My Husband, My Life, My Love, My Family, My Cancer
Comments
-
KBL, it was Tanya’s friend who had covid. Tanya was posting what her friend said.
I just caught up on a few pages, including the discussion of holidays and Covid precautions. Moth, that was a really good point about how some comments are quite judge-y (for example “If you are afraid stay home”). And yes, if you justify your position, it can sound like you don’t really believe in your decision, and it can invite argument. I had a couple encounters in health care settings (!) where the desk person or the LVN would not follow guidelines. I don’t care what their personal stance is — when they are at work they need to cover both mouth AND nose with the mask, and refrain from telling patients that masks do not offer protection. These people were combative, and these encounters were stressful to me.
I have a difficult situation. My older relative lives alone, and is very lonely. I am the logical person to help with that, as I am the one who lives nearby. But covid. Her position, which I respect, is that quality of life trumps strict precautions. She wants hugs. She wants to go places in the car together. She wants to visit inside the house. Even though we are both high risk, I believe she feels that I am being mean and overly cautious, and that I ought to make an exception for family. But I feel we could be a danger to each other, especially as she is willing to go to various businesses while I only go to medical appointments and to the grocery store twice a month during the early hour. When we visit outside she keeps fiddling with her mask and taking it off her nose. I feel so bad for her but I also feel annoyed that I am low-key judged for my position, which I take out of concern for us both.
0 -
Shetland- I am sorry you are struggling with this situation with your relative. Covid is so multi-faceted. I can understand her being lonely. But it is just not safe, for her or you. You just have to put your foot down. Talk on phone (that should help with her loneliness). I got a call today from a church friend and we talked for almost an hour. Brightened up my day. Or if the weather allows, maybe you can go see her but stay outside and several feet apart--if she will comply.
I am still hesitant about the mastectomy fitting. But I guess I will go. Maybe double mask??? And ask fitter if she will hand me the supplies and I will go in fitting room by myself and try the items on.
I was reviewing my week's activities- from Sunday to Saturday---- Sunday, Monday, and Tuesday no in person human contact. Wednesday need to get blood drawn for monthly labs. Thurs no in person human contact. Friday mastectomy appointment. Saturday store for supplies, during the early hour. So... blood draw, mastectomy appt, and store. Next week nothing planned, so far. Pathetic, right? I hope I stay Covid free.
Edited to add- but I do talk on here, talk on phone to friends and family, and Zoom game with friends. So I do socialize.
0 -
ShetlandPony, oops. I think I totally missed the part that was highlighted in blue. I thought I totally missed that Tanya had it. Makes sense now. Thank you for letting me know. Sorry, Tanya. Lol. My eyes didn’t see the part where it was your friend. Glad you didn’t have it.
0 -
Micmel - Have you tried reaching out for Palliative Care? I'm not going to pretend that I'm in the same situation that you are facing, but I am facing an intense, saddening one of my own. 3 years, my son (38 y.o. at the time) was diagnosed with an exteremly rare form of cancer called thymic carcinoma. We went through the full gamet of treatment with him. Then last December he was diagnosed with a metastic brain tumor on a Monday and I was diagnosed with DCIS/IDC that Thursday. To say that I lost it would be an understatment. Luckily my doctor was fully aware of my circumstances and recommeded that I take advantage of the Palliative Care program. This program helps people like us to cope with the intense emotions we go through and puts in place a tailored support system to meet your specific needs. I followed his advice and am so glad I did. You may want look into it.
0 -
eco~welcome to the thread. I have an excellent palliative group luckily. They help tremendously, but it just seems like I trudge through honey to walk down the hall. The fatigue is the worst part of it all. I am so very sorry to hear about your son. My goodness, no parent should have to deal with anything like that. In the same week? I don’t know how you’re still standing. Cancer can turn things on a dime. I think being stage four makes you feel adrift out in sea looking around for the next shark to bite a chunk out of you. Looking ahead all you see is unknowns. But to have to deal with a. Child. I’m so very sorry your family had to go through that. Thank you for your caring post.
0 -
Shetland, you must keep yourself safe, not just her. I agree about the calling and the outdoor visiting is fine. It is all about safety and your comfort. If she is lonely, she could be pointed to online groups that meet virtually so she could be with other people. Not just support like this one but meetings face to face would be helpful. Video calls are great. If she cannot keep her mask on, that is definitely not safe to take her out and I don't know how many places you are going yourself anyway.
The only people I see regularly are my brother's family. I do go places as they do too. Our numbers in London are not as high as in other areas, so we are allowed our social bubbles as they call them, no parties or large groups of people of course. We also mostly limit our outdoor trips to drive thru and drives in general. I allow myself to go to grocery stores and one burger joint. Hardly anyone eats in and I sanitize the table before eating. Most people I see now are complying with the mask rules in place as well. May help,might not.
0 -
Shetland I'm sorry to hear about your homebound relative. Candy and Mara shared outdoor outing idea. I guess that depends on weather and then will you meet her there or will she expect you to drive. Outside is the best. I do go visit my grandkids and we all wear a mask. I've gone maybe 5 times since isolation. all the other times were outside. I did go for a car ride with a friend. I drove and looked sideways and did see that nose over the top, so I won't do that again. I'm sure you'll figure something out. Hoping for the vaccine soon.
KBL I shared what my friend experienced. She has a husband and four children-all were infected and her sister. I didn't ask her where she thinks she got it bc the kids and all.
Eco your double cancer dx in the same week is heart wrenching. Mel is a staunch believer in palliative care and always recommends it. I have looked for services separately but thank you in advance it would be nice to get everything with a single point of access.
Booboo when I read it (article on Covid), I wanted to share it bc the hope it gives us that are struggling with MBC and everything else. She's young too with a family so it all just made me think of us. This pain is new and has moved to my abdomen so Oct. 27th I'll take my PET and then wait my scanxiety eternity for the results.
Tanya
0 -
Tanya, yes, I went back and read it again. I don’t know how I missed that it was your friend. I hope your PET goes well.
0 -
Eco,
I, too, am very sorry about you and your son. I will pray for strength for you in your own journey as well as for your son. Please come into Mel’s living room often and let us know if you need support. This is my place to come and vent when I need to but also to lend an ear. I thank God that Mel started this thread.
0 -
Eco, I am sorry about you and your son as well. Take care.
0 -
Eco, reaching out to you to lend strength. I’m sorry you have this going on!
Candy, Mara, and Tanya, thank you for the ideas. We do have texts, long phone conversations, and occasional visits in the garden. I need to make sure those things happen often enough. She has become more anxious about driving, and would not even consider meeting me at a botanic garden that is quite nearby, because she has not driven there before. Even if we met at my place and she could follow me over. Also not very open to any new tech like a virtual metering, although the family did get her to do a Group FaceTime once. Work with me here!
0 -
OK, I must say I am surprised I managed to do this but I walked to the hospital for chemo which is 2.5 km or 1.5 miles. Did my treatment. Started to walk home after treatment, walked another 5 K to get to my burger place where I had supper and then another 2K to get home.
I don't even know where the thought to do this to came from but I will admit I was pretty tired by the time I got to the burger place. Herceptin is targeted but I get knocked on my ass with the fatigue that settiles in so the fact I even thought to do this was surprising. I even wondered if I should stop at home but decided I would not go back out so just pressed on. The burger meal was good of course and the food livened up my walk home. I did 8.8 k or 5.5 miles round trip, the longest part after chemo. Can just surprise us sometimes what we can be capable of. I am not in super shape or super strong, it is a heavy effort, sweaty endeavor for me but now I have fewer excuses not do things.
0 -
Wow, Mara, that's impressive. Right now I am barely walking, but a 2 mile walk is all about all I can muster on a good day. You are amazing.
Having some residual pain today from Monday's liver biopsy and microwave ablation. It's pretty dull pain, but I feel pretty weak. Also made the mistake last night of taking an oxy tablet (prescribed by the interventional radiologist for pain) -- I really cannot handle pain meds. I woke up this morning with cotton mouth, feeling really nauseous, and it's been that way most of the day. Just had some chicken soup and toast, and hope that will help. No more pain pills for me -- easier to deal with the dull pain rather than this.
0 -
BevJen, I am sorry you are having pain and dealing with the after math of pain pills. I was given Percocet back when I had my mastectomy and they just killed my stomach. Took ibuprofen after that to manage pain. I hope your pain settles down soon. 2 miles is also an amazing walk to, don't belittle that. I had rest breaks at the hospital and at the restaurant eating my supper.
I also allowed myself a larger spoonful of peanut butter as dessert as well. Figured I burned off enough to have earned it. May have another walk to do tomorrow as a package was not deliverable by UPS while I was at the cancer clinic so there is my workout tomorrow afternoon I guess. I need it. I got weighed before the infusion and I have gained weight. Oh well, if I gain weight on my more nutritious diet, so be it. I can do much more than last year, and I must keep pushing myself. Maybe I can avoid the heavy fatigue with the activity, we will see.
0 -
Mara~I’ve been into
Peaches with just a sprinkle of sugar on top of them. Yum! My DH gets the Costco brand in the glass jar They are heavenly My nightly treat. I’d eat until my head would explode. I just love to eat. Problem Is. I’m Never hungry anymore. No appetite at all. But then again I don’t walk like you do. You inspire me to get moving ! Thank you sister
0 -
You are welcome. Be aware that though long distance is fine for me, I go at a steady pace, shorter steps to ensure I lift feet and I sweat a lot. I also find it taxing. I just keep going.
Last night I was wired for sound with all the later afternoon to evening walking went to bed at 2AM and woke at 6AM. No more sleep to be had. Not sure how much walking I am going to do today. I am presently pedaling my elliptical while working on the computer just to get some movement in. Really want to avoid naps. I may have to pick up a package and a couple of groceries but that is about it. Might walk for the package but can also get less walking and take the bus part of the way. Will see how I feel.
0 -
Made our own flour tortillas last night as part of a broader fajita situation to use up leftovers and they turned out great! Nice, small, and you only needed two. Rest froze flat in the freezer.
However, like Mara, its time to put the brakes on all the baking and eating. Just feeling a bit wide lately, not to mention Other Half is looking a little too bellylicious, and its what 8 weeks to Christmas? We usually do really well on low carb diets, and I need to get some snacking habits under control too. I dont think its a full, hard core keto scenario, but balancing out my breakfast habit, doing vegetables + maybe some beans on it for lunch, and then meat and veg for evenings will do the trick. We aren't really far off that now, so hoping it won't be too much a shock to the system! Im also curious if eliminating a lot of white flour and sugar out of the diet will help with the aches and pains in the evenings.
Hello to all!
0 -
Sondra, that sounds like a sensible approach to food. I cannot do the low carb as I find my mood takes a nosedive into depression if my carb is too low. Even with exercise, it will stay in the back of my head. I am trying the same foods, just smaller portion sizes. I also am not eating a wide variety of food, snack size mini hamburgers as main protein throughout the week, LOTS of beans spinach and cheese. Sometimes a small handful of crumbled tortilla chips or a handful of my high fibre cereal for crunch. Wheat bran powder with some taco seasoning and a small portion of queso just to glue it all together. Drink chocolate milk for my bones and vitamin D as well. I can definitely shrink all meals and still get everything I need. Beans and spinach have made a real difference. I may also keep my elliptical set up until I have done 20000 revolutions which cubii states is equal to 10000 steps since obviously the rotation is shorter than a step, even though it messes up my living room because I can use it on the couch with a folding Bed table to hold my laptop. Burn some calories and avoid naps and Herceptin induced fatigue.
0 -
avoid naps. ThatS what I need to do!! I just can’t seem to make it happen. It sucks. I could sleep All day. Ibrance kicks my ass. It really is a high fatigue regimen, but then again they all are.
0 -
I sympathize Mel, that is my biggest SE from Herceptin. I still consider it a heavy drug even if it is targeted instead of systemic. The fatigue we all feel is real and I have to push myself to do anything. I am not walking today, just pedaling my cubii and watching TV and doing surveys, keeping me awake on a short sleep for me.
I also have a method to cope with how I feel on a walk when the inevitable I'm tired thought intrudes I mentally or sometimes lip the words of the songs I am listening to in order to distract me from my thoughts.
0 -
I had a massage therapy appointment today (not the spa type massage but with a registered massage therapist who works out of a medical office with physiotherapists) and she worked on my glutes and lower back. Wow, amazing. If you can afford it and have an RMT in your town, go. I know we can't get rid of all the aches and pains caused by our cancers and treatments but I figure I might as well tackle the ones I can. I thought my ass was a big mushy sack but it turns out it's a bag of marbles. She found so many tight little trigger points where the muscles needed to be released.
I'm starting to think massage should be part of standard cancer treatment. What cancer patient doesn't have tension and muscle strain? Who of us doesn't need some relaxation and healing touch? Would be nice if all cancer treatment centers offered it as part of the treatment package.
0 -
Sounds awesome and relaxing all at the same time. Would be nice to afford that if I could and I agree, an RMT should be part of treatment, bet that would cost less than the immobility that comes along with frozen joints.
0 -
I also am finally starting to crash. Made myself stop pedaling after 3 hours. I am not a marathoner and any more would be bordering on obsession. No walking today. Early bed and a light dinner and tiny piece of the cake I bought last week. Watching TV and surveys in between.
0 -
Hi ladies! it’s been a long time since my last post. Mara you have so much energy! I had started walking and was really getting into the grove of it; but my dogs plowed me down and they said that I sprained my left ankle. The pain was pretty intense( which working in the daycare did not help) Its been 6 weeks and it’s starting to feel better so maybe I can start walking again.
Micmel it’s amazing how well your thread is still doing. You really helped me with some of my lowest days and it’s great to see you helping all of these ladies:)
I have really tried to stay positive but here lately the what will happen thoughts creep in. My husband gets so upset when I say “if I’m still here” The other day i was talking about I don’t what i will ever do if i had to stay in bed but one day it will happen. i was asking him to please find ways to get me out and about and he just got so angry! I’m doing really well right now and I guess my family thinks that I’ve been miraculously cured. they forget that there is no cure
0 -
Holmes~🤗🤗 OMG it’s really great to see you again! I love it when I see someone after a while. It makes me feel better because I worry. I’m so happy you’re doing well, I myself am also doing well. So we both can be thankful for that these coming holidays. Giving you hugs.
0 -
I am glad you both are doing well. I can sympathize with having someone who does not want to hear if I am still here. My older DB and SIL don't minimize what I have, but they believe I will live another almost 20 years to retirement age. I don't bother correcting them. I am grateful for every day I have when I am strong enough to do what I want. I will not plan for another 20 years, I make plans for the next couple of years and maintaining myself this way, not the future which I may or may not have. Does not overly bother me, my family would get over it. I am blessed to have had the time I have had, every strong day is a gift but not forever..
0 -
Hi all, I’ve been reading but don’t have much to report. My days as the resident travel correspondent are obviously on hold. DH and I head to the mountain later next week but the house is not empty yet, so we plan to finish in early December when I return for scans.
Thanksgiving will be at the cabin with our friends from Louisiana and possibly the Germans, if they don’t have other plans already. 6 people sounds reasonable to me and the entire county out there has only 17 Covid cases. Mask requirements are state wide but I’m curious to see if the small town cares or not.
The new trailer should be here when we get back for scans too which works out well, as we’re thinking of a anniversary (12/24 is our 20th) trip.
So far I don’t like Xeloda, Tuesday I talk to MO about another dose reduction but a new anti-nausea med is working better than before. Since I only have the radiated bone met below the neck, I think a dose reduction is not going to hurt anything, I think my MO will agree. I’ll also meet my new “local” MO (in El Paso, 3 hrs from the cabin) on 11/12 for all the regular cancer business but I’ll return to Houston for my scans and brain stuff.
0 -
Mara~that is a great way to look at it. You really have some Cool things about you that I admire.
. I wish I could feel that way. I take one look at DH and hope for those 20 years with tears. I see my beautiful, radiant daughter growing into a wonderful woman. I want to see her kids. My son growing into a man. Although he needs cleaning classes. His heart is honest and he’s a good person. Both hard workers. Being a parent changes how you look at everything. I don’t want to leave my family. It would create a hole For my kids. I’m their closest relative in their lives. It would cause some Major disruption and sadness for them. I’ll fight everything I have to so they don’t feel like that. My precious DH ..... another crack in the heart. I love my life. I love them. Hopefully I’ll get some more good time. Hopefully, we all do.
0 -
Mae~that sounds like some going’s on to me!!!! I hope you like your new MO.thats important in every way. I think you’ll be reporting from The wild as soon as you can!
0 -
Mel, I completely understand what you mean. You have a husband and kids. Of course it would break their hearts and yours if you had to go and that is so much different than my attitude about me.
I am single, no children, a small family (I know they love me) and some in person and online friends in different places. I know people would be sad if I were to die of anything, let alone cancer BUT my relationship is one that would be easier for people who have each other and spouses and partners together. I don't have anyone whose life might be devastated so I can definitely recognize that my attitude may not be easy to have when you have your DH, DD, DS and friends to consider in all your dealings. So maybe smaller parts of how I deal with things could make some things easier for you.
0
