My Husband, My Life, My Love, My Family, My Cancer
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Mel, what a beautiful venue! It sounds like your mother's celebration of life will be wonderful and meaningful.
Goldens, you basically did win the lottery, what a great savings from last year!
Sunshine, oof, I hope it's nothing serious, that sounds so painful. Can we not get a break even when we're sleeping?!
Had my first follow up visit following spinal surgery today, everything is healing well and they took the sutures out. Doctor reminded me I am very early in the recovery process, I thought I had been doing something wrong because my back feels sore and tired after working on a jigsaw puzzle, of all things. He was like, nope, expect to feel sore for another few weeks, we did actually cut your back open, remember? He did prescribe a mild muscle relaxer which should help. My xray seriously looks like Wolverine from the X-Men, it's both creepy and cool at the same time. 🐺
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Golden's - a big congratulations re the zero co- pay! These drug prices are out of this world and I don't know how they expect "everyday people" to pay so much.
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sf-cakes - I’m so impressed with your recovery! I can’t imagine that kind of surgery. My pain management doc has discussed SI joint fusion with me but I can’t fathom that right now. You have seemed so positive through your process. Way to go. And we always seem to forget what this disease has done to us. It is unrelenting…..
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Hello everyone. Hope it's a peaceful, pain free evening for you. In your pockets for scans, life events and this awful disease. Heavy rains coming tomorrow. DGD still sick, out of school all week. The one Dr. had placed me on Klonopin a few weeks ago and I called it bad ju-ju-. Not much sleep, horrific nightmares. Today that Dr. changed it back to Lorazepam, which I had good success with. Hope to sleep like a baby tonight.
Mel, the thought you've put into your Mama's tribute is so grand. The facility is gorgeous and I pray it brings the family some healing. Mae, I hope you have a wonderful Birthday weekend. SF-cakes, best wishes for continued healing. Sunshine, hope it's a pulled muscle. Lidocaine is my go to treatment. Hurray Goldens for $0 Ibrance. I think all cancer drug prices should be controlled. One shouldn't have to go thru bankruptcy to stay alive. Hi Mara. Keep up the PT and keep getting stronger. I made shepherd's pie today. My Grammy's favorite dish. I don't cook much anymore, but when I do, well I think of you and how creative you are. Emac, please keep your chin up. You took such a bad turn but as the girls like to say, it can turn good again quickly on the right meds.
Hope to go to St. Augustine tomorrow, unless it's a heavy rain. I don't go anywhere but dr. appts. anymore. I don't really need anything, but hope to go to The Conch House for lunch. It's on the Matansas Bay, so beautiful. Outdoor seating has thatched roofs and bamboo tables and benches.
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Happy Birthday Mae!!!! Hope you enjoy your time in your bar with DH! Hugs to you!
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Hello everyone
Ive been reading along and keeping up.
Emac I hope you’re home by now with the right apparatus for your breathing. Hopeful the new medication works very well and quickly.
Happy birthday Mae. Enjoy the celebration.
Mel I remember your daughter’s wedding prep in the beautiful railway venue. That’s amazing that you can use the same space for your mom’s dinner gathering memorial. Precious memories forever.
Irishlove I’m glad your meds changed. I hate any psychological disturbance from these meds. The physical is bad enough thanks. Enjoy St Augustine.
Mara your physical therapy sounds like it’s really focused on your exact needs.
Goldens zero co pay is amazing!!! I love when it all comes together and works.
sfcakes wonderful that your spinal surgery is healing.
Rainy weekend here. I did was the pollen off the fence and wrenched my back yesterday so it’s a heating pad day for me.
Take care all. Stay warm and those in storm way be safe.
Tanya
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Hello all you lovely ladies. Looks like it's quiet tonight. Hope everyone is having a lovely evening. Good to see you Tanya.
Rained hard today and guess will tomorrow. Didn't go out of the house but to feed critters. I think Daytona 500 is tomorrow and more then likely, will get rained out. St. Augustine will have to wait.
I have a question about radiation. Does your MO say it's time or needed, or if you think it's time, can you request further consideration? Can the request be based on high pain level? I really would like your input. Thanks…Laurel
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Laurel
I had mid back pain beginning in August, 2022. It was a combination of sharp and a deep ache. It felt as though I was being stabbed from the inside out. My scan reports showed nothing, my physiatrist could find nothing and my MO was puzzled. I was offered a tramadol prescription and told to try to relax and to stretch more frequently.
In July, 2023, my routine scan report noted "multiple sclerotic bone mets along posterior surface of posterior ribs bilaterally". 😳 I saw my MO the following week and we reviewed the scans of that area back to my initial complaint of pain in August 2022. The Mets had been there since then but the diagnostic radiologists were too lazy or incompetent to put them in the report. The soft tissue and nerves in my back were being scraped against the Mets every time I moved!
Thanks to everything I've read on this site I knew about palliative radiation and requested an appointment with my RO. I had the radiation in September, 2023 and that pain is gone, although I have other back pain.
Sorry for the long story. The short answer is absolutely ask for radiation for pain. If they cannot find an area that can be radiated, they will let you know. My RO has diagnostic equipment of a much higher caliber than the standard scanners. He even found two additional areas to treat that weren't showing on the diagnostic films. Don't take no for an answer - at least not until you've heard it multiple times. You know your body better than anyone who's outside of your skin.
Good luck!
Hope everyone here in the living room has a good Sunday. In pocket for those in a rough patch (@emac877 thinking of you) .
Eleanora
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I had the same experience with Kisqali that you had with Ibrance. I'm on Medicare and paid $16,000 last year. Just paid $3500 for my first round and I am done for the year!
Next year our out of pocket cost will be capped at $2000. Thank you Joe Biden ❤️.
Eleanora
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I am sending healing thoughts to anyone in pain and definitely second the advil recommendations to help it, make sure it is coated to avoid any stomach pain. Made that mistake recently when buying.
Mel, just settling into your pocket with a cozy blanket, might take a nap between sending my love out.
Mae, happy birthday even if I am late to the party.
Monday is a holiday here in Ontario, family day but that does not affect me too much since not much to purchase. I've looked over this months purchases and decided that next month will be lean and making sure to use up products so they do not go to waste and work a bit harder to earn more money playing mobile games and my TV ads that pay me to boost budget and limit myself to one shop a month if possible, if I only need one item, stick to that. I have also learned not to tie up 90 percent of funds in GIC even if there is good interest. Oh well, we live, we learn. Just waiting for them to drop off and can add back to budget
I am looking for an egg mcmuffin jam, cook up two eggs in my mini griddles, can use both at same time as each unit is 350 watts and cooks up stuff faster. They also cook faster and probably toast up an english muffin. I will make the hashbrown in the waffle maker, cooks it up crispy and way less time needed.
Doing taxes tomorrow and then nothing else. Looking forward to some frugality going on and stretching food and laundry supplies. Really enjoyable to me and like some of the frugal shopping tips on what to buy to make 20 meals for 10 dollars, pasta, beans and cheese seem to be the draw. Have to consult the flyers as it will be warmer next week and free bus rides through paratransit pass on off peak, helps a lot as well.
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Thanks Mara and everyone! I’m thrilled to be 49 now. This will be a quiet one, next year I’m thinking of getting friends together and renting a beach house to party in.
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illimae, I think we have the same birthday (or close as mine was yesterday!) only I am 71. Happy birthday. I just had dinner out with family. Flowers and a cake rounded out my evening.
Praying everyone has a break from struggles today.
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@intolight Happy Birthday 🎉
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Intolight, happy belated to you as well.
I did do the 2 eggs in separate griddles, hashbrown was not crispy but tasted good after sitting in the waffle maker while eggs were being cooked. Not a bad breakfast but sometimes the oven is better or even the bigger sandwich maker, no more kitchen purchases in the near future as these were impulse buys and definitely not needed. Going to do pasta and beans by chopping beans with the croutons, precooked pasta, spray frying pan and cover with shredded cheese to melting and eat that at dinner time. Yummy.
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Happy Birthday Intolight!!!!! Sounds like a nice time
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Intolight - Happy Belated Birthday 🥳🥳🥳🥳
May our struggles be few and our pleasures be many this week🥰
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Intolight- Happy Belated Bday! Wishing you blessings in the year ahead.🎂🌺
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Happy birthday Intolight!
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Happy birthday intolight! That sounds like a lovely way to spend a birthday :)
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emac, My pulmonologist said they used to wait to use the pleural drains but have decided it is better to do them early. Mine was only on the right side. We drained it daily until the amount decreased by a lot, then every 2 days to twice a week until removal. The advantage is being able to breathe easier while it's doing it's job. This was right after dx stage 4. I think you need a different doctor if they want you to wait until hospice.
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Wishing you the happiest of birthdays, Intolight!
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Whoa nelly, I had a terrible hospital visit today. I finally broke down and LOST IT to the point where the nurse went running out of the room to get the oncologist (not my normal one but whose condescension was part of why I was babbling in tongues and crying and shouting). I dont know what happened, too many drugs, too much of a drug hangover, still in pain and trying to walk, no one listening, my bloods order messed up yet again, this woman telling me shit I already know ('you should track when you take your pain pills in a diary' uh I DO and 'thats what we call neuropathic pain' lady I've been through a f*cking disc prolapse!) and just OVER IT. They took my blood pressure before and after - it was completely normal after but apparently uh, a little on the high side before.
I know Im going to get a call from my normal nurse tomorrow and maybe my normal oncologist later in the week (I was expecting/scheduled to see her and wanted to discuss my scans from three weeks ago and the PT results etc, but nope, got sidelined to the B team last minute with no explanation) because let me tell you, the whole waiting room heard that meltdown along with the nurses station. It was worse than the one last summer on the tube platform with my mother. But I just cant take the pain, the not listening to my concerns about whats going on, the assumption that I dont know anything (my normal onc would never talk down like that), just being handed more and more crap to take for whatever reason. I know Ill be told tomorrow to 'youve got to call us when youre in pain' yeah well why. You didn't listen when I kept reporting a cough for six weeks, or when I talk about crying every day from pain and exhaustion at multiple monthly meetings. This hip thing was dismissed last year for six months. Ill just get told to take more oxy, or more pregabalin and have my question about muscle and tendon pain/tears continually dismissed. I really just feel like a piece of meat on a conveyor belt at this point and Im DONE.
Ive got to find a way to let this out or let this go or something because its not healthy holding it inside. I think putting some energy into finding a good osteo to help move this hip back into place, seeing the sports med hip specialist for their opinion, and getting a second read/opinion on my scans from the US would help me just cope with this a bit better until I can decide what I want to do about staying or switching. Switching isnt as easy in the US but damnit Im really angry at this point and trust is holding on by like a thread here.
And no, even with all that I still couldn't get one or two valium.
Edit - self-care in progress - pizza is en route and Im ordering a nice new pair of pyjamas that match.
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Oh, dear sondraf, that just totally sucks! I can't even imagine. Do you have the option of getting a palliative care physician? This is just so WRONG. I don't even know what else to say…
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I am so dumb. Yesterday night, thought my portable washer's spinner was not working. FF to today, expended most of my energy getting my bigger Panda spinner in the tub on a small stool and a piece of yoga mat to hole it in place. When I tested the Panda after hooking up to avoid any water, I found the plug was unplugged so plugged it in, Panda spin dryer was working but my other spinner is working too. Did not even realize. I am leaving the set up as is as I have decided to use both spinners in favour of saving energy. I also gave up showering in favour of doing a hospital bath while seated and using a bidet for the lower bits. Walking in and out of the tub, even from a shower chair felt completely unsafe. I feel really silly. I almost ordered McD's for a quick meal until I remembered the frozen burgers, just want to put something in my belly and give my head a shake. Releived the little portable washer is not broken.
Other than that, not much happening for me except garbage and recycling some boxes.
In pockets for those that need it, in my own pocket for not thoroughly checking that everything was plugged in right. Everyone else, have a good day.
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So sorry for the horrid experience but so happy for you that you let it fly! They and their f***ing system deserved it!!
While you know that you can always unload to us here, because we love you, it feels so vindicating to throw it back in the faces of the perpetrators.
Think the pizza should be followed by ice cream or chocolate or both, but I do have a question - are you ordering pyjamas that match the pizza?
😉
Eleanora
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Sondraf - So very sorry to read about your horrid ordeal. There is just so much about dealing with this dread disease that so many medical people just don't seem to even try to understand. I absolutely get your complaints and frustrations. I have yet to reach the point you did, but there are absolutely times when I think that with one more ounce of stress I will be where you were. I seriously hope that medical professionals read what you've had to say and take it seriously to heart.
I also think that while pizza and pajamas won't totally fix the problem, they are a nice help and comfort. We get it!
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Sondra F, sometimes we cannot help boiling over. Sounds like people condescending to you when you know what they are telling you. The pain you are in also shortens a fuse when people are being really condescending to you. Just piling pain pills is not what you need and more timely addressing of the core issues. If you can get other people to get you adjusted, that would alleviate a lot of your pain. In your pocket and the self care is more than warranted.
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@sondraf So, so sorry to hear you went through this nightmare. It is so totally wrong! Does your hospital/cancer center have a patient navigator? Most do… Sometimes they can help sort through all the multiple doctors and issues and even get you the right appointments. Of course it is something else to add to our already full mix!
Thank you all for the birthday wishes. I am not doing well today, but tomorrow is another day. At least it is finally warming up. We are even going to touch 60° tomorrow!
Thinking of all of you and your daily struggles. People call me brave but I feel it is more like dog-paddling to keep my head above water out of necessity. Looking for the joy somewhere hidden in today.
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Sondra-Sorry you had to experience that. There is nothing I detest more than being treated with condescension. It infuriates me and I rarely bother holding back. Wish I was there to share pizza with you.
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I know exactly how you feel Sondra. I’m so sorry that you had that happen also. I’ve been there too and not long ago. It’s so hard to face all of this let alone with someone who doesn’t listen or make you feel comfortable discussing such difficult things for us. PTSD! Sending you hugs.
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