My Husband, My Life, My Love, My Family, My Cancer
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Candy, I have a similar feeling, a warm house, plenty of food. Though I have a low income being on disability, if I needed it, I have money from selling my condo and a trust account as well. I don't need to use the food bank and I am good at making extra money online through surveys, searches and mobile games. I do miss making more money from working but grateful to be out of major debt. I treat my budget as if I have nothing extra in the bank. I am grateful to be frugal with food as well. Surveys and such allow me to pay nothing out of pocket. I also have a reasonably priced apartment that is cheap compared to other places in the city.
Not much to report today, laundry, darning a pair of socks again and decided to make up a box of stuffing, add some rice and beans as well. Keep them in a container and it could go for a few days. I get lazy with dinner and wind up microwaving hash browns or eating peanut butter which not very good for me as meals. Figure I could take a spoonful of that and serve with beefless ground, ground sausage or whatever meat I am working with or even just add some cheese and something to bind it and different seasonings. This time, made the box of stuffing mixed with canned turkey, shared a bit with cats and added the rest for me with the can juice as well. Made the stuffing more moist, tastes good. Did not add rice or cheese, will save that for future meals. I will say I sampled just the stuffing and turkey, it was very good.
I have also been looking up some homemade ice melt as well. Apparently, you can use table salt, baking soda and kitty litter to make an ice melt with instant traction. I just want to make a path for myself as we are in the freeze thaw cycle now so I can take 3 weeks worth of garbage out. I will see about that. The salt and baking soda both have melting properties while the cat litter provides the traction. We will see, I just get all these ideas.
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Hi everyone. I am always a little hesitant to post but these recent posts by all of you have really resonated with me. My introversion and social anxiety seem to carry over into even the virtual realm. And being a fairly recent MBC diagnosis, I don’t feel like I have much to offer, and I don’t want to always be writing about how scared I am sometimes. But 6 months in, and after reading many of your posts, I feel much stronger and much more capable of handling whatever comes my way down the road. I too left a job that I found very fulfilling. I was a teaching assistant working with children with special needs. They are beautiful children. I still feel guilt at walking away. But so much has gone on with this diagnosis (radiation to bone Mets, treatments, etc) that I could not be reliable enough. I do miss and grieve my old life too. And I certainly agree that gratitude and grief can co-exist. I know I am blessed with a wonderful family and some dear friends who mostly live close by. So I concentrate on them. I watch one of my grandsons a few times a week, although my recent hip surgery (3 screws and bone cement) has impacted that. I am still healing (and limping). I have this quote up in my house “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Pretty sure the MBC storm is here for a while, so I will dance in the rain.
Anyway, just want to say how much I admire each and every one of you, and I hope I can gain a fraction of the wisdom you possess. Sometimes I still feel like I’m flailing around, learning to accept where I’m at, and being at peace with it. Thank you all so much.
Nanc
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You should read my posts if you are worried about nothing to offer. Most often I am talking about what I like to eat, laundry, surveys and games for extra money or mundane things. Even if no one mentions what I have said, people do read it and miss it while its gone. Please know we are supportive, in your pocket sending healing thoughts all the time and we want to hear from you, even if it was to say, just went shopping or something like I have scans. Nothing is boring here. I do miss my activity level and energy from before. I do not miss my old job, I hated it. Getting yelled at on the phone because someone did not pay their bill was annoying, I do not miss my hair, some of which was permanently lost due to whole brain radiation. I like my blonde short wigs with darker roots. Looks better than my dark brown hair. Never have a bad hair day either. I do get depressive at times but not enough that I need therapy, at least in my own opinion. I am waiting until the sidewalks clear and will resume walking most days. Even if my face is always red due to being fair, it feels good and I want some long distance stuff in there. I miss my balance even though it was never great but a cane sure helps a lot.
I tend to have verbal diarrhea even in my posts but in short, post as much or little as you are comfortable with and don't feel that what you say is not important, you are important in this group.
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I seem to have lost my mental grip in the last few days - not sure why but oh my god the anxiety has ratcheted up something fierce. I have MO tomorrow and will be talking about that and its been a tough month with illness and this f'ing hip problem which means I don't sleep all that great (though Ive progressed to being able to roll over, yay!). Maybe its fear that its a labral tear and lll need another surgery, I know my last patch of stable cancer is in that hip too and I don't know. Its just worry, Ive had clean scans twice since this popped up - logically it should be ok. Usually Im good about 'staying in the now' and not projecting forward, but when your ability to walk is compromised, it gets tough. This feels like three years ago newly diagnosed and scared and unable to walk.
I really need to talk to the GP about getting some valium or something at home for 'emergency use'. I feel both wired AND exhausted. Also, its March which means awful weather and the light isn't right and it makes me unhappy.
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Sondra, I am sorry for the lack of sleep which I am sure is one of the causes of the anxiety as well as worrying about the next scan showing possible need of more surgery. Try as we might, there are times the worry takes us back to the fear in the beginning. I hope they can address the pain so you can walk as I know you like to do which will help. I am also sure they can give some temporary valium to allow relaxation in your mind and help with sleep. In your pocket for sure.
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Sondra F
I know about the anxiety and wow is it draining. I think I catastrophize new pain bc I know what it could be. I'm sorry you're feeling this way today and have been having trouble sleeping. Hopefully it will be nothing especially since you've been having stable scans. I have anxiety medicine (extra stash) that was prescribed for the MRI machine bc I can't take that claustrophobic noise tube! Feel better pocket duty on board.
Tanya
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Pocket duty for all who need it.
Nothing much going here. Laundry, surveys, mobile games and so on for extra cash. Hoping to convince myself for an hour on the treadmill, we will see. Not sure what is for breakfast, will likely be a savoury oatmeal mixed with cheese, beans and spinach. Will make a smaller amount as the oatmeal fills me up too much. Not going to mix it with the stuffing mix as I am not sure the two would go together. Only other thing is a large garbage day. Have not taken anything out for a month so will have 3 bags worth. Just have to make sure front door is still clear of snow so will check and melt if needed. I will also be reorganizing kitchen storage, putting some stuff in the oven, moved big pan that goes unused to top of cabinets. No concern about the oven, never use it except for the burners and use breville if oven is needed.
Edited to add, I put the winter stuff like scarves, hats and mits in a pillow case to avoid dust, cat fur and the like, just had an idea to use as an extra pillow. Put it in the chair where my cats sit instead, looks better there.
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you’re such a creative busy bee! Re organizing your kitchen ?? Wow you go girl. I’m lucky to tie my shoes. Always enjoy you! Hugs my friend
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Mel, I don't want to look like a hoarder and it is hard not to in such a small space. My bed is on risers so I keep tons of stuff under there. I do like doing the organizing. I have to figure out how to organize the other side of the counter, might make some skinny boxes to hold specific things. The right hand side looks fine,, took a container to hold my spice grinder, magic bullet and bigger chopper. On the left side, I held on to the drink holder I got from McD's to hold my cup measures. That seems to work well. If I need space whilst making stuff, use my huge cutting board. My kitchen comes around the corner into the living room as the microwave and breville oven is out here.
I will say, I did make half a serving of steel cut oats and mixed a couple spoonfuls of the stuffing I made the other day, 1/4 cup beans, cheese and sesoned with garlic and parm along with steak seasoning, salt and wheat bran sprinkled. Mayo to bind. It was super filling and delicious. Now I am thinking of getting brown sugar and syrup to make desserts as from the oatmeal.
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already on to her next conquest. Wish I had your energy.
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I never throw up never, two days in a row now I’ve thrown up. I don’t know if it’s a bug or if it’s the new medicine for pain I’m being changed to. Now I threw up so violently that now my ribs are killing me. We should get paid for being a cancer patient weekly. This is hard work. Ugh!!!
Love to all
Wake up lurkers!
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Mel, I am sorry you got sick, that hurts when it is so violent, hope it stops soon.
I had to call an ambulance for myself. I am so embarrassed. I went to take out garbage, I was fine as I salted the steps and sidewalk but when I tossed the garbage bag, I fell into the snowbank due to ice. I scooched my butt up toward the steps but I cannot get up on my own. I called for help and my nice neighbour from upstairs came out to try and help. He and the house next door lady were unable to get me up due to slippery walk so I asked him to call 911. There were 3 people in the ambulance so one person braced my feet in front and two others hoisted me up. I left the property manager a sternly worded letter about it being the second time I have fallen and that another neighbour fell too.
I did called DB and he is starting to wonder about getting a lawyer involved since my efforts to improve the sidewalk and building are not sufficient. My bum is numb as I was sitting in snow so will change pants. My other concern is relearning how to get up when I fall, it is dangerous for me to be out if I cannot get up after a fall. Have to ask MO next time I see her if there is PT or something I can get to help. Another thing is losing weight in order to help get up.
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Oh mara - that sounds awful! But you didn't hurt anything major, right? PT sounds like a good idea, there is only so much you can do on your own to keep fit, and working with the right kind (one of the more occupational ones Im guessing?) to help you with some exercises to get strength and also learn how to move with any limitations sounds like a great idea.
Mel - thats no fun either! I hope you can get that sorted out - are you able to drop out the new painkiller for the time being? I dont like it when they give you something to counteract something else, like lanzoprazole gives me Big D and depletes my vitamins and minerals, but apparently I need it to protect my stomach from some ibuprofen?! The cure is worse than the problem!
Thanks for the kind words ladies - I spoke to MO and we have a Plan, but hip really IS coming along its just at that point where you aren't fully sure
. Unfortunately yesterday was a day at the hospital where NOTHING went right (long wait for bloods, scheduling put me on the wrong day so I didnt have an appointment and had to wait extra, elevator broken to third floor day room (thankfully I can go up stairs ok), bloods delayed and delayed which delayed Xgeva injection and I gave up at the pharmacy leg). They are swapping over (finally!) to an Epic system in two weeks and I think all the IT has gone haywire. Ill go back in Thursday to pick up drugs because I just couldnt deal with being stuck there for a fifth hour!0 -
Mel - sure hope things get better. Puking is no fun. Did you take your pain meds with some food? Sometimes that really helps.
Mara - that fall sounds awful. Shame on your apartment folks for not doing proper maintenance 🤬🤬.
Sondra - what a screwed up day. I’m lucky I’ve never had that problem. Yes, I’ve run into some occasional delays but nothing of any magnitude. Our local hospital systems bombard you with texts and notes in our patient portals reminding us of appointments. And yes, a switch to Epic causes all sorts of mayhem. I remember when my husband’s office and the hospital he worked at made the switch. It was a nightmare for everyone.
Had my bone bx yesterday. Did not achieve twilight sleep despite lots of versed and fentanyl. Doc used lidocaine and a different type of numbing med for deep near the bone but I still felt the drill as it did it’s job. Worse part was having to be on my stomach. My shoulder was not happy. Had more pain from positioning than procedure. Results in 48 hours.
Sending caring thoughts to the rest of my sisters here. Hugs to all🤗🤗🤗🤗🤗🤗
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Mel- Ugh hope the vomiting subsides quickly, it definitely can be so violent! Yea a toss up as to which is the culprit, all so annoying. Yes hard work for sure, no amount of money to compensate all our suffering! Can you imagine that price tag lol Hope today is a better day for you.
Mara- Geez what an ordeal you had , so glad you were not seriously injured. What will it take for these property mangers to do their jobs!!! Just ridiculous that this is a frequent recurrence and nothing gets done. Hope your not too sore today, rest up.
sondraf - Glad your hip is showing improvement! Yea we tend to be cautious optimistic , understandable. Hope it continues to go in the right direction. Wow that is one looong day, five hours..crazy. Hopefully Thursday will be a little more organized as they transition to epic,fingers crossed.
Been quiet here, was a beautiful day yesterday so I have been doing spring clean up in my yard. Daffodils are blooming and daylight savings is Sunday, definitely looking forward to that. CT next week not looking forward to that lol, fingers crossed for stable.
Hi to all and sending positve vibes for a good day today!
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goldensrbest. Missed you in my last post...Well glad that is over with,sorry that it was rough on you. Hope your not feeling too awful today. Prayers for good results. Mel was right definitely a full time job for all here!
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Oh my Mara. Yeah I think PT and OT would be good for you. Build up your strength, learn ways of getting yourself up safely after a fall, etc. I am doing PT to strengthen the muscles around my hip. I need a hip replacement, but I am not doing that. So at least I can build up my leg muscles.
Mel- Yeah, try eating with the pain pills. To coat your stomach. Even just a cracker or 2. The side effects of the meds that are to help us are as bad as the problem itself. My nausea meds cause constipation and drowsiness. So, be nauseated,,, or take the nausea meds and be drowsy and constipated.
Goldens- Prayers for good results.
I am getting Port out tomorrow. I will post later about it. I will probably just sleep after I get home.
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Sondra, luckily nothing was damaged except my pride. I fell onto the snowbank after tossing my trash. My butt was numb for a long time as I was sitting in snow and the like.
I am doing more activity today starting with Leslie Sansone marching workout on a yoga mat. Taking water every 500 steps as I still hate walking for a long time unless outside. No set amount of steps, just want to get through the workout and just doing the marching step. Figure that will help some. Beautiful and sunny here but I will stay in as during the day, no one around. We will see how it all goes. Hope I did not wreck my leggings dragging my butt along the pavement, we will see.
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Mel, I hope today finds you feeling better than you have been as well. Candy, I will ask about PT at my next MO appointment. I don't have a PCP and cannot find one taking patients to get a referral. I will see what she says. For now, following workouts by Leslie Sansone with short breaks for water every steps. Resting right now as it is tiring but will be picking up later throughout the day.
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Mara, that must have been scary as well as embarrassing, I've fallen and had to be helped up, although luckily for me we don't get snow here. I've found that doing squats, lunges and even sit to stand exercises strengthened my quad muscles and now I can get up on my own from the floor, you tube have plenty of leg strengthening routines as well.
Mel, I hope you've sorted out what made you so ill, I hope it's something as simple as taking the new meds with food.
Sondra, what a dreadful day you had, I don't blame you for ditching the pharmacy wait for another day, hopefully the new system will work better. Good to hear your hip is on the mend.
Goldens I hope you get good results from your biopsy.
Candy, I hope your portremoval goes smoothly, you're taking yours out and I'm just starting to use mine again after 12 months.
I had my first infusion, it went OK but the steroids have me still up at 2 in the morning watching reruns of Escape to the country and scrolling through BCO, instagram, Twitter and FB while eating Cadbury Roses Chocolates.
Hi and in the pockets of anyone I've missed, take care everyone ❤️ Cathie.
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Sheesh, you all have been through it lately!
Mel, I'm SO sorry your vomiting has been so violent. Barf is bad enough without being violent.
Mara!!! I'm just mad! Tell us where your managers live and we will all show up and give them HELL! The problem with "somebody needs to do something, is that nobody knows who 'somebody' is, right?
Sondra, I'm sorry you had such a crazy day. I hear you about the positioning, though. It hurts to have to raise my arms above my head for a CT scan, and that one is quick. Being on my stomach with my arms above my head is so much harder.
Hi to cookie, goldens, candy, kittykat and all the rest. Kittykat, I hope you can get some decent rest today. I forgot what your infusion was. Zometa? Or was it IV chemo?
I saw my MO yesterday. Cried for the first time in front of her and the fellow who saw me. Told them I'm just tired of thinking about cancer, tired of the pain, tired of all the symptoms that might mean more mets. They were both really sweet and supportive. MO asked if I wanted to go to 6-month intervals for my scans to help with the "scanxiety" but I told her it was actually comforting to know every three months that I'm "stable."
She wants me to see an ortho surgeon (not the onco ortho) and a neurologist for whatever is going on with my neck at C2. Then she referred me to an neuro surgeon for the headaches. She also recommended I see a PT for strengthening. I didn't tell her, but the other day I knelt down in the driveway to pull a weed and I almost couldn't get back up. I didn't have my cane and there was nothing to grab onto.
Can I please get off this train? The ride won't stop and even when it slows down, the exits are blocked.
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I n your pocket Kitty, mel and sunshine as well.
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My older brother was nice enough to drop off some reese pieces cookies which are good so I appreciate that.
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Yikes Mara, that sounds scary. I'm glad you weren't hurt. It's baffling to me that your landlord/manager hasn't been called to the carpet already for their blatant negligence maintaining your building.
Mel, hope you are doing better. I hate nausea from medications. Oxycodone is one I can't take because I get projectile vomiting fits from it. Does peppermint tea or anything like that help you?
In pockets for Goldens and KittyKat as you wait for results and start chemo.
SondraF that sounds like a really frustrating day. When our hospital switched to Epic chaos ensued. It's a huge headache and when it's down it's hard to function. It's miserable as an employee and a patient. I feel like as patients it feels worse because we are already dealing with a lot.
Not much going on. I have labs/xgeva/faslodex on Thursday and tried to get a little bit of yard work done today before the rain hits this weekend. It's still too cold for me to tolerate being out very long but I got a portion of trellis put back up where the racoons had knocked it down. They come up out of the creek area and crawl down the fence using it as a ladder to get in to the yard at night. At the grocery store I ran into my previous MO who retired two years ago. It was good to see her. She was so good and really easy to talk to. My MO now is very competent but I really miss working with my previous MO. Hope everyone else in the "living room" is doing well.
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the vomiting stopped but I can’t tAke those meds too successfully. They make me sick.
Mara 😘~ you poor girl. I’m so sorry you fell. My goodness. Shame on those idiot management of that complex. Can Any one say lawsuit? I’m just glad you’re ok. Geeze
I’m having a heck of a time with this medicine thing. Who knew it could be so difficult, not that anything to do with cancer is by any means easy. I had dinner with my son and daughter tonight just us three, I sat and watched them talk absorbing every movement they made and memorizing their smiles and laughter. Looking at them while inside my heart is beating and breaking with total love for these two people. My two people. I want to remember every. Little thing I can. I always get scared around scan time that my time is up and I will be forced to leave those two most important people in my world The love I feel for my children I cannot express and I don’t want to leave them. So I fight on. Hoping to even be allowed to continue fighting. The love runs so deep with your children. Words cannot express what I would do for them. They are my babies. Even though they are 26 and 27. I don’t want to leave them. No body loves you like your mother. No one ever will. Cancer is hard. Evil, cruel, trying, horrible, disgusting, life ruining ya know the ONE life we only get Ever
Someone said you wanted to get off but the exits are blocked. What a good way to put it. And maybe if we all rush them at once we can break free. If only that cure would come for us all.
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Mel - what a beautiful post🥰😍🥰
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Agree, beautiful heartfelt post brought tear to my eyes.
I recently read a post on IG from a Stage IV patient that really resonated with me.. Here it is....
I'm in the middle of a large lake filled with cancer patients. The closer I try to swim to shore ,t he farther it gets. So, I get tired of trying to swim and just tread water as long as I can. Sometimes when I am tired, I sink ,but I come back up eventually. I either try swimming some more or just do what I can to keep my head above water. Some days, I bask happily in the sun floating around teaching others how to swim in the lake, how to do the same. Some days the sky's dark , the rain falls like tears and it takes everything in me to keep my eyes focused on the shore. Other people in the lake have boats that come for them and take them to shore, but not me. My boat will never come. The people on the shore celebrate being back on land. They don't forget their time stuck in the lake and share their struggle, but they are relieved to be back on shore. Everyone is so happy to see that person back on land that they forget that there are others who can never get out of the lake. And I just watch from the middle ,somewhere between drowning and being exhausted, at what I will never have
Let's keep treading ladies... Hugs to all here in the room.
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also beautiful cookie. I feel the struggle. Love to all you ladies.
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Mara- I was also thinking lawsuit but how much do you want to rock the boat is the question. It's apparent the owners don't really care though. Your pride probably hurt worse than your rear end.
Mel- glad the vomiting has stopped. It's like you are a rock in a hard place. You need the meds but they are making you sick. Your post regarding your kids hits home with me. My special son is my world and to think who would ever love him like me is heart breaking.
Goldens- Ouch! I hope the results show no further mets.
Candy- I know you are resting after your port removal. Take care
Kittykat- oh yes those damn steroids although I remember all the housework and outside gardening I got done with the extra energy. BTW I love Escape to the Country!
Sunshine- it is good to breakdown and cry or scream. Cancer is very tiring and all the shit doesn't go away. My MO changed my scans to every 5/6 months but the 3 months was much better for me as a security measure.
Cookie- loved your post quote describing how we feel like we are treading water everyday.
Not doing anything special today. Had a terrible sleep last night. Tomorrow my neighbor is coming over for supper as I forgot her birthday last week.
For everyone I didn't mention please know I am in your pocket!
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Mel I'm glad you got some good time with your kids. I'm not a mom so I think there are things about a mother's love I will never understand. The closest I can get is my own mother and watching her try to deal with my diagnosis. It's been hard on my parents in ways I'm sure they don't completely express but I see it on them. My best friend has two little girls, 5 and 6 months, and her absolute dedication and love for those girls is fierce. I'm glad the vomiting stopped and I hope that you feel better soon. I can understand completely not wanting to leave my loved ones. My prayer is that I survive my parents. That's the goal right now. After that I'm not sure. I think about moving back to Arizona to be with my extended family and depending on where I'm at physically I may decide to stop treatment. That's the tentative plan right now. We'll see how it unfolds. I don't mean for that to be a morbid downer.
Candy I hope you are recovering and getting rest after your port removal.
I am trying to motivate myself to go to the DMV and get my verified star driver's license. I guess this is a new requirement if I ever have to fly (something I avoid at all costs). I also have to pay my registration tags that are due by the end of the month. No other plans than that. My folks want to see the movie "Jesus Revolution" so we are all going to that this afternoon. I think it's been probably two or three years since we saw a movie in the theatre. I'm definitely splurging on popcorn.
Waving hello to all in the living room. May you all have a good day.
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