My Husband, My Life, My Love, My Family, My Cancer
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I am in hospice! I arrived at noon and now have a hydromorphone pump which I can press hourly. Tomorrow I should know more.
Ann, I love your teapot. I read the dog story and they are so lucky.
Good night all.
Marian
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Marianelizabeth, glad to hear you made it into hospice. I hope relief comes quickly for your pain.
Stepping back, for some humor, I have to chuckle (once again) at some of the things we look forward to and get excited about - such as starting chemo or other treatment, undergoing radiation, surgeries and biopsies, entering hospice . . . I have found myself having an emotional bond with certain treatments (such as Xeloda, which I love and which is my favorite treatment to date). Such a twisted world in which we live. Ahh, the things to which we look forward!
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JFL...would love to meet up whenever. Just let us know when you are in the area. To date, I have never had the chance to sit down with another MBC sister. I really think it would be awesome to be together. I’m currently in the mountains of GA (Jasper). Jokes on me. I thought we’d get a break from the FL heat. Nope. Pretty steamy here too.
Pots, I LOVE it. I have always wanted to do that (pottery). I think it’s beautiful.
Mel, my dogs are my children, so I can relate to how upset your friend was. Hopefully, her dog will fully recover.
Question for those taking Madam X: my memory has gotten worse since I started taking this drug. I struggle sometimes to find a simple word. Anyone else have that problem
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Ok, so here is one of my “stories”:
Had a baseball bat hit me in the mouth by mistake in fourth grade (this is not the funny part!). Lost all of my front teeth...had to wear a retainer with fake teeth for a long time.
Fast forward to college...I loved to party, so had a REALLY great time one night....had too much to drink and felt sick. Went into the bathroom and got sick...flushed the toilet...and OMG realized that I flushed my retainer and teeth too...oh boy! I sat in the stall a good long time trying to figure out what to do. Luckily, I had a spare in my room, but it had an actual retainer wire. Had a hard time explaining why I was wearing it to class!
Ok ladies....let’s hear your most embarrassing stories. Nothing makes me happier than hearing them!
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BooBoo! That gave me flashbacks to watching fellow classmates searching the trash after lunch, because they threw their retainer out in the trash after eating. So I can imagine the horror you felt. I always remember hearing the kids saying. My parents are going to be so mad. They are so expensive. I felt bad for them. I guess your parents would have said. Honey , why were you drinking? Ooopsss! I dunno mom ...... yikes poor gal! Getting hit in the mouth. I had a softball hit my nose. Lights out broken. Yuck! I’mGonna have to think on this one ! I'll be back with mine!
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Marianelizabeth~Glad you have your pro active handy dandy pump in hand. Looks like you're going to have a comfortable afternoon. Don't mind those fuzzy clouds, it's actually your pillow. Some of those meds make me loopy. Just rest all you need beautiful woman, glad your bed didn't take as long honey. ❤️❤️I am In your side table drawer making noises already. Lol I'll stop! Hugs to you strong woman...
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Just popping in to say hey to everyone. Absolutely swamped preparing for DH retirement ceremony, moving cross country (finally moving to our permanent home), and of course complete change in medical team (scary). Will try to get caught up, but just wanted to wish everyone well.
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Mel,
I know it sounded bad, but when I tell it in person, it’s hilarious! One of those moments when you realize that you are in big trouble. Called my oldest sister (who worked for a dentist), and got a new one (retainer with teeth) the following weekend. We never told my parents.
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movingsoccermom~Hello darling! Your name really does suit you huh? Wow. I always found moving to be so stressful. I hate packing and unpacking. It seems like there are always those few boxes that never get unpacked that are lingering someplace in a corner, until the next move. in hope It goes smoothly for your family! And hats off to your DH for his retirement ceremony. That's awesome! You are all such busy ladies. It's amazing.
BooBoo!~I guess I could imagine not telling my parents for sure. I still have one thing my mother knows nothing about, nor will she ever. We all have to go with something in our locked boxes. (Nothing earth shattering but just didn't know).
I've been thinking about embarrassing moments. I haven't had too many as an adult, because I'm very cautious. I remember when I was about 12 years old my mother and my sister and I were going for about an hour drive to my uncles house to swim for the day. We packed our stuff up into the car and headed out onto the highway. We are driving along and everyone is waving at us and beeping and waving and beeping, trying to get our attention. My mom is saying “oh we are so popular today, everyone is so friendly out today, such-a. Nice day, she says". So after about 15 mins of this happening. We decided to pull over to see why everyone was causing such commotion. We get out of our car and their is our Siamese cat with all four paws sets of nails dug into the roof top of the vehicle holding on for dear life. Back then the tops of the cars were a thin black roof covering and he had dug his claws into the roof and was holding on for dear life with every hair he had sticking straight out. When we pryed him off the car, he stayed in the same position for like ten minutes reliving the shock. When the police pulled over to see if we were ok, he said it happened a lot because the tops of the car got so warm, they liked to lay there. Also engines as well. He was ok. But now that we talk about about it. It's become a family joke. That poor cat lost more than a life or two that day! But we were roaring once we knew he was ok. But how stupid we felt waving to everyone. We thought we had a lot of friends lmao.
Love you ladies
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Goodmoring everyone. So one of the most embarrassing moments for me was when I was in seventh grade. I was sitting in class and the teacher was talking. I felt a sneeze coming on. I sneezed and farted at the same time. It was so loud everyone looked at me. It felt crawling under my desk.
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Simone ~ you poor dear. I’ve always hated the dreaded school gas epidemic... one never new who it was so I could imagine why you would want to crawl under your desk. But just like the books “everybody poops”. “Everybody farts”. When I was young, my sister used to tell me she’s never farted and that hers evaporated!!! Lmfao. Teach me that trick !!
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Mel and Simone,
SO funny. You two are cracking me up. Both stories just gotta make you smile
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Ladies, dh had an official interview today for the maintenance technician job. The man interviewing him said they had one other person to interview. Dh and I are hoping that other person doesn’t show up! One thing that drove me a little bonkers is that the man asked to see dh’s social security card as they are going to do a background check. Well, dh didn’t have the card so he came home to get it, but it was not in the folder I have for them. I am an organized person with a secretarial background, so it really irritated me that the card was missing! Of all times! The one necessary piece of paper! It always seems like I have every paper except the one needed! Auurrgghh!
I had dh’s passport and birth certificate and said, here, take these. He said the guy was okay with the passport which has dh’s photo and ss#.
So please continue sending your best vibes our way! Prayers, well-wishes and positive energy welcome!
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you have got it! Vibes and strength your way! Good luck and awesome he went back! Yay !!
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I sat on my mothers knitting needle as a kid. It was sticking out of my buttcheek as I ran around screaming and crying. I had my best friend over and both brothers had friends over as well. Everyone, including my mother was laughing, not because I was crying, just seeing the knitting needle sticking out. I can laugh about it now but it took me a long time to imagine what I looked like. Thank goodness no facebook or instagram in those days.
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BooBoo, as for your question about having challenges grasping for words or the wrong word or some jumbled, slightly off version comes out, I do have that as well but not limited to Xeloda only. That is one lasting side effect that I noticed never fully went away after my early stage treatment many years ago in 2006, although it is progressively worse after stage 4 diagnosis. I try to speak with intention and more focus as this happens at work and my job involves a lot of negotiating, presenting and explaining to other people, sometimes all day long. I don’t mind if someone hears me jumble a word or forget the word I am looking for. To some extent, it happens to everyone, moreso as we age. Now that I am over 40 and have a small child and hectic life, it is easier to pass off as due to aging or being a hectic mother. However, I hope that people do not notice it being a trend with me. I have lowered my personal standards on this one.
Unfortunate but necessary. It used to give me anxiety at work but now if I forget my train of thought (or the wrong word or a non-word comes out) I will simply say that I forgot my train of thought (or correct the word that came out wrong). After I said once that I forgot my train of thought, I noticed some of my colleagues started to do it as well on occasion - and the colleagues who did it were quick-paced, sharp, well-spoken people, intelligent people, both young and old. It seemed as though they felt comfortable doing it after hearing me do it. You may notice it but others most likely chalk it up to you being human (if they even notice at all). That be being said, I really dislike this side effect!0 -
My son, age about 9, farted audibly at the doctor's office.... She said, "O my gosh, I think I just heard a barking spider!"
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JFL~same for me after the heavy AC and abraxane. Can’t think the same no matter how hard I try. I think these treatments peck away at us each and every pill and every drip. My frayed mind drips and dropped along with the IV chemo. Torture If you ask me.
Santa~lmao. Sounds exactly mysons and what they would do, my DH would blame me! Lol
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Mara,
Hopefully, you can look back and laugh. I find laughter to seriously be the best medicine! I can’t believe that felt too good, huh? You are awesome!
JFL, now we must get together! You sound exactly like me, and what I went through before I stopped working. I worked for JNJ with some very smart people (doctors, scientists, etc.), and before I stopped working, I had a manager ridicule me for not being articulate. I am not a shrinking flower, but I cried when he said that. Not long after, I realized my work days were over. Anyway, hats off to you for continuing to work, and especially through the brain loss days. It is not easy, so my prayers will be with you
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Mel,
We’ve all lost a lot, but losing my memory is the most scary part. I know these drugs are taking their toll, so lately, I’ve been thinking about stopping them, and letting nature take over. I am starting to get seriously tired of these drugs that don’t heal...but I’ll consult some homeopathic friends before making a decision one way or the other. I keep reading about marijuana, and the real benefits of both the THC and CBD from the plant. Would love to know if others have felt the same and have seen results. I am not going to jump quickly...I need to know if this is real, or is MJ is a hoax
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Mara~Ouch! My goodness. I’m sorry but I need to Know if it scarred. I can’t imagine how bad that would hurt. Like serious. It sounds like you got lucky. Isn’t it odd how when we are kids we fall and get up and bounce back at it. Me I fall down the steps, lay there for twenty mins getting my wits and taking stock of my Injuries and wounds... then take a month to heal from that fall and receive a torn (fibrous) tear as my parting gift.
Being kids meant you really bounced!
BooBoo! I don’t know what I would do without my medical marijuana. It assures I relax. Which I need. It’s controversial in some places but it honestly does help me. Speak to someone Cbd especially. Has helped me.
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i LOVE my medical marijuana!!! It sometimes gives me a burst of energy!
I was slacking off so much today and then I took a dose of my medical cannabis and I was suddenly sweeping and mopping my floors, putting down a rug and cooked an experimental Filipino dinner recipe with eggplant from my CSA and egg and fish sauce (yum!).
Now I am enjoying a clean apartment and feeling so much less blah
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Booboo, I definitely can laugh about it now. I would laugh myself if it happened to someone else, provided they were not seriously injured.
Mel, it certainly was painful. More painful when my mother had to pull it out
. I never noticed any real scarring but a dimple where it was. I do think having a sense of humour about it was the best course of action though it did take a few years as I was so embarrassed. I finally just pictured what I must have looked like running around and crying and having a knitting needle coming out of my buttcheek. I will say she was more careful not to leave her knitting needles on the couch after that.
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Hi all. I need to vent my feelings. Things are mulling around in my brain and I need to get them out.
I was talking on the phone with my sister today. She is a teacher and started back to school yesterday for teacher workshop yesterday and today. Students start tomorrow. This not working, retiring thing is really hitting home for me now. I stopped work early June on Medical Leave. Kind of felt like a vacation up to now. Now fall is coming, my sister went back to work after her summer vacation, and my Medical Leave is ending Sept 4 and I will be on LTD with the company with plans of applying for SSD. After her conversation today, I have been thinking "Where do I go from here? What do I do now". I am a list person so out came the pen and paper. I am realizing now that I will be "retired". What do I want to do in retirement? I am 48 years old. Before this shitty cancer came I was working full time and never really thought about "I want to do _____ when I retire". So what do I want to do? What do I FEEL like doing? What can I AFFORD to do on SSD payments and small pension?
Brain is cluttered right now with questions. I know I have to figure this out myself. You all don't live near me, or know my options. I just feel so confused, frustrated, scared of the future, angry that I have cancer, tired, tired of being tired, tired of feeling sick, angry I cannot have my life back the way it was.
Thank you for being here and truly understanding like no one else can.
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Freunlins,
I have read some incredible things about MM. I am seriously impressed. But I don't like the THC feeling...I know, I know. I can always get the CBD version. But from what I've read, the MM plant has some incredible proactive benefits. So I'm trying different versions of both THC and CBD to find my right balance. Anyone have a good combo, please let me know.
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Hi Candy,
I have a few friends that volunteer part time. One works at a no kill center helping take care of dogs. Another one volunteers helping older people (driving them to appointments and errands, etc). Just a thought.
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My usual goto if I cannot sleep is CBD gummies. No THC. I don't use it all the time but when I take this, sleep is quick to come and I stay asleep. I've never tried it with pain, but my SIL says it works for her pain.
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candy~I have been disabled since 2009 from a tubing accident. I was never able to get my chance to fill any of those lines in because of financial stressors or my own chronic pain. Then pain turned into frustration and sadness. Then along cane cancer. I’ve realized for myself I’m grateful that when I’m tired I can just nap, if I want to meet a best friend for lunch I can. i do get bored but I also believe resting is paramount for healing. I do miss working sometimes. More of feeling like contributing when my DH works so hard. But it passes. I love to read and I Am crazy about tv. I hope you have an easy time of getting adjusted and how great that you are going the way you are with the disability route. I did the same thing. Short term to long term, then approval. You deserve to be good to yourself darling. I always think when I was not sick, I worked my tail off. That’s gotta mean something. Hugs sweet woman!
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I was approved for long term disability mostly based on my dx once I went Stage IV. My doctors and social workers filled out all the paperwork for me. I only needed to drop it off.
I used to share a home with my mother that we both bought. Once she passed away, I sold it and got a tiny apartment which is nice. Got a tiny treadmill and walk while watching youtube or regular TV. Never particularly enjoyed outdoor walking on the whole. I am a homebody, always have been so I don't go out much unless I need groceries or have an appt. Hospice services also gave me a volunteer that I go out with on Fridays which is nice. We treat each other to coffee and donuts and we may do some errands but mostly just walk around. Good to have the social with that. I also am quite frugal so trying to stretch my income as far as it will go.
Just to be clear, I am not in hospice myself yet, but they offer me some services which have been beneficial in handling all my changes this year and my own grief over my mom.
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candy, stopping work is hard. I've been on LTD since January 2018. It took a while for my brain to not go into work mode on Sunday night rabbiting around about what I had to do during the week. I had to give myself permission to stop “working", to stop feeling like I was weak or a quitter for not working. Days kinds of felt empty at first, like I was floating.
Some ideas to think about....what gives you meaning...what in life fills your spirit...family, music, nature, travel, reading, art, friends? What gives you a purpose....we always seem to say “work" as the only answer but in reality is it the only thing that we have? How important is it to you to take better care of yourself? What will you do to do that?
I try to focus my energy every day on doing the things that matter to me, knowing that some days I am too fatigued to do much of anything. It’s a new way of living and of being that you’re in now. Truthfully, I would go back to work at the drop of a hat if only I could....but I can’t. Not if I want to have any QOL.
Money is short for us too. We have several organizations here that offer programming/services to people living with cancer for free. If you see something you would like to take or learn, like pottery, you may be able to ask for a discount given your status. By the way, doing pottery at a community studio has saved me...it gives me a place to go to on a regular basis, gets me out with other people, challenges me and let’s me play
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