My Husband, My Life, My Love, My Family, My Cancer
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Lynne, beautiful tribute to our friend Lynne. I never had the pleasure of meeting her in person like you did but so enjoyed reading all of her posts. She will be remembered here fondly. If you attend her funeral, please extend our sympathy to her family. Be extra gentle with yourself too, it’s hard to lose a close friend. Sending you a big hug! ❤️0
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Lynne’s ~My heart is literally aching. Both of you very special to me without a doubt. She found her place here with us and was part of our family. I will never feel the same without seeing her sweet fun posts and her huge smile of her beautiful children and family. She was always giving of her support. I can not imagine the pleasure of knowing someone so very wonderful in person. It would add a new dimension to the word sister. I am so very sorry for your loss as the loss of a kindred spirit is rarely ever forgotten and could never be replaced. Thank you Lynne. For letting us know that tomorrow we need to honor her. I’m going to ask that we all light a candle in her honor and post the picture here. If you have no candles then use any picture or anything you feel would honor our dear sweet sister. Since her funeral Is tomorrow. I’d like to start now ! I love my sister. Lynne(50’s) love you and your beautiful ways. ❤️0 -
......In loving memory of our sweet Lynne Manchester. Rest In Peace with no pain. Fly for us and wait under a big willow tree and we can all meet there together some day. My sweet sister. Everyday you will be missed. All my love and support. Always never ending friendship...~M~
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For Lynne
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Rest In Peace sweet Lynne
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I cannot use enough words to describe how touched I am by all of you reading my family drama and taking the time to respond directly to me. I needed to hear your support.
Update: The meeting with all of us will not be able to happen before my new MO appointment. All did seem to understand the need for urgency, mostly work schedules kept it from happening.
But, there is still one possibility of a divide and conquer appointment. My DD and her husband may be able to meet with my counselor and me this Thursday, March 21. That would be awesome for me. If we could clear the air at least a little, then it would feel more comfortable for her to help take me for scans etc. She wants to help and lives the closest. Pray for that to happen, please.
Yes, I'm sticking to my boundaries, one thing at a time. I told my DS and his wife I would not be able to have the big meeting until late April or early May. Depending on how I'm feeling, etc., depending on SE and schedule of whatever TX my new MO decides to put me on. My gut feeling is that it will be a clinical trial or IV chemotherapy.
So we will set up an appointment for that date, with a big if, for all of us to meet. First things first. The appointment with with DD and her husband.
I'm still having sleepless nights, eating very little, feeling worried and anxious. Yes, I think it is wrong on every level for my family not to surround me during my cancer treatment. I have not been able to stop feeling resentful about that situation. I don't know where to put it. Fortunately, I have three VERY good friends who are more than willing to do whatever I might need. And, I'm still hopeful my DD will help regardless.
So, that's where I am in this process. Still on parole, still having supervised visits only with my grandchildren, still hurt. But, I do have hope my DD will come through. I still feel good about changing MO. And I feel pretty good on no TX right now. In fact, I plan to start recovering my antique chairs tomorrow. I also made a lot of progress on some financial issues that were bothering me today. That relieves stress.
So, everything is not horrible for me. I choose to say yes to hope, even in the middle of family crisis. 💞
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50s, what a loving tribute. I hope you are doing too with your own health issues .
Grannax, fingers crossed that something good comes out of all this tension and drama. It's exhausting.
Lynnwood, I think just going to the doctor, walking through those doors, smelling the smells and hearing the sounds, the whole thing is one, big downer. I told my doc that I have seen more doctors in the last two years than in the previous 50! Even if I get good news, or at least not another dose of worse news, I walk out feeling blah. All of us can think of things we'd rather be doing!
Micmel..as always, this is my home thread and you all are my main peeps. I read, I cheer, I weep, I pray.
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Divine, sorry about progression. I know after such a long time just hearing the word must have felt like a major punch in the gut (although I think it still isn't sure it's a met, right?) Just out of curiosity, have you been feeling any pain.in the area?
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I've been away a few days. Just too much. I am caught up now but can't possible remember all I should answer.
To all of you with serious struggles, I'm so sorry! For all of us struggling with the new normal, I'm sorry.
I just want to mention the word "thrive". Speaking only for myself, I have not been able to thrive since a few months the before diagnosis, when I was very ill but being treated for the wrong thing. Most of the time I'm glad to be here but thrive? No.
Divine, I've been on Ibrance and Letrozole for a year. It is doable. The only se I attribute to Ibrance is fatigue, sometimes worse than other times. *If* you have to go on it, don't dread it. You will have to go for bloodwork every couple of weeks for a little while...two or three times of that. Then, you'll probably settle into a good routine. If that spot is a met, ask about treating it some other way first.
Hello to all and I think of you and pray for you all the time.
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Oh my goodness, I'm reading the posts from the last few days and wow, life for some you has been intense.
Grannax, fingers crossed that the meeting on March 21 goes in the right direction. I'm glad you have a counsellor along to help you. One suggestion...write out a little script (point form notes) for meetings like this for what you want to say and so that You have something to follow if you get overwhelmed. I think you should tell your DD at some point that her actions are hurtful and that you are angry and hurt...leaving you 12 miles from home without a ride shows a complete disregard for your needs and a lack of empathy. I don't know if it's b/c we look good and are managing that this kind of stuff happens, ie we really aren't that sick, or they are scared....but know that you aren't alone. There’s a difference between being right and being heard....sounds like you DD wants to be right (oh the arrogance of youth) and you will be heard.
Gum doctor, holy crap the system is giving you a rough ride. It feels like they want their cake and to eat it too. I suspect if pushed they will have to choose...do the decent thing and discharge you with pension, or face litigation for wrongful dismissal, get roasted in the court of public opinion and any other brick you can throw at them. Hmm...how will this play going into an election year.
It was a warm sunny day here on the west coast of Canada, spring is bursting out...birds chirping, crows having crow sex, and crocuses popping up blooming. It felt so good to sit outside with my coffee and just soak up the rays. I’m thankful for days like this,
Be well, friends. Those with scans or waiting for test results...remember it’s just information!
An
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Just a little rant because frustration. So I go and gets every single scan my MO thinks is best. I do everything she says and a little more. What gets me is that I’m finding more cancer than her or any CT, MRI, Ultrasound or X-ray. I have a big hard lump in my left armpit that started smaller and has grown, but I’m not a doctor so my concerns are just taken in to consideration. I’ve been telling MO aside from the skin mets my right side where my ribs are has been hurting a lot too...now I can feel 2 nice sized lumps there as well. Yesterday was a bad day. I felt so off I thought if I go in I won’t leave. Luckily I was just badly anemic and malnourished a bit so more consistent food has helped tremendously. Now dealing with pain has been another uphill battle. A few weeks ago I started taking the smallest dose of Morphine with Roxicodone as spot treatments. Told MO was slightly better, but I’m still using almost the same amount of Roxicodone. She doesn’t say anything about using a little more of the morphine (which was the plan last i checked which is why we started at the bottom dosage) so I keep doing what I’m doing. Friday I check my pills to make sure refills are put in for things I use a lot and will run out of. I was low on Roxi. MO feels like I should have more left. So I rationed and have been in so much pain. When the time come for the Morphine I cut a pill into 4’s and didn’t need any pain meds till 7pm! Normally it’s 4 pills every 4 hrs. At 7 I only took 2. Why couldn’t we have done this a long time ago!? I’ve been a walking opioid bottle when I could get by with a few pills a day!!!! And my pelvic MRI showed something, but I can’t understand the lingo. Hopefully the image explains why I’m having trouble going #1 and 2. I also found something in my pelvic area and it feels like a very deep tumor where the crease of your thigh meets the torso. I think my MO has given up on me and I have too much cancer to treat. Is that a thing? I have it in both breasts, both breast lymph nodes, lungs, brain, skin, maybe pelvis lymph node (feels kind of like that), maybe spine or it’s the same as what I’m feeling, maybe collar bone (have had pain on the right side for a while). Gem/Cis isn’t working on the skin as I can see the skin mets on there spreading and growing. All I can do is be happy about my here and now I know but I don’t feel happy right now.
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Parry, sorry about what you are going through. I felt like saying something for a bit based on what you shared on the skin mets thread but refrained from doing so. I know you like your MO but you might want to run and find someone who is more on top of things. You absolutely need and mostly deserve a doctor who doesn't look the other way just because you have stage IV.
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Parry-I'm so sorry your going through all of this. You have to call your doctor out. I know they don't like it when you try to tell them but I do think it can change things. Tell them your concerns and tell them you feel we need to get on top of them.
My doctor did tell me he would use ac chemo on me again in the future if it's a life saving thing. Even if I've had my max dose, he would use it down the road. I'm glad he said that bc what else would I have to loose? If that would knock it back again, I'd do it.when I asked about it affecting my heart he basically said well it's this or nothing. He was right. If I don't die of cancer it might be of heart issues, what do I want to do?
Be assertive and tell them if your not helping I want a second opinion.
Sarah
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Parry, so heartbreaking. I agree with Daniel and Skitzblitz, this medical care doesn't sound very sharp or responsive. Gentle hugs.
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Parry~ I know you listed a lot of cancer, but ac chemo kicked the crap out of my cancer in the beginning. If you Have not done it. You may want to consider it. It brought me to NED at one point during my treatment. I agree completely that you should dash ok i mean run to a second opinion.Immediately
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Micmel, very wise advice.
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Good morning, ladies and gentleman. Update on family drama: We tried really hard to have our meeting, with all of us, this Thursday but it's not going to happen. We are doing a divide and conquer on Thursday my DD and her husband will meet with me and my counselor. That plan has gone back a forth, off back to on several times. Extremes of emotion. Now we're trying to book a Saturday that we can all meet. The choices are April 6 or April 20, April 6 is a little too soon in regard to my new patient appointment March 25. I could still be in that limbo land of waiting for scan results, waiting to find out what TX she will put me on, etc. You all know the drill. Or I could be finished with all that and she will put me back on X. Easy peasy. My gut tells me that's not going to happen.
So enough about me. Perry it's really hard to be you right now. Too many obstacles, too little information. I know, by recent experience, how stress inducing changing MO is. So, what to do? No words, no advice. It seems your choices are either hard or harder. Does your DH go with you to your MO appointments? If not him, a knowledgeable friend. You need an advocate.
Meanwhile, back to the antique chairs recovering. Didn't happen, grrr. The silly electric staple gun was broken!!! I wasted two hours trying to make it work. I took it back, got a refund, went to Lowe's bought another one that is supposed to be easier. But, I haven't even opened the package yet. I got too frustrated yesterday, I decided to be Scarlet and think about it today.
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Joe777~Hello to and welcome! Always nice to see you Here and I hope you are doing well!!! 💐happy Saint Patrick's Day! ☘️
Grannax~Family drama never really does not end, comes in waves. Mine goes up and down with. This Jehovah's Witness thing floating around with my DD. I have. Huge gash in my lip from biting so hard with yesterday. It is my DSS's birthday Tuesday.... so we celebrated yesterday. Is 18 th birthday our final youth birthday. A huge deal for us. My head feels like it's going to explode. And also.....I have pleurisy... painful painful not fun. The only two people that's even really Understood was of course DH and DSS... my DD did help with bringing food and contributing I'll Give her that. She says to me how that tomorrow (Sunday, today) that she is helping her DH parents pack to move. After a week ahead of time I asked her if she would be able to go see my dad. Visit for an hour and take his laundry to and from. She said yes. All of a sudden she had to let me know? Really ? I asked you a week ago. Our little family is never a priority....never. Always second or whenever some laundry need to be done. Then there she is coming to our house and says oh can you change my laundry out ? I fold them for her while she works. Even at my worst days. I do it. But it's never met with anything but words. I feel your pain. Take your time and think every step through out. Take one day at a time.
Daniel~ Hello there. How is Leslie? Hope Gabriel was a super pirate. !
Mae??????
Special shout out to Kayla 🦋💙 hugs sweet friend
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Oh shit, roll call, lol! I’m here, hanging out on the mountain. It’s been in the 30’s up here but today it’s 58 and sunny. I’m having a beer in honor of st. pats but really I married an Irish man, so any excuse to drink 😆🍀🍺
Parry, I wish I had words of comfort. I believe in possibilities, hoping the next treatment turns this around.
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Mae~Hello beautiful...LoL at the smile you just gave me. I love your collage of pictures always. I wish seriously we could hang out. You drink and I will pick your brain about all the awesome experiences that you've had!! Hugs and love. ☘️
Gracie???? Worrying. Going to get my man thumbs texting !!!
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thinking of Donna and her family. Haven’t seen her. 🥺
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Parry, I so admire you with all that you’re dealing with and still being so level headed. I think of those situations where someone says, “I don’t know how you do it!” as if we had a choice. I’ve had it said to me at other tough times and would try to explain that when things are handed to us, we just do. They would too. And you’re doing it now, not that you have any choice. Please lean on your DH and your family, and of course on us here. I’m sorry I don’t have any medical advice but I hope your heart is warmed by all of us who care about you. Much love to you!
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Parry, such a difficult time for you right now. I have no words of advice, just know that we are here for you. It is SO not fair that you have to deal with everything. Waving hi to all, still in my funk, onc will be calling on Tuesday with bloodwork and tumor marker results. Alkaline phosphate was elevated in January’s bloodwork. Lab made a mistake and didn’t run tumor markers in January, for some reason they ran vitamin d level instead. So we have no marker numbers since November.
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Hi to everyone---DGS and I had a weekend away with my good friend at her mountain condo. He had fun skiing and in the pool and hot tub. DH still in New Zealand, will return on the 27th.
Doing well after 1st Doxil treatment, hopefully 2cnd one on April 4 will be just as easy.
Loved the candle lighting for Lynne. I was not at home, but I just spent a little time looking out at the mountains and trees and thinking of her-a truly beautiful soul. Still not real for me that she left us.....
Mostly writing to tell you, Parry, how much I am thinking of you. Right here in your corner and wanting your MO to wake up and treat you like you deserve to be treated. It must be feeling a bit overwhelming to think of changing doctors, and also keeping up the energy just to deal with the current MO. I wonder if a palliative care MD would do a better job helping you with pain management? You are foremost in my thoughts.
Grannax-holding you in the light as well.....the flipping chairs will get done and will be gorgeous!
Sending my best to all....love, Mary Jane
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Thank you everyone. We are working on getting a second opinion. My care here used to be top notch and I felt good about it. Recently though it’s gone down the drain. Sometimes DH comes and sometimes he has to go to work. Just depends on how many appointments are in the infusion week.
Micmel unfortunately the first chemo I ever did was dose dense AC and hardly saw it do anything but shrink my tumor .5cm, that said, I wouldn’t disregard it as an option. I’m trying to think I’m not on my last legs yet.
Sorry to miss and not mention everyone else’s stuff going on. Eye sight recently has it taking so long to write and read I can’t seem to keep up. Hope everyone is doing really well and hugs for those not.
Donna sending you some local hugs that didn’t even need shipping and handling.
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Hi, hope everybody had a great St Patrick's Day! I'm really enjoying family time here in Victoria 🇨🇦. Trying to get a time to meet Marianelizabeth in between kids stuff and DD work etc. Still have 10 days! Grannax, I hope everything works out for you. Family can be tough. My DH always says you can chose your friends, but you can't chose your family
Parry, thinking of you, and feeling a bit mad at your carers. You deserve better. Xx
Attaching pic of Grandad doing school walk, Proud Grandad!!!
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Hello Rosie~Nice to see you here sweetheart! I hope the sun is shining where you are. Finally it is here. But still brrrr cold outside. Hugs to you !
Lynnwood~Hello darling. Look outside. It’s not cloudy or raining. It’s actually sunny. Did you see that Ominous sky on Saturday evening?? It was stunning in a scary way!!!! Hope the funk is lifting. Hugs to you too!
MJH~there you go again. Being an awesome grandmother ! You amaze me with the things you do. I wish I could be a fly on the wall to learn from you if ever given the chance!
Grannax also. Wonderful grand mother’s for sure!!
Hello to pots !! Skitz.... masonsma...Sheila Marie!!😞💔. Gracie? Also worried. Donna....a beautifulsunset....Bella! JKL ...JFL...Runor. Your one of my peeps too darling! Hope... my new friend. Kayla... Hello darling 🌹.... Divine.. Hope all is well.
Parry~There has to be somethin to beat it back. Never give up (as I know you won’t). They don’t call us team FU cancer for nothing!! If I recall in some circumstances, If your heart is strong enough, they will give ac chemo again. I’d ask about that as well. Second third whatever number opinion. 😞💙
Minnie~Adorable grandpa with the precious granddaughter and look at her little back pack. Omg adorable !! I remember those days of pink and Disney back packs. My how time flys. A picture to be treasured for sure!! Thanks for sharing I needed the smile!
Blueshine....Bigbhome....Lynne(50’s) I’m ready for 60 degree weather! No more wind or snow!!
Marie.....Tanya... hope you’re resting after your long vacation trip home you strong woman!
Chelle...Nan...Gumdoctor....stilllivin......Daniel and Leslie....Mae....muddling ...........GP...footy..MissBianca..bcincolorado...
Marianelizabeth....elleonwheels
If I’ve missed anyone. I’ll be back I know! Much love ~M~
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Gracie, where you at girl?
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having a toxic cocktail today.
Yummeeeeeee !
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