My Husband, My Life, My Love, My Family, My Cancer
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Laurie, whatever you decide hun, we're here for you
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Booboo, You’ve had a lot of time to deal with feeling lousy and think about how you want to proceed. I hope your upcoming pet scan gives you some useful info. Thanks for giving us your thoughts. It gives us some understanding of what you’re going through and what’s likely ahead for us too. Sending you a gentle hug. 💕
BevJen, I’m so sorry to hear of your IR problem. I agree with the others that his honesty is admirable but it’s still a very frustrating event to have to go through the procedure again. I’m glad you won’t be delayed too much and scheduling is already happening. (I hope you posted on this page, I know we read a few of the same threads.)
Candy, I hope you had an ok day today. I’m sorry I don’t have any solutions to offer for your boredom and loneliness in these Covid times. I don’t have any productive hobbies either and waste a lot of time with tv and playing games and reading on my iPad. I like crossword puzzles and jigsaw puzzles, and try to get out for a mile or so walk when the weather is decent. It’s a lot of sitting on most days and I know I should do more.
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Laurie, I don't think anyone here would second guess your choices to continue treatment or go to hospice. That is something totally up to you. I can totally understand not wanting to keep trying treatments that make you sick to the point of illness. If they can control your pain and allow qol, that would give enjoyment at least and time well spent. Not an easy decision but completely yours.
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Good evening all
Booboo so glad you finally met the palliative group and can look forward to some QOL soon. Do you know when you will start methadone? I only know about people using it to get off heroin but it can probably be given in doses that are geared to your needs. Let me know how your schedule is so we can squeeze our outing in. Hugs sent
Tanya
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So very sad to hear of all the loses due to COVID and other ailments. I fill for all of you who are grieving.
Tanya, hope your friend will find something to control her pain.
Mae, it looks like word's gotten out your place is THE place to hang out.
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booboo, I'm so sorry for all you're going through... My husband and I were talking last night. He has a friend whose mother has been ill. She's in the hospital but wants to come home with hospice. The friend said, "I can't believe she's giving up." My husband strongly disagreed with that statement. Since when does not giving up mean that you have to suffer with treatment, side effects, and a poor QOL?
We would never tell someone to "not give up" or "keep fighting". It's never another person's decision to decide when someone else should either keep fighting or just let it go and find peace.
I hope you find peace in your journey. You know you are loved here.
Carol
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The decision to continue or stop treatment is totally up to the patient themselves with as much input as they choose to get from their families. In the end, it is totally their decision. The ignorant remarks about "I can't believe they are giving up" are from people who have been fortunate not to have to walk in the person's shoes who is making a decision like that. I do my level best to NEVER say anything against a person's right to stop treatment, nor would I encourage further treatment either if they have decided to stop for qol or whatever reason they are going through. Only person I can decide for is myself.
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Thank you Mel, Candy, Carol, Mara, Tanya, Rosie, and Moth. I really truly appreciate you all so much, and thank you for your understanding. I’ll let you know what happens after the Dec. scan and then the meeting with my MO in Jan. God bless all of you
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I am thankful for today
It was another quiet day alone at home. Cloudy and rainy. Nothing going on, nothing to do. But.... this afternoon I sat on my recliner, by my window, with my cat on my lap and felt peaceful. I don't know if I can explain it, but my mind was not racing. Just calm.
Some days the quiet, the boredom makes me feel like I can crawl out of my skin. My mind races and I feel like I am going crazy.
But today it was not that way. So for today I am thankful.
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I completely understand the skin Crawl feeling. Boy can I ever !! You all speak my language.
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I think I am losing it.
My sister in law died last night after 11 months of treatment of tongue cancer metastatic to lung. My sister has failed standard tx for metastastic uterine carcinosarcoma, now trying Keytruda as last resort. One brother is under tx for metastastic prostate ca, the other brother under tx for tonsil ca with lymph involvement.
I am overwhelmed. No need to respond, just needed to talk about it.
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Oh, Sandi, that feels like just too much to bear. Wishing all of you the comfort and courage that you need.
(((hugs)))
Carol
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oh Sandibeach, that's really much too much. You come curl up on the couch and we'll cover you with a fuzzy blankie and rub your back
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I'm so tired. Mental drain
I've said on other threads how important it is to trust your team and I do....but you also have to advocate. I've asked once before if SABR outside a trial was possible or if was even "worth" trying to get and the RO said no to both. But I've since heard of a person with br ca in a different province getting it for a lung oligoprogression outside a trial and so I drafted 1 more email. I almost didn't. I'm so tired suddenly. But dh reminded me that I'm a no regrets type of person. So I put on Tom Cochrane's No Regrets song and sent it.
I have chemo and immunotherapy tomorrow . Since I'm now getting the immuno from Roche, I have to go to 2 different clinics,🙄.
Friday is the ct mapping for radiation. So it's really my last chance to ask if SABR is absolutely positively off the table.. because it's different mapping. I expect they'll say no. But I'll know I tried.
Reminds that because of the location of my tumor I asked about radiating the mediastinal lymph in 2018. They said good question but not required. Guess where 1 of my.mets is 😢 But again, I asked. And maybe it wouldn't have mattered...
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Good evening
Booboo there was a lady Minnie who used to frequent here more often but she went in hospice to get pain under control. I know that’s not what you mean but the pain makes me cranky crabby and short tempered. Whatever you decide and whatever tests I’ll be right here praying with you and for you Laurie.
Sandibeach57 we’re all on the couch waiting with whatever you need to get through this. Hugs 🫂
Candy I know that feeling. I’m glad you achieved that today. I tried but it didn’t happen today so I’ll look for that moment tomorrow.
Moth keep asking you just need one member of your team to find it plausible. You have a lot coming up quickly. Hopefully this round of TX will be tolerable.
Bliss thanks for asking about my friend. I don’t know what she decided I gave her an old walker and some MM concoctions and sometimes only opioids touch the pain. I did read on here that someone was prescribed methadone.
For all who celebrate Thanksgiving have a happy one.
Tanya
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SandiBeach, we're sorry for your loss and all you're going through. We're thinking of you and sending virtual hugs your way.
The Mods
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Sandi,
There really are no exact words of comfort when someone passes, but we are here for you to come for a rest. Sometimes that’s exactly what is needed. As Moth said, come and rest while we take care of you with hot tea, scones, and plenty of hugs. So sorry this is all happening.
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Tanya,
You may be correct. I may only need palliative care to get the pain under control and then try something else. Thank you for caring and your prayers.
Moth, I hear you. Being your own advocate takes a lot of energy—energy that we just don’t always have. Is there anyone who could go with you to advocate for you?
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I haven't posted much but I do care about all here. I am thankful for you all and for BCO today and everyday. Happy Thanksgiving!
Sandibeach, I'm so sorry for your loss.
Mel, thank you for letting me quietly drop in and hang out in your livingroom.
Yesterday I had scans, labwork, and an appointment with my MO following cycle 15 of Ibrance (day 5 of week off). My ANC WAS .67. I will have labs again next Wednesday. After cycle 14 my ANC was .71 so I had to wait and extra week before starting cycle 15. They may consider a dose reduction.
But...scans showed slight progression in left sacral ala and L2 vertebral body. I have some increased pain in those areas. We talked about pain meds and possibly radiation. I don't feel the pain is enough the do more than OTC. May try lido patches. I will be continuing with I/F for now as progression is slight. Any thought you can share?
I currently work full time in a hospital procedure area. I can stay out of COVID positive cases for the most part but not always. Most of those patients would wait until quarantine was over but there are emergencies. Ugh, I don't know what do.
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Hello to all, and Happy Thanksgiving!
Just checking in today -- hope everyone has a peaceful day.
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Sandibeach- Oh my, so much right now for you and your family. Gentle hugs from here.
Moth- By sending that email you can say that you are leaving no stone unturned. I am that way too. You did your best. If they deny the SABR you know you did everything in your power and maybe this was not the right road for you.
Dutchiris- What dose are you on? I am on 75mg (for 3 years now) and I am now on the take 5 days/ off 2 days schedule due to low ANC. It has helped some--my ANC was 0.5 (500) at one point on the regular dosing, now it is 0.9 (900). I hope you get a better response from lido patches than I did. For me it was like putting on a piece of tape, no response whatsoever.
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Candy, I'm still on 125mg. She did say not to order my next cycle yet until we see the labs.
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When I read the posts on here I often have no words to respond to the emotional and physical pain that all you endure. It leaves me gut-wrenched at the path cancer has in our lives. But then I read the support that is found here - pocket duty, virtual hugs, sofas with cozy blankets..... In a year of sheer craziness, this is where I find honesty, understanding and strength. Peace to all
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well said Goldens. Well said
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Sandi, of course we are all going to respond to your devastating news. I am so so sorry about your SIL passing away and the trauma she must have gone through with tongue cancer. I am thinking of you and your family and know you still have so much going on. My sincerest condolences to you and everyone who knew her.
In everyone's pocket who needs it, thinking dutchiris, Moth, Sandi and everyone.
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Happy Thanksgiving to my US friends. I know it will be different this year but still wanted to extend the sentiment.
I am not doing anything exciting, a couple of pairs of underwear I ordered have arrived for pickup at a store so going to get those, going to incoroporate some walking in this trip and may get beans at the nearby grocery store too. Once I get home, more surveys, walking, lunch and such is all that is left.
Again, my thoughts are with anyone struggling and I am holding you close to me.
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Hi all! We’re just hanging out on the deck while the turkey is cooking and enjoying a glass with a view.
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illimae, that's lovely!
Edited to say - the view AND the wine!
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Lovely view Mae, enjoy the wine and turkey later on.
Just got back from the package pickup and a wee shop at my grocery store. So nice to bump into someone I worked with in the grocery store and we chatted it up for about 20 mins which was really nice too. I can forget how much in person interactions really do matter for us in addition to our virtual ones.
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