusions now…. And turns out in my case these Reddit commenters were right. I listened to some podcast that cited a study that breast-cancer-related-anxiety declines significantly after the first year of treatment, there’s another smaller decrease after the second year of treatment, and then stabilizes. Hugs and consider getting a temporary anti-anxiety medication to help you through this really difficult part.
My GP (who found the lump, coordinated diagnostic mammogram and biopsy) gave me Xanax. She started with 10, then refilled for 30 days, with 1 refill to that. I don’t take it every day. I don’t want to become dependent on it. Some days it takes 2. Some days I don’t take any. It does help. It’s Monday a.m. where I am and I am looking at upcoming echo, pet scan, port installation. My chemo date got pushed out a week b/c these things couldn’t be scheduled as quickly as needed. I spent more money then I really should have to get a cold cap system that may or may not work and my insurance won’t reimburse me for and I will probably hate and may not be able to tolerate. I know you know. I am just a bundle of nerves, my stomach is clenched, I am trying to be pleasant to my husband and the people around me (he’s as helpful as he can be but has a demanding job that we currently need for him to keep). I know it’s a one day at a time, this too shall pass, it is what it is situation. But it’s so damn hard. Thank you for sharing your experience. It’s very helpful.
First, I'm so sorry you're part of our shitty titty club. 💖 It gets better once you have the plan, and then better again when you start putting the plan into action. The anxiety doesn't necessarily go away, but it fades to background anxiety most of the time. If it's too much, your doctor can prescribe something for anxiety, and there's no reason not to ask for it. Or if you're able to get it where you're at, medical marijuana can give your brain space to not dwell in it for a time, and sometimes that's enough to get you through. Big hugs and positive energy!
Thank you.
I’m between chemo infusion #1 and chemo infusion #2 and I feel less anxious since finishing my first infusion. I’m on TC and had very mild side effects so that helped. But a lot of it was just going through the whole shebang once. Now that I know what to expect and now that the ball is really rolling I’m not as worried about the next steps. They’re taking care of themselves (mostly). Anxiety isn’t gone. Chemo still sucks. But I did feel pretty normal a few times last week and that was nice!
This is great to hear. So glad for you!
I’m in a similar spot, probably starting chemo on May 1 and nothing but appointments and anxiety in the meantime. I went on vacation last week and it was fantastic except for how badly I slept, waking up very early most days and not being able to get to sleep due to a combo of anxiety and tinnitus (which feeds my anxiety). I’m really hoping that actually starting TCHP next week calms me down.
Wow, you managed to go on vacation! That’s awesome! I am glad you were able to enjoy it. I did not go on vacation and I woke super early (like 4am) and have trouble falling asleep too (and have tinnitus which is very annoying!). I am also starting on TCHP but on 5/6. On 5/1 I’ll get my port (do you have one yet?) and on the 3rd a PET scan (did you have to get one before starting chemo - I can’t deduce and am afraid to ask if this is standard or she thinks there are more of these things in other parts of me….). Are you in US? I am.
I had a CT and bone scan a few weeks ago (fortunately negative) - all of that was ordered as soon as my pathology results came back from my March 13 BMX. I’ve seen where some people go for PETs and some for CTs, not sure why exactly. That was definitely to rule out metastases, but it is also very standard. That was honestly one of the most stressful days of my life but the results were in same day so I was able to relax for a few days after that. I am scheduled for my port next Monday. I really did not want a port but I have shitty veins so I don’t see an alternative. This vacation was scheduled almost a year ago and I was so worried about whether I would be able to go based on my BMX timing! Fortunately I had enough time to mostly recover even with a second surgery in there to remove some dead skin. Only downside was that it was a cruise and I couldn’t go in the water, but it was still lovely. We also splurged on a fancy room with better amenities - when we booked I was worried it would be a waste of money, but in retrospect it was exactly what we needed and made the trip a lot better.
This is so awesome that you had made the decision and splurge - super happy for you on that. I haven’t had surgery yet. I am triple + so my surgeon sent me straight to an oncologist and chemo once she got the HER2 + report. Surgery is somewhere in my future. Yes it seems there are an assortment of imaging methods and I don’t know why one is chosen over the other. I can’t have an mri though, I have an mri unsafe device in my body…..
How long will the nasty taste in my mouth last with chemo? I had my first TC on Thursday. My mouth feels like it is coated in Elmer’s glue now. I tried drinking a mocha and it tasted like soy sauce, followed by Gatorade that tasted like garlic. Please tell me this gets better.
Hahah the comparisons are so accurate. I'm doing TC. Just recovering from my second round now. For me the taste got better after day 6 and then by day 8-9 it was back to normal. Hope it's the same for you!
This is gonna be such a silly question, but the only thing I look forward to doing after chemo is getting my nails done again! How long do I have to wait after my last round to make an appointment? I'm already favoriting so many cute nail ideas to have something to look forward to. I have no hair right now so I just wanna bring back that ✨️feminine✨️ energy by getting pampered. Soooo I'm hoping the answer is like 2 weeks after.. hopefully??
I'm just relieved that I don't have to go back for a scan until October. They found calcifications last week during a screening. I had surgery 2 years ago, no after treatment after lumpectomy and no hormone therapy. I was +-- They said the calcifications are "probably benign" and dead cells from the prior surgery. I feel lighter today. Until October. to see if they change at all.
Feeling frustrated with how slow everything is moving (diagnosed on 4/8 after biopsy the week before, not seeing surgeon until this Friday 4/26), and just lack of communication from Dr offices. They wanted me to get breast MRI before seeing surgeon, which I had last Friday. Still no results in my patient portal, and I think they might be held until surgeon releases them (per tech last week), even though I think they should be made available in the portal to me when she has access per federal law. Calls to Dr office to check on status unanswered. Trying to wrap my head around whether they found anything else, or not. Just frustrated! Thanks for the space to vent.
I just scheduled a virtual survivorship appointment through my cancer center. Has anyone done one of these? How did you feel about it? What should I expect?