My Husband, My Life, My Love, My Family, My Cancer
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Mae,
Oh my goodness....lovin’ those weenies! They are adorable! Hope you have a great time at the cabin
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Cute puppers booboo
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Mae the weenies are the best with their preppy sweaters.
Hi philly that’s sounds like some serious sleeping. I have a dr appt today at 1:00 and stayed in bed till 12. No breakfast nothing just sleep.
Hi Booboo hope you’re doing well. The weather is beautiful. But after shots today I hope I can just eat and relax.
Candy nice to see you. I understand life drama. I’m also so happy we’re all here sharing.
Waving hello to Mara Minnie Mel Runor Grannax SondraF sorry ladies can’t go back to the other page or I’ll lose my post. So if I forgot anyone I’m waving 👋🏾 at you too.
Tanya
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I didn't know where to post-- Steam Room for Anger Thread, Bone Mets Thread, etc.
So I am coming to Mel's Living Room, plopping down on the sofa, grabbing a throw pillow and crying on your shoulders.
I have had low back issues for YEARS -- advanced disc degeneration. Constant pain. Sleep with a MOUND of pillows under my knees. Have electric shocks go down the legs. Cannot stand for a long period of time. Every once in a while, be walking and a sharp pain gets me across the lower back and my legs give out. I have seen multiple docs over the years, done physical therapy, etc.
I had a rotator cuff tear early 2017 and was doing physical therapy when we found the breast cancer. Then everything stopped so we could concentrate on the cancer. I still have issues with that arm. Pain when lying on that side.
So today I went to see ortho doc. I thought, hey my cancer is stable for now (last PET looks good) and I am looking at QOL so maybe they will have some suggestions for me to help with pain and quality of sleep. Both for back and shoulder.
Waste of visit. The ortho looked up my last pics of lumbar spine (none done today, last ones a couple of years ago) and said I have no disc left between L5 S1. I looked at computer screen. All other discs noted with the space between the vertebrae and the level of L5S1 there is NO disc, NO space. The ortho said if I didn't have cancer and was healthy she would advise surgery, either disc replacement or fusion. But with the **&# MBC, she would advise "conservative" treatment. She ordered an MRI (insurance approval pending) and recommended epidural injection. I will have to read about those, but I am thinking you can only have a total of 3 epidurals. Like I said, will have to read up on them. Then she had me move the arm up, down, side, etc She recommended physical therapy for the shoulder. I asked for MRI of shoulder, but she didn't order it.
Walked out of office VERY discouraged. I hurt all the time---rheumatoid arthritis, bone mets, and these issues with the shoulder and back. I feel like when they see I am a cancer patient they say " Oh, well,... " and that is it.
WHAT ABOUT QOL??????? Docs don't want to prescribe opiates due to the addiction issues in the world now days. I don't want them--too much constipation now. But what do I do? No pain meds, surgery needed but cannot do that.
I JUST FEEL LIKE SCREAMING TO HELL WITH IT ALL. CANCER TAKE ME OUT OF MY MYSERY.
Thank you for letting me vent. I am not a drinker, but times like this it seems like it would be good to go into a drunken stupor. But then I would have another set of problems Hahahaha.
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Candy,
I am SO sorry about all of your pain. There just is nothing worse, and to not have any way to relieve it is not acceptable. There has got to be something out there that will relieve pain without causing another set of problems. I know some may say CBD or even weed, but your kind of pain is different. My cousin has the same thing, and he is on opioids because he has no other choice. I am going to start praying for answers for you Candy. Hang in there
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Hi Tanya,
Yes, I’m loving this weather. Perfect, really. I’m doing ok. Starting to finally get over this cold. How are you? Hubby home yet
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Candy, I can understand your feeling discouraged, that’s ridiculous that the ortho doc wasn’t looking at any real fixes. Being stable and ready to deal with these issues of back and/or shoulder should count for more than the MBC label. QOL seems at the top of list for oncs but apparently not for other docs. You seem to be managing with your physical issues but life for any of us should be more than managing. I have a mechanical issue with my back and was seen by a neurologist. Would that make any difference, do you think? Currently I get by with injections once a year but I will need fusion eventually, if I can get it it seems. I’m sorry I don’t have any real advice but sending you my love & support. Rosi
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Hi all. Have been reading but not posting, been really struggling lately. When I read Candys post I knew I had to respond. Candy, I am going through the exact same thing with my back. The nerve pain ( sciatica) is excruciating!! I went from fully functioning to basically housebound with this pain. My MRI shows 5 herniated discs with one “ severely pressing on the nerve” per report. I’ve had an epidural injection with only slight relief. Per your questions Candy.. I was told you can have 3 injections in a 12 month period. I’m going for number 2 on December 13. Friday the 13th! I was also told that because I have cancer in my entire spine that it would be unlikely that I would be a surgical candidate. This pain is literally the worst pain I’ve ever felt in my life. It goes from my lower back, across to my hip and down my leg into my foot, it throbs and I can barely walk. I’ve had to take Percocet for the first time in my life and it only dulls the pain. I’m so frustrated. I always thought that it would be cancer that brought me to my knees, not some unrelated back issue. I guess you never know. Can you believe that insurance, and I have my husbands insurance and Medicare, do not pay for the anesthesia for the shot??!! How do they expect you to lay still for the local anesthetic when you are in so much pain??!! I had to cough up $275 for anesthesia the first time, I’ll have to tough it out for the next one.. too expensive for me. Sorry for the long post but wanted Candy to know that I understand exactly how she feels and what she’s going through. I read every day and pray for all of us daily.0
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wow candy and lynne I am so so sorry to hear about your pain and the issues with docs not being able to help
and the mess with the insurance and anesthesia and pain meds and constipation. I wish I could come magically fly to you both and somehow take your pain away. I know that with the cancer, the docs aren’t recommending surgery, however, do you think you need to INSIST on something like surgery being done, just so you can live out your life not in crushing pain all the time?
I want to be able to do something to help you and “fix” the problem
please keep venting and sharing. W are here for you. 0 -
I am sitting at my computer crying. Thank you ladies for the care I hear in your voices/posts.
Boo- Thank you for your prayers. I do not want to rely on opioids. I don't like pain meds. I don't like how they make me feel. I need to be able to drive (I live alone). And the constipation is a BIG issue for me already. Boo, what do you mean about "your kind of pain is different" and CBD/MM use. I have not tried those, but have thought about it. Would they not work for "my type of pain" ? Edited to say--- To me pain is pain. How do you differentiate between types of pain?
Rosie- Our local neurologist is not, how do I put this, not a doctor I would want to see for this. He is a little dippy, flaky.
Lynnwood- I hate you are going thru this too, but I am glad to know you are going thru this too. I have lived with this for so long. I remember YEARS ago working at a job and having to stand at my desk to do the work because sitting hurt too much-- Acute episode of herniation of disc in the same area of my back. Over the years the disc has disintegrated I guess.?? I should have had surgery years ago and maybe now I wouldn't be in this shape. I too have bone mets in my entire spine, hips, and pelvis. "Sclerotic" lesions on scans. You say you are going for epidural #2. Did the 1st one help any?
Philly- I wouldn't want our local ortho docs to do surgery. I think IF anyone did surgery it should be orthopedic oncology---not in my local area.
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candy - just an idea: might you be open to going to a bigger hospital/medical system in the nearest largest city? Or, there are some folks who travel to bigger cities or more reputable medical clinics to have these kinds of procedures/visits done? They set up camp in that city for the time they may need...just an idea... 🤷🏽♀️ I know money can be an issue. But many people set up some type of donation fund or receive grants through different BC organizations...there are people who volunteer to drive people etc...I know it probably sounds like a lot, and I know you live in a “medical desert” but many some ideas that may help.
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Mae - thanks for the weenie pic!!! 😍😍😍😍 three little buddies, so cute!!
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Candy - I know that pain and its the worst pain Ive ever felt in my life. I also have a crappy L5S1 and its kicking off a little bit right now with some neuropathy in the affected toe and feeling a little loose, but at least not nervy. But I worry, every day, that if I move in just the wrong way its going to reherniate or something.
Regarding the docs - you may want to find a better neurologist as they deal with the nerve stuff, and see what ideas they may have. My father had a five level fusion with rods/plates/pins put in about 30 years ago due to the spondy (spinal arthritis) in that area. The recovery was extremely tough and he came out of it with an opiate addiction. Mom had to clean him out and hes been in various forms of pain for years, especially as his spine is now essentially crumbling (this is before the, I kid you not, two knee replacements, two carpal tunnel surgeries, and two foot surgeries and breaking every rib in his body, all within the last 15 years). What he has now is some implanted device to redirect the pain - its not a pain pump, I think its like an internal TENS in a way where it stops the nerve pain signals from reaching the brain. Mom only mentioned it in passing, but its because not much was touching the back pain anymore short of heavy opiates and well, no one is going to prescribe those in the US these days. He was in less pain than I was when I went home in August and has good quality of life in being able to do his hobbies and yard work.
I suspect you may have to go through the whole epidural and 'conservative treatment' tap dance before you can get someone to really help you. Its awful, I know, but it may provide just enough relief in order to find and see someone better (neurology) and also show that you have already tried conservative means, they aren't helping, what does he suggest.
One more thing - in the UK they gave me amitriptyline for the nerve pain, on a low dose, while I healed. It did the trick even though its a really old (and cheap) anti depressant. It can be a raging bitch to get off (I had to taper even on only 30mg a day) but it did work so I could heal and get back to living life to some extent.
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Just checking in - last day of rads and feeling tired and a bit barfy. Had a massive meltdown last night from feeling so tired/awful. I live maybe two miles from the hospital and its like a four hour ordeal to get there, check in, wait wait wait, rads, and then get home, due to the traffic. I think its helped, although pelvis overall is feeling a bit unstable still. Ill talk to the RO today and see whats going on, but I saw an xray of my pelvis on the operators screen as I went in yesterday and ho boy, it looked like a massive hole at the SI joint. Pro-tip: don't look at screens!
So ready for this awful month and year to end. At least the weather has cleared a little bit and my sinus headache has finally gone away!
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Thank you again ladies.
Philly- I can go to a larger facility for a consult. But surgery and recoup??? I am alone. Friends have their lives and jobs. Family is not available for that type of long term help. So relocating to a larger city would not work for me. Also the finances. I have my bills and house payment here and could not manage rent/hotel somewhere else for an extended stay while recouping from surgery. I know you mean well, just won't work for me.
Sondra- Yes the surgery would be tough for me. The ortho said it would be an anterior approach, so they would have to fix the back by going in thru the front. And with the Ibrance use and immunocompromised status - infection risk. Plus with the cancer, isn't anesthesia and stress of surgery bad for the cancer? So surgery definitely out. Probably medicine use of some kind is the way I would have to go with the MBC. Just have to find the right doc and the right med---- Amitriptyline, Gabapentin, Lyrica, opioids, etc. I don't know. So confusing. What to try. Side effects. Good grief.
I have thought about TENS unit use. But read on here (Bone Met Thread, I think) that TENS should not be used with cancer. True???? I need to research that. Any one with thoughts?
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Candy,
My cousin Keith has a collapsed spine, and has tried every pain med out there. He told me that even the opioids don't cover it 100%, but it's better than nothing. You are, of course, correct. Pain is pain. I was trying to relay how much I understand that kind of pain. My prayers are with you, my dear.
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We went to town today for some extra building supplies and saw lots of wildlife on the way back up the mountain. 3 donkeys, a couple of deer and a bunch of wild turkeys (just in time for thanksgiving 😉) Trying to warm up inside now, it’s 37 degrees and raining, brrrr.
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Micmel, was nodding my head as I read about your dearly departed formerly sex kitten self. I hear you. A friend and I were just asking each other if we knew where our sex drive went and has it sent any postcards saying when it might return? I think tamoxifen has a sex dampening effect, not to mention it is death to vaginas in many cases, but this whole getting older thing and growing hair in places I never used to have hair. And fat rolls. Flubberous fat rolls. So gross. Hub is only allowed to touch me on my knee (when it's bent) and my elbow (when it's bent) because those are the only two places on my body that bone is visible and not covered by fat rolls (when they're bent).
The other evening we were each sitting on our respective sofas when hub, out of the blue said, "I want to make love to you."
Annoyed that I had been interrupted mid Sherlock Holmes I answered with a steady, unamused stare. Then I returned my gaze to the tv. He tried again.
"Let's have sex" he said in what he felt was a soft, alluring voice. It just reminded me of creepy prank phone callers and I said, "Don't talk like that, it's gross and repulsive."
After a moment he said in a booming baritone, "I want to fuck your brains out!" I said, "Please do not make me shoot you in the face. Because I will."
Having exhausted all the foreplay in his repertoire, hub went back to Sherlock Holmesing it with me. No further foolish sex talk happened that night.
Whatever sex life we have has become more like Monty Python's Flying Circus than 50 Shades of Gray. We're all creaky bones and sore hips or locked shoulders or leg cramps... it's like two hippos trying to wallow out of a mud hole. It just ain't fun most of the time. As I said to my friend, it's not so much that I miss sex, I miss wanting sex, if that makes any sense. I guess it's time to develop more humour about sex and less serious intensity. I don't have the cardio stamina for serious intensity. Sometimes the most I can muster is, sure, I'll lay here, but don't expect me to participate or enjoy it. Like going to the dentist. One must endure. Once every 6 months should be sufficient.
To those struggling with pain, or sex, or weiner dogs, love and hugs to you all.
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Omg, Runor my stomach hurts from laughing. I'm sorry but I can't help myself. Just sitting here by myself laughing at my phone.
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Me, too -- thanks, Runor, for that big bit of levity. Too, too funny! I'm not sure that my husband could make it through sex anymore either -- so it's not just me. But I roared at your description. A bit too familiar?
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Oh Runor - you make me laugh. Are you in my living room with DH and me? I miss wanting sex too. That went away a looooong time ago. We have a bit of routine around here. It works. Last week I thought I'd try sitting in his lap and that was a giant mistake for my back and i paid for it with a few days in pain.
I took this week off and it's been fantastic. Not really. I had an emergency root canal yesterday after a week of toothache. Thank goodness because I am not a toothache fan. I was there for about four hours while the endo fit me into the schedule, called my MO to see about all the meds I'm on and if it was okay to do the root canal and so on. So today I actually really took the day off and started reading Where The Crawdads Sing - interspersed with starting a binge watch of Schitt's Creek. The wind is absolutely whirling outside but the temperature is still pretty warm. I can't believe it was 55 here today Mae and 37 where you are. That's like opposite day! Tomorrow it's supposed to get colder and some snowflakes.
Spending Thanksgiving with my sisters. My daughter is on vacation in Iceland with her boyfriend. My son and DIL will stop over at some point. My granddaughters are with their dad and stepmom and i doubt I'll see them. A quiet Thanksgiving and I don't have to do any of the cooking wheeeee!
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busy busy planning for the holiday but had to pop in and LMAO at Runor.. you my friend are just damn funny. That is all I can say! You make me also roar with much needed joyful hearty laughter. My dh looked at me and I was laughing. I couldn’t help it Your description of the interaction with your hubby was to Damn funny. Thank you for the laugh. love to all. Good to see everyone posting in our living room!!! Happy thanksgiving 🦃🍁🍽 . Take in every second of the holiday. I can’t wait for the stuffing. My dh is such an angel. He does the cooking. I’ll help when I can. But he’s the engine. Love to all my sweet sisters I am hoping to arrange something to meet Philly for lunch! I would love to meet a sister. It would be so special to me. Hugs to all! And I mean All! Special shout out to Dodgers Girl. And Stillivin. Reach out Soon please ?
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Hi all. I haven't posted for a while in this thread but still try to read the posts. I wanted to pop in and wish everyone in the US Happy Thanksgiving!
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Happy Thanksgiving
🍁 Thanks Mae for the pictures. I love seeing animals still wild in nature. Your cabin life is peaceful, rusticand amazing.
Runor you’re hilarious.
My husbands tip to friends in this predicament (no desire, vdryness, hormone dysfunction etc), up your foreplay game. When we have a lot of mileage on us you have to go the extra mile.
Tanya
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Happy Thanksgiving to our US members. Enjoy the holiday.
Sitting here singing the music in my ears to myself. Have had a good day. Did not do much, went out due to boredom, got a bunch of stuff at Dollar Tree and came home. Reason I am so happy is because I had to walk a good distance for all my buses, carried a heavy knapsack and did not get tired. First time that happened and feels like progress for me. I also feel good about the fact that since I tend to be such a homebody, the fact that I WANTED to go out in such cold weather is amazing to me. I am very happy about these developments. I don't have a husband or many friends that I go out with and I actually enjoyed the trip Talked with different people on the bus, in the store, was really good. Life is looking up right now which makes me happy.
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I am happy for you. I noticed that you had whole brain radiation. I just finished it. This is my first reply to a post. Happy Thanksgiving.
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Thank you Malinda. I am glad to hear you finished your whole brain radiation and thank you for replying to my post. I am honoured to be your first reply. If you have any questions for me, feel free to PM. Also, keep visiting us here. This is a giant living room full of wonderful people and I am glad you found us. If you have brain questions, you can PM me or else also take a look at our Brain Mets Sisters Thread. Lots of good people there as well. I am three years on from my WBR and hoping my MRI this past Monday is clear. If so, then I am feeling lucky.
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I hope everyone had a nice day today, whatever it is that you had on your agenda. We had a small group of family for dinner. Took a big shortcut with getting a precooked and sliced turkey breast from Honey Baked Ham. I'm not sure if that's all through the US but it was very good and the clean up was very simple.
Sondra, thanks for your response to my post. I appreciate it! Lumpectomy is Weds the 4th. I hope you're coming along with your hip and back issues. I rarely see my scan pictures related to my MBC, I just see the written report on the portal. I have seen my lumbar MRI pics and that doc explained a lot to me about my problems. (Stenosis, one vertebrae shifting over another).
Grannax, I know it's been a few weeks since your runway show, but I loved your pictures. You're a natural! I've tried to keep up with your Y90 recently. I hope you have great results and can stop the liver mets in their tracks.
Booboo and Tanya, so awesome that you got together!
Re the spousal relations, DH and I are still kind of newlyweds at 7 years (in our 60s though) but there sure isn't much action lately. I guess having all the hormones sucked out of me has helped my MBC for now, but I've pretty much forgotten about my other life with sex in it. Then there's also his knee pain, both with back pain, and crazy coughing from both to throw in the mix. Runor, your post cracked me up too.
Mara, yay for a pleasant day and a good walk! Sometimes it feels good to get out and glad this was one of the good ones for you.0 -
Lynwood, I feel for you, can't understand why they can't do more to help. Love to You and Candy xx
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Mae - those weiner dogs are adorbs in their little sweaters! I just got my beginner felting kits and I got one of a weiner dog cause they are so cute.
Mara - isn't it awesome to feel proud of yourself for getting out when you may not want to?!
Candy - the pain blocker thing my father has I believe sends internal electrical pulses, but I am not sure. You may want to do a smidge of online research about pain management implants and see if any could be an option for you.
So yesterday turned into a day of epic proportions, of which I am still recovering from today. I wish they would have warned me and I could have packed a charger and water bottle. Four hours at the hospital turned into EIGHT due to delay in bloods and then the pharmacy for meds pickup, not to mention the clinic was backed up due to a few doctors being called out for surgery and/or other issues. I thought I was going to be ok making it home on my own but my back was BARKIN' so I used my last 2% charge to text OH to come get me after work (good thing he works only two Tube stops away). I was originally supposed to also have rads yesterday, very thankful I got the dates confused cause I was pretty tired by the end.
Plus side is that I had a great nurse inject me with the Zoladex - it was like butter, ladies. No pain at ALL. I also seem to have lost 3kg since my bone scan in late september as I was wearing the same outfit. Even better - my onc nurse giving me the I/L training told me they are now able to prescribe up to three months at a shot, so once things are stable and bloods are good that is an option.
Definitely getting rads side effects with squishy tummy and indigestion and gas, but some of it is starting to subside. Fatigue was bad this morning too, so I slept it off a bit and drank ALL the water. I do 3-4 liters a day and I can TELL when I haven't had it - that seemed to sort the tired muscles. Walking even better today than yesterday and I think we may attempt a mid-day trial run on public transport late next week if I keep improving. My local station only has an elevator to part of the platform, otherwise its winding stairs. Oh, not to mention the 7 minute walk TO the station...over cobblestones. I very much want to get to my Christmas events with friends in three weeks, and I need to be able to manage the tube to do that.
I started the Dance this morning and it was quite emotional thinking about how I was WFH and had my work email up and yet chugging down anti-cancer meds after breakfast. Two little boxes sitting on my desk worth a couple thousand $$ - its incredible really.
Hope everyone has a great weekend - I think I will start on my felting snowman first, and also direct some more advanced housecleaning (vacuuming/bathroom cleaning). Probably take some walks too!
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