Starting Chemo May 2021
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Oh STJA16 -- I am so frustrated right there with you. I hate it when these medical "professionals" are loosey-goosey about processes and procedures because folks like you end up with the pain, suffering, and infections that result. I really feel for you. Best of luck.
Relative to Polly -- I'm happy to report that brain surgery was successful!! WooHoo! They removed the tumor, and it was indeed cancerous. Her motor and cognitive skills are good. She's in a fair amount of pain from the incision in her head but that should subside over time. Thank you all for your thoughts and prayers. Now she has to recover from the surgery, hopefully sneak in a chemo session to attack the liver and lung tumors, and then do radiation to corral any leftover cancer cells in her brain. One day at a time.
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BLMike, I’m glad Polly’s surgery went well
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BLMike - Thanks so much for the update on Polly. That's great news about the surgery! I hope she's able to get some relief from the pain soon and that her recovery goes well. We'll continue to send positive thoughts to both of you.
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BLMike that is great news about Polly's surgery! I hope the pain subsides soon and that her recovery goes smoothly. Thinking of you both so much. Keeping the good thoughts and prayers going your way.
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....And on entirely different note - really different, I just have to share this incredibly awful conversation I had with a neighbor yesterday - with all of you. I know people say things that are really yukki and certainly they don't mean it to hurt us, but yikes. This woman wins the Gold Medal for "Unbelievable Things People Say to Cancer Patients." Warning - it might upset you, so stop here if you don't feel like reading about someone's absolute insensitivity and rudeness.
So: I'm walking slowly down my street trying to get some exercise...and a neighbor - about 65 - bolts out of her house and calls my name. I've walked by her zillions of times, but she never pays any attention to me or anyone. Anyway, today she bolts out, calls me - and comes up to me breathless "Cancer?" - looking me up and down.
Me: "yes. Breast cancer." Then I told her a bit about surgeries and chemo and upcoming radiation. And she says the following things, without an ounce of compassion in her voice or face - in no particular order (she's a nurse by the way): "be sure to focus on eating mostly plant based proteins, because, well, you'll get imbalanced if you eat animal based proteins and also, well (looks me up and down), you're a nice, healthy weight now but you don't want to get too much more plump" - Yup.
And then: "was it a bilateral mastectomy?" (Staring at my boobs). Me: No. Then: "well, you LOOK HEALTHY, not pale, you haven't lost weight - so if it wasn't for the hair, I wouldn't have known."
Me: "yes, the hair is the hardest side effect because it doesn't afford me ANY PRIVACY and believe it or not, I may chat a lot but I'm a VERY PRIVATE person." Well, she goes on and on about how "you know, nowadays, people don't die of cancer the same way anymore - things have really progressed." Well - I wanted to say "thank GOD YOU TOLD ME THAT OR I'd still be fearing for my life right now." But instead I nodded and said "yup, thank god" - and I said " I'm moving slowly and I'm low energy so I need to keep walking to get home," She says "let's walk to the mailboxes together." Um, no. So I said I'd accompany her to the corner and go back. She picks up speed and starts walking ahead of me - um no. I am slow and I'm not keeping up with her. She notices and slows down.
(side note, for the last 3 years I was the primary caretaker of my husband's Mom - she lived with us - she has dementia - and she moved out of our house the week of my diagnosis)
Finally: She says "Taking care of your demented mother in law was too hard on you - that had to be so stressful. I have told my husband over and over that I was worried that the stress would kill you or make you sick. Well, here you are." I said "she moved out the week I was diagnosed." And she says - ready? "Too late - the stress had already done it to you."
Yup, this was a real conversation.
People say a lot of things, don't they.
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MaineJen, people can be so oblivious! Honestly, i have no words. I am sorry this lady accosted you.
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This woman is a nurse??!!!! I think this wins the insensitive sweepstakes.
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MaineJen - I am so shocked and sorry that you were subjected to this! The only explanation I can think of for such utter insensitivity and lack of compassion is that your neighbor found a HuffPost article on "10 Things Never to Say to Someone Going Through Cancer Treatment" and she missed the word "Never" in the title. Ugh!
Sending hugs and wishes for a good rest of your week (with no further encounters with the neighbor, at least not for a very long time!).
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MarineJen
OMG. So sorry this happened. I had to take a moment to think how would i have reacted perhaps the same as you did. But I hope you have an alternate walking path that does not go by her house. Not sure i could be polite next time.
One of the things that I did for myself, my friends and colleagues was two newsletters which I mailed. Old school I know. It was very therapeutic for me to write it. In my second and final newsletter that went out this week I added a section called Just Saying. I spoke about how words matter and shared some of the positive and supportive words I have received in texts and cards and emails. I also shared what I look forward to hearing like it's great to see you and welcome back or I missed you. I sure hope they get the point that sometimes it's best to follow Mom's advice...if you can't say something nice, say nothing.
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Thank you all for your supportive thoughts. AnnSOptera: Omg I laughed really hard reading your note about: " "10 Things Never to Say to Someone Going Through Cancer Treatment" and she missed the word "Never" in the title." You cracked me up with that! LOL! And STJA16: I love that you wrote newsletters and had a section called "just Saying." That is such amazing self-advocacy and self-care. I'm so impressed!
TXLorelei - "the insensitive sweepstakes" OMG LOL! You also gave me a good chuckle.
AlwaysMeC - Thank you for your kind words and understanding.
I love this group. Thank you all for your warm thoughts, support and sense of humor.
Sending you all loads of positive energy and appreciation for this coming weekend.
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Looks like my wife, Polly, is losing her battle with the MBC in her liver. A week or so ago she got through the surgery to remove the tumor on her brain shockingly well, but while that was happening and she was off chemo, the liver mets have run wild. Her liver enzymes are in the 500's and her belly is extended like she's pregnant. This is all due to the liver. Although she's not yet jaundice, her MO expects her to be soon. As a result of all of this, yesterday her MO recommended hospice care. This is a difficult pill for us both to swallow even though we knew we'd eventually get there. You never think the end is going to be this soon do you?
I thank you for letting me participate in this thread on Polly's behalf, and I wish you all peace and pain-free days.
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Oh BLMike, my heart is aching for you and for Polly. Please know I am holding you both in my heart and prayers. And yes: You never know, so each moment matters a lot. I think we're all acutely aware of that, at least in this group. Please keep us posted and we hope she is able to stay comfortable, even through this excruciatingly difficult time. And we are here for you, too. Thank you for sharing and for being such a devoted, wonderful husband. She's one blessed woman.
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BLMike -- I can't say it any more eloquently than MaineJen did. We are here for you and Polly. We are thinking of you and hoping that Polly is able to find some moments of peace and comfort right now. She is incredibly lucky to have you by her side, supporting and loving her at every moment. Please take care.
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BLMike, I’m so sorry to hear about Polly. Thinking of both of you.
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I come here from the June Chemo thread to read what was ahead of me. And I’m overcome with sadness for you, BLMike and Polly. I wish you comfort and peace.
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BLMike, my heart breaks for you, Polly and your family. Thanks for allowing us to share in this with you. You are a blessing to her and to us. My thoughts and prayers are with you all.
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Monachandthemilkweed, welcome.
All, I had my 4th and final chemo this week. They used a vein for chemo not the port even though the blood cultures were negative. It is pretty obvious that something is wrong with the port. This was a tough week but i am managing and counting each day. I am fatigued. I did start back to work on Monday. They were very understanding and I worked a little and slept a lot. Then Friday I had to get the infected chemo port out. It was a procedure in the surgeons office. Not bad. I expected to have just as must pain as it was to put it in, but I was pleasantly surprised. I have some pain but it is manageable with Tylenol. I was already taking Tylenol to help with the bone pain. I know I will slowly feel better into next week and should be better and stronger every day. One day at a time. I have several follow up appointments and blood tests so while the last chemo day was a milestone, I don't feel like it is time to acknowledge or celebrate yet. Talk soon.
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On Friday, I posted how my wife's MO recommended hospice for Polly. Unfortunately, we never got that far as Polly passed away today in the hospital. She had severe pain last night and we called an ambulance and took her to the ER. They tried their best to control the pain and after many hours, they finally got her some relief from the pain in her stomach and liver areas. Shortly thereafter she stopped breathing. I just think that her body couldn't take any more pain. About 15 minutes before she passed, I told her I loved her. At least now she's finally free of all of that pain.
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BLMike, I don't even know what to say. This hits us in this group hard. My condolences to you and your family. This is a great loss. People always say to let us know if you need anything and we struggle to even know what that may be. But seriously, if you need anything, let us know. She is at peace and pain free. Now you live on with her memory as she would want you to. Praying for you.
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BLMike. This is very painful and I'm heartbroken for you and for your loved ones. Please know you are in our hearts and prayers here and I'm so sad and sorry for your tremendous loss. Thank God she's no longer in pain, though. This does hit us all hard as we all care very much about you, Polly and one another. Sending hugs and love across the internet and miles, wherever you may be.
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BLMike - There are no words. I’m so sorry. I hope you can take some comfort in knowing that you were there for her at every step, giving her love and support right through her final moments, which I’m sure was so important for her. I continue to hold you in my thoughts.
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Cross-post from Liver METS:
Thank everyone for your kind words. Although the last few days have been difficult (as will the next few), I recognize I'll have good days and bad days from many weeks/months/years.
You all have no idea how helpful and what an inspiration you were to Polly and me. It was so helpful to hear the the successes (and even the failures) as each of you pursued your own MBC journey. Having said that, now it's time for me to sign off and wish each of you peace and pain-free days. Thanks again for allowing me to participate.
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I want to send my sympathy to Polly’s husband. You were a real rock for her. I haven’t posted on here because I’m older and not tech savvy. So I don’t know all the lingo. I’m 5 treatments down and 1more to go then scans to see if liver masses have shrunk. My biggest SE is the sore tongue and no taste or smell so don’t care if I eat. I try to drink protein drinks. You all are amazing and so helpful and it’s good to hear from others. Hard to believe some folks are so insensitive. Prayers for all.
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OhioNana, welcome to the group. I am also 5 of 6 in of TCHP, and definitely struggling with the loss of smell, taste and sensitivity to textures as well. During the end of session 5 I was almost getting some tastes back and eating wasn't feeling like a task. I am sending you positivity in hopes that you get the results you need.
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HI everyone
My last chemo was via a vein as my port was infected and removed. However the vein was infiltrated so i have been referred to a wound care specialist. I have a 3 inch red area around the infusion site in my arm where clearly something leaked out of the vein. Its taken over 2 weeks to get an appointment and it is finally today. However i have 2 ointments that i have been using on the area. Seems to be getting better. The vein hurts when i press on it.
Hope you are all doing the best you can. Stay encouraged.
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STJA16, congratulations for getting through chemo!
I had my port removed halfway through because of a complication with the incision, and thought I would be able to get chemo through veins. During premeds, the vein they used started hurting and we had to stop the session. I got a picc put in.
The vein became red and hardened. It's now a little dark, and has softened up a bit. The worst of the soreness is gone, but it is still a little tender when I press the area. It's been seven weeks since it happened.
One of the ladies in my support group had a complication with her port that was caused my the doctor's nurse. She accidentally pierced the line, and then proceeded with the infusion. The chemo spread to the surrounding tissue. She ended up having that tissue removed during surgery because it was too damaged.
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AlwaysMeC, Thanks for that info.
The wound Doctor said my infiltrated vein and surrounding tissue is not infected. YEAH!!. It is actually healing nicely. He said the skin was dry. To stop using the 2 ointments I was prescribed and to use Cocoa butter with vitamin E. I happen to have that already from my surgery. I do feel the tenderness of the vein so expect it will take longer to heal. Sorry to hear about the lady in your support group. That sucks.
I am feeling stronger every day. Hope everyone is healing well.
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I start my Chemo journey on September 7th. Taxol and Herceptin for once a week for 12 weeks and then Herceptin for an additional 40 weeks. Radiation every day for a month once the Taxol is complete. I am nervous, scared and anxious but also can't wait to begin the journey , to get closer to the end of treatment. I don't know what to expect- do most people have some sort of reaction to these drugs? Is hair loss a for sure thing? Any insights welcome.
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