My Husband, My Life, My Love, My Family, My Cancer
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Well, finally finished several calls to get everything moved around for my MRI reschedule which is no July 26th. I will be more careful to adjust appointments as soon as I notice they are not when the cancer clinic is open to access and deaccess my port. I will be able to get the port accessed before the appointment on the 26th and then de access it on the next day since the MRI is now at 510 pm.
I was given shit about it by the RO office since results app't had to change as well. They were ticked that this is 7 months after last MRI. I said I could not attend the first app't and MRI had nothing until July. I told them I have no symptoms and am not concerned about the month wait. I also said not to give me a hard time about it. I am in charge of my care and if I need a change, I will make one.
I also got shit from the MRI people for cancelling the appointment and rebooking for the same reason. Again, I told them that I have no symptoms and am unable to attend the June appointment. They also always give me a hard time because when the systems just books an appointment in the middle of the night or early morning, I have always had to reschedule. I tell my MO and RO office to note this in my chart but it is always a problem. I was even more firm about not giving me a hard time because I am the one having to also coordinate getting a port access as well.
I am fed up with being given shit about what has been the same issue for years of scans now. I am done with it. I stay polite but will not be blamed for the issue. I don't see why they cannot have a nurse that works in that area to access my vein or port. My echo requires contrast and there is a person there who does the IV and injects the contrast for that. Guess I am feeling frustrated about it all.
I suppose I need to be grateful that the only thing left will be the cancer clinic with the port access appointments to call me. The only people who were not frustrated with me was my MO side of things.
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Kittykat- So sorry for the pneumonia diagnosis. Praying the antibiotics take care of it. Are you in ICU? How is your breathing?
mara- Good grief. It should be no skin off their noses if you need to reschedule your appointments. What is it to them? I have Palliative Care and THEY had to reschedule last time. Something on their end. No biggie. So what is the big deal if you had to reschedule your MRI--- as long as you are ok with the later appointment.
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Exactly. The MRI/CT place ALWAYS get irritable when I tell them I need daytime appointments because the cancer clinic accesses my ports for them. I take calling the cancer clinic off their hands and do it myself. I am going to start being firm and polite but standing up for myself more when people get frustrated sounding to me about changing my appointments. I personally like the July appointment because this puts both scans in the same month which is better for me.
Edited to add that I should have taken notice of the time earlier on of the early morning so I could adjust sooner. I will keep that in mind for the future.
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Yeah, be polite but firm that you need to reschedule, whatever the reason.
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Totally agree Candy. We already have enough we need to juggle in our lives and as cancer patients and while I can empathize with a busy place during the pandemic, the people working there should take it easy on the patient as well. You are exactly right. I am firm when it comes to medications I am willing or not willing to take, food that I like and treatment and app't decisions. Thanks again.
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Kittykat, so sorry about the pneumonia too, will send healing thoughts your way and hoping life will give you a break soon.
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Mara,
It must be 'stick up for yourself day' (I sometimes call it PITA day, because that's what I feel like - Lol). I've been frustrated with the pharmacy where I get my scrip refilled - it always takes follow up and is frequently a runaround, but it's a big cost difference. They tell me I can call in my special order scrip a week in advance, then tell me it could take 7-10 business days for it to come in...do the math...that's a problem. It always works out (with a number of PITA calls from me), so I haven't pressed the bad math issue. Today, someone was being too lazy to check the system to verify the order had actually been placed and that I'd get my scrip on time (clearly indicating he thought I was a PITA) and that was it for me. I politely, but firmly, told them I was very frustrated by their conflicting guidance and having to call multiple times every month, just to get my scrip. It took about 20 minutes of conversation - with the right management level - and they have decided to order two and put one on the shelf for me so we're not playing it down to the wire every month.
The (truly) best part was, that when I got the callback with status, my scrip had actually arrived on site and was ready for pick up! 🤦 Now, all I need is a good scan this month so I can stay on this Tx awhile. 🙂
Edited because one of my emoticons showed up completely different. No idea why.
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Kittykat- so sorry you're stuck in the hospital and feeling poorly. That next round of antibiotics needs to kick butt.
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KittyKat,
Sending healing prayers your way. I know how much you hate being in hospital, so I’m praying the next bag of antibiotics kicks the pneumonia to the curb. Big hugs from FL.
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Mara,
You go girl! There is NO WAY that anyone should give you crap about anything related to this disease. I hope you report them to someone above them. Unacceptable. They should walk a mile in your shoes...they probably couldn’t hack it. I am so proud of you. Keep up your self defense and never let someone in any capacity try to treat you with anything but respect and with compassion.
Wooweeee...that hits my hot button!!0 -
Today was busy. I got up early and went to dollar store when they opened. Swung by and filled gas tank in vehicle. Came home and put away purchases. Made out a couple of bills. Did a load of laundry. By 1pm I was exhausted and wished it was bedtime so I could just lie under the covers and sleep. I fought a nap, thinking it would make sleeping tonight harder. Now, watching news and counting down the time till bedtime.
Then I had almost a panicked feeling and I thought "I do not want to die". Sometimes I do that. Just a panicked feeling of "I am going to die".
Do any of you do that?
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I'm having it now Candy, especially after the doc came and asked me my wishes if I become unconscious and do I want to be kept on life support or let go. My kids already know so I can't understand the need for him to ask that 5 mins after presenting at the ER, he made me feel as though I was on death's door and would be leaving here in a box.
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Kittykat- Oh I am sorry. How are you doing now? I just meant I get that feeling sometimes out of the blue. It just hits me at times. Like "I have cancer". Just hits me like a gut punch.
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kittykat - oh I'm sorry.
But they ask all the time here - or they're supposed to - because by law here your wishes in that moment override what family says (though that gets trickier later on). You can also verbally override your previous signed wishes. & I think assumption is anyone presenting in an ER is presumed at risk of a heart or breathing problem at any time .. so they ask. It's an awful convo to have each time. I was hospitalized a couple times during chemo in 2018 and it was scary to be asked.
Are your antibiotics starting to work? Do you feel any better?
candy - oh man, yeah, it's like a gut punch. Literally takes my breath away.
I cleaned up a long overdue chore - one of our kitchen corner cupboards has a lazy susan where we keep all our baking supplies. A few months ago the susan broke and we hauled eveyrthing out of there into big rubbermaid bins for storage while dh sorted out how to fix it. Of course the lazy susan style that was in there is not made any more and he needed to figure out a solution so that took time and then for months we got used to having all our baking supplies in big bins in the kitchen... but he did his part & it's been fixed for months, so finally I sorted through everything, threw out a bunch of old things and put it all back. Then I wanted to actually *use* the baking cupboard so I made blueberry muffins with streusel topping. That's my reward now
Well, that and a super neat organized cupboard lol! 0 -
Candy, I almost never think about death in that way, I’m fairly certain I’ll die before 50 (I’m 46 now) and I’ve accepted that pretty well. But, I had moments last year when I still couldn’t eat, where I thought “I can’t live like this”, I was barely existing and hope was so hard to find, so so hard. Having come out the other side of that, my mentality changed somewhat and I can’t think of much worse than that, so I just don’t.
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Moth, it's probably the same here but at that point in time my main goal was to be able to breathe, which I'm still struggling with even with oxygen 24/7 if I do anything more than walk to the bathroom. I'm so not ready to throw in the towel though, I will get on top of this.
I used to love baking but I've given it away since I started living alone.
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thinking of all you ladies tonight. Wishing we weren’t stuck in cancer land. I am sorry to each and every one of you that you have to feel the way I feel about having cancer and slipping into the worlds that comes with it.
I’m not doing well without my Deeohgee , I cry daily and can’t seem to get away from it. My daughter is also struggling greatly. We don’t know what to do. Tomorrow is two months. It feels like forever. I have never loved an animal this way before. My soul is wrecked in a way I can’t explain. I know it’s not a person. But sometimes it sure does feel like it was my best friend. I miss every thing about him. Everything. 12.5 years of being so lucky to own that precious dog. I’m trying to hold onto that.
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Candy ~ I have days like that. But others not so much. Some days I feel like I'll live another ten years or more.but then a newache or pain will appear and I think long and hard. I get so sad. My precious kids. I love them dearly. I want to see my grand kids.
Kitty~ that is odd the er doc would say something like that when you just arrived. People suck sometimes no bed side manners. Jerk. Hugging you
Waving to Moth. Good to see you! hello Rosie. Emac, goldens. Dodgersgirl, SeeQ Tanya Mara BooBoo lee & our Mae!!!
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SeeQ and Laurie, thank you for the kind words. I will just keep standing up for myself and making sure notes are put in properly by the doctors for my scans. I was told by the cancer clinic that I should not have to get my port accessed with the cancer clinic but with a nurse in the MRI/CT department. Hopefully everything is fine with that.
I am beyond saddened for a poor Muslim family in my own city of London. Yesterday while they were on an evening stroll, they waited on the sidewalk for the light to change so they could cross the road. A truck deliberately sped toward them and hit all of them. The driver was caught and arrested. He is charged with first degree murder on four counts and a little boy is still in hospital. That driver wiped out his whole family. I usually don't particularly cry but this made me feel so bad for them and also the world as more of this happens and to different racial groups as well. I cried a lot during that story. Domestic terrorism is what this was and I am saddened to see it in my city.
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Mara, what an awful, awful story. It is incredible the things people do. So sad.
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Candy, sorry you're having that kind of day. I haven't felt like that, yet. I keep thinking one day, it's going to catch me and overwhelm me, but it hasn't yet. I don't really know why.
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Mara, that's is so sad, I can't understand why people hate what they don't understand. That poor little boy is forever without his family now because of prejudice and ignorance, it breaks my heart.
I'm actually starting to feel better, I'm off the oxygen now, with any luck I'll be out of here sooner than I thought.
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Sorry I skipped out on the conversation. I went to bed early last night--8:30. Didn't go right to sleep, but just felt good to be in bed under a light, cool sheet and stretched out.
Kittykat- Good to hear you are off oxygen and feeling some better. Scary for ya. Yes, here in the U.S. they would ask about your "Advanced Directives"-- living will and what you want done if you code. Especially if you were having breathing difficulities. They want to know what to do if you need a ventilator.
Moth- I love organization so I would want the baking goods organized. But, I do not cook/bake too much so that is not a big deal for me. The blueberry muffins sounds delish.
Mel- I hate to hear you are having such a hard time with losing your dear dog. I have lost several pets in the past, but, also, I did not have the cancer then. I have a cat now that if I lost him I would be beside myself. I think the cancer adds a layer to us that grief of any kind is felt harder. Take for instance Mara's story.
There has been a story in the news here about a 6 year old boy killed in a road rage incident. He was in his car seat, going to kindergarten, and a person shot thru the car and hit him in the back. He bled to death in his mom's arms. God. I cannot take those stories anymore. He had his whole life ahead of him. At least I have lived 50 years.
The thing about the "panic attack" of "I am going to die"--- I do not feel that all the time. Just comes on out of the blue. I know all of us humans are going to die at some point, but with this cancer we KNOW and are aware of it more. Just hits me sometimes.
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Dear Mel, I'm sorry you're having so hard a time adjusting to losing your darling pepper, hopefully time will heal your heart. Just know that there are a lot of people here holding you in their hearts until you start to heal.
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Mel,
I echo what Kitty said. I am hoping that each day brings peace and the ability to remember all of the good times with him without pain. I am still not over losing my Huey Lewis either, but I was told early on that if I owned animals I had to accept their death as part of the circle of life. I know we only have so many years with them, and I haven’t tried to replace him this time like I have after losing my other dogs. I just can’t. My heart can’t take it. So please know I very much understand your pain, and hope that very soon your heart will mend
Gentle hugs.
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Candy,, that poor child. Just trying to get somewhere and having someone shoot in the car. There is a fair bit of gun violence in Toronto but we are seeing more in London as well. I think people have gotten more nutty than they were before the covid and lockdowns. Anyone with hate in their heart for whatever they hate had more time to fester with all the groups on social media and this may mean more attacks like this. I know this is not unique and yes, stuff did happen before the pandemic ot members of minority groups of many kinds but it does not feel any better. Still upset today. I donated to a fund being collected for the boy who survived. He does have other family, but nice to see community coming together for him.
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Friends - I was away for a couple days - had to make a quick trip to our daughter's so we could finalize some things on the house we are building. It will be done in late October early November and we will be 5 minutes from our kids. Can't wait for hubs to retire! Missed our grandson's baseball tournament, which his team won and our granddaughter's dance recital, both this Saturday. If my hubs had not been recovering from his cardiac ablation, we probably would have been able to go. I can't wait to be able to go to all those things when we move. 2 quick days away and so much happens in Mel's living room. Some good, some not so good, just like life. Mara - I loved your rants. There is no excuse for a patient to have to endure that kind of attitude from health care providers. Wish I could take a 2x4 and smack 'em upside the head. But that would only put me before a judge and I have enough other stuff to deal with. Don't we all!!!! But I knew it was serious when you started swearing 😂. Can't remember your doing that before. I say keep it up. It's very therapeutic.
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Goldens- Welcome back to the Living Room.
Today I had my Palliative Care meeting-- per Zoom. Haven't met since March 25--had appt before now but was in the hospital and had to cancel. Anywho, we got caught up on my issues. We are to meet up again 1st week of July, after my next scans and MO appt. We will then know if continued progression or not, and change of treatment or not, and what treatment I will be on with what side effects. I did mention that "panicky, I am going to die, I have Stage 4 cancer" feeling I got yesterday and have sometimes. The doctor didn't seem concerned or that I was weird. She nodded and said "Yes, that is grief". So I guess she has heard that before from her patients and that it is ok to feel that way.
I met with her-the doctor, and usually with a social worker. But today the social worker wasn't there. She said they are having some staffing changes. That the social worker is moving to Denver, and they are hiring someone else. So the next couple of months it will be me and the doc. Then later the doc and a new social worker. Happy the doc is not changing and I have some continuity of care.
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Goldens, glad you are back. I actually swear like a trucker in real life, usually when talking about stupid things I have heard on social media. I am good about not swearing in front of people who may frustrate me like on the phone, or companies etc. I worked on the phone so I am very good at the polite but firm voice that is needed and don't take it out on the person on the phone, they are just doing their job.
Mel, I am sorry it is still raw for you and your family about Deeoghee. It sometimes takes a long time to not feel ripped up about a loss of family. Losing my mother was the worst pain I have been through and I imagine your pain being similar. I don't even remember feeling ripped apart when my dad died in 90 but I was still a teenager and don't think I absorbed it the same way. I was sad but not like that.
There was a vigil with thousands of people here in London with the Mayor, Ontario premier and other ministers and the prime minister speaking among others. It was inspiring to see such a turnout but we need to try to stop the hate before it blows up like this.
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thank you Mara. I’m sorry about what happened to that poor family , so mean and rotten to the core. I am sending thoughts to them and hoping they prosecute to the fullest.
We’re finally hearing that the trial is about to begin with the murder of a girl my son used to date early in high school . They chose the jury and it begins tomorrow. That poor mother has to sit and hear of details of her daughter being beaten to death. It’s big news in our little town. This sweet girl was beautiful and kind. It’s so wrong. 20 when she was killed. My son just 24 they are in the same grade for school. So it’s been three years waiting for this to finally come to be. Accountability is knocking finally. I’m hoping they give him What they think is right.. my poor son is bothered by it. He treated her so good. It’s a shame. So violent...
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