The Hermit Club
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Lily- I am sorry things are so hard for you. Is there one thing you can change that would make things a bit more tolerable? A daily walk? A hobby that brings you a bit of joy? Sometimes we need to start small and find simple pleasures to ease our burdens. My heart goes out to you sister. Hugs.
Bippy- a little self care and pampering after all you have been through. After my rads were done last year, I went to my favorite hot springs (a place of healing for me) to soak and also have treatments to help my body as it began to recover. It is good to do these things.
Cami- sorry everyone in the family is so sick. Is it the flu or just colds? I am glag your holiday is good. Turkey makes you sleepy.
I learned today my MO had some sort of medical emergency so I have to see a CNP in January for my annual visit. I hope he is okay, and that he will return. I really like him, but will be prepared to make a change to a new doctor if needed. I am having my bone density test this week and hope there are no signs of bone erosion. I am doing daily calcium and high doses of Vit D and all the exercise which should help. but do worry. I was osteopenic when I started, just a bit, buy hope things are strong inside.
Also went to the dentist this am and they now taking your BP there before the cleaning. Mine was very low today. I am wondering if all the exercise has lowered the BP? I am going to call my PCP about lowering the dose on this my licinopril.
Long day at work and trip to the gym tonight. I am pooped. I hope everyone had a good (or perhaps reasonable) start to the month. Hugs to Mags, Blonde, Cami, Bippy, Maiden and others here struggling on through.
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Hugs back at u jazzy
Got a new kitten, girl, calico, will take pix tomorrow
Got the results back from the pet scan
Bones stable, plureal effusion is there, nothing in, major organs other than lu gs,he sas shocked, me too
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Hi everyone I hope You all had a wonderful Holiday.
I guess its safe for me to be a turkey again. Ha Ha
Blondie so glad your tests are good.
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Thanks I needed that laugh.
How was Your Thankgiving
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I love the way people (some) change into more loving and
caring, I wish we could keep this Spirit in them all year around
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I am still fighting for my sleep machine needs and went into
the doctor to have them send more reports, I have applied
with the new one 4 times ( to get help with paying) and found out
the dr covers it. I would like a good nights sleep.
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I would love one, Medicare is getting slower on help.
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Its hard to get anywhere cause my Arthritis is hurting so bad,
full body
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Blondie brilliant news.......so pleased for you
I am one who gets low over Christmas,
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Awesome news Blondie! Can't wait to see the new furbaby!
Princess is really living up to her nickname Princess Pain in the Butt. She's into everything this morning and no, she hasn't had coffee. lol
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Good morning hermits- some good news here today for some.
Blondie- yay, a new kitten. I have a special place in my heart for calico's. There was one my sister had that came into our lives at the most difficult time and just brought us such love and comfort. I can't wait for the picture of your new little girl! I bet she will keep you entertained all day long too. Does the new baby have a name yet?
And SUCH good news about the PET scan. It sounds like things are stable. That makes my day!
Mommy- Princess Pain in the Butt. You crack me up!
Footprints- I hope you can get the support that you need. Nice to see you hear from you again.
Lili- I like to have quiet time during Xmas; to reflect on where I have been, and where I am heading in the new year. My time to recharge and restore.
Teka- would have preferred to see the doc, but if the bone density is not good, I may ask to talk to one of the other MOs. This is the second time this year I have been referred to a CNP because the doctor is out on medical leave. The other (my gyn) was just having knee replacement surgery. MO is more important of the docs these days. Doctors have health problems too.
Hope everyone has a good day. I will have another full day at work, but am in my final weeks on this gig and counting down.
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lol
That's her nickname for when she is being bad or interrupting me from getting anything done
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Lilly,I think we all have our good days and our "If you even look my way I'll burst into tears!" days. I know I do. I read an article that someone posted a link to, it put things in perspective for me. I got from it that we are not ourselves and no one, including us, can expect us to be. I find that when I get to the depressed place, I have to vent my feelings, then find something to make me laugh. Funny clip shows You tube videos, glue a quarter on the floor in a store and watch people try to pick it up.... Anything that even momentarily makes you smile.
This is the article....
The Things I Wish I Were Told
When I Was Diagnosed With Cancer
Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will.You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.
You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.
The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this.
The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.
Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.
You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever.
You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.
When you get to the other side you won't believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You're going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.
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This is to start your smiles
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Tam
Thanks for sharing that article
dsgirl
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tam what a brilliant article, thank you.......part of my challenge is I am not in the USA and have no choice of medical team and I do notvfeel safe with the ones I have, they are against empowered or intelligent patients and simply want to cover their own backs........never have I been treated as inhumanely before........the only way i get different doctors is to sell my house and move, not easy in this financial clinate but house is up for sale
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I am so sorry Lily. I get it more than you know.... I lost my job at diagnosis and am on Medi Cal. I have very little say and have had to fight every which way. I also don't feel safe and have little trust in my "Team". It's a tough place to be for sure! Like you I have had no choice but to become as informed as I can. Most drs don't like it. They feel challenged, when the truth is, it's not only our right, but it's our obligation to ask questions until we understand/agree with their direction. I actually wrote that in a letter to original MO when I was questioning how I was feeling on Tamoxafin... He was FURIOUS with me. Turned out, he mistakenly had me on a TRIPPLE dose(Not to mention, I was triple neg, it was pointless for me to be on to begin with.)! If I hadn't been questioning and fighting, I may already be gone.Don't give up. Like in any relationship, we have to pick our battles, express ourselves calmly and openly. And ask, ask and ask questions from all your drs! I have learned the fine art of "piggybacking" Ask GP questions, ask nurses questions ask all drs. You'll gain info and sometimes more questions to ask your MO. And as you know, be very cautious reading online. There are countless variables and online info is usually a most base level of info. But read from trusted sites, ask questions of your sisters here, your drs even your pharmacist is a great source! But always keep in mind there comes a point where we have to remember our drs are trained and we do need to value their opinions. Hang in there! I know sometimes it feels like we're just numbers/files to some drs, but you do matter
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Another smile
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Tam- thanks for joining our thread. What a ray of light you are, especially for our Lili. I love the posting that you shared about things you wished you had been told. All of it right on.
I have a friend who is going in for surgery tomorrow for endometrial cancer. I am going to find a way to share this with her at the right time.
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Thank you for the warm welcome Jazzy
Best wishes to your friend tomorrow.
That was an article in the Huffington Post written by a male journalist that had cancer. Someone shared a link to it on another thread and it really struck a cord with me. I even sent it to my not so emotionally supportive brother with the idea it's a different perspective that may reach him on a level..... Dreams are good right?!! lol
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Hello, all!
I'm new--just got diagnosed about a week or so ago.
I live alone--and LIKE it that way. I have friends, but they are usually living far away (I used to do a fair amount of traveling so I'd see them at various places, conventions, around the country). I was just emailing a friend who also just got a bc diagnosis--but she's many states away from me (in Iowa).
I have a sister living an hour away. She's all--you're gonna need watching after surgery and during chemo! I'm coming along on your appointments! She can be very helpful, but she's also a bit overbearing and because she's stressed she easily gets into arguments over nothing, which totally stress me out--but she doesn't even notice because she is used to/likes a LOT more drama than I do!
I am considering trying to distance her a bit because we were just knocking heads over nothing this morning--so now I'm feeling stressed just SEEING her. I think she doesn't get how much this affects me. I tell her, but since she's different, she doesn't even get it. *sigh*
I worry that I'll lose my private time. I like people just fine, but I also need lots of quiet time by myself.
Is it true that I won't be so reliant on others over this coming long period? That worries me about as much as the diagnosis!
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April- welcome to our thread. The time of diagnosis is very scary time trying to figure things out. Like you, I live alone and don't have family in town, but do have many friends here and they got me through where I needed their help. Although you sound like a very independent person like me, you are going to need some help from others. You just cannot do this alone, but you can decide how much help you want, from whom and when. Couple things to think about as you plan for your treatment.
1) Surgery- you will need someone to take you to and from surgery and good idea to spend the night with you when you first get home (regardless of what type of surgery you have). When you live alone, most insurance companies will assign you a home health service to come in and check on your incision(s), help with drains (if you have them), etc. They are invaluable to the healing process and be sure to ask your breast surgeon if they will be assigning an agency to come see you after you get home.
2) Other treatment- I did not have chemo (only surgery and rads) but many here have gone through chemo (or are still are) and can give you some better tips here on that and what to prepare for.
I did do rads and you can usually drive yourself to and from those apts (whether you do external beam or internal rads, as I did). That may depend on how you feel after chemo though.
3) Daily life-when you live alone, I think one of the biggest challenges is just the day to day things you may not have had to deal with before. Making sure you have groceries, meals, someone to pick up scripts (and you will have some). I had people picking up food for me or taking me out to the store for food too. Stick with easy things like pre-made meals, frozen dinners, deli foods. You won't feel like cooking. Maybe your sister when she does come to see you can help you to make sure. Find out if any of your local pharmacies can deliver scripts (some do). You will find daily life is reduced to it's simplest form.
Now regarding other people, the people who can help us best through this are either people who have gone through this or something similar or have supported people going through cancer before. My experience is that outside of that, most people don't deal well with our news. They are scared for us and scared they may loose us. Some want to control what is happening, dismiss or ignore it, etc. All of it will bother you, and you may find yourself spending time trying to make other people feel okay about what is happening too. It is okay to tell people when things are helpful and when they are not. Many people like to tell a wide community of friends and family, I chose to tell a few to keep things more private for professional reason (self employed). Friends and family will help you get through, but they may not really understand any of it.
But here is the good news- this is about you and you get to decide what you need and when to let folks in or not. Trust me, it is hard for an independent person to ask for help, but you can while preserving your time to rest, recovery, etc. No one should expect anything from you during this time.
You might want to check in with your local breast cancer support groups. They may know of other resources in your area to help you with things as well.
My other recommendation is to make your bedroom as comfortable as possible. You may be spending a lot of time there and you want that space to be clean and comfortable.
I found this thread early on when I was diagnosed and heading in for surgery. I hermitted a lot during my treatment and recovery. I do so less now as I am further out from treatment and back into the world with my work, and all the rest. This is a nice group of ladies and we will help you the best we can as you begin this journey.
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Hi April, welcome!
For chemo, it depends. My hubby came each time, and also to each weekly blood draw, every doc appt. chemo plenty of ladies do alone, so unless you need your moral support with you, it is fine to do it alone.
Now AFTER chemo is when you may need help, depending on your SEs. It differs for every gal. Some have very minimal SE and others have medium to severe. And it can differ each day. I mean nausea, GI issues, achey body, etc. mine was 5 months long so it is an endurance test. The day of chemo is pretty SE free....it creeps up for about 10 days after each tx
I am gettin a bmx in a few weeks and rads after, so no experience thereyet
So.....I know your sisters type, and she would drive me nuts. I would delegate her to laundry, yard work and shopping (without you), filling rx, etc. she is not anyone to take to chemo, because you need peace, and no drama. Also, you can hire help from an agency, as much or as little as you need. I would have done that if I lived alone vs. dealing with drama.....but you already seem like you can tell her to shaddap when it is called for! Use her in ways that will not directly involve your tx.
If you have any other questions about chemo, pm me or post here, I just finished and will help you get thru.
Candy
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good morning hermettes!
Bippy has been resurrected. That means my urge to window shop is here! Really I just need getting out of the house, so today off I go to Big Lots and Home Goods. i do still want some more xmas trim, seems that when dad died we accidentally tossed out our xmas stuff with his hoarded stuff. Oh well. It is nice though, to collect new things and have each one be special now. Also, DH is working today and dare I say, it is nice to be alone? We have been joined at the hip since July. He is my rock but Bippy is an introvert and needs precious solitary.
Anyhoo, it feels amazing to feel normal. Our weather cannot be beat either, love it. So....out I go into the world
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April- Bippy made a good point I forgot to share too, definately hire someone to do your house cleaning if you can afford to do so. I got a service in and had them weekly for awhile, then that dropped down with time (still have them come in once a month now for a good deep cleaning).
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April, I agree on having your sister not go to your treatments. You don't need to deal with negativity it would likely cause. In my opinion, set boundaries and have her do what you feel up to having her do.0 -
April- there is a singles thread called Singles after Mastectomy where a bunch of us single gals who navigated through all this mostly on our own talk about things too. You don't have to be a mastectomy person either, I was not, but sometimes it is helpful to talk to other women who live alone and/or may not have as much support as those who are married or have family in the area. There are some women there still going through treatment (and recon) too.
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welcome April. Thanks for the comments about the kitten I'll get a picture up there as soon as I can I was diagnosed today with shingles it's just one thing after another and then there was an action end of the street from me about 7 o'clock tonight a power surge or whatever in my bedroom so of course I have no TV now what ever I'm just laying here still taking steroids so can't take anything for the shingles or so the doctor said because it's been 72 hours since I noticed when I got it which was Friday so I closed the mo and he said I can have an antibiotic so he was sending an antibiotic to the pharmacy take care
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