My Husband, My Life, My Love, My Family, My Cancer
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KBL, so happy for good results!
Kitty, Adding good thoughts that Finn has excellent care and everything turns out well!
I'm set to enroll in a clinical trial that would have me getting my first treatment on Friday. The best part is the trial doc prescribed neurontin for my hip and leg pain and boy has it helped already. I sure hope it continues to work.
Waving hi to everyone 👋
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Thanks everyone for your best wishes re Finny, he's gonna be fine, it's not his appendix thank goodness but they are extra cautious with kids at the hospital because, tragically a little girl died while waiting to be seen by a doctor in the ER last year. I love that little boy so much, he's my lifeline in this crapshoot my life has become. Take care everyone and thanks again 💖
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so glad to hear he’s going to be ok! Thank goodness
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Kittykat- so happy Finn is going to be just fine. I know how much he means to you.
Rosie- glad to hear you may have finally found something to help with all your pain
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Hello lovelies…..been in a funk as well. Knowing scan is coming up along with a long ass list of doctors appointments ending February. I can't get it off of my mind. I am making myself sick. I have never hated anything more than I hate cancer. I still cannot believe that I have stage four breast cancer. Just still seems like someone else's life. I always was happy with the way things were. It's so traumatic it's embedded in my every other thought. Just don't know how to be strong and not terrified. I also need another hobby. I can only make so many masks. I feel like I'm living another life and my dreams are what's real. If only.
I hope you're all doing ok. Some good stable news is what we needed. Thanks for sharing. Much love
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I hate this shitshow cancer has turned my life into as well, I rented my house out and moved from one side of the country to another to start a new life helping my daughter with Finn as they were here with no family support, I've gone from having him 4 days a week to maybe being well enough to have him for a sleepover once a fortnight, not to mention all the doctor's appointments and stays in the hospital, it just gets too much at times, so I'm with you Mel, I hate cancer with a passion.
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This thread has been my source of comfort when I can’t sleep in the middle of the night. 100 percent cancer has turned my life upside down. So many side effects from treatment that never went away. I prided myself like a lot of other women on this site as being strong. Besides all the physical pain I have it has also eroded my emotional well being and my confidence. I am not sure if I can physically make it to 65 in order to retire but health insurance premiums are so expensive to buy let alone the list income…. The other shitty thing is I am BRACA2 which means I’m at risk for pancreatic cancer and melanoma as well. To top it off I feel guilty as hell because I passed the gene to two of my three children. This is not what I envisioned my life to be as I headed towards retirement planning. I worked so damn hard all my life and cancer is expensive!! It’s crazy how much everything costs… The gift that keeps on giving..
Kitykat it is so unfair that you are not able to babysit your grandson like you used to and envisioned for the future. But at least you live closer so on days you feel up to it jump at the chance and spend that time with him!!!
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Micmel: Although I haven’t been diagnosed with stage 4 it is always in the back of my mind. I still can’t believe how terrible the treatments are for breast cancer. People have no idea…. People don’t realize all the horrible permanent side effects that never go away… I seem to have gotten them all… I ran a damn marathon two months before I was diagnosed…I always got yearly mammograms… in fact it hadn’t even been a year since my previous mammogram… just nine months before. I’m sure the cancer was there then and they just missed it. I should have been advised to get other mammography other than the standard type since I had dense breasts but I wasn’t. I found the lump myself. It has already spread to my lymph nodes… I will be getting a new MO at my next appt in March as my last one is leaving the clinic. (She had only been there two years and my previous one before her retired…). It’s getting very old. I go in every six months for zometa infusions as the AI is causing osteopenia… The insomnia the neuropathy the painful lymphedema…. The lack of sex drive and all the other changes that happen due to no hormones… I’m with you I hate it all…..
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runner & Kitty~ I tend to have off nights we're I can't sleep and I come and put my thoughts out. Just to get them out of my head and off of my mind. So stressful sometimes. I can never just feel peaceful within myself. Never. I know some of you are very active. And I find how that is amazing to me. I'm not overly active but I try to do what I can. I spend a lot of time watching tv. I do feel like I feel ive accomplished something on the days I don't nap, but then 7pm rolls in and I've zombied up. I find every day gets harder. That could be just me. But it seems like I spot another ache or strange feeling coming from my toe joints. I think ahead and I shudder at what is to come my way. Part of me wants it to go quickly, others I want to see my children forever. And my DH and dss my sweet family. None of what was planned can be lived out. The losses felt as a family are a heavy burden I carry. No Caribbean jaunts. No hiking anymore distances or at all because of my neuropathy. No canoeing down the Delaware. Too hot and I. Can't take the sun anymore. No winter frolicking because the. Cold penetrates my bones right through. I can watch perhaps under a shaded umbrella. But no water for me I can't walk in the sand my footing sucks. So many losses and nothing I think I've gained (except you sweet ladies) I just want to love andlive normally again. I miss being the force I was.
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Mel,
It breaks my heart to hear you in so much pain. I would do anything to take it away. You deserve so much better than what this shitty cancer has done to you. I will pray that there is sunshine and hope to still be found. I am so grateful for this thread. You started something wonderful, a lifeline for many of us, so I hope that will bring a little smile knowing what a great thing that alone is. Hugs to you, my friend.
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Kittykat- Glad Finn is going to be ok. I am sorry you cannot enjoy him more. This cancer is shitty.
Mel and Runnergirl- I am sorry you both are struggling. Runner- I am BRCA 2 also. I did not know about the greater risk for pancreatic and melanoma. Wow. My PCP did just mention at my last visit I should do the Cologard test for testing for colon cancer. Easier than a colonoscopy. I have never had a colonoscopy and I am 51. He said the Cologard test show gene mutations that may predict colon cancer. Hum. Didn't know that either. Wonder if I have those genes !!!
Pocket duty list for the week of Feb 7---
Rosie- Starting new clinical trial treatment on Friday
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Mel: you words resonate with me. The losses. I am hoping this dark depression will lighten a bit and I will be able to see some rays of hope. But I totally understand the feeling of losses of not being to do certain things due to this dreaded disease and side effects from treatment. I also can’t tolerate being out in the sun. Makes going on a vacation to somewhere warm almost impossible. It is so hard to accept the “new reality” of my life as that was not what was in my playbook. I know I need to get to acceptance of all this but I’m stuck in the anger phase. Especially when I see others being able to do things and enjoy life. Although my kids are grown and don’t live with me I still feel a heavy burden because I feel like I am not the same strong mom who raised them. Also I feel like I’m a major burden to my SO who carries the brunt of the household chores.
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it’s all a huge shit stew. I hate an awful lot these days. Happiness comes In Short bursts. Little shines. My therapist calls them. My DH bares the brunt of housework for sure. Laundry, Shopping. Basically everything. Makes me feel useless. I feel as if I have been cursed. My whole life has been a rollercoaster. I am sorry runner. I wouldn’t want anyone to go through what we go through. I guess in way we are strong. I just loose that a lot too and feel weak and let down.
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Kitty, in your pocket as well as Finn and his parent's of course as well. Wishing the best, I know not the best not being able to be right there but I am sure your love is reaching him.
KBL, glad you got stable results and glad you are sleeping.
I am adding a few extra things to my diet. I have reintroduced eggs will be adding different things to the eggs such as black beans and spinach, bran and whatever seasoning. This morning I scrambled 3 eggs in a mug, added a handful of beans, beefless ground, sprinkle of bran for fiber and taco seasoning. Put a dollop of sour cream in too and cooked it, stirring frequently. They came out well and were really good. I felt full too. After that I did an hour of walking. Took a couple 30 min sit/stretch breaks. I also am free to go grab water as needed which is nice. Outdoors, I plan to likely just stick to shorter walks as those will be safer. I am building strength in my legs and have decided to make myself get up from the floor at least once a day. I can do it with a stepbench that is not super high so that is progress. Keeps me able to get up if I fall.
I did my day differently today and decided things when it comes to exercise. I am starting a bodyweight strength training along with my own equipment, dumbells and the like. I am also handling my meals differently as well since white bread has entered my diet, any meal involving white bread, toast or english muffin must have an hour long walk. Done with marching steps since that is typically how I walk outside to avoid tripping. The amount I walk will depend on the types of carbs. Beans are not a high index so I could probably get away with 20 mins. I am also planning to sell my treadmill as well. Since I am pretty well marching, it does not work for me. Once spring rolls around, I will be bussing to a nearby mall and doing some mall walking, if I go to the grocery store which seems to be Walmart at the moment other than shopping with DB, I can walk the aisles and get some extra length in my stride. I feel safest doing indoor walking. I plan to also take the walking poles both to the park as well as the mall to build endurance and speed. I don't use the treadmill and my place is tiny, it would give some well needed space.
Edited to add, keeping the treadmill. Thought about it and it would be easy to train with a knapsack full of weight so that when I do shop, I will be able to walk easily. I figure if I do that, I will also be safer outside. Looking for adjustable dumbells as well though will have to save for those.
In short, hoping this will help me recover muscle, tighten up and keep me safe while minimizing the distance I walk outdoors. I really only need to be able to walk for half an hour at a time and be able to lift my legs.
Sorry for the verbal diarrhea.
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Mara, thank you. Your plans sound great. Staying active is key.
Mel, hugs to you and runner.
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Mel: I am so thankful I found this thread. I don’t feel like I can always share my frustrations with others who just don’t understand. Recently since I have emotionally spiraled downward I have shared some of that with my daughter who moved over a year ago to Kentucky for a job. I live in Oregon and miss her terribly. Thank god for FaceTime. Actually her ultimate goal is to move to Australia as she has traveled there several times before and has some friends there. (After she graduated from college she went there and stayed in hostels and traveled down the coastline by herself for several months. She had put in for a work visa and then the pandemic hit…. She had also met a guy over there but the pandemic also put a stop to that…. Now I’m rambling. But then she shared my struggles with her brothers who live in the same state as me. One lives an hour away and my oldest and his wife live about three hours away over the mountains. My oldest asked us to come over this weekend to watch his wife do the polar plunge for a fund raiser for the special olympics. But really he wanted to talk to me about my struggles and his thoughts on what I should do to help me get past them. I know my kids love me and would do anything for me but the physical stuff they just can’t take away and it is so hard for me to accept. I know I need to get moving just even a little bit each day but by the time I get home from work I’m in so much pain I just want to crawl into bed. Plus I have to get into my lymphedema pump for at least an hour or two and then the gabapentin zombies me out…. It’s easy for people to say you need to just get up and move but after eight years of this shit show I just feel so so very exhausted and don’t see a way out. I hope that it is ok to express my feelings on this thread like this because I don’t want to drag anyone down or burden anyone else…
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My first MO never really mentioned it. My second MO (who is now leaving g the practice after two years) came from NY and specialized also in genetics and she is the one who talked about the pancreatic ca and had me met with a GI doctor who specializes in liver/pancreatic stuff. The plan I’m in is one year they so a procedure where they run a scope down and examine the pancreas for changes (kind of a highly technical procedure) and the next year do an MRI with contrast dye. I had that last summer and that was no fun. I think I would just prefer to be knocked out and have the more invasive scope done… but then I also think why am I even doing this we all know how fast growing pancreatic ca is and how quickly one dies from it.
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runnergirl26, this is exactly the place to let out your feelings. I’m sorry for what you’re going through. I can’t imagine how it feels to know your daughter could be thousands of miles away.
We understand here.
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Runninggirl, I second the letting out your feelings. The nice thing is you can saw what you want in a non judgemental space here. I have said so much at times, the typing almost matches me when talking excitedly too. We are all here and listening when needed. I also want to say that if you need any tips for gentle movement that can work well, let me know. I've researched a lot of these for myself. I don't have pain but excess flab that I am working to turn into muscle.
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Mel, I am sorry you are feeling so much loss, really does make life miserable and contributes to the physical changes you are going through at the same time, glad you made this thread so you can put some of that unhappiness and we will share the stress you are feeling as well. This place is a godsend to me and I hope it helps you so much, love you.
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Wish I could come hug each one of you but for now virtual HUGS🙌🏻🙌🏻🙌🏻🙌🏻🙌🏻
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Mel and Runnergirl- thinking of you today and hoping you get lots of “little shines" this week. I know it is hard sometimes, a lot of the times.
Mara sounds like a good plan you have for moving and diet! I always think of you when I'm being lazy and need to get up and get with it.
Not much around here this weekend. Trying to enjoy the little things.Weather finally broke to low 60's so got outside and took a walk. Made a soup with celery, carrots, onions, garlic, thyme, mushrooms, coconut milk, and wild rice. I thought it would not be any good but it's actually pretty tasty. DH started cleaning out his stuff finally, yay! Feels good to lighten the load of “stuff. Sneaking in Downton Abbey episodes when I can, DH can't stand it 🤣. Watched a Netflix about a young dude who climbs up frozen mountains free form (no ropes).crazy person.
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Mel and Runnergirl- I know it is very difficult to explain to other people what you are feeling and why you are always feeling that way. I know nobody in my family doesn't understand and doesn't really want to discuss it. That's why this forum and these women are so important. I feel like I have a voice that usually stays hidden deep down inside.
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Deb,
What a great way to say it. A voice that usually stays hidden. I never talk to anyone about what’s really going on except my sister (who I’m moving near). I can’t wait to be heard again. She is so supportive. I really don’t know where I’d be without her. I hope you all have a “person” in your life like that. Might even be someone here. Doesn’t matter. It’s important to know you are loved and supported, and there are so many times I wish we could be together. But this is a very good second. I feel like I could say anything here and be accepted. Thank you, ladies, for your compassion and for supportive way we interact.
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Kikomoon, that soup sounds delicious.
Deb, I do family and friend updates every 6 months to a year on facebook. As far as talking about it, if it comes up, it is fine but I stay more clinical about it as I really don't much emotion toward my own cancer. Pretty matter of fact, I know what I will and will not do as a single person if I progress and at the end. I do tell my older DB and SIL as he is my power of attorney and she would handle the medical if I could not. I mostly discuss cancer at the cancer clinic when someone hears how many Herceptins I have had now with staff. It always leads to conversations, usually early stagers and I always wish them the best.
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Hello Ladies ~ tomorrow is therapy day, usually I'm worn out by the end of it. Anxiety is what I'm going to really talk about. I need tools to help cope with things. I realized today I don't ever want to go back to another doctor. Ever. It. Makes me sick thinking of it. The smells. The needles drinking that ass chalk crap. Even though that has come leaps and bounds for taste. I'd just assume never scan again. If I didn't have. My precious family I don't think I would even scan again. I'm sick of living the life of a patient first and a person second. No less where a woman falls in. I found some little sunshines today. My son called me to talk. He said he missed me and wanted to talk.a Little. I was thrilled. I was very happy to see he was calling me. I dont want to be a clingy mom. He was asking questions about when my testing is coming. And to please keep him posted. He said he was sorry that I have to go through this. And it makes him mad. I just am thankful that they aren't chubby little ones in their high chair with rosey cheeks . I've reviewed all paperwork and it's all in order. The kids are going to get a chunk of money. My life insurance is for them. It brings me some comfort knowing I'm leaving them something to get a house with. I know cancer effects is eachdifferently but thank you ladies for sharing this thread with me . It helps me a great deal. To hear that it helps others makes me happy. Little sunshines.
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Mel:
I’m glad you got to talk to your son today! Yesterday when I was talking to my son and voicing my anger frustration about having much of being a woman stripped from me from cancer he reminded me you had three kids mom and nursed us all… that is what it means to be a woman. Then he said some women are never even able to have kids and maybe they don’t feel like they are a woman if they can’t get pregnant and give birth…. Interesting take from a 31 year old… it did make me stop and think…
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runner your post brought tears to my eyes. What an amazing son you have.
mel, I so wish this living room was real. My heart breaks that you are having such a rough time right now.
I fell last night. I tripped over a curb, thinking we were at the bottom of our driveway in the dark. Today I hurt and now I’m running a temp of 100.5. My normal is 97.7. I’m supposed to call my doc if I get a temp over 100.2. Of course it always happens after hours. I’ll message them in the morning. I’m going to take some Tylenol PM and go to bed.
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Mel, still sending hugs. I hope my grandson is like your son and runner’ son. Granted, he’s just a toddler right now, but he’s the sweetest and loves me dearly. I want him to stay sweet.
Sunshine99, I’m sorry you fell and now have a fever. I hope it settles down, along with the pain.
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sunshine;
Sending you positive thoughts that you aren’t too sore from you fall and your fever resolves! Hoping you get a refreshing nights sleep!
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