My Husband, My Life, My Love, My Family, My Cancer
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Moomala~Sounds like a plan to me. I would love that! Know the area very well. I’m so sorry your feeling the way it feels to have that uncertainty looming over us like a weight we can’t see. I’m sorry to hear about the compression fracture. Wtf? It’s like this shit eats us up and chews us away from the inside out. Enough of this shit. Good women and men. Like really ? Somethings gotta give. Ever since my diagnosis, I’ve Lost so much. We all have i am sure. I don’t experience a lot of pain. Aches yes muscles sore yup, headaches for sure. I don’t eat right. Foot pain oh yes. Shoulder pain comes and goes. But it’s aches more. Than Sharp pain. My biggest problem Is the fatigue and mental torture of not knowing. I wish so much better for all
Of us. All of us!
I’m really worried about Parry. Have had no response from Gracie either. The last we spoke was June 28. That seems to be a while ago. I don’t like this feeling. 😪😓
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LOL, Roll Call! I’m here, just hanging out. Got a haircut yesterday, a pixie cut, a little shorter than planned, still getting used to it. Not much else to report but reading and thinking of everyone 🙂
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Micmel- YES about the talking about mortality. I know my family loves me ( I guess ) and they don't want to hear me talking about my death. But it is what it is. Stage 4 is incurable and terminal at some point. And they act like I am being dramatic when I mention the fact. My brother in law has been known to say that he thinks I will live another 30 years. And I feel that my "friends" think I am being a hypochondriac when I talk about how I feel. And YES to the fatigue issue--- people have told me also that they are "tired too". Is it denial? They don't want to face cancer, it scares them. But I just wish that someone would acknowledge that what I feel is valid. I get validity here.
I wonder about Gracie too. So many here have been diagnosed for a few years, but Gracie only 2 years and then to Hospice. Scary. And sad. The reality of MBC. Not all of us will have success with this disease. And who is "lucky" and who gets the short straw.
Mae- Bet the haircut is cute. Pic??
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Hi, I'm keeping up with everyone but usually so tired at night I just can't think of what I would like to say. Too hot here causing real fatigue.
Thinking of everyone, best wishes for any scans etc.
Sad, welcome to this group, it's a good place
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Minnie31 I understand about trying to keep up as so many do here! So glad we met though. Did your daughter and family come from Victoria to see you.
Micmel, I had my new chemo Gemcitabine this afternoon. I also heard from one of my pain nurses and the latest is that once a bed comes up I will be admitted to hospice and seen by the doctor who has previously done my nerve blocks and will be doing surgery which may be invasive but hopefully will stop the pain which just gets worse and worse.
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Roll call check in. I read and feel grief over the struggles, joy over the good. Strength and good weather to all!
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Marianelizabeth~Excuse me hospice? 😪🥺 I hope that chemo kicks the crap out of your cancer and that won't be happening. I think of you often. Don't worry about keeping up, just know you're loved and thought of . 💗💗
Minnie~Hi sweetheart, go to sleep and rest well. How is the hip treating you? Miss you! Night night!
Candy~I think we all have so much in common, this disease makes it so. None of my kids really believe I will die. They honestly think I'll be ok. I have tried to bring it up snap them into reality. It's like deer in the headlights, my DH does get it. That is where my heart break comes in. He is the love of my life. I want To rock on the porch. In my rocking chair. That has been our plan ever since we have been together. There is a song by Van zandt “If you want to hear god laugh tell him your plans" even though I struggle with myfaith. Someone messed with my plans. 💔
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Hello everyone. Sending great thoughts in all directions. I SO get the fuzzy head thing. I lose my train of thought regularly, something that did not used to happen. Fortunately, most of the time DH is able to roll back what I've said to try to figure out where I was going, but boy is that frustrating.
Micmel. Sending a virtual hug. It is truly wonderful to have all these wonderful people here who truly do understand what we all go through. It is such a solace.
Moomala. I hope the PT helps you remain pain free. If its any consolation, even folks without fractures are getting shorter--found that out with my bone scan (negative) but identified degenerative changes in every single joint of my body and yep, the radiologist listed every single one. My mouth just hung open reading it. And I was measured a full inch shorter than I was in my 20's. Also a jaw dropper for me. My daughter wants to find a slant board so I can regain that inch....but, my Mom, who used to be 5'11" is now a couple inches shorter than even shorter me!
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Candy, oh I hate selfies but here’s pic, it not really styled today but oh well. It was getting very shaggy in the back, it’s ok now but soooo short.
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Mae~Your hair looks great! I honestly think you could pull off anything. But it really looks good. Does your hair grow fast? I think since chemo, mine has changed in that way.
Movingsoccermom~It is a needed thing this place , to get it all out and have that non judgmental people surrounding you. I'm so happy to have. You here.
All of you!
Candy~ perhaps we are all feeling the exact same way. because that's how the body fight sickness. Feels like the worst flu ever. Maddening as well all know.
Gonna try to sleep. Gn ladies.
Waving to Sandi beaches ! Thinking of a beautifulsuset
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Mea,
I agree with Micmel on your haircut. It is cute on you.
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Thanks for the compliments. Here’s a bit of good news, my cardiologist said I can go to 6 mo. appointments now and the blood test looks great!
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Yahhhoo! Mae! 😊☺️💗0 -
That's great news Mea!
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Mae, great news about the recent heart labs!
Marianelizabeth, is hospice your idea or the doctor's idea? I didn't know and will be thinking of you (and hoping a bed opens up if you want that or hoping a bed does not open up if you do not). Would you continue with chemo there?
Micmel, you are so kind and caring and give so much to everyone on this thread. I just worry you are not caring for yourself with as much kindness as you are treating us. It is definitely hard to communicate with family and friends that don't realize the reality of the situation or shut down any talk of a time when we are not here. At least your DH understands, but as you noted, that also makes it hard because he understands. I sometimes wonder if everyone around us truly believes the denial land they live in or they just put on a face for us and worry that if we acknowledge the reality of our future, then we are somehow giving up and giving in. We can acknowledge the reality and still continue to fight like hell against this beast. However, I don't think others see it that way.
I am sad and worried about Parry and Gracie. No news is certainly not good news around here.
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JFL, I would say it is our idea. It is the way to get assessed by my doctor who will ultimately so an intrathecal infusion which is invasive but will stop my pain. Tonight I took 8 mg Hydromorphone tablets x 3 twice within one hour and the pain was still there. It is neuropathic caused by my tumour entangled with the neuropathic bundle within the brachial plexus and over the past two months has steadily increased even daily. PET scan ASAP too.
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JFL~Do we ever really live for ourselves? I know my life have been spent raising my kids and. That was what I did. I try to rest which is something I love/hate. I love that I can and I don't have to worry about working. But the other half would drive you nuts all day, everyday left alone with my thoughts and this disease. That is more than half my battle. I hate it for us all.
Marian~I just want you comfortable and support you in whatever choices are made. You're such a special friend. Take your time and think things through. I can relate to your brachial plexus, I have had that surgery, and low and behold it took the function of my right lung. So please be careful!! Much love to you dear sister. I hope a bed comes soon if that's what you have decided. Mucho respect ~M~
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I think it is considered bad manners to confirm to people who are dying that they are dying. Death was the last taboo left in the society before they introduced a taboo of calling black black and a spade spade.
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Hi all. Just back from the monthly port flush and Lupron injection. The shot didn't hurt at all today !!!!
Mae- Lookin good!!!! You wear the style well !!!!! I don't like pics of myself. That is why I never post pics. Big nose, thin hair, not cute. Ugh.
Marian- I hate to hear the word hospice for you. Prayers.
Well I was going to have lunch with my sister today but she called early this morning and cancelled. Something came up at her house. Boohoo. So another day of not much to do. I am glad I am no longer working (short term disability now with plans of SSD application next month) because I don't feel up to it anymore. But I am getting bored/lonely. Everyone has their own lives and I kind of feel lost without a job to go to. It is like my mind still wants to gogogo but my body says no. Hope you all have a good day and good weekend.
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Please may I ask for some positive vibes to be sent in the direction of me and the Mister? Here's why: This May, dh took a volunteer early retirement offer from the power plant where he worked due to uncertainty how much longer the company will be in business, even tho he really didnt want to quit the job. He has a few years until he is 65 so wants to still work. He is in excellent health, in shape, energetic, hard working and much, much more. He's applied for a whole lot of jobs and so far nothing has opened.
This week he applied for a position as a maintenance man in a senior citizen housing building. He literally checks off every single box for the job qualifications. He has done it all. The job is at a well maintained building five blocks from our house, He went and talked to the man working there who is leaving the position dh has applied for. He took dh all around explaining the different responsibilities. Dh got a really good vibe. They need someone “immediately" as the current maintenance guy is done the end of August. The man said he that he had a feeling dh would probably be hearing from him, tho there is a corporate office elsewhere that must call some of the shots. So far, dh hasnt heard anything.
That's my reason for asking for you to send us all the good vibes you can in the hopes that this most perfect of position would open up for dh and he would be hired. He simply has too much health and energy to sit around the house. They couldn't get a more perfect fit than dh for this company, Why can't these employers see an excellent employee when they see one?
It's been a frustrating summer seeing the struggle dh is going through searching for wor. He liked his job at the power plant and was making great money.
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Divine~Good vibes on their way. I was just saying how everything is so shitty. I hope your sweet DH gets the job he wants. Certainly makes no sense honestly. But then again since my diagnosis, everything has gone down hill. I have no clue or understanding why. I am with you sister ! Much love to you 💗
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Micmel, what was the brachial plexus surgery you had? My procedure will most likely be a permanent implantable intrathecal catheter infusion catheter. It is still considered a surgical procedure. The hospice stay is not the sort that means end of life. I was there last June for two weeks for pain management and there are 7 beds for things like that and 10 for end of life. The plan is for admission and assessment while getting the pain under control and to see if the procedure will be approved too~~it is not often done and I think the cost has to be approved by the cancer agency. Anyway I did hear that Dr. Svorkdal, who is an anaesthetist as well as the head of the hospital's pain clinic, has conferred and will see me as soon as I am admitted. There are two pain clinics, the other being part of the cancer agency and I have quite the team as everyone is involved in my care. JFK, this newest procedure was discussed last year while in hospice with Dr. Svorkdal as a possibility down the road. Meds and nerve blocks worked up until a few months ago so this is the next step really. I already have no use of my right hand and if I lose the use of my arm too, not likely but possible, it will be worth it to be pain free.
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Divine-- Good vibes coming your way from here. Does sound like a good opportunity and close to home. If I was him, I would make a call on Monday and ask about the decision. One job I had YEARS ago I kept bugging the office manager. She laughed later about me hounding them and she finally gave in and hired me. We got along great and I worked there 15 years. Best job I ever had. Keep us informed and prayers he gets the job!!!!!
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divine good vibes for your mister and you!!!! This sounds like a perfect fit! Crossing fingers and toes!!!!
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Divine,sending all the best vibes and prayers too, for you DH to get this job!and
Hi to everyone. Reading along, not much to say. My treatment will be changing next week. Tumor markers going way up. So, we'll see.
This is a home, so everyone should feel like stating their political opinions, but I also feel free to leave. I'll check in here now and then though, to see how everyone is doing. All the best and nothing but the best for all of you.
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Muddling- I hope I didn't offend with anything I said. I am sorry if I did. Don't leave us. I want you to feel comfortable posting here and I want to stay in touch with you. Again sorry if I played a part in you being upset. Hugs.
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I am sorry too! I had an atypical spaz rant. Won't happen again, I promise! Don't leave!!
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Mae your hair looks so cool! Love the cut!! And congrats on your great heart health numbers YAY!
Moomola and Micmel - I would love it too if we had a visit! I have cousins in Doylestown and could make a day trip of it!
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Muddling~My darling.... you can say whatever you're little heart desires. This absolutely your home. I don't really enjoy politics myself but it doesn't mean I don't value everyone for who they are. If you were to leave one of mY original people would have flown the coup. Ahhhhhh noooooo! It's always your choice of course. But this stool will always have your name on it.
I don't think this thread has ever had anything but love and more support and sometimes things get lost translation when' we post.
I adore you! Sister
I’m going to ask for a tx break myself, because I’m loosing my mind. Just want a break. I’m ready to get off of the wheel for a little. Four years in 2016. I don’t know how you ladies, with 8+ years under your belt have done this. I gotta Hand it to you all! Wo
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Divine,
Good vibes sent your way! I hope your husband gets the position.
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