My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Not so great news Moth, but please try and hang in there. Sometimes it just takes awhile for a plan to be put in place? Your team needs to get a handle on this first. Not good or fast enough for you tho... and that’s totally understandable!
Candy we’ve both been here a while now and you DO have folk around you... just not in actual hugging distance. I look out especially for your posts and check ins!
Speaking of which:
Mel you keep this thread together and we all appreciate you... hope results for you are positive.
Everyone - there are too many to name now, but we’re here and listening even if we don’t always respond right away or we make mistakes.
Again, for the third time moderators - a like or at least acknowledgement button would be helpful!
0 -
Candy, I agree with an above poster. Is there any sort of volunteer driver service to sign up with? It is very hard being on our own for treatment. I can certainly empathize with how you are feeling. Hopefully you can find something soon that will work for you.
0 -
Moth~oh honey. I can see why you would be so upset. Please keep an eye on that temperature. Best to be ahead of that, than behind it. I am sending you my thoughts and I am sorry to hear about progression in your liver. They can use ablation, but not with any temperature. Gotta get that down! You’re on my mind.
0 -
Karen sweety~ you give what you can give and we all know we are here for the same reason To support one another. To find the other half of misery loves company. It sucks to walk this road. Only some Receive the map to this place. Once you're there you cannot return the same person. You look kinda the same. But you're very different. Everything has changed. forever !
my blood work cane back fine. Markers super low. So I'm hopeful the scan will follow. It usually does. But I don't like to get ahead of myself in anyway.
Mae~ thinking of you. I so hope each day brings more relief. You deserve to be back on the travel train!
Tanya~ How are you? Sondra~ hope You're well! Candy, Mara, Sandi beaches, dodgersgirl,Minnie, Grannax, Philly, Moth,Movingsoccermom,MJH, Blueshine, Hope,Runor, rabbit, youre all Wonderful friends!
Iwrite~Good to see you. BevJenHi there! Jensgotthis~hello lovely!
Lynne 50's always a chair with your name on it. Always.
0 -
I thank God for each of you. Really. I am touched. We are a family here. I love you all.
moth- No, I am not amazing. I am stable. I go see my MO every 6 weeks, labs and injection monthly, scans every 3 months. All done locally. I live in a town of 20,000 residents. I drive by my cancer center (MO office) every day. No problem to go alone to appointments. Yes, it would be nice to have someone for moral support, but not bad going to my appointments alone for now when I am doing ok. I go to a small church of mainly older folks. There are a couple of women I can ask for rides from if I need to, but I cannot rely on them all the time as they have families and responsibilities of their own. Taxis are available, but not ubers. And not taxi or uber for a 2 hour one way trip--that would cost an arm and a leg !!!!
Tanya- I have not checked into American Cancer Society yet. As I said, I can go locally by myself. It is the 2 hour one way travel that will be the problem, especially if I am sick or weak.
Karen- I am touched by what you said to me in your post. Thank you.
Mara- As I said to moth, there are a couple of women in the church I can ask to help. But not all the time. That is about it.
Mel- The Lynne you mentioned, is that 50'sgirl Lynne? She just posted today in the " A Place to Talk Death and Dying" Thread. She is not doing too good. The end may be near for her.
0 -
Candy thanks for the info on Lynne 50’s girl.
Tanya
0 -
candy~ yes that is who I was speaking of. I didn't want to make a topic of it throughout the threads. I just wanted her to that she is loved here without being to nosey or disrespectful in anyway. I have known her my entire time here. She's someone I respect and love greatly.
She posts here from time to time. Was a regular for a long time. We miss her everyday. Honestly. She's a good soul. A happy woman who brought love whenever she goes ! I am sorry to read that thread, words cannot ever convey. Ever. What we really feel. About this disease.
0 -
I'm feeling pretty crushed too about where things are for Lynne and all the feelings that go along with it.
Sending hugs to everyone here. I keep up reading and root for each of you through the hard times and smile at the good
i scanned today too, Mel. Bone scan done and will do the CT scan end of next week. Yuck
0 -
moth - I am gutted to hear your news. Sending you warm hugs. Do you need rides to chemo? Someone to talk to? Happy to help any way I can.
Ann
0 -
Pots~I am so happy to see you... I think of you often, and hope you’re doing well and here you are lending support to another sister. I am wrapping you in hugs. Sweet woman
Moomala~ you doing ok ?
0 -
Jen~I don’t even know how to put it into words how sad I feel about Lynne. So strong and supportive always to everyone. I feel helpless and hope the big guns shrink a lot and it turns things around That’s what I’m clinging too. It did wonders for me. I am thinking of her mom atop
0 -
Lazy Saturday morning in my living room and hellos to all of you beautiful people!
Moth - I don't even know what to say my dear. This sucks. I'm in a quiet period right now, but progression happened over every three months plus new treatments and side effects and there are so many moments I felt like giving up. I'm sorry you had to hear that news about progression.
Shetland and Mae - I'm sending all of my mojo over to you both.
I have been having a lot of trouble with diarrhea again. I really don't know if it's the Afinitor or not. I noticed that when I stopped using Advil for a few weeks the D slowed down quite a bit. I have been back on Advil for a week and the D is back with a bang. It's a little surprising becuase I'm only taking one Advil (200 mg)a day which everyone says is fine, but I've been doing in for several months, so I suppose this is not good for my stomach. I didn't realize that it could affect your intestines too until I googled. On to the next pain med. They've put me on gabapentin which DH will pick up for me today. I am nervous becuase I am scheduled to see RO for rads to pelvis next month. How much diarrhea can one body take. I'm keeping up with potassium supplements and fluids and high potassium foods, but I'm considering not doing the rads. I'll wait until after speaking with the RO before I think about this. Meanwhile I'm taking a day off solid food to let my gut rest up a bit. I'm off work for three whole days right now and I'm loving just sitting with the heating pad on my back, taking little naps, reading and watching a few tv shows.
My PCP's NP did a home visit with me last weekend to check on my depression after lexapro caused my depression to sink even lower. Sleeping 12 hours a night (i'm not against this however that's a lot of sleep) then sleeping more in the afternoon. Feeling consideralbly hopeless and avoiding all of my friends and family. I was taken off the lexapro after three weeks and I feel much much better. I'm a little tired becuase I'm making some med changes and not sleeping as nicely as I normally do and this diarrhea is really not awesome. The NP said I seem fine and she continued with the visit talking to me about steps to avoid coronavirus and flu and stuff. My PCP is doing the next home visit to administer my second shingrix vaccine sometime in the next few weeks. I am loving these home visits from them. One of our hospital systems/corporations is trying it with a few practices to see if it's viable in the face of coronavirus, both to protect the immune challenged patients but to protect the office healthcare workers as well. I'm all about it.
0 -
Moomala thanks for the update. I like the home visits too. Wouldn’t that be nice. When I was a kid I remember the doctor making a home visit to us. I’m 62 now so that’s quite a long time ago. It sounds like you’ve really been through a rough treatment patch. Enjoy your three days off. I’ll be in your pocket for your rad appt. with potatoes chips and onion dip.
Tanya
0 -
Hello Saturday to all.
I am spending my Saturday inside. My errands are caught up and I am thinking about laying low due to the coronavirus thing. We don't have any documented cases in our town, but I figure better safe than sorry. A Saturday doing laundry and house stuff in my comfy home is not too bad. Moomala- Home visits, good idea. We, of course, don't have that in our small town, but that is thinking outside the box. Good. What suggestions did your MO have for you? I am not freaking out about the coronavirus thing, but I do have a respect for it. Our immune systems takes a hit with these drugs. Trying to be smart about it. Risks versus benefits/rewards thing.
Moomala- So sorry you are dealing with the D. Let me know, PM me if you want to, on how the gabapentin does for you. My PCP suggested it for my chronic pain, but I have not tried it. You know, risks of side effects versus benefits of helping with the pain. Decisions, decisions.
0 -
Moth,
I too am sorry about your progression. I’ve been hearing that now for well over a year. Have tried several different drugs hoping I’d get the “stable” word, so I really truly know where you are emotionally. I am now on a very promising med (Abraxane) that I feel certain is working. Pain levels have gone down, so that’s my prayer for you. I will have scans sometime at the beginning of April, so I’ll be the one with scanxiety.
Take care, and know that you are in my prayers.
Laurie
0 -
Mae,
I’m always thinking of you and hoping that you are getting better every day.
Mel,
So glad the scanning is behind you. Please post once you know about the scan. I’m hoping for good news! Love you, girl.
0 -
Moomala—. Oh, no... sure hope you kick that stupid diarrhea to the curb. Please let us know how gabapentin does for you.
Candy-678: it’s a beautiful day outside today, sunny and starting to warm up. What a great day to hang around the house. Have a great day!
0 -
Dodgers- It is sunny here---nice to see it coming thru the windows. But still cool--49 degrees right now. Too cool for opening windows. But I am not complaining. I do not like warm weather. What State are you in?
0 -
Moomala, I am very sorry to hear about the diarrhea and depression. That is an awful lot to deal with. Glad your NP is able to visit you at home. I hope the depression continues to iimprove without the lexapro and hoping the diarrhea subsides.
It is a beautiful day here. Not doing a lot except some laundry and making money on my computer. Did sell my stationary bike as I was not using it. My apartment is small so might as well get some cash and sell to someone who might use it. Not walking a whole bunch as my feet are still recovering from the 11 km walk thursday and then the hour long walk outside yesterday. Taking advil is helpful. Got insoles that should help too. Considering compression socks when walking longer distance. Only did half an hour on treadmill.
0 -
A little something funny I found online.
0 -
hello my dear friends
moth - man i am so sorry to hear how things are going right now for you. i hope you get a plan in place as soon as possible. please keep us posted on how you are doing. we are all rooting for you to find the best possible treatment.
mae - glad to hear you are slowly recovering. you've been through hell and back again. can you eat things like milkshakes? or jello?
moomoola - how are you doing there friend? interesting about the advil. i don't know what the answer is to why you are having the big D but sounds like you are considering the possibility of NSAID GI upset from it, even on such a low dose. I am afraid of nsaids now after my gastritis and diarrhea issue and 4 little ulcers from taking prescription strength naproxen for about 2 weeks. it did me in! i think there were underlying issues prob from the ibrance and who knows what else maybe genetics? it does sound like there is a correlation with the diarrhea and the advil, since it seems to get worse with it and better without it?
mara -great job keeping up the movement! i think it is so important to keep moving for as long as we can!
hi tanya candy and booboo!! lots of love!! candy i am staying in too on a saturday night. my weekends are not super exciting these days lol! but i usually work late on fridays and then all day saturday...so i just need to hermit and chill and be with a close friend and or family. not the ol wild dance clubbing human i used to be!
mel - how are you holding up post-scan? i am so glad your tm's are low! sending the brightest wishes into the universe that your scan follows suit. yes! meetup. IRL! lets get something on the calendar for april?
hi karen! how are you doing on the other side of the sea? how's the whole coronavirus affecting your area?
i found out yesterday that someone i knew on instagram that i was following, she lived in the netherlands, passed away from mbc. i think we are about the same age. this one hit me hard. she was absolutely beautiful and she did her best to live her best life.
i am so sorry to hear lynne isn't doing well.
hugs and love to all,
philly
0 -
Morning ladies -
The sun is up here (about 7.15 am) and enjoying it now cause the weather forecast for the week is looking grey and craptastic. Ugh - sorry BevJen! Its not cold, just really moist. I think the cat is getting SAD, he looks so bummed and just wants to watch his bird and squirrel videos on YouTube. He looks out the back door at the rain and goes back to the couch. Poor little guy.
Got in a great swim yesterday and feeling so much stronger these days that I'm down to a cane for long distance purposes, or sometimes I walk out and forget it completely. Still having a lot of trouble though with the non-cancer side leg, and now the left calf and achilles is just driving me nuts with cramping and tightness. Off to brunch with my Scottish friend down for the weekend, and yes, he drops 'wee' quite frequently, my favorite example was when he exclaimed of a well-known Scottish musician of a certain age - 'ach, he's really wee!' (Karen, you may be able to guess who it is - he was highly visible in about 1985).
Moomala - that is worrysome about the Advil and D. I am trying really hard to get off the Advil because I don't want to wreck my digestive system and I've been on it for about 9 months now, but it is the only thing that seems to work for the back. I've been able to cut back, and am trying to switch with paracetemol too, but to see that only 200mg can set someone off, man, that's worrying. Im going to try the Whole 30 (well, more like a Whole 2.5 weeks to my next MO appt) to see if it helps me manage inflammation aches and pains so I can save the NSAIDS for other stuff. I realise that doesn't really help the issue of sharp pain, however!
Philly - send beach and blue water pics back from the island!
Mara - thanks for the reminder, it seemed LAST full moon a bunch of weird things kicked off, so who knows how this week will go!
To all - have a great Sunday and keep those hands washed!
0 -
Morning, all my friends.
So I am trying something different. I have been thinking about my low counts, the coronavirus scare, and the illnesses around our area right now. I spoke with a friend on the phone last night--he has been sick over 2 weeks. He has a history of asthma and he caught the crud going around. I could hear him wheeze with each breath. So....I am going to try some social isolation this week. No church services today for me. I called my Pastor yesterday and discussed the secretary job I have been doing at the church during the week--- I am going in tomorrow to tidy up some things, but then going to work from home this week. I looked at my schedule and I cancelled a couple of things. We are in a small town with no known cases of coronavirus. And I am not a person that goes a lot of places anyway. But I thought I would look at my weekly schedule and pare down where I could. I am hoping this only lasts a month to 6 weeks. I hate having to look at things in this light, but I want to stay healthy. I have not even gotten a cold this winter, and the cancer is stable on Ibrance. I want things to stay good. I may be doing overkill, but... We are going to see how this goes. Some things - groceries, MO appointments, bills - I cannot get away from. And I may not have the fortitude to continue this past 1 week, but...
Philly- I was never a dance clubbing human. Hahaha. Bet you can tell that from my posts. Sorry for the loss of your Instagram friend. It is always a gut punch to hear of those that succumb to MBC.
I will be checking in more frequently since I am not going to be out and about as much. Will be kinda lonely.
0 -
Sondra,
Regarding body aches, you might investigate both Curcumin and Omega 3 fish oil. When I started those supplements, my inflammation must have really dropped because I had both a knee that has bothered me on and off for decades and a sore hip that hit in my 50's.... and both aches disappeared. A low inflammation diet probably helped too. I pretty much eat vegan whole foods with small amounts of fish or animal foods as seasoning. It was not easy to change my habits of "go to" foods and snacks, but it has been VERY easy to stick to this eating, as I do feel appreciably better.
0 -
Good Morning Ladies~The sun is shining but it’s windy. I am sitting watching tv with DH and loving it. thinking about you all! Enjoy your Sundays Even if it’s just one thing! Hugs and love.
0 -
Sondra, I agree with Santabarbarian about the curcumin and fish oil. Never tried low inflammation foods but both the curcumin AND fish oil were helpful when I was getting pains. This was even before cancer. I don't take much nowadays except the odd advil.
I did make my feet quite sore from the long walk to I purchased a silicone toe separator to keep my foot stretched when walking, found some insoles and compression socks when I know I will be walking a lot. I need to be careful that I do not totally fubar my feet as I would be devastated if unable to walk. I also have finally sold my exercise bike so there would not be much to fall back on exercise wise for me.
Beautiful sunny day here, supposed to be quite mild as well.
0 -
Sondra - my dear! Are you by any chance able to see an acupuncturist? IMO that’s really the best thing for us if we can 1) afford it and 2) are able to easily get to appointments - which I know isn’t so easy for everyone. In some states and countries it is covered by insurance. I have recently been approved as an in network provider with Cigna and a local Medicare branch. Working on BCBS and Aetna.
I am lucky to be an acupuncturist so I’m in this world and it is easy for me to obtain treatments. Plus, here we have an organization called UniteForHer that offers free acupuncture treatments and massage and nutrition consultations and other awesome bonuses for people with breast and ovarian cancers. I am also a provider for this organization, which is awesome!
Acupuncture is relatively painless and what I love about it is that we aren’t putting any substances into our bodies that we are unsure of how they may or may not affect and/or interact with our treatments.
What’s funny is a lot of patients often ask me if I put medicine on the tips of the needles! 😂 I guess it must feel like it! But I assure them, I only lick the needles before placing them!
0 -
LFP, lick the needles, BA HA HA! Bad.
0 -
ruror 😂😂😂😂😂😂
0 -
Happy Sunday everyone
I have some progress to report. I’ve been reintroducing foods in very small bites, of course and I can now eat squash, zucchini, cooked carrots and baked potatoes. The bites must be the size of a fingertip and chewed very well but at least I’m no longer limited to soup. I’ve also stopped using the thickener in my drinks. My voice hasn’t improved but I remain hopeful. DH is making chicken and dumplings tonight and I’m excited to give it a try.
0
