The Hermit Club

Jazzygirl

Cami- I am glad your party was SO much fun and that you swam a lot, but did not drown in the end. 

How did I know you had Cyndi Lauper colors in your hair? LOL. I bet you look great with it all. I thought about having some turquoise color woven into my blonde hair, but decided against it since I need to maintain a professional look. 

I hope you stay with us here forever.

Teka- hermitting on vacation? Did you make it to Maine? I want some food stories next! 

Going for an evening walk as for a change, no rain tonight. In search of the super moon.....

Teka

Yes, me in Maine!

Tomorrow, Nova Scotia!

magdalene51

Hermits, how incredible you all are. I had a conversation with my cousin about this since she has been advocating for reconciliation ever since it happens, and since I know she is still in touch with them I knew she would be hearing the other side of the conversation eventually so I wanted her to hear what I heard. When I said the part of cancer changes us she disagreed – but she's never had cancer, how would she know about that? Her solution is to give it all to Jesus – but she says that because she doesn't understand that I have tried that, over and over, and I don't know how else to try it that might make that work. For someone who has been through as much as she has (and that's a lot, she hasn't always been a believer) she has a very simplistic view of how faith works, I think. Not that I know, but I know what isn't working. It's a conundrum, a problem with no solution.

So grateful for my Hermits, who understand what I'm going through. DH said I seem off tonight, I said, with the events of the day, the hot flashes, the steroids, and dreading chemo tomorrow, it's not my best time. This is the hardest thing I've ever done, and that's partly because this is something I would not do for myself.

camillegal

Mags just keep on keeping on an we're here.

camillegal

Hold on I think I've got it Teka, I thought when u said u were going to NS and it was by Canada I was thinking Alaska and wondered how are u going to do all that , but now I'm thinking Canada is by Main also so it must be North of Maine---Right.

Jazzygirl

Mags- people can be great supporters of us, like your cousin, but no one knows how we feel going through this. Like everything else in life, walk a mile in another's shoes to really know. I had to tune out a lot of advice and opinions of well meaning folks during my treatment and even now. There are lots of folks who have opinions about why we get cancer, how it should be treated, how we should approach it, what to do after to make sure it does not come back. Most everyone that does know now prefers to avoid the subject and knows I don't want to hear their advice.

The religious stuff can come at you heavily during this time too. I am sure like all of us, you have your own beliefs about these things. I am not a particularly religious person, but did ask when I got diagnosed to have all the right care and help be available to me to get through it. We do the best to get our treatment and hope it works. 

We do understand here. We have all had these conversations and challenges along our journey too. Glad we can be here to help you.

Sounds like you are heading in for chemo infusion #3? That may mean you are about half way through this part of the treatment. I hope things go well tomorrow.

Jazzygirl

Teka- beautiful picture! I hope there was a seafood dinner to go with that view.

Nova Scotia here you come!

Teka

Jazzy, yes, delicious scallops and a huge blueberry muffin!

Cami, about an 8 hour drive to Nova Scotia.

Jazzygirl

Teka- yum, nothing better than scallops! Drive safe.

Jazzygirl

You probably all heard (but maybe not) about the passing of Robin Williams today. I saw this on FB and wanted to share.

blondiex46

Teka so jealous..fishing off the pier...

Mags.. it is just sad that people act like they do, maybe she is scared that it will happen to her....is she older or younger than you.  I am an only child so I don't get the sibling thing....Like Jazzy said we go thought the crap with this stupid disease and we are either helping people deal with it cause they can't or we have to walk on egg shells with others...WTH. Just take care of yourself, you did what you said you would...I am sure it is painful and I am  so sorry you have to go through this. we are here if you want to vent or need hugs

HUGS

Sandy aka blondie

magdalene51

Blondie, she is 74, the eldest of us six – then sister 68, brother 65, me 63, sister 58, sister 56. My mom's three brothers all died of cancer: pancreatic, lung, liver; one sister of breast cancer, one survived melanoma and lived to 95 (cousin's mom), one is still alive, cancer free, at 78. My dad died of late onset leukemia, at 96 or so (I really don't remember); yesterday would have been his 100th birthday. But I don't think it's that she's scared she'll get it, she just has this thing she does where she just goes flat, no expression in her voice, just completely matter of fact. That's what she was doing today. Maybe it's her self-defense mechanism, I don't know.

All I know is, I'd never make it through this chit if I had only my family and not my Hermits. Thank you, all, for being there for me.

I stayed up way too late again. Maybe I'll fall asleep. Nini Hermies. You are my heroes.

Teka

Teka

*Hermits*

camillegal

Good Morning Hermmies.

Well Teka have a safe trip an I'm glad u are traveling cuz u'll enjoy all u'r doing. I'm on my 2nd cup of coffee and I could go back to sleep, I don't get it.

Mags good luck today with u'r Chemo, u'r getting there.

I hope everyone has a good day.

Jazzygirl

Hi hermits- up early and will be heading out to an early morning networking breakfast to see what things I can shake out of this group for new work opps. 

Mags- I am glad we can help you. My friends I told and had around me during my treatment (including friends here) are the ones that got me through. Just remember the way people act has way more to do with them than anything to do with you. Not everyone comes with the kind of empathy we need during tough times. I am hoping you were able to get up with ease this morning and on your way to your apt.

Wishing everyone a good day here.

magdalene51

Good morning Hermits. Between the steroids and the hot flashes, another sleepless night. Have you ever played solitaire in your head while trying to sleep? Not fun. Couldn't make the brain shut down. I'll be leaving in an hour, just remembered to apply my Emla before I go.

Later.

Jazzygirl

Mag- did not sound like a good night for you but glad you are up and on your way. I hope the treatment goes quickly today and you are able to sleep the rest of the day.

Perhaps you need to talk to your MO about getting some meds to help you sleep until you get through the treatment. I know they have things to help you during the worst of it so don't be afraid to ask for that help. You don't need to stay on it forever either.

Jazzygirl

Networking breakfast was a bit disorganized, but I got some self promotion in around the upcoming Tech Fiesta which I am going to be speaking at. Oh and the wild mushroom and hash with eggs was divine!

Jazzygirl

magdalene51

Jazzy, sounds like a great breakfast! Ain't networking great? I did a lot of it when I had my graphic arts business, at least in the early years. Was that guy your new client? LOL

Mid-chemo here. Just thought I'd check in. They were short on folks to access ports, so they were sending everyone across the hall to do draws from arms, I said, no, not an option. It's the port or you don't get blood. I didn't go through that surgery not to use it, even just for a draw. The MO was incredible as usual, I was telling him about these forums, I said they were the best thing that had happened to me since I got dxed, except of course for him. He said his worry about this kind of forum is that too often the ones who finish tx go on and live their lives, so the only ones you see are the sick ones and the tone can get negative. I said, I have never found a more supportive and encouraging bunch anywhere, and that we have lots of survivors and even stage 4s and everyone is up – even when we're not. You know what I mean. Even when life isn't roses, the tone of the thread doesn't get lost in negativity. And there's always a pickmeup waiting at Warm&Fuzzy. I find myself saving pics from Facebook, and emails from son's MIL etc. just for W&F. My second favorite spot after Hermits.

I didn't let anyone stay with me today. Cousin was going to come in but I sent her away, she went and worked at church for a bit then came back so I sent her away again. No need for both of us to be bored. They don't understand. She says "I didn't want you have to be alone." I said, I'm always alone, it never bothers me. I've just been sitting here listening to Chopin and losing solitaire. My go-to guy for peaceful music. Nocturnes. I have found (chemo brain?) that if I listen to music with words, I get a burn-in of it in my brain, so when I'm trying to fall asleep I hear the words over and over in my head. Of course, I have the same thing with Chopin, but it's not so bad because they're nocturnes – basically sleeping music.

Last bag is running now, Cytoxan. About 40 minutes left. DH is bringing Rose when he comes to get me, he worked from home this afternoon so he wouldn't have to be late getting me.

MO prescribed Effexor for the hot flashes, to try for this cycle & see if it works, if not, try something else. And Bentyl for the abdominal pain. I have some amytriptaline that he said I can take but I knew I couldn't sleep in this morning so didn't take it. Also, I have to take it early enough to shut my brain down. Dang brain anyway. MO said the Effexor may also help with the second weekend meltdown. He found that interesting, by the way, especially that several of the other July gals had the same thing, similar timing. He said usually he doesn't see something that major that late in the cycle, and found it curious that it simply went away. 

Ok Hermies! I'll check in later.

Jazzygirl

Mags- glad you are almost done over there. The MO sounds like he is helping you with some things to manage the SEs from all you are going through. Maybe try the amitrip tonight to rest better. I know taking any of those types of meds makes me very loggy in the morning. 

Your MO is partially right about these threads. There will be people that will come and go here. I will have been on this thread two years this fall (joined BCO in Nov 2012 right before surgery) and there have been several that have been here since then (Cami, Teka, maybe Blondie too?). Others have come during treatment for needed sharing and support and then went on their way. Others have stayed because, well it helps us in some way. And I think we have all grown quite fond of each other on this thread too.

I am not sure I would have imagined staying here for almost two years, but I am here for several reasons a) I like the people on this thread b) there were folks here who helped me and now it's my turn to return the favor c) this is a place where we can go through our follow ups with or other health issues that come up as we work to recover and d) it is also a place many of us are able to share some of the things we are doing as we move forward in recovery or living with cancer. What I love about this thread is we can let it all hang out here in a judgement free zone. 

One thing I have found with the few people I did share my illness with is that is was like it almost never happened. They never bring it up, only two friends have the courage to ask "and how are you really doing these days?" I still have hard days too, days I feel very tired from being on the AIs and life in general. We all live with some sort of SEs from the treatment. I still tend to hermit more than I used to. Most of us can live pretty well despite all we have gone through, those who are not retired do work and some who are retired still work some too (like Cami).  

I have this thread and another one with a bunch of single chicks I am active on and plan to stick around here for a long time. So Mags, I hope you stick around here with us too!

Jazzygirl

And Mags, no that man is and will never be my client! LOL, he seems like he is a new consultant type and therefore, trying to make everyone in the room see how smart he is. But the purpose of those events is for people to network, maybe learn some new things. If I were running that group (which I have no interest in), I would have a monthly facilitator and then bring in different people to talk. That is what most other organizations do.

He also is on a mission to try to help some of the federal workers that are loosing their jobs find new work and or with economic development. We have a group here in town called the NM Tech Council who has been working on that for years, trying to grown our community into a mini-silicon valley. But their are obstacles with our government here. 

I am taking a strategy planning course this fall that starts in Sept and that should be some really good networking.

camillegal

Holy chit Jazzy once u start, u can't stop not me I top regularly.

Mags u'r Dr. sounds good and he'll help u as much as he can and I hope this one is easier for u.

BTW I agree with Jazzy about this thread it's great.

Oh I did email my boos today after I had really crazy phone calls (or I was crazy) I told him I wasn't going to answer the phone anymore today, unless it rang. So see I put my foot down.

magdalene51

Well, I plan on sticking around a very long time. I consider you all friends and comrades in this long journey. It seems the only place where I can be me, warts and all.

What you said about others who share our malady, I have a story. In the early '80s I worked for a schoolbook company, doing page composition. I got to know one of the editors pretty well, and even after we didn't work there, we kept in touch for many years. We even went to the same church, for a while. But eventually we grew apart, and I hadn't heard from her for years. I don't remember how or when we connected on Facebook, but we didn't really communicate until I posted a status that gave my location as the cancer center and just said "Chemo." She PMed me and told me that she is also a survivor, and now works as a counselor for the American Cancer Society. Since then, 6 weeks, she PMs me every couple of days, and we've shared a lot, catching up on the 20 years since we've seen each other. It's been one of the serendipities of this journey.

My advantage as a hermit is that I don't have to run into people while out and about. People who call are (with notable exception) people who know and care about what I'm going through and are genuinely concerned about how I'm doing, really. So mostly I don't have to deal with negativity except from myself of course. 

Cousin fixed some of her homemade spaghetti sauce for dinner and garlic toast. Oh and angel hair pasta. So glad I ate before the nausea hit. It's starting, a little.

blondiex46

I am here for the duration and tell your MO to come here, where does he get his information.

Mags hoping you are doing ok, with the steroids I am up also, have to take the clonadine soon, but not going to sleep until 2ish.  Glad you got something to eat before the nausea set in, so glad you have someone to cook for you....xoxoxo

Jazzy you are so awesome, glad that you went to the meeting, do you intimidate them?  So what is going on now with the job, you have contracts out there? What about the music, doing any sit in's soon where you are playing, something, lol

that guy doesn't look like your type..

went to the breast cancer society warehouse, didn't hav much, got some stuff tho....dinner tomorrow with a friend for my birthday and thrusday also, so grateful for my friends, although my kids did take me out for mine also and bought this devine strawberry shortcake

bbl

camillegal

Mags what a nice story, it's always nice to reconnect with someone u shared years with. Sometimes life just spreads us apart and we don't get a chance to. Well I hope u tummy is all right sounds like a good dinner tho.

Jazzygirl

Mags- how nice you reconnected with the friend from the past and that she has reached out to support you. There are situations that are so hard to negotiate during this time like dealing with family, what to stay to people you don't know that well but may know, etc. But the lovely surprises are the people that show up that you never expected. These are the little miracles to be grateful for. I am glad you are done with the infusion and got some dinner into you tonight. Now on to a good nights sleep. And hermit away, we get that too!

Cami- I am glad you put your foot down and told the boss enough is enough. I can only take so much of the crazies.

Blondie- I am networking for some new work. This thing I thought I might be doing seems to have gone into the abyss. The consulting firm I was supposed to be working with was supposed to hear in early July, then later July, and now I am not hearing anything from them. So something ran amok, but that does happen. So I started a couple weeks ago networking and talking to some folks about new work opps. Things are gearing up for the fall which was my timeline to get back to work after the home reno projects were done. Fingers crossed that the right thing will land in my lap soon. I am working it daily.

And no that guy is not my type, but remember that picture I posted last month of the folks dancing at the outdoor concert and the guy with the cutoffs and no shirt? Well that is him. Even though he is not my type, I gave Cami's number to him and think they may have a date....

I did a couple things I have been procrastinating on which was to complete an audit for my business insurance (due today) and also been working on cleaning the grout in my tiled areas. Got most of the kitchen done today and just have a bit more to do in the dining room. Bathrooms are in pretty good shape but will do those too. I found a good grout cleaner at Sam's Club today.

Where is Teka? Maybe crashed out from the long drive up to NS.

Going to bed shortly. I am tired from being up early and all the scrubbing! Rest well my friends.

SallyS70

Hope everyone has sweet dreams tonight.  Thinking of you all.  

Cami, what kind of weird calls?  Mags, I thought it was neat the way you made the staff use your port.  Jazzy, what is the name of the grout cleaner?  Blondie, it's neat that your birthday celebrations are still going on.  Teka, enjoyed your waterfront picture.

camillegal

Hi gals, just woke up for the first time.

Sally, I know this sounds silly---but when people call I try to make it a feeling like an office not an answering service--but I need info as to what they need done to email to the guys nd sometimes the guys return calls right away if it sounds dangerous and they make calls in the evening if it's routine (electrical stuff) if they are working they don't call while on a job. Now I had the hardest time getting infor out of people today, cuz they needed to talk to an electrician-Of course my emils go on what's going on and I explain in detail, well believe it or not I have some knowledge of electricity only cuz my dad was one and I would help him and he'd explain things to me. So I was pulling wrds out to get their message to my boss. And I have to explain this without sounding like I'm a know it all---cuz I'm certainly not  but I want to just say just tell me WTF u need. LOL Aren't u sorry u asked now. hahaha