Topic: My Husband, My Life, My Love, My Family, My Cancer

Nov 26, 2021 08:14AM booboo1 wrote:

Hi Tanya, I’m doing much better now that I’m not on any treatment. I was able to eat some turkey and the trimmings yesterday, so I feel good about that. Man, these drugs sure do take their time leaving my system. But I’m content knowing I am covered going forward with a great palliative care and hospice team. My sister from TX is coming to see me next Wed., Dec. 1st. She is really talented at decorating, and she is going to decorate our Christmas tree. I can’t wait.

Mel, I know exactly what you mean. Seems we are all fighting the urge to just give up and die. I have been asked by several of my sisters to please reject the feeling of sitting on my chair and wasting away—but instead to try to live life for as long as I have left. Some days I get caught up in chores and other things and actually forget I’m sick. I prefer those days. I am trying hard to live instead of waiting to die. I hope you will choose to do the same, my friend.

Kitty, who needs hair? I have been bald for most of the last 5 years, and I finally embraced it. I just wish I could figure out what to do with the curls when it grows back!

Mae, love seeing the different animals…SeeQ and Katyblu, I’m adding my congrats to you both

Love to all…

Nov 26, 2021 08:59AM mara51506 wrote:

Laurie and Mel, thanks for the pep talks about the ongoing property manager saga. Obviously they knew the last guy went over like a lead balloon so the gave a person we would know from previous fire alarm inspections. Not sure how the neighbours feel about this latest tactic but will focus on myself. Nothing has changed for me. Leaving the worry about that in the background.

It has snowed a bit here, may throw some cleats on and take a shorter walk or two. There won't be any sand or salt so it will be extra slippery, supposed to get some snow throughout the weekend, might as well practice walking.

Kitty, I have had permanent male pattern baldness and thin spots since the whole brain radiation. Except when I get lazy and don't trim it, does not bother me, always in wigs outside or if expecting someone, quite a different between my uncle Fester look and a full head of hair, usually the light and medium blonde with brown rooted pixie. Just bought another yesterday for the black friday sale. Had a lot of survey money to use. I also had fettucine alfredo and caesar salad from a delivery site from a restaurant I had never ordered from yesterday. It was delicious though I have a fair bit of the pasta in the fridge. My digestive allowed me to have it without any digestive issues which plagued me before.

Nov 26, 2021 11:14AM Kittykat9876 wrote:

I'm actually not really that concerned about going bald, especially as it's coming up to summer down here. I love Mae and Golden's pics. I didn't really get into the Black Friday thing, something is only a bargain if you need it and I pretty much have everything I need. Apart from being fatigued so far I'm doing OK, I just hope it's working. Mel, I hope you're getting some relief from your sore mouth. Go enjoy having your nails done, I have mine done and get infills and a new sparkly colour every 3 weeks. I hope that you all have a great weekend up, I'm having Finn tomorrow so his mum can go to the movies.She's going to see the new Venom movie because she's a huge Tom Hardy fan. I'm just glad I feel well enough for him to come for a visit after being so sick and not able to have him over for so long. Here he is having cake and chocolate milk with Gracie after school. Take care everyone.

Nov 26, 2021 12:13PM LivingIVlife wrote:

Kittykat- the picture is adorable. I forget you are heading into summer down under. My cousin lives in Perth and would come for a holiday to Canada in the winter. Their kids loved playing in the snow and snowmobiling.

Mel- yes yes go get your nails done!

Mara- the meal sounds delicious. I do hope your spirits are lifted a bit.

I do most of my shopping online. Trying to keep a tab on what I've got and what is still on its way. My DH just says another one!

Nov 26, 2021 02:04PM mara51506 wrote:

Kitty, I am not overly into black Friday either though I did score a really good deal on a wig between the sale itself and the honey extension on chrome. That took it down almost 40 dollars. I did have extra survey money in paypal so used that and then got some cash back on my survey site as well. Feels good. That will give me two on the go that are new and I can retire the one or just use it as a house wig.

I have darned several pairs of socks, walking so much, I really go through them but don't want to constantly replace them. I also use whatever colour of thread I feel like to use that all up as well. I also have a silicone hand brace that helps when the carpal tunnel is a bother but it started pulling apart in places. Sewed it up too even though I have newer ones. It's funny how I am super cheap in some ways and quite willing to spend in others. Oh well.

Nov 26, 2021 04:20PM - edited Nov 26, 2021 04:21PM by booboo1

Mae, yes, I have wondered the same. I know a woman (good friend of my sister) who was diagnosed with Stage 4 lung cancer. She had just watched her father pass from colon cancer even after given all of the latest drugs. She watched him suffer some of the same side effects we suffer from. She decided not to have any treatment…no chemo, no radiation, nothing. Guess what? I saw her the last time I was in PA. She is in her early 70s and is in good health. Makes you wonder…

Nov 26, 2021 07:32PM Kittykat9876 wrote:

I'm not a big fan of being cold so I've never yearned for the whole white Xmas thing, but jingle jolly is still a big thing down here along with the xmas house displays, people spend thousands pretending they're having a northern Xmas. Living, Mundijong is about 20 mins fom where I live and 5 mins from my daughter, lots of small acreage properties in that area, it's like living in the bush but close to the big cities, one of my bingo ladies lives down there. I have a blonde wig and 2 more on the way. I'll probably get Beck to help me shave my head when she comes to pick Finn up, I am already fed up with hair all over everything.

Nov 26, 2021 10:26PM mara51506 wrote:

It's funny, although I don't have the sensitive head of my systemic chemo days, I will say, I still put a couple of thin headscarves on my head at night. Just like the feeling of them. Have to wash every couple of days in a mesh bag to keep them fresh.

Nov 27, 2021 12:58AM mara51506 wrote:

Mel, I am sorry you are feeling like crap. I empathize about when one thing feels better, another starts causing a problem. I had a few weeks where I just felt awful, the going through honey feeling etc. I do hope some of your issues settle down for you and you can rest and everything as well.

I must also say with all the drama in my life currently, fighting the depression that comes over at times is tough, good and bad days. I have always felt from the start that I was only willing to do the first line of treatments, that has not changed for me. If Herceptin fails me, I am not willing to move on to more as I do not wish to put up with the side effects. Especially since family wants to leave the city for another place when possible. If I will be mostly alone, see no need to take on side effects and be so sick. I've known how I felt about treatments from the start. That's not the case now, but would be later, family already knows my wishes. Respect to all the others of us BC and other cancers who are willing to try different treatments for a long time. Everyone has to do what they need to do for themselves for sure.

Nov 27, 2021 01:14AM mara51506 wrote:

Kikomoon, I think for some of us, the dx points out how short life really is and forces us to enjoy certain things in life more. One thing that most of us have that is different than some years ago, even on this site, is a chance at a longer life with better meds and some better qol too. We all know this is not guaranteed and try to find joy in simple things. Regular life could be taken for granted.

Nov 27, 2021 07:46AM booboo1 wrote:

Mel,

You have an amazing way with words…I can also relate to the honey analogy. I try to fight the urge to give up every day, and many days the disease wins. Anyway, I hope you’ll continue to write what you feel. Love you, girl.

Nov 27, 2021 12:33PM candy-678 wrote:

Mae- Your last post really made me think. I too used to work a full time, stressful job. Now I do not. I want to have "good times, adventure, low stress, and delicious food". I just cannot figure out how to do that. This Covid pandemic, along with the cancer, has really side lined me. Yes, I have been triple vaccinated and wear masks. I do what I can. And the rest is out of my control. But doing the things I want seems out of reach now. I was thinking about what I did in the past-- going on trips (day bus trips to the theater or sightseeing), or going to a friends house for a Christmas Party, or going shopping-- those seem not possible now. I am immunocompromised due to the meds (though not as low numbers as I had with Ibrance), and I am still undergoing treatment for cancer. I cannot see myself feeling comfortable in someones' house that may or may not be vaccinated, or going out shopping with the stores full of unmasked people. I talked to a friend on the phone today about her going in a local home store yesterday to shop and there was a sign on the stores' door to wear a mask, but no one had one on but her. Our area is mainly anti-vaccers and anti-maskers. I also have to take things slower than I used to and have rest periods. I don't have the stamina I used to.

I want to enjoy what life I have left, but I have trouble seeing that in this post Pandemic world we are in now. I try to enjoy my movies, books, and foods in my safe home, but it is not the same. I am mostly by myself.

I feel cheated out of the life I want.

Nov 27, 2021 01:46PM Elderberry wrote:

To all: I was in the Book Lovers Thread and mentioned the "All I Really Need To I Know Learned in Kindergarten" but apart from the "list" was his own musings. I liked this one

"Every person passing through this life will unknowingly leave something and take something away. Most of this "something" cannot be seen or heard or numbered or scientifically detected or counted. It's what we leave in the minds of other people and what they leave in ours. Memory. The census doesn't count it. Nothing counts without it."
― Robert Fulghum, All I Really Need to Know I Learned in Kindergarten

A new variant from S. Africa. Can we not catch a break and see this thing as endemic and not have Covid inflict such a crushing affect on us?

Our stores have "Masks Mandatory" and restaurants demand proof but I am still nervous. I want to go to a music concert. A movie. JUST OUT and unmasked. Our time is being stolen from us ---

Nov 27, 2021 03:06PM candy-678 wrote:

Mae- I too wish I could be calmer about the risks. I looked up the stats for my County. One site says we are at 4.6% positivity rate, another site said 5.4%. 18% ICU bed availability. 46.8% vaccinated. I am in a small town and we do not have outdoor/patio dining. Just drive-thru fast food or a couple of nice restaurants with indoor dining, or take-out offered. I could order take-out and watch a movie and eat a good meal in my home. But, yet again, alone. Not too much fun. It is what it is.

Nov 27, 2021 07:10PM candy-678 wrote:

ShetlandPony- I appreciate your advise. My texting buddy is single, but as you can see from my posts, he is not fearful/cautious about Covid and does what he wants. He also works full time so he only has his weekends free. I have 2 church lady friends that are widowed (and retired), but they too are not too cautious--- 1 told me her cousins came from Indiana to her house here in Illinois and then they all went to Southern Illinois to eat in a Lodge in a State Park (nice restaurant). All my other friends/family are married and have lives of their own. My social circle is pretty small anymore.

How are YOU doing? I read on other Threads you are having a time of it right now. Thank you for posting to me when you have so much going on yourself.