My Husband, My Life, My Love, My Family, My Cancer
Comments
-
dodgersgirl - Prayers for you and DH. I have worried about you both being home bound like that. I am in hopes there might be something that can be worked out to get you more help.
I understand the comments here about keeping up and getting overwhelmed commenting on everything. I think that's okay and we all understand. I'm doing ok today. I am not needing the oxygen as much, I mostly only use it at night now so that is better. I have labs tomorrow and chemo again Thursday. My brother brought me KFC mashed potatoes and gravy today which was great. I even managed to eat a little chicken. It was a nice change from yogurt and popsicles.
3 -
RK, sometimes that energy is just not there for us and nothing we can do about it. We know there are a lot who read more than post, nothing at all wrong with that.
Dodgers, still sending healing thoughts for both your DH and you as well.
OMG, my street is horrible, road construction and they are going to be 3 months at least, doing it up a lot of streets in my area, bumpy as heck. Not a very even walk. Had good walk tonight with DB and SIL at grocery store, not many steps but don't care. Going to have to find another area to get to a bus stop if needed. Will have to find street that is not under construction. I am still going to have to increase my exercise along with the PT.
0 -
@emac877 - ohhhh popsicles, sounds great!
I have a home helper coming tomorrow morning to empty the potty chair and feed me. Helper is going to be with me for 6 hours Monday through Friday. Can cancel with a 48 hour notice. Can change to 4 hours a day if that works better.
Nothing changed with hubby.
Agree with others. I used to try to respond to most posts here. Now I do good to reply to a few. I read them all and jump in many pockets as needed.
Waving to my “virtual” family
3 -
@dodgersgirl Oh sweet lady I am so very sorry for the health of both you and your husband. I will send all my love and prayers for both of you and to get good news on your husband. I know you must be frightened, we are here for you. Glad a helper is coming. I just read up on my insurance and it does provide home health care for xx amount of hours per week. I didn't know it existed for free until today. Does your provider allow such help? Can a neighbor come by to help you? Church member? I would if I lived nearby.
@eleanora Thanks for the heads up on breaking up MRI time. I don't know how I'd do it for hours, like you said. Especially because I am severely claustrophobic. I'd need 3 valiums.
Waving hi to all and reaching out to say I really care for each of you and thank you for caring about me. I am beyond blessed and yes the Lord has carried me many a time.
Someone posted about nopink. Is it your understanding she has passed? I had sent a message not to long ago telling her I was thinking about her. As you all noted, sometimes it's overwhelming and all you can do is pray. No need to apologize for reading and not posting. It can be a bit daunting.
Happy to say the solumedrol knocked back this brain pressure and most of the pain in my body. The prednisone taper is hopefully gonna give me some sustained relief. Fighting Humana for rejecting my drug Amitiza for the 3rd time. All because someone in my GP's office posted wrong diagnosis code. Called GP's office and asked to speak to Office Manager. No return call so I'll be paying her a visit in the next day or two. Give us a break as we already struggle and don't need these hassles. As I said to the 30 day case manager, I worked in the corporate world and we didn't beg for surveys for every little thing, especially when it's just doing our jobs. Well, she said she saw the rejection letter ( number 2) and would get it fixed. Hmmm, guess NOT.
On a lovely, lighter note, DGD, who's 9, baked her first cake. Decorated it with my favorite things, swedish fish and what she called whoppers and we called malted milk balls. The kitchen counters and floors we messy, but the cake was perfect. Well worth the clean up on aisle 7,8 and 9. lol She wrote: Happy Tuesday on the cake. Sending a piece of chocolate cake with vanilla icing and sprinkles to you all.
1 -
Dodgersgirl- prayers up for you and your husband. I hope they can get a handle on his situation soon. I'm so relieved to hear you have a helper coming in daily.
Mara - that road construction is a challenge you don't need! Hopefully your ride service will come through for the necessities.
Irish - coding errors are such a pain. I was chasing one down when my initial dx came through and it no longer really mattered. If you drop the last number of the code for HRT, you get long-term opioid treatment - which was a problem with my job. Loved the story about the cake - how cute!
Mae - thanks for the pup-date.
One of the things I love about this thread is that even though we are facing struggles, there's an overall positivity that comes from the love, support, and understanding here. I always hope if someone is feeling down or challenged thar they also feel us sitting with them and cheering them on.
Mel - you've been quiet. I hope all is well.
Waving to Elderberry Candy, emac, Sunshine, Chicagoan, rk2020, Shanagirl, and all the others whose names are not jumping into my mind right now
1 -
dodgersgirl So relieved to hear you have help, continued healing prayers your way. Your DH is in good hands in ICU, I know it's hard but try to get some sleep even if it's a couple hours.
mara Yikes, that road work seems like an obstacle for sure. Hope your paratransit option comes through soon.
irish Glad to hear it sounds like your heading in the right direction now. Ugh insurance fights are the absolute worst! Sometimes you feel like crawling through the phone line and shaking things up to get your point across lol…..sooo annoying. I do love that your DGD baked her first cake and personalized it for you. Those are the little things that keep us marching on! Enjoying my slice with my morning coffee now, it's delicious!
emac Glad to hear you don't feel the need for O2 all the time, I see that as a positive sign. KFC sounds like a perfect switch up, hope you enjoyed every bite.
Mae Love that pup pic, what a crack up!
Off to early XRT and Immuno Tx today busy morning. Was feeling like I had some type of stomach bug/virus since Monday night. Feeling ok so far today hoping it's out of my system.
Hi to all I missed today, always in my thoughts.
1 -
Dodgersgirl sorry to read about your husband. That sounds so scary. Hopefully he’ll be coming home soon.
Waving hello to all.
sorry for not posting often. I stay up to date reading and then become overwhelmed with some task and ….Take care all sending love and hugs to the room.
Tanya
1 -
Seeq - "Pup-date" How cute!
0 -
Dodgersgirl, still in you and DH pockets sending my support.
Tanya, nice to hear from you.
Not much here, there is roadwork going on on my street for 3 months, feels really bumpy when driving through but surviving. Baking up some wash soda as we speak but will need to unplug so I can make my breakfast, both connect to same outlet. I can heat up the english muffin part, eggs and cheese. Probably cook up the sausage patty as well in there, then turn the breville back on. The bean meal is later. Had a nice pasta meal with steak and chicken stock dry seasoning, chopped up beans, cheese and wheat bran for the beef texture and extra fiber. I added touch of mayo to give me a quasi sauce. Really good.
I am also liking the idea of making different food combos with the pancake mix. I could put ground chicken, hotdogs, any meat, add cheese etc. Would have to watch portions but enjoy the way the pancake mix holds it together, almost like an egg bite.
Other than that, laundry, PT, 5 min marches to music and money making. Bit tired due to being out with DB, always causes me to go to bed late but feeling fine. I hope for a good day for everyone but in pockets of those who need it.
0 -
@cookie54 I always loved that poem. It’s beautiful and I know it’s true. I have never been abandoned by God.my whole life there were some very rough spots but I was always aware God was with me and getting me thru.
@rk2020 So happy to see you girl. Don’t feel bad about not feeling up to posting sometimes. I am that way many days, but I always read and follow what’s going on with our siestas. Here is my idea of being there for each other
I Love you all. Hey where is @micmel ?? Mel are you still getting Palliative Care for your painful mouth? You are on my mind and in my heart girl. I hope you are missing because you re enjoying Rain your rescue puppy.😊🐾
0 -
@dodgersgirl give into feeling like you want. To crash. This has got to be so hard for you. Can you ask your dr to prescribe an anti anxiety like an Ativan ore a Valium to help you sleep? That always helps me.
Hi everyone else, I’m just not going to be posting any more till later today. I have to get some things done.💕
0 -
Hi all. Hope everyone is having the best day they can possibly have. @dodgersgirl Praying for the recovery of your DH.
Going for breathing base line test at 1 p.m. They need that to see how effective the radiation will be. Then heading to our brand new hospital that opens today. The MO called to see how I'm doing and I'm right back with being really ill. The solumedrol only lasted 1 1/2 days. Is this cancer related or MS? I don't know, but he said go get an MRI and neuro consult. That new neuro I saw Friday never ordered an MRI as he promised, plus he never did a physical evaluation. MO said hold Ibrance in case it's causing these neuro symptoms but I don't think so. I did have a horrible fall back end of May with my walker. I had struck the side of my head with major whiplash. Or could be a MS lesion in spinal chord or good ole MBC lesion. All I know is I can't live this way, sitting in a chair trying to just breathe.
Waving hi to everyone and sending healing thoughts your way.
Laurel
1 -
@irishlove sorry the pain is back. But trust your MO. Sounds like he’s on top of what’s going on with you. Try not to let things live in your head wondering if It’s MS.
I would call the Nuero and tell him your MO directed you back to him for an MRI to see what’s going on with your MS. Then hopefully, you will get some answers.💗Hugs
1 -
Hey irishlove - yeah I hear that. I knew I was going to have a haul to 'see if Xeloda works before radiating' on this hip lesion but Im so done with sitting around in pain. Need this fixed or some plan of attack because pain is tiresome.
Mae - so adorable! Was the coffee that tasty? :)
Dodgers - Im so so sorry to see you've had this massive wrench thrown in your life at this point. Best wishes for your hubby and strength in the days to come. Im glad to see you have some help and someone to check on you.
Cookie54- feel better soon!
I made lentil bolognese for dinner/frozen leftovers and its ok - hubs ate a decent plateful. Some hemp hearts were called for in the recipe which I had never used before and they are maybe a little too crunchy :) Ive lost about 5lbs since I started Xeloda though, either through lack of appetite or muscle loss. Definitely had some to lose but still…
1 -
Shana
Love the picture of the girls. I know a lot of people who can benefit from seeing that. Thanks for sharing.
Cookie54
Hope you continue to feel better and treatments went well today.
Irish
So sorry things have taken a downturn. Damned Neuro! Damned insurance companies! 😡 I truly wish that each "professional" who treats us callously and incompetently be given medication that makes them feel the way that we do on our difficult days and then be required to navigate the system with the roadblocks they've created !!!
I know that there are Angels out there, I've been lucky enough to meet some, but they seem to be in the minority.
Dodgersgirl
Hope there's some improvement for your DH. Wish I was near enough to provide tangible help.
Sondraf
The best decision I made was to have the mets in my right pelvis and clivus bone radiated last year. I felt no pain from them but did have a right hip replacement a few years ago and had horrible pain before that. Pain is exhausting.
Mel
Are you okay sweetie?
Hugs to all
Eleanora
2 -
Shanagirl
Back at you, girlfriend 💕💖🥰
0 -
Dodgersgirl: I thought about you this morning. "No change" in your DH's situation must be draining emotionally and physically. I am relieved that you will get help at home.
Sondra: your trials with the trains reminds me of the trip I took with my sister way back in 1992. We had a BritRail pass which gave us the ability to hop on and off trains willy-nilly. We started in Scotland then just picked places we wanted to go, Scotland, England, Wales. It was great fun but, yeah, lots of trains trouble. There would be an announcement about some problem and the people on the train would mumble "typical"
I am sorry NHS is such a disaster. It gives fodder to folks who don't want any form of national health care. Being in Canada I am so grateful to have both a provincial plan and a federal plan as back up. All my scans, all my infusions — everything is covered and I pay no premiums. My pension extended health covers my non cancer stuff, like my GERD medications and if my allotted coverage funds run out we have Pharmacare. I have yet to hit those kind of expenses.
Thinking of all of you. I will try to be better about posting and not just lurking.
2 -
Eleanora - I agree, unfortunately this new very limited growth is on the edge of the already radiated pelvis met so I pretty much get one more shot at radiating this area. They confirmed it can be done but the downside long run risk for bone stability and pain in the future may be more substantial than the first time around.
2 -
Hi everyone. Remember that song; "I didn't sleep at all last night, I was tossin and turnin"etc.. well that's what I've accomplished all night, plus water the garden, feed outside animals, started jerk chicken with black beans in the pot, put away laundry and read my latests MRI from yesterdays's ER visit.
Brand new opening day hospital, 5 minute wait (versus 6hrs. at main hospital, larger ER rooms, but…. no neurologist on staff. bummer. MO ordered me to go to ER for emergency MRI and neuro consult. The results are mixed: MS attack and a recently discoveredT1 lesion in the left occipital bone with enhancement, measuring 1.9 x 0.9 cm, lilely osseous metastatic lesion. Inner table is involved, however no extracalcarial extension of epidural extension is identified.
Praise god it's just in the bone, nothing in dura or brain itself other then typical MS lesions. I guess because that ct scans and one pet scan were below chin, this was missed?? Plus MRI is pretty reliable. Now to a. live on steroids, b. get i t radiated, if possible I did once again ask for Ativan to deal with my shitty mental health. No one has prescribed it, so I guess I'll try the GP's office or MO's office. I'm kind of a if there's no quality of life, time for letting go. Frankly I don't want to lose that wonderful feeling when he felt we had a miracle here. I don't want to let him (MO) down or my family.
@dodgersgirl I pray there is improvement for your dear sweet husband. Thankful you were there and able to get his help immediately. How' s the home health working out? You truly need all the support you can get and I can only send cyber hugs, but they are meant from the heart.
Laurel
1 -
irish Glad to hear your hospital experience was better. Sorry that you have a bony lesion of the skull and yes agree good to hear it didn't invade brain tissue. I think you will have success with your GP for mental health meds. In my experience my MO has stated if I needed daily anxiety meds she wanted it to be managed by my GP. Obviously every MO has a varying comfort level on managing meds but GP's are used to dealing with this on a regular basis. If you needed meds to get through an MR your MO would prescribe but long term I think GP will be successful. Fingers crossed that once you are feeling better mentally it will give you the increased strength to deal with all this. Gosh I think you are amazing and admire your innner strength through all this without a little magic pill. Please don't think you are disappointing anyone! YOU are the one walking through the fires of hell and dealing with all this. Everyone who loves you will support whatever you decide regardless. Wrapping you in a big hug and hoping you get meds quickly to help you manage everything.
dodgersgirl Continued daily prayers hoping there is a positive change on the way.
Feeling better thanks, stomach bug gone.
Thinking and praying everyday for the entire group and daily struggles.❤️
2 -
Good Morning everyone. I am going for scans today. Bone & CT. Then on Monday PET. Ughhh this is our life now. I don’t want to post anymore today, but QUESTION……..Has anyone heard from @micmel ? I hope Mel is ok. The last time I saw her post she was resolving her mouth sores and pain with Palliative Care. (((((((Mel)))))))💙I hope she is just busy with her new puppy🐾🖤
2 -
Shanagirl - Wishing you nothing but good luck with your scans!
0 -
Good morning everyone,
I think I posted a few weeks back now introducing myself and haven't checked back in though reading everyone's posts and hope that everyone is doing well. I am really really really struggling with negative thoughts and focusing too much on them that it is getting in the way of me being able to work and enjoy things. I feel like I am consumed by cancer and the thoughts that go along with it. I am waiting to see a therapist but the wait to do so has seemed like an eternity. Also am on meds for anxiety and depression.
Did anyone else have this sort of depression and hopelessness when first diagnosed? (Diagnosed MBC in March w/ mets to liver). I just want it to stop and know that it is something I need to work on but don't know where to begin and feel like it won't end. Does anyone have any suggestions or tips? Trying to find things I enjoy doing but right now am struggling even with that. Any suggestions would be greatly appreciated. Sorry if this isn't the right place for this. It seems like a wonderful and supportive group.
Thanks,
Keri
1 -
Shanagirl, praying for your scans today and Monday. May your scanxiety be minimal and your scan results be good.
1 -
Dodgersgirl, I am sorry to hear that your husband's condition has not improved any, still sending my love to you and support for you both.
I am missing Mel as well, I am sure we will hear from her soon.
I am grateful for the free health care in Canada though by times it can seem slow. One good thing that happened for me was the afternoon I walked in hot weather and got heat stroke, we would normally have to pay for an ambulance to the hospital but because I am enrolled in the community health system that coordinates my OT, PT and check in nursing, they called this morning and said they are paying for it which was great. Really appreciate that.
I am busy between make some extra grocery money through the surveys and games, doing my PT and 5 minutes of marching. Thinking of walking with a UV umbrella as well if I really need to get something or get to the hospital. Laundry will happen shortly, I go through many cloths and cloths. I don't mind as many of you know. Decided I need to give the idea of getting an extra freezer. There is no where to put one, even a small one so shopping will change. I will eat up my frozen stuff and take it easy on on frozen purchases in future. Purchase more shelf stable stuff instead. It will be fun eating through my frozen supply and then later adding some frozen desserts and possibly cool whip.
Edited breakfast. Microwaved frozen hashbrown, sliced up, added beans, wheat bran and an egg. Also added some pancake mix to hold all together. Put in magic bullet, came out rather clumpy, added chocolate milk because I really do not detect the milk in the pancake mix. Came a thicker liquid, added it to both ends of the sandwich maker. Made seasoning with spoonful mayo mixed with the chicken seasoning, bit of dry stuffing mix I use for crunch, salt and steak seasoning. Looks like a heavy brown bread but it actually was quite tender and I thoroughly enjoyed it. Got really full so put the last little bit in the fridge, will probably toast some cheese on top in the oven for supper. Poor cats heard the magic bullet and were disappointed this was not for them, they get one more smoothie today though, just doing that later.
Cats enjoyed their smoothies of regular wet with warm water done up in magic bullet. Gives some variety of dry and regular wet food. They go crazy for it. Use the whiskas perfect portions, half a portion twice a day.
0 -
Keris, this is absolutely the right group! I have not had the anxiety issues you shared but I know others here have. My only suggestion is to take it one day at a time and celebrate the small blessings along the way. You will learn to handle things better with time as you learn to navigate the system. Know you are not alone. Vent, scream, cry, and do whatever you need to do, and then find something that gives you peace. Some walk, some pray, some visit butterfly gardens, and sometimes I just sit on my balcony and watch the sun go down on another day. We are here for you.
2 -
Keris, those feelings came over me twice. The first when I heard the word cancer, felt really bad when I heard chemo as well. Surgery was not a bother nor was losing my hair. Around November 2015 finished radiation to breast wall and had some peace for a few months. Then out of what felt like nowhere, head felt full of pressure and I had a couple of seizures, morning nausea and not able to think. My job was affected as I worked at home, they already knew I had cancer. Turned out a 10 cm brain met was found. I screamed oh my god I'm going to die, sent to another hospital over the weekend for scans, pumped up with enough steroids I was jittering and did not sleep. Got through the brain surgery which happened first, that was not so bad then had whole brain radiation. It was a tough road but I did recover. This was 2016.
You will adjust to your normal and do the day by day thing, panicking and not sleeping are normal but if overwhelming, walking if you can or other exercise will ease the stress, mental health help or drugs may be an option as well. Take it one day at a time, if you are Stage IV, make sure that you put together a will and medical directives. This sounds scary but is practical as you don't want to do if you are sick.
I and quite a few of us have lasted far past our life expectancy, my cancer has not shown up from the neck down for years. I get yearly scans and still am on Herceptin after almost eight years. As far as I know, brain is stable as well.
In hospital, I found a song that I used when walking the halls post brain surgery. I fractured my feet walking so much in sock feet, didn't occur to me to wear shoes at the time. Love songs. It helped me feel so much better for sure.
2 -
Hope you don't mind us chiming in, but wanted to let you know we are offering this one-time meetup. Please forward to those you think may benefit from this. Thank you 😊
Wednesday, Aug 9 @12pmET
Talking to Children About Terminal Illness: The most difficult of conversations
Kelly Grosklags, LICSW, BCD, FAAGC will lead this one-time session with Breastcancer.org. She is an experienced therapist who dedicated her practice to minimizing suffering through her work in oncology, palliative care, and hospice. Kelly is a licensed clinical social worker, a board-certified diplomate in clinical social work, and a fellow of the American Academy of Grief Counseling. She is the author of A Comforted Heart: An Oncology Psychotherapist Perspective on Finding Meaning and Hope During Illness and Loss. Her website is can be found here: https://conversationswithkelly.com NOTE: This meeting will be recorded for future use
Register ahead Here.
0 -
keri MBC is a really tough pill to swallow for everyone. We all handle managing our thoughts and emotions in different ways.Honestly for me it took months for me to stop thinking I was dying tomorrow. A sweet woman in one of the zoom meetings on here said that to me and it hit home.Yes I am more likely to live a shorter life than most but i try to hang on to the fact that new treatments are extending our lives.
I truly have learned to take it one day at a time. Walking with my music and prayer help me to relax. Besides therapy find an outlet that works for you and maybe try a zoom meetup here.Having this wonderful group of caring women who understand is a tremendous help for me. Read along and if you feel like airing anything out then we are all here for you!. Hugs 🤗
1
