Life does not end with a stage IV diagnosis (really!)
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Stilts, Sofia is a rescue Bulldog, too. We rescued her when she was 2 and a half.
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Lita, great photos of you, your daughter and your rescue dog.
Madeline, who is that happy lil baby? How sweet
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Adorable baby girl! Who is she?
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Oh my gosh Harper and Miles pics just make me smile! Sooooo cute and handsome. And Sophia as well Lita! What a character.... Happy New Year all!
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I also posted this on the Bone Mets forum.
As some of you know, I had some breathing issues prior to Christmas for a couple of weeks so had a CT done just before Christmas. The results came back with the cancer now in both lungs, previously only in one lobe of the left lung, that was in September. Also the Mets that were already in my liver are bigger and I have new smaller Mets. I asked for and got a hospice referral and the intake nurse came to my home today to start that process. I'm also on O2 24/7, and have doubled my used of pain meds due to back pain in my sacrum and coccyx. The cancer is now a pain in my ass.....(do laugh here)
I'm still ambulatory, drive, grocery shop, Cook, you know, activities of daily living. I don't look sick and have had several days in a row of feeling fairly decently, though with continued low energy. I'm going over to some Jewish friends' home tomorrow for dinner, and have plans for breakfast or lunch a couple of days next week. Seeing my MO on Wednesday, and will start the process to get the prescription for life ending drugs. Thankfully, CA legalized that in the last election and it became law in June, and my MO is wiling to prescribe.
As many of you have said, this forum is a lifeline. I don't know how I would've managed, even though I'm surrounded by great friends, several of whom work in oncology. You all just get it...and I thank you for that.
Love,
Patti
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thoughts and prayers for you Patti.
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Patti,
I am so sorry to hear of your progression, but you sound at peace with the decisions you've made. I love that you have urged us to laugh, and that you still can too. Take care.
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All,
Wanted to say how much I appreciate your posts, reminders to cherish each day.
Living with this horrible disease sucks and interacting with others in the same situation helps a lot!
Sending you love and good thoughts,
Helga
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Sattipearl, I am sorry about the results of the scan and your breathing issues. And yet, here you go about daily life, doing all the routine things and not even looking like you are ill. That you are seeing your doctor to start the process for meds that could assist your passing is very sobering to read. My thoughts are with you. I hope you have more days where you can spend time with friends and continue to have days where you feel reasonably decent. I agree, this forum is so helpful to all of us. Hugs for you.
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Wanting to wish everyone a very happy New Year. We don't know what the year will bring, but whether it's good or bad, I hope we can all make peace with it and minimize suffering.
Caryn
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My New Year's Eve date!
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Patti, sending you my best wishes this New Year's Eve. Your sense of humor is a gift. I appreciate it and hope you do, too.
Tina
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Exb
rnxgal. Looks like you had the best date ever!Babs
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Patti, I am so sorry to hear of your progression. May the rest of your days, and I sincerely hope there are many, many more, bring you peace and joy with minimal pain. You are in my thoughts and prayers, today and always.0
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Caryn, what a cutie Miles is, full of charm!
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Patti, I am so sorry for all that you are going through. It does sound like you are at peace with your decisions and I admire your ability to deal with everything with such grace and thoughtfulness. I do hope that you continue to be able to go about everyday life for some time to come and that prescription sits on your shelf until it is full of cobwebs and dust. Your sense of humor and contributions to this forum are invaluable and we appreciate you so much. Take care. Caryn, miles is such a handsome little doll!
Last night my DH and i went out to dinner at a very nice local restaurant and were having a wonderful New Year's date. As we were leaving, we ran into a couple we haven't seen in several years, parents from our kids school days. The woman's a nurse who began to inquire about " a rumor I heard that your daughter has an illness, cancer or something?" I went on to explain that actually it is me and a short bio on what is going on. Granted she was a bit "buzzed" but she reacted by exclaiming fairly loudly "HOW did you get cancer??!!! HOW did it happen??!! Does it run in your family? Didn't you get your annual mammograms??!!! I just don't understand!" I very calmly tried to give her a short education on some facts and gracefully extricate myself from her presence. But needless to say, I left rather upset and felt like my lovely evening with my DH had been ruined. We were supposed to go out for some music but then I just felt tired and wanted to go home. She has been an RN for YEARS! I cannot understand the ignorance and insensitivity of some people.....
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Artist, there is a thread on this forum called Bonfire of the Goddesses. It is a place to air your grievances about absolutely any and all things and anyone and "throw them into the bonfire."
Early on when I was dealing with mbc and so incredibly emotional, I wrote something on that page that upset me a great deal, about how I was treated wrongly by a substitute nurse at my oncologist's office. Another woman on this forum immediately wrote in response to my post, "Stand back, I am going to kick that bitch into the fire for you!"
I was wonderfully shocked by her protective, no nonsense reply; it made me feel so good and so validated.
So please allow me to step in and kick that nurse "friend" into the friggin bonfire!
Regardless of whether she was somewhat buzzed, she was totally and completely out of line. And what kind of question is that to ask, " didn't you get mammorams? " Especially for her being a nurse. Completely insensitive at any time but doubly so because you were out on New Year's Eve. There were so many better ways she could have handled the situation and so many other appropriate things she could have said that are far more sensitive to the situation.
I don't know if I would go out of my way to speak to her, but I would have something prepared to say if you run into her again to let her know her comments were unwelcome and cruel.
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Artist, I feel so sad for you. We don't get that many chances to go out and celebrate, and when we go out we want to forget about Mr. Cancer for a while. I agree with Divine. That so called nurse should have known better. Throw her butt into the flames!
Talk about blaming the victim...the questions she asked. Geez, even people who've never smoked get lung cancer. Asking about mammograms takes the cake. So many cancer's aren't even detected by mammography. Mine wasn't. There are a lot of us who get dx'd with stage 4 right from the gate.
I hope you never run into her again.
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Artist, I am so sorry it upset you. Those types of things are very difficult to know what to say in the moment. I can always think of things to say after the fact.
I love the advice that was given though! Kick her into the fire!
Hope you had a happy new year
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Artist, I think we will all go to bat for you and kick her into the fire. There is no excuse for that. I have found that people in general just don't think before they speak, they can say some of the most insensitive things and not even think twice about it. I hope you can just forget about it, consider her not worthy of robbing you of anymore of your thoughts. Wishing you the best.
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Artist. For a nurse to be so stupid! Kick her right into the flames!!! Love that. Some people just say the dumbest things!!!!
Bab
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Artis I'm sorry your date was ruined it sometimes takes so little to upset us. Though this was a bit more than little. Some people can be such doorknobs. Feel bad for her she has no clue and in her profession that's sad. From now on stay away from the dark side stay in the light
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Thanks Divine for the link. That sounds perfect to me! Kick her in the fire! LOL! Thanks everyone else too for the support. I did get over it by the next day but sometimes I just want to scream out at people what I am really thinking. Problem is I never think of a good comeback until I am long past the situation. I know we all deal with ignorant or insensitive comments and behavior and I wish now that I had not let it ruin my evening.......Part of us moving to the new house is that we are after 30 years putting some distance between us and this small town atmosphere. I will miss it in some ways and other ways NOT! Looking forward to a fresh start with some city amenities and a little more anonymity! Happy New Year all, I am wishing the best in health and happiness for every one of you.
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Artist,
I had that happen once, and I said, 'I Beg your pardon!' Repeatedly. Not scream it, just quietly. To everything she said.
Or walked away considering that alcohol was involved. Sounds like a lot. And say, why don't you call me to discuss this when you haven't had so much to drink.
Be bold, ladies
I met my hospice nurse Friday. After she found out everything she wanted, she said something I can't remember what, that maybe think that we are going to have a long relationship so I said to her that I was planning to take the death with dignity route fairly soon. She said we should talk about that. I said I've talked about that to a great many people who know me well -- it's not just something I've been sitting around thinking about. I said you look at my body and you have some numbers called my vitals and you have Notes on a page from the intake nurse and my doctor, and you think you know me but you don't know me. You don't know what my life was like before cancer. You don't know how many partnerships I had with people and the amazing things that we got done, and how big my life was, and how I can't do hardly anything I used to do, and you have absolutely no idea what that's like for me. You don't know me -- don't act like you do. I said all that very softly, and at the end of my rave, she said, You're right I don't know you. I completely support your plan.
I think we're going to get along fine and I also think she can see that I am going to speak my mind which I am wont to do more than ever.
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Last night was horrible. I was so sick, at a couple of points I couldn'tdecide which end to point at the toilet. Fortunately, I choose correctly both times.
I texted my oncology nurse ex-husband and he recommended Pedialyte. 1 quart later, I felt brand new. Holy cow. I had asked if he gives his patients lactated ringers and he said they do. So I was going to ask my doc tomorrow or the hospice nurse if I could get an unfusion. This work great so I'm ordering a case tomorrow!
Pedialyte, who knew.
Love,
Patti
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Patti, fist in the air for you telling the hospice nurse who is boss. It's your life and your decis ion.
Also, I'll look into getting myself some Pedialyte too.
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Satti, so glad you were able to find a quick and simple solution with the Pedialyte.
Your suggestions on what to say to tactless ignoramuses who overstep their boundaries in their cancer inquiries are so good. Like Artist, I often don't think of what to say until after an encounter, but I will try to remember some of your lines. I especially like telling someone to call me when they are not under the influence of alcohol (if that's the case) to discuss my health issues. It puts the focus right back on the blabbermouth.
[Really, that nurse was over the top. Who asks those kinds of questions, much less a nurse? "How did it happen? I don't understand!" Was this person born under a rock? Artist, I live in a small town, too, and know how some people fish for gossip. They act concerned but their real motive is to "get the scoop" to spread around to their friends.]
Satti , how perfect your comments to the hospice nurse were. We can all learn from them, and I know the words will teach the nurse how to better understand and meet the needs not just of you but also other hospice patients she will take care of.
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Patti,
I'm so happy you spoke your mind to the hospice nurse. It's annoying when we're all lumped into a group of cancer patients with a one-size-fits-all response. How could that nurse possibly "know" you after one meeting? Did she think she was going to change your mind about DWD? She was disrespectful, IMO, but fortunately listened to you and change course. I'm sorry you are in hospice and hope from this day on your needs are met, your friends and family are there to provide comfort and that you can continue to live large, as much as possible. We will be with you by your side, throughout and although physically none of can be there, know that we're hear spiritually and emotionally.
I like what DivineMrsM said, you taught that nurse a better way for future patients - that will be one of your lasting achievements.
Amy
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Amy, you are right, the best approach to hospice care is for individual treatments, not one size fits all. I didn't see the nurse as being disrespectful, tho. Perhaps she thought she could ease any anxiety Satti might have.
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