My Husband, My Life, My Love, My Family, My Cancer
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Mae, happy dancing for your stable mabel results
.Runor , enjoy your freedom from appointments and scanxiety. Good luck for the future.
Micmel, it is so hard to watch loved ones getting cancer. I cried more when my friend was initially diagnosed than I ever did for myself! Love to you both x
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I've been lurking but just wanted to add my voice to express love and support for Moth and her family right now. God bless you.
And for Runor - happy to hear you are off the Tamoxifen train. Awesome. And I join you in sending out that huge wave of healing for all
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Sending love to Moth, her family and friends here and where she is. Sending strength to her daughter as well being the one to keep us informed which we are grateful for.
Not doing a whole lot today. Washing the big blanket half at a time was a silly idea yesterday so decided that I would plug in the tub and use my washing wand. Afterward, bring the bigger Panda spinner and do it on top of a stepbench to drain right in the tub. I want them clean but don't feel safe with all the tools and stuff that could fall over on me and no railing on the side of the creepy stairs. I only have two blankets that cannot be washed in the portable so I can do that much, not worth carting them on the bus to the laundromat. Beyond that, going to walk post meals and just do some surveys and little games to make some extra money.
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Mae- Woohoo on good scans.
Mara- Glad kitty is doing better.
Hello everyone else.
I may not be on here for a few days. My 96 year old Dad went to the ER yesterday and now we are looking at Nursing Home Placement. I will check in here when I can.
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ohh Candy~ I am sending thoughts your way I’m sorry about your dad. Hope everything is ok. Hope you find the perfect place for him. It really does matter. Sending hugs.
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CANDY - good luck with your dad. This is often a draining experience but I hope it goes more smoothly for you.
MICMEL - somehow I had missed hearing about your sister. God. I hate this. Forgive me but the only good news is that you will be a support that her loving and well meaning non-cancer friends just can't be. The very fact that you KNOW... that is going to be invaluable to her. You know it and as time goes by she is going to know it too. I have just been a support person for a friend who has been through DCIS. They operated on her 3 times to try and get it all. She has little boobs and for the 3rd surgery the doc called in a plastic surgeon to try and salvage some reasonable looking breast. She sent me a pic of her boob a few days after surgery. Oh my god. Seriously? A plastic surgeon did that? It looked like something lumped together out of plastercene with a maraschino cherry plopped on for a nipple, all held together with upholstery thread looped in large, galloping stitches obviously made by a drunk person. I would have been MORTIFIED! She was muttering that she loves her friends and she knows they love her and all want to desperately do anything to help, but when they tell her she's a fighter and warrior and she's 'got this' she wants to tell them to fuck off. Yup. I get it. Mel, your sister will be so grateful for you. We should never underestimate what our own 'been there, done that' does to help another cancer patient. We are safe people to vent to. We get it. We really do.
MARA - I identified with your struggle to wash large blankets in the bathtub. I am a quilter. I have made king size quilts for my bed. There is NO WAY I would dream of stuffing them in the washing machine. I will not subject a quilt that took a year and cost that much to make, to the torture of agitation! Plus it would blow up my washing machine, these quilts are huge and heavy when wet. So in the tub they go. To be clear, they are not heavily soiled. I use a top sheet - ALWAYS- and threaten grease monkey husband with a slow, tortured death should he come to bed greasy and defile the quilt with varsol, diesel fuel, hydraulic fluid or grease of any type. (yes, all of this goes through my laundry daily, my laundry room smells like a gas station). I have a designated toilet plunger used only for cleaning quilts. I fill the tub add a dollop of my special soap, and plunge away. It's not a lot easier than kneeling and agitating by hand, but a bit easier. I wash a quilt and hang it to dry over the deck rail before I put it in storage. The trick is the soap I use. It's called SOAK. Comes in several scents. You can buy it at fabric shops or quilt shops. It is designed to NOT NEED RINSING !! This can be a game changer. Obviously, if a dirty dog or husband sleeps on your bed, this is not the right soap as this is for light cleaning. But if your blankets just need a quick freshen and light clean, this soap means only one trip through the tub. No refilling and rinsing. So I wash in a tub of water with a bit of this soap. Drain and schlepp the quilt in a pile at the back of the tub and let it drain for a few hours. Then I lug it to the washing machine and stuff it in for a short spin, to remove more water. (I can spin if I'm careful, but no washing in there!), then over the deck rail on a sunny day to dry in the sun. If you are interested, find some SOAK as it might make your blanket washing task easier. I love it!Hugs to all.
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Runor~ Hello. Congrats on your news of no more meds. How wonderful! Thanks for mentioning my sister. I am having a hard time. She doesn't have anyone. Her DH is like a very small stinky hairy dog that never bathes or his owners never pay attention to him. They are not close in anyway. That is going fo be hard for her. I'm worried. She's nine years older than me. I don't know a lot about lymphoma. She's set to start chemo next week already. She has no idea what's coming down the tracks. I feel heart broken. Ugh!
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Mae, I would like to echo what the others have said...so happy to hear you are stable.
Rumor, I am also very happy to hear your good news. I wish you well. It must feel surreal to be told "go live your life." I truly hope you do exactly that.
Mel, oh how I understand what you are feeling...with one twist. My youngest sister was first to get a BC dx, so I'm like your sister. Doesn't matter. It still sucks. I remember calling Pam many times for advice on everything from what to eat/drink to which laxative was best. However, I found that we were on our own journey to figure out how to manage this beast. Our treatment plans and outcomes were very different, so it was kind of hard to give/get advice. In any case, just knowing that you are a phone call away is huge. I'm sorry you are going through this.
I was thinking about what things have impacted me the most since being diagnosed, and my #1 most helpful thing was finding this site and Mel's livingroom. I am so, so grateful for each of you.
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I read today something that really disturbed me about Olivia Newton-John. It was reported that she was in a lot of pain in the days before she died. Why? I guess I have been naive to think that the drugs available through hospice would allow us to pass peacefully. I always see that in obituaries about passing peacefully. Are bone mets more painful to control in the end? I'm not sure I've seen this topic before, so if there is anyone who has knowledge about end of life pain, I'd like to know more.
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Candy, I am sorry about your Dad but glad that he has you and hopefully others around him, helping to find the best place for good care as well. In your pocket as well as a special pocket for him too.
Mel, thinking of you and your sister. She may not have immediate people, she has you and your family who will do everything you can to help her through and find supports of her particular cancer. She can also hang out here for support of course as well as we are good with our balls of love as Runor so kindly termed it.
Runor, the bathtub worked well this morning. I also use a washing wand I bought from Amazon, agitates the clothing or towels well. Sometimes the portable washer gets tired for a few minutes and in goes the washing wand. The only issue was having a super skinny hallway but with my wash wand, it went well. Tub is slow draining so at some point will put some baking soda and vinegar down the drain and put the plug in to build up pressure. It is nice to know how easy it is to wash stuff and set up the Panda spinner as well. I also dissolved the detergent mix in pot boiled water too so there would be no grit left over. Who knows, if I need a large load of laundry done, may employ this again. Runor, I will look up the soap you mention. It looks interesting to me for delicates soaking in the sink. I did find it on Amazon as well. I am almost at 20.00 on my Amazon MC so I will definitely try that. I should be able to set aside a day to wash all the bedding at the same time since it really does not take that long.
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BooBoo1– I don’t have an answer but thank you for asking. I have been having the same questions recently.
I, too, thought at the end, it would be more like being in a coma and not aware and in pain.
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Candy— so very sorry to read your post ref your dad. The aging of parents is not easy to go through.
Sending you strength. Hope your situation is resolved to your standards and that your dad is com
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Thanks Dodgers. I’m hoping there are others who will know more on this topic. I am also going to ask my MO at my next visit.
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Mae - great news! Now you can finish up your project🌞🌴🍹
Runor - how wonderful to be off that damn drug. I never realized it until I started reading on this website, that I suffered from tamoxifen rage when I was on it from age 35 - 40. My poor husband and 2 daughters. 🫣😱😰
Candy - sorry about your father - another worry to deal with.
Mel - your sister is very lucky to have you!
Moth and family - prayers for you. May peace and comfort surround you.❤️❤️❤️
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Booboo (and others), my sister and I cared for our mother prior to her death from lung cancer. She was on hospice for nearly nine months. The hospice nurses, aides, doctors and social workers were amazing. Their sole purpose is to provide comfort and support to terminal patients and their families.
That being said, the amount of medication used is based on the desire of the patient. There is a fine line between completely eliminating pain and sending the patient into a coma.
My mother was asked early on whether she wanted to be completely pain free and unconscious or conscious with some pain. She chose to be in some pain in order to be awake and aware. The pain was manageable for nine months with fentanyl patches and oral morphine. The day before she died she asked for the morphine drip because of the unbearable pain. She slipped into a coma within two hours and died the next day, most likely from the morphine depressing her breathing.
If Olivia Newton-John was in tremendous pain, it was most likely that she refused pain medication. She was known to be an advocate of natural healing and plant based medicine. She may have chosen to be fully present to the end, no matter how much pain she was in.
I hope that reassures you about the comfort measures available to terminal patients. It doesn't have to be terrible. It can be calm and peaceful and loving at the end. It was for my mom.
Trish
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candy: I am sorry about the difficult times ahead for you as you set up care for your dad. I hope you find a suitable placement for him and that you will feel he will be treated well and is safe and comfortable.
runor: yay to the end of Tamoxifen. Maybe after the initial surgery heals up your friend's boobs won't look as bad. I am with her, enough of the "you've got this" "You are a fighter" They mean well but shut up. She is scared, she is in pain and she doesn't need a pep talk.
booboo: Yes every obit says "died peacefully surrounded by family and friends." I have read a fair bit about palliative sedation. I read that to mean you are pretty much out cold. I have also read that the dying person gets to control a switch on an drip and when the time comes they decide when to release an overdose of morphine or whatever. I guess we all wonder and have dark thoughts. In wrote in a private email that as a young teen I envisioned my death as a "Camille" like experience. On a bed of fine white linens, pillows with lace, my nighty was also fine white cotton and lace. I would still be pretty, have a few dainty coughs, flutter my eyelashes a few times and be gone. Would that that would be the case for all of us.
mel : is your sister still living with her husband? An unhappy relationship adds to the burden.
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Trishyla, that was my thought too. ONJ was a big supporter of cannabis and may have chosen that or other herbal treatments instead of pain meds.
Thank you all for the pocket duty and congrats
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Trishyla— thank you for sharing your personal experience with us. Sorry for your loss.
My sister-in-law and MIL were both in comas in the last few days before passing from cancer.
It makes sense that the patient may decide how much pain they want to deal with to remain “awake and aware”.
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Trish,
Thank you very much for your reply. And it makes sense now. You can have it either way, but there are pros and cons to each one.
You have given me peace of mind. God bless you.
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I'm so glad I could help ease your mind, Laurie. I wish you peace, comfort and pain free days.
Trish
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I honestly would want as much pain control as needed for myself as well. I would like my older brother with me and SIL when I pass, don't want to pass at home, prefer to be in hospice. I would feel comfortable with older DB and SIL. Don't need niece and nephews unless they wanted to see me. They know my wishes.
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Candy, I hope you can get your dad settled somewhere that he will feel comfortable. You've got so much on your plate, just make sure to take care of you.
I want to die in hospice also, I don't want to add to my daughter's stress to have to take care of me as well as being a single working mum, she already suffers from anxiety and Finny has adhd, it would be too much to ask of her.
Mae, glad your scans are stable and hugs to everyone. Runor, so happy to read that you've been given the all clear and can ditch the tamoxifen.
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Good morning ladies
Fell behind so I had to read read read before I could respond.
I’ve been staying up to date with Moth on here and instagram. Prayers for her and her family.
Great results Mae.
Candy sorry about your dad going into a care center. You will be missed take care of yourself.
Mara I’m glad tigger is purring and happy now.
Goldens hopefully you can attend your choir ministries again soon. Maybe someone can zoom WhatsApp or face time you during rehearsals or record them? Your services are needed and are so healing and connecting for Everyone. I feel blessed to know you.
Mel glad your stomach is on the mend. Your sister is fortunate to have you to guide her through her illness.
There’s so much I missed but I was able to catch up. I am home. I came home Tuesday night 10 days early. Nothing happened I just genuinely had seen enough of Paris and Morocco-didn’t feel any illness and decided I didn’t want to push it. Covid is over in the minds of those in France and Morocco. No one wears masks essentially. Both countries do have higher vaccination rates than the US though.
Take care All
Tany
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Boat ride on the Seine river last night in Paris.
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Airplane ride home from Dublin to Orlando. Gigantic plane of coughing and sneezing heading to Disney. I had to rely on God for protection.
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Tanya~ I love the beautiful pictures. Glad you had fun. But we do know our limits. Gorgeous looking group and the Eiffel Tower. Wow!!!! Amazing
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Tanya, awesome pics. Glad you had a good time.
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Good morning everyone. This thread still moves too fast to keep up with everyone. Pleased that runor is off the Tamoxifen and off to live life, and that Mae has stable scans and sorry about Candy's dad. I had that a couple of years ago with my parents and it's so hard and there is a STEEP learning curve when it comes to parents not being fully independent anymore.
There was discussion on pain at death and how we'd prefer to go. I am considering assisted dying. It's legal in our state, which has a the Death with Dignity law. My brother and I watched our sister, our mother and then our father die in hospital, in a period of six years. I don't want my baby brother to have to do that for me as well. And I don't know if I want to go through that lonely, long reverse-labor to bring out my own death, when there is a faster easier way.
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