My Husband, My Life, My Love, My Family, My Cancer
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@mara51506 I hope you had a wonderful Birthday. I’ve missed you/and everyone here. I’ve bee off the forum for a week or so. I’ll catch up with you tomorrow. In your pockets for those in need.🩵
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Good early morning all. Not good at remembering any special notes regarding scans, other than the first scan looking for a bowel blockage. That's the one that showed cancer for the first time. MO says we are now going to every 6 month pet scan. No mention of CT's. Not sure how I feel about that. Can one teach themselves not to worry from scan to scan. Hmm.
Nothing happening around here, other than super tired. Guessing it's some dehydration from diarrhea due to colitis. It's getting better but the buttocks and back of legs hurt something fierce. I was checked not to long ago for cauda equine sp? They said all was fine but I'd have to disagree. I don't think the radiation back in April and May to base of spine was successful. I just keep using Aspercreme roll on and RX meds for pain. Too hard to figure out if this is cancer or MS. I'm at the point, I just don't care. Take pain meds, hope they help and move along..
Doesn't it just show that in todays medical practice, some empathy has disappeared. Once or twice a Dr. spoke to me in a very condescending manner. I let it go, mostly because I was too sick to get into a disagreement. I'd love to find the courage to speak up to the offender and not worry I have to see them again and they didn't take my complaint too well. I once argued with a male nurse in the hospital about the drug dosage he was giving me. It was flat wrong and he insisted it was right. I was on 75 mg. of Sertaline at the time and he gave me two pills to take. Well that would have made the dosage 50 mg. per pill, overdosage of 25 mg. Probably not a big deal, but I didn't want to start a precedent. He really struggled with my correction and I asked him to cut one in half. He got mad and threw the pills away. Came back later with proper dosage but wasn't apologetic at all. Too bad……
In everyone's pocket for good scans and life in general.
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Candy, in your pocket for the liver scans. I also totally agree with your statement that you would rather have something else checked in the surrounding area so nothing is missed.
Pretty cloudy today but had a good sleep, little off balance while walking around house, will be careful, pull out cane if needed. I played mobile games for money yesterday and will do the same today. They pay for ads as well so that is good. Want to get some free cat litter in the next week or two. No grocery shopping happening for a while as there is still a lot of food to get through, lots of canned ham, turkey and chicken, have to think of what to do with those, may just chop them into beans and eggs or something. I will see later. If I did, they would be good. Could also use my mini grill to heat them through. I do like the beans chopped through with other stuff like croutons, chips and cheezits. Other option is pizza but topped with peppers and olives again topped with shredded cheese. I will see how I feel or have it for supper.
Laundry under way, got a hooded sweatshirt in there, also need to pull old washer out to remove and wash towels I put in there to dry up old washer. I am sure they are quite stinky, may add some baking soda to a cycle or enzyme or both, I will see how they smell. Waiting to dispose of that old washer. Also wanting to sew up the extra lint collectors as well, holes are abundant in them and I like having more than just the lint collector in the washing machine. Put them in a mesh bag and will put in dryer so that I can so that I can sew them dry, unsure what I want to do yet.
I hope every one has a great day and in pockets for all who need me.
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Good Morning @irishlove .I see you and fell your frustration. Being so tired all the time is also being sick and tired of being in pain, and living in suspense between each scan. You have been through so much girl. I wish I could just take your pain away. I’m in your pocket and you are as always in my prayers. Breathe prayers for a calm and pain free day without worries today and the rest of the week. Gentle hugs my girl (((((((💗💓)))))))
@candy-678 thinking of you today and in your pocket.
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@chicagoan , you are making me crave dark chocolate…love it in any. Form🥰
@illimae I always get the chest abdomen & pelvis CT and head to toe full body bone .I have multiple scattered bone. Mets in ribs 9 & 5, thoracic spine T11 and T10, and also Lumbar SI 3, Illea tailbone etc. Yet with all these bone mets my regular scans are. Always Stable on no changes. It frustrated me because they no longer. List each bone met anymore. . I asked my Onc if that means I’m NED or if ny have. Shrunk and gone away. He said there is nosuche thing as “NED” because the disease is always there. 😮. That was a real wake up call for me thinking I was NED for 13 years. In. Reality it’s NEAD he said. “No Evidince Of Acive Disease”. That was. A real wake up call for me. Ai will never think of myself as NED again especially at Stage 4 mets, just because each scan is always. Stable. Now I really do dread each new scan day.🙁. In everyone’s pocket this week for scans🩵
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Irish - I totally understand your concern about a lack of empathy in modern medicine. Some of the providers are helpful, caring, and concerned about you, as an individual, but I don't think it's the majority. This is why I've been saying for quite awhile now that what I get from the medical system is "treatment", not "care". They might give me the right drug, and act "polite", but it's done as a rote, routine, and robotic sort of thing, and I feel like I'm "just another one".
Shana - Always good to see you here. Yes, I was told too that there is no such thing as NED, and when they use that term it is usually only for soft tissue cancer, that actually can shrink down to nothing and maybe even "disappear" for some time. They told me though, that your bones always show the scars or whatever from the cancer, so if it's in your bones, it will never look like it has disappeared or shrunk, etc. And yes, stable just means nothing currently active going on. You still have the cancer cells and always will, unless they come up with the miracle cure.
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Ah you all are so sweet. Medical folks could take some lessons on empathy from each and every one of you.
Today the pain was overwhelming. I don't think it's neurological after checking myself. It feels like sore spots in deep bone places. excuse me for saying this, but my ass hurts. lol. I like aspercreme with numbing agent and 4 per cent lidocaine. We use to receive free pharmacy cream, but insurance cut it out. Neuro appt. Tuesday, maybe he can shed light on this ongoing pain and swelling of ankles. Anyone buy one of those machines you wrap around your legs to get the blood moving and decrease swelling? I' m sorry Shanagirl for your suffering and thanks for the uplifting thoughts.
Mara, I saw a few great crock pot ideas on Facebook. One was pretty cool. Put ramen noodles in bottom of casserole dish. Add cooked hamburger. Add onion if desired. Add beef broth, ranch seasoning, taco seasoning and sour creme. Finish off with shredded cheese. Bake till done (I think it was 350 for 45 minutes). Oh it looked so good.
threetree, I have found a wonderful RN counselor/case worker from Author Health. Cari is very dedicated and I'm so lucky to have her on my team. I just have to tell you this story and why I'm upset with medical care.
Last trip to hospital and the doctor told me he could lose his license if I did not sign off on him doing a rectal exam. Of course I signed off, but then changed my mind (long story but it's based on being a sexual assault survivor and certain things really trigger my mental being). A nurse came and held my hand as he had convinced me this what an important exam. He jammed his finger so hard repeatedly as if he was angry at the world. I had made a comment about my bladder and he snapped that he was the one that went to medical school and knew where the bladder was. Well I'm not stupid, so do I, but my bladder had prolapsed and I wanted to give him a heads up. After being admitted, I had a nurse that I felt compromised by her actions. I won't go into that, but lets just say I was uncomfortable by her abdominal exam. So you probably get it, it's more then greetings and IV's and small talk. It's true trigger points for me and I haven't a clue how to handle it. Sorry so long.
In pocket for all scans and needs. Much love and appreciation for this wonderful gathering place.
Laurel
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@irishlove can you ask your treatment team to prescribe Diclofenac Sodiun Topical Gel. I’s a miracle worker for my bone pain that gets as bad as you are describing….. so much ether than Asprcreme which I have used in the past. I was first prescribed to for the bone pain of my knee replacements. Now my neuro Pain management Neurologist prescribe i† for my cervical neck. Bone pain if I need it before my next scheduled cervical spine injections to my neck every 6 mths.. when those pain block injections wear off this prescription is a. Miracle worker without having to take any opioids tablets. My DH rubs it in and the bon pain disappears almost immediately, especially if. I get on a heating pad. This is the same as “Voltaire’s” OTC , but prescription strength. @irishlove ,if your insurance does not cover this prescription try getting it through “Good RX” at your pharmacy..
I have been so laid up this month with my severe bone pain all month since I got my Xgeva &. Fasoldex injections 🙁. And even my butt bones and tail bones where I have mets also hurt so much. But my neck thoracic spine and lumbar and ribs mets are always relieved by this topical medication. I hope your treatment team prescribes it for you. Otherwise go get the. VOLTAREN.💗
@threetree , yes I always cringe when I hear someone say to me “I’m cancer free”, “Im NED”. I believed that for 13 years before mets. Showed up in my bones.Breast cancer is very insidious and hides in the bones. I was naive and never thought those few cells they found in my sentinel. Node biopsy and 2 more nodes must have hid. Away for many years even after my breast surgeon reassure me they go it all by remomoving a whole grapelike cluster of lymph nodes in my armpit. I guess I Ialways believed I was cancer free NED because the removed the breast and nodes. I should have known this when I. Was on the stag III forums yeas ago.🩵Always good too “See” you too threetree.💗
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Irish, I think I have a real good handle on the things you're talking about and can relate a bit from some of my own personal past experiences in life (I won't go into them here). I really hate that, "I have a medical degree" stuff. It's also emotional and hard to explain to these people why you have certain triggers because of certain things that might have happened to you before. They just want to proceed in their routine way and you're just supposed to "suck it up" or whatever. There are those few though who really do get it and they are jewels to be sure. Irish, I am so very sorry that you've had to go through what you described, and my heart truly goes out to you. You have been through so much, and it is really admirable, the way you keep moving forward and doing all that you can.
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@irishlove Here is a picture of what the prescription looks like.
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threetree, my MO tells me I am NED from the neck down BUT I believe NED and stable are equally good as each other. Just because I have been NED for almost 10 years from neck down does not mean something cannot happen in future. I scan nce a year for neck down so that is good. MRI for brain and blood pool in my head. Brain is stable, blood pool outside of brain, we make sure it is not growing. If stays same, nothing needed for a treatment.
Have not done too much today yet. Will get to laundry and sewing up the other lint catchers, I think the new washer spins more agressively and they cannot handle it but I am fine with the sewing. I am also earning money for either peanut butterOR more litter for the cats, I will see which one I want more. Third option is take the 10.00 I have in rewards at my store. Not too sure yet.
My breakfast was out there a bit. I took 1/2 cup rice, put in the pot with 1/2 water. Decided that I wanted to put some of the KD cheese powder in there and stirred it in. Heated up 1 egg, 1/4 cup of black beans and some canned ham. I had put those in a sprayed bowl along with garlic spread, put on high for 2 min 30 seconds, chopped them in the chopper with some croutons and add everything including rice back into microwave for 40 secs. Added ketchup and little salt, was very good and very filing. The powdered cheese will still be used up as well in dishes I make. I liked this first dish quite alot.
I hope everyone has a great day and in pockets for those who need me.
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Mara - I totally agree with you that you can call it "stable" or "NED", and those are good as long as they last. Either way, those cells are out there and could start to do their thing again at any time.
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Hi everyone - stable works for me. I come away from a scan that says "stable" with a grin on my face. In everybody's pockets with support and a great big piece of homemade shortbread for sustenance. My sympathies to those with bone pain - it truly is the pits. I hope everybody has a good day today.
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@malleemiss251 Yes Stable is always Good to hear. It reassures me that so far, none of those cancer cells have decided to come out of hiding to start growing. Somewhere else in my bones or organs. Big relief 😅
@threetree I’m with you on your words to @irishlove about being able. To relate to what she goes through. As far as triggers are concerned, when getting prodded and poked down there by an unfeeling Dr. who projects superiority over a vulnerable patient, that make me mad.
Anyway there is a big storm front on it’s way the end of the week and I’m already feeling it in my bones. Sending you all vibes for calm bones this week🙏🩵
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So very happy to report I remain stable! Unfortunately, just so much degenerative disease throughout my whole skeleton, aka osteoarthritis. My hubs, a retired ob/gyn, truly believes it is because I had my ovaries removed at 35 and was depleted of estrogen, even taking estrogen depleting meds (tamoxifen for 5 yrs, and now on anastrozole for 5+ yrs). Just caused havoc with my bones😢. But stables rocks!!!
Here for pocket duty for all those in need and sending healing vibes for those struggling with MBC/other medical ailments.
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@goldensrbest I join you and @malleemiss251 with celebratingstable scans. At least they got this part of the treatment right… I also had a complete hysterectomy at 35 and blame my cancer on it although we will never know for sure. I went on HRT at the time and was on it for a good 20 years. We just didn't know any better.
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Goldens - So very happy for you and your stable scans! (I too have the "degenerative disease", i.e. osteoarthritis that shows up all over on those scans, and it's no fun.) Here's to many more for you and the rest of us. Yay, stable!
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@goldensrbest, @intolight , @malleemiss251 Great to hear about your stable scans!
@irishlove What a horrible story. Sorry you went through that.
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irishlove,
I had "one of those machines you wrap around your legs to get the blood moving and decrease swelling?" Bought it when I developed lower leg edema while on Verzenio, probably due to low albumin and low protein. I didn't think the device did much good and no longer have it. The edema mostly resolved after I stopped Verzenio. I'm now on Enhertu and again have mildly low albumin and protein levels and lower leg edema has returned, but it's not as severe as when I was on Verzenio. I wear compression stockings which help somewhat.
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Sondra, in our condition, we must be thankful when the damage caused by medication-related side effects is caught early, but I can’t help but wonder, how long our luck will hold out?
Candy, my understanding from the way my IR’s PA explained the referral for a liver MRI is that they use a different type of contrast specifically for studying liver tissue/veins. It’s not the same as the Gadolinium used for routine MRIs. honestly, I didn’t catch the name of the contrast.
last week, I experienced heavy chest tightness, shoulder pain, and skin redness. Since the clinic was closed on Monday, I called on Tuesday and was directed to go to the ER immediately without much explanation. it was stressful, with a large portal vein thrombosis in my liver, being on blood thinners, and the numerous meds, including steroids, that I’ve been taking after Y90. thankfully, the chest X-ray came back clear. the ER physician recommended switching from Lovenox to Eliquis immediately, but guess what was the cause? medication interactions! it’s frustrating that someone at the clinic with a medical degree(!) couldn’t have reviewed my chart and caught this earlier… speechless. the next day, I called my MO’s office to let them know how lucky I was to be alive, I used a strong tone told them that from now on they must pay closer attention to the meds they prescribe for me.
Threetree said it perfectly, there is no real "care provider", they just provide treatments that may or may not work.
I have my first blood test and IR follow-up on Friday after the Y90. I’m hoping everything is going to be good after all those pain and challenges.
Mel, how are you sweet lady?
Mara, I love the way you described NED/NEAD=stable
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Oh Snowdrop, I am so very sorry to read about this latest development, but also so, so glad that it did get figured out and you are on the mend! I've always thought that they are quick to just hand drugs out like candy, and I do all I can to avoid any of them unless they seem absolutely necessary. I do take the Verzenio and Faslodex, along with an occasional Tylenol, but they have tried to suggest all sorts of anti-deppressants, pain killers, omeprazole, and on and on, that I would be taking altogether along with these very serious cancer drugs. I for one just can't see it, and try to do what I can with old fashioned home remedies and food changes first. A happy light and daily walks improve my mood considerably, so no need for anti-depressants; apples, bananas, honey, and black seed all seem to help with the acid reflux, so no hard core anti-acids for me, etc.
The work I've done over the years used to take me to a lot of nursing homes and adult family homes and I was always just shocked and amazed at all the drugs that would be listed in people's charts (I'm in a social services field, not a medical one) and couldn't help but wonder if that wasn't why so many people I saw seemed "zombie like". Many died also (mostly do to "legitimate" conditions of course), and oftentimes, due to their mental status they could not tell anyone how they were really feeling, etc., so "house doctors" would just assume things and prescribe lots of drugs, some "just in case". On the one hand I appreciate the dilemma the medical people can be faced with, but I also can't help but believe that some people may well have died over the years due to being plied with so many drugs while also being unable to convey to anyone, just how they were feeling. It's a dangerous tight rope they walk. I look up everything that is prescribed for me, ask tons of questions (that many don't appreciate), and really weigh just how much I want to take these various things, and again, try to pare them down as best I can, as a lay person to what I feel is absolutely necessary. Again, I am just sorry this has happened to you, but glad to read that you are getting a handle on it and things are improving. We just have to be "on it" and be our own advocates for sure! Hugs!
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Pretty cloudy today, we are do for snow within the next couple of days so will check my supplies, cleats and I already know I have ice picks in my canes, will just need to make sure I have my own supply of ice melt,kind that does not harm pets, grass or concrete.
I am also doing a couch blanket in the wash presently. Agitates well. Once that is done I will likely do another. Between loads going to play a game that made me 3 bucks on Amazon which is not much to the normal person but could be 90 bucks for the month. The game is stupid easy, just a water colour sort and I watch ads that I trigger every 10 levels. Easy to use toward more free supplies. Got two containers of Kraft Crunch peanut butter since Amazon is out of the smooth, paid 4.00 for both instead of over 13.00. TV is playing as well which pays me for ads I have the blanket in the drier, lint catcher in washer collected a LOT of lint. I did repair my other two lint catchers, better too many than none. I really need to learn not to wash a blanket with anything else either as well.
Planning on an egg, bean and ham combo this morning. Edited, forgot the ham. First I sprayed the bowl I used. Sliced up tiny slices of butter and a little garlic spread. Added the egg second, 1/4 cup of beans and a handful of broccoli cabbage. Used a lid and heated on high for 3 mins in the microwave, cut up the mixture and put in my chopper. Added some spicy chips, think sour cream and onion rings, that kind and some shredded cheese, chopped everything together, spooned back into original bowl, heated for 45 seconds. Added some salt and sour cream seasoning. Also put the sour cream itself as a binding agent. All of the taste did go together very well for me and was enjoyable as well. Not sure what I want for dinner, probably beans and ham, may add something else like a hashbrown. Still going to chop up as that is the best for me to enjoy a lot of stuff, I will see how I feel. Still have a boatload of both frozen and pantry items from the over spending, going to set aside an account that will take my 25 dollar a week budget and save it so it is easier to track.
I am hoping everyone has a good day, in pockets for everyone as well.
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@goldensrbest and @malleemiss251 we are so happy to hear the news of your scans! Thinking of you and sending some sunshine your way ❤️
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@goldensrbest @malleemiss251 @intolight Cheers to stable scans! Let's all keep it rollin!
@snow-drop Sheesh sorry to hear about this drug interactions, so glad you were on top of things! Yep very scary it's like we all need to research and double check things. Similar incident happened to DH and I felt like it was wrong and sure enough pharmacist agreed! I trust our pharmacy more than the docs!
@mara51506 Hope the snow winds up being just a dusting. I never mind that, pretty to look t and gone in a day.
@irishlove @shanagirl Sorry to hear about all the bone pain and agree with ya shanagirl. That diclofenac gel helps me too! I was prescribed it for my HFS from Xeloda but it seems to help with the bone pain.
Here is some Buster love from this morning, he was feeling extra sleepy today.
Thinking of you Mel, hope Theo is giving you extra lovin.
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Fantastic to hear of stable scans for a lot of ladies!
@threetree I think that certainly rings true for my health provider. Hell I call my pain management doc First Name 'have you tried more oxy?' Last Name because honestly every conversation where I try to convey that the pain is more nerve and muscle related than bone it comes back with that sentence. So I am on nerve and opiates to manage the pain such as it is (alongside OTC paracetemol and CBD stuff as needed) and it is kinda doing the trick but not really (and no, Im not going to take more oxy than I already am!). Are they ever really listening? Ive been able to avoid the anti-depressants through the usual approaches because I don't want another damn drug. Its bad enough with the cancer drugs, and then the stomach lining drugs. But had this hip been better managed Im guessing I wouldnt be on the blood thinners and all the pain killers. Its very frustrating on the whole. And thats before the 'just in case' prescribing - Ive returned grocery bags of drugs to the pharmacy (for destruction) and now Ive got grocery bags of wound dressings that will hopefully go back soon. I audit my cancer and OTC drug pharmacy boxes every 6 to 8 weeks and weed out what Ill never use, is old, Im not using, or am no longer taking. Its absolutely insane.
@snow-drop that is scary! I worry a lot about drug interactions and if there are enough people paying attention. I guess the one silver lining of the NHS is that they go for the cheapest first so the chance is likely low lol. Im glad you got that caught in time, but I agree about luck here.
@irishgirl are you sitting a lot due to pain right now? You may want to try elevating your legs more through the day if you are getting ankle swelling and pain. Alternatively, try some moderate compression socks during the day and see if those help - Comrad are a good brand (Black Friday sale now on!) with all sorts of cool colors and lengths so it doesn't look so medical. The lymph clinic at the hospital has put me in the giant pants that inflate and deflate (they go all the way up to halfway my chest because of the thigh swelling) and frankly it was just a really uncomfortable hour since I cant lay down and I don't think it did a damn thing. Knee high moderate compression socks would be a cheaper and faster way to go and see if that helps the problem.
Having a good, low pain day today. Did some needlework, did some housework, returned some clothes, ordered other clothes in smaller sizes and a warmer transitional jacket, walked the house and did some exercises that I think helped keep the main pain in my back resolved - think it may be a touch of the sciatica. Talked to work about returning and agreed to an occupational health assessment to start; Im not fully sold on returning and I can barely sit upright at a computer for more than an hour at a desk if I had to BUT my job doesn't require sitting at a desk the whole day or much of anything really. So I figure if I 'fail' OT assessment thats a sign. I probably won't go back until mid Jan anyway if I do. Just bored more than anything else.
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My PCP office called last week and said my Doctor wants to see me for a medication check. Surprised me! But heck, at least someone seems to care so I am going in on Monday. While I am there I will explore his opinion on some other stuff. He is not an oncologist, and he will agree with that statement, and he has access to all my records since they are in the same system so that is a good thing. My file is thick!
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Cookie - Thanks so much for the Buster photo! haven't seen one in while. I always enjoy them, and they lift me up. We're getting cloudy and dark here with a wind and rain storm coming in this evening, so nothing like a bit of Buster to keep the chill away a little longer😊.
I sure agree with you about pharmacists often having a far better idea about all these drugs than the doctors do.
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I'm going to join @goldensrbest @malleemiss251 and @intolight in reporting good scans, in this case a clean bone scan. Wow! A year ago, as the news just kept getting worse, I thought I was at death's door. Sure, I'm more tired and a bit creakier, but I'll take life, in the wind and the rain . . .
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@tougholdcrow Congratulations! Celebrating with you.😁
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Tougholdcrow - Great news about your scans! I completely agree that life, even if creakier and more tiring, is far better than the alternative. Love the wind and the rain.
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