My Husband, My Life, My Love, My Family, My Cancer
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Well, just when I thought the property managers could not be more inept, they installed a keyless entry to the back door on this floor. The lock works fine but there is no door handle on the inside, you sort of have to grasp the lock to pull the door open, so stupid.
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Mara your new PM suck. I am sorry to hear ONJ passed away, that is very sad news. I think of all of our sisters on BCO during these times. Moth, I wish you peace. I wonder about runor. Micmel I hope you are well. I have surgery on Thursday, I can’t help but wonder what the results will be. I hope for the best, expect the worst so I won’t be taken off guard. I can only keep on keeping on. I don’t know how long I’ll get but I’ll do my best to live it as best I can. I have some strong and loving mentors here. Youz guyz are da bomb!!!!!! Xoxox
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mara: WTF!? Just when I think maybe, just maybe, your situation is getting better or at least not getting worse........Yeah, stupid.
Re ONJ. They talked about her raising $250,000 for MBC research. That's great but c'mon, she hung out with Hollywood elites (No, I am not a Repugnician but those folks are elite) Surely the likes of John Travolta and other "stars" could come up with more than $250,000. Collectively on the BCO board we could come up with that much. Maybe even 250 of us could pony up a $1,000 each. I am sad at her passing but crowing about all the money she raised pissed me off. Did I get the amount wrong? Was it $250M?
What is happening with Shannon Doherty?
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In your pocket for your surgery Molliefish. I know my scans are usually good but I always have to open my mind to the possibility one will not be as well. Cannot get as blindsided as you mention as well.
As far as the door, I am going out in the hall and getting used to opening. On the plus side, I take garbage out front now so it is not such an issue. I truly hope they don't install the same type of lock without a handle in the front. I debated emailing but figure if I can adapt to it, easier to do that. Only other thing I do not like is someone could easy forget to lock the door as they go out, need to watch that.
On the Tigger front, he appears back to normal, hungry, peeing more as I have been giving a lot of water. Happy as a clam. Not sure what yesterday was all about but appears to have been a one off.
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moth update (This is written by Margaret's daughter.)
Margaret is very unwell but still with us.
Based on her blood work last week the chemo she was on (Cisplatin) wasn't helping. Her liver was continuing to fail with an even higher bilirubin level. Her
hemoglobin was also very very low. Her oncologist said it was time to stop treatment as any other treatmentwould cause more harm then good. This was on
Wednesday, because of her hemoglobin she went to the ER to get a blood transfusion in hopes it would make her feel stronger for a bit. It didn't unfortunately.
She has been home since Wednesday night and getting weaker everyday. She has said she wants to die at home so the home health nurses and palliative team have been putting all the measures in place. She struggles to communicate now, with her liver failing she gets slightly confused and she can rarely use to right words which is very frustrating for her as she can't make herself understood. She has told me that I have to update all her social media sites so I will be working though them as I can.
Please know that she values her online friends so much and that you have given her so much over this difficulttime.
#fuckcancer #stage/Vbreastcancer
#stage4cancerisFATAL #breastcancer #bcsm
#metastaticbreastcancer #mbc
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Thank you Pots and Moths daughter for the update. I am very sad for Moth, her family and friends here, in person as well. My thoughts are with everyone and sending healing thoughts. Wishing Moth peace after all she's been through, at home with family around her.
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sending Moth loving hugs . You are loved.
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Sending Moth love.
About Olivia Newton John, Yes she had MBC, but we don't know what killed her. Maybe her heart, or something else. Maybe her MBC was stable. Who knows. We will not know what actually happened in the end. Yes, she was an MBC sister, but MBC may not have killed her.
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Sending Moth and family loving hugs.
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I commented on Instagram to Moth’s daughter. This is so very sad. Hugs to all.
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Thank you for the update Pots. I’m heartbroken…. Feeling the weight of this disease today….
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Still wishing Moth peace with her family.
As far as ONJ goes, whether MBC directly or had a more indirect hand by causing an issue in her body or meds or whatever, we do not know. We do know MBC would have had a detrimental effect on her health most likely but no matter what it was caused by, as Candy said, she was an MBC sister and will be missed by family and friends.
Final word about Tigger, he is eating, drinking, playing, running for food and using the bathroom. I am relieved and will keep watch.
Not much going on for me. Going to wash bigger blankets in the portable washer. 1/2 at a time, basically, go through wash, 2 rinses, spin dry and then do the same to the other half. Keeps it lighter for me and I don't mind holding on to it. Laundry room we do have stores a lot of equipment in the wee shed and the door no longer closes so taking it there is not an option. Must do it here. Only two that the portable washer cannot do.
Breakfast was good, mexican inspired. Black beans, 1/4 cup, 1/2 cup beefless ground and some corn medley. Wanted a quick breakfast so microwaved them for 75 seconds first. Brought over to frypan, sprayed with non stick spray, put the beans, beefless ground and corn in, added taco seasoning and some queso. Also sprinkled bran for fiber. Cooked initially on high, turned down to low and covered to let flavour build in. Once plated, added some onion and sour cream and it was the bomb. Really enjoyed it.
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Really appreciate the update on Moth. Keeping her in my thoughts.
I appreciate all the updates, and I can't remember the individual events. I need to take notes, I think.
Radiation tx is going well, and it's so quick and easy. Yesterday I was in the door and out in twelve minutes! And not being on chemo is kind of nice, too, even though my lung and liver tumors are not being controlled right now.
The ulcerating tumors on my breast look a lot worse, but I was told to expect that at first. Also, it can take up to eight months for all of the results of radiation to become evident.
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moth (sister, daughter) thank you for the update - albeit so sad. You are surrounded with our love, even if it's remote.
mara, how is that even legal??? I'd be a screaming banshee if I were you! Or I'd take that frying pan (is it cast iron?) and hurl it at someone! Glad Tigger continues to improve!
Love to all,
Carol
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thank you to moth’s daughter for keeping us updated. I hope she is comfortable. I hate this disease.
Mara I am glad Tigger is doing better. If your back door has to be opened by grasping, that likely a violation of accessibility laws there. Not sure what is the Canadian equivalent of the Americans with Disabilities Act (ADA), but tight grasping of door handles should not be allowed in a building like that.
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No wonder no one understands MBC. I have never read an article from any paper that reports it correctly. No wonder people tell me “You don’t look sick.” Yeah, but you should see what my insides look like. I have written to more reporters than I care to admit to about getting the info right. I most often get a response of “thank you for letting me know”. I will continue to do whatever I can to bring awareness to this disease. And especially MBC.
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booboo: Cold comfort to be told ":you don't look sick".
mara: Does Tigger show continued improvement? Yes, there should be a law about having ease of opening a door from the inside.
ninewelve: Happy to hear it went well and may things continue to go well.
Hi to everyone else
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Kikomoon, there is NO door handle at the back. Not accessible. I will likely email them again to point that out, unsure how someone with a week grasp could even use that but I'll take care of it later.
As far as ONJ goes, yes she looked good with makeup, unsure if she lost hair etc etc etc. We also know that even if MBC was not the immediate cause of her death, it certainly contributed in damaging her body internally. No COD was released yet and premature of media to report losing her battle with cancer (hate that expression) are premature.
Tigger is fine thankfully it seems. Set up a vet account so he and Ava the other cat can have checkups periodically anyway. Tigger loves the water in his dry dental food and his mood is back to normal.
My wellness check person really puts me to shame. This little lady, only 4ft 7inch has dealt with brain injury, repeated falls and crippled limbs and yet she does not let anything stop her from moving everyday, I struggle to want to move, told her she is inspiring to me. Amazing what she can do.
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I appreciate the update on Moth; thanks to her daughter for letting us know. I hope Moth is comfortable.
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Sadiesservant - Thank you for the warning. Yes, I have not quit and likely can not at this time. I am just gathering information to see what options I have. I have been with my employer for 10 years and am currently out on the short term disability benefit. We do have a long term disability benefit but it's very specific. By it's wording I must be unable to work in any capacity appropriate for my skill set or education. I'm not sure I could claim that right now. My supervisor and employer have been very supportive and so I don't really feel that retiring is an option for me financially or that it would be smart right now even if it were. I just am laying out a game plan for the future and considering all angles.
I am also sad but grateful for the update on Moth. Also thinking of Mae, wishing good news on your scans. I start radiation therapy tomorrow so we shall see how that goes.
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Hi Emac,
I think we might have been in similar positions. First, I would like to say that I suspect, like me, you are setting the bar very high in terms of not being able to work. My plan states unable to work at my own job for, I think, two years and then unable to work at any job, within 75% of the pay and in line with my education. I really struggled with that as I felt I could work but at what cost? It finally got to the point that it was clear that full time was out of the question. I reduced hours on partial LTD but it was a complete headache. It was hard to do my job properly and my new boss (previous executive director retired) was giving me increasingly menial tasks. They nickeled and dimed me to death. Lost access to my vacation benefits, had to report hours (weird for senior management) and they denied me my annual pay bump despite being rated as exceeding expectations in my performance review (currently fighting this, not for the money but the principle). By April I decided it was time to step back completely and I’m so glad I did. At times I feel guilty thinking I could be working but I forget how much I am pacing myself. If I do too much I’m shattered.
I suggest you have a chat with your MO and/or cancer support folks as well. I’ve found that despite my misgivings they have been very supportive. I’m in Canada and have also been approved for Canada Pension Plan disability (it was an astoundingly fast process) which makes it hard for my employer to question my work status. Ultimately I think I was harder to convince than anyone else about stepping back!
I am not saying it’s time for you but you may need to cut yourself some slack. 😊 If you can work but are exhausted by the end of the day… it’s not ideal in terms of looking after yourself.
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Hi all,
Scan results from MO “everything looks good”. No concerns and nothing new, the reports haven’t loaded to MyChart yet but I presume stable. (Thanks for thinking of me Emac)
ONJ update, I don’t recall who wrote it but I did see something about her immune system being too weak but no infection or other factor was mentioned.
My MO and I discussed her today and she said we just don’t know since lots of things can be big problems in a weakened, immunocompromised state but it probably wasn’t bone mets. She said brain, liver and lungs are the biggest dangers when we can’t maintain control of them.
Shannen Doherty has been quiet in Instagram, last posts I saw were about birthdays, dogs and horses, hopefully she’s just enjoying some quiet in a noisy world.
Lunch with my “work husband” and 2 other former coworkers tomorrow, seafood, yum!
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It has been many pages.
I am sad to see Moth's daughter here to give us sad news. I don't envy her. It is draining enough to sit with a loved one through a grueling illness, but then having to be the bearer of bad news takes it out of a person too. So many are hoping to hear, with faint hope, that any good news can be delivered. It is horrible to be the one to announce that no, sorry, no such hopeful tidings can be shared. Thank you to the person who brings these sad missives to those of us who wait, wonder and pray.MOLLIEFISH! I sent you a PM some time ago. It seems you didn't see it as I got no response. At least no notification came to my email. I am thinking you are heading into surgery this coming Thursday, Aug. 11th. Love and hugs and all the positive energy we can muster travels with you. You are not alone in there! Send me a PM and bring me up to speed.
As for me, I had my 5 year appointment with onc who said that the harm of tamox outweighs the slight benefit at this point and he does not suggest that I continue for another 5 years. Woo hoo! This was good news because I made the executive decision and quit 2 months ago. He shook my hand, said it had been a pleasure (sure, I am a DIFFICULT patient!) and told me to go live my life. I said thank you and I hope to never see you again - you know what I mean.It feels weird. I should feel jubilant. Frankly I didn't think I'd still be here when I was diagnosed in 2017. I sure fell down that black hole, that Fear Of Death that we all tend to come eye to eye with during a cancer fiasco. It still haunts me (the asshole in the backseat who leans over my shoulder every now and then and SCREAMS into my ear!) but things are better. Hub said on the drive home "what do you want the rest of your life to look like?" Oooh, what a huge and daunting question! I have no answer.
I wish that wishing had any power at all to help a single person. If it did, think of the massive tidal wave of healing goodwill we would all be generating here. Like a nuclear blast of healing and wholeness. I don't think hoping does a damn bit of good. But on the off chance that I am wrong, on the off chance that my energy joined with your energy joined with all the energy DOES make a hot ball of love and healing - who's to say it doesn't?- I am going to lend my heart, hope and goodwill to each and every one of us who deals with this cancer grind. So this is me, the 5 year marathoner, signing off for now. Love to you all.0 -
runor, yay glad to see you! Yes I did but this new site has so many glitches. I’ll see if I can resend. Yes surgery on Thursday, it is what it is. I am hoping for the best, I’ve been fortunate so far and our sisters here, not so much so. I’ll let everyone know when I hear. Xoxoxoox
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Runor, congrats on 5 years and being cut loose.
Doing a happy dance for you.
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Mel, how are you feeling, how is your sister so far, thinking of you from here, one of the balls of love coming from the site toward you and your family as well as our beloved Moth. Runor, I think you coined an additional term that I am stealing and using as well with you for everyone.
Runor, happy you are off meds, I dream of the day myself, unsure if I would be taken off meds totally. We will see what the future holds.
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I did finally email the property owners, have been scared of emailing too much but decided since I am paying rent, it needs to be fixed. Adv they need to add a doorknob to the back door keyless entry as I can barely open it, causes accessibility and blocks easy access to emergency exit. I also asked them to fix the door to the wee washing shed, any random person could wander in there and that is not safe for us here. It no longer closes. Said I understood if they did not want to install laundry for those of us not paying the higher rent but they could keep the laundry area open and safe or make sure the little shed is locked.
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Mara ~ my gastrointestinal issues are slowly working themselves out. What a pain it really is. My sister is in shock still , she is due to start chemo soon but apparently they want a gland out first. So I'm not sure exactly what will be first. But , I have yet to ask her about a port, She has worse veins than I. Do and I wasn't an I'v candidate💔 so I believe she will need one also. She really doesn't know what's coming her way and it breaks my heart. I'm helpless. Cancer is the worst thief Time, Health, independence, freedom, everything has changed since cancer. It seems like now with my sister, it's harder to be on the other side now because I know how damn bad it feels. I don't want that for her. Another worry is financial, she's the one who makes things happen. She runs the show. I'm afraid the people around her won't be good to help her at all. They all come running to her. My heart is broken. For sure. I don't want to watch this happen to my sister. Thank you Mara, for asking. I'm glad your kitty is ok. I appreciate you caring.
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Mae, great news on your scans!
Mel, I'm so sorry about your sister. I think it feels so much harder when it's someone we love. My husband has cancer and when he was receiving treatment it was so hard on me, I felt helpless. Sending you lots of love.
There's just too much damn cancer in the world.
My union is threatening an open-ended strike, and while I support our cause completely, I cannot be without medical insurance. Obviously. So, while I didn't ever think I would cross a picket line in my life, I may have to. I'm trying to reconcile myself to it and not feel like a terrible person. Ugh.
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Sf, your health and being able to have the insurance to pay for it is tops for you. If you have to cross, it will be hard but remove the guilt. Unless you could have paid medical costs while on strike, you are left with no choice. Anyone who knows you there should know you are dealing with ongoing cancer treatment and unless they would set up a go fund me so you can stay off work, they need to let you pass and not give a hard time. Do not feel guilty for looking after your health.
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