Stage IV NED crew : lets support each other
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Cafe I love love love to hear that you have been NED for FIVE YEARS after liver mets! Well done and may the wind always be at your back on this uncertain path we are all walking. Thats sooo good to know!
I am coming up to ten months since my liver resection rendered me NED. Still working out how to live life every day and deal with uncertainty. I certainly take nothing for granted any more. I have come to realise that I may hate having to be a cancer patient, but one thing this disease has taught me is how to appreciate my life in a way I never used to: family, friends, each day's events, the lovely countryside where I live and even the weather...Ive changed from being a head down workaholic to a head up take time to stop and look around person. It's good. Boo.
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Adjoth,I have been on hercpetin and tykerb since Aug 2013. Currently NED. Herceptin seems to be the go to for HER2+
Keeps us posted.
Be well
Nel
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Boo, I know it's so hard. I used to live my life in 3-week intervals, because that's how often I get Herp. It does become routine again, and you will find your new normal. This is just part of my life now. I think that used to be the hardest thing to wrap my head around. Every third Wednesday for the rest of my life.
What's the alternative though? I get poked and prodded for 4 hours a month. It's worth it. I still get overwhelmed sometimes. That's when I take some Linda-Time!
Take care...
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I live in three month intervals...the time between onc visits and full blood work ups. Today was my three month check with her and all blood work is normal or even better than normal, her words. So I can breathe a sigh of relief until September, my annual PET/CT. Hooray - our weather right now is beautiful so I'm going to enjoy every minute and ignore my achy left hip and sore right shoulder because as far as anyone can tell, its aging or arthritis.
Amy
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Cafe, I totally agree with your approach - a few hours being scanned once every three months if a small price to pay for being in remission. I still find the week leading up to the scan to be tough, but time passes, the scan happens and then my life take over again. Being poised to go back into treatment is mentally exhausting, and i am learning to find positive ways to move forward whilst still keeping one foot on the floor, braced.
AmyQ, sounds like we are both on the three month interval lifestyle. Well done on your bloodworm - it must have felt soooo good to get positive news like that from your oncologist. Hope the results are always that good!
Boo
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I saw my onc NP recently, and I glanced at (ok, I read as much as I could see) of the paperwork about me that was on the desk. It said I had "no evidence of disease". Wow! Nobody has said those particular words to me. Even though I know my scan results have shown no metabolic activity, I did like reading those four words. The word "remission" was on there, too.
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Oh Shetland, that is brilliant news - happy dance time! Hope this is how things stay with you for ever!
In other news, following symptoms I had a CT scan last week and results show no mets (suspected, I have lobular so sneaky and they like the gut, so phew) but diagnosis of a hiatus hernia. oh joy. Still, I can deal with that. Anything to keep well and in remission. I've altered my diet, smaller meals and avoid stodge. I've been eating well for ages anyway, loads of salads and veggies, and am upping my exercise - more walking and my beloved Tai Chi, which gives me so much more. for me is provides emotional healing and tranquility, it is so much more than just a form of movement. I can't explain it, it just does.
Boo
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Shetland:
I think your news is absolute fantastic! What I can't understand is why your oncologist didn't share some of that information with you. The emotional support that would give a patient is tremendous, regardless of how long NED lasts. So glad to hear how well you're doing--may NED reign forever for all of us! Best to all. Ann
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Hurrah! Way to go Shetland Pony! And everyone else doing well!
As for me, I have now, after ten monthly Zometa infusions, been moved to a quarterly infusion so my next anything, other than a port flush, is late October. I can't believe it. My last scan was March (NED) and my last tumor markers were low (June). Next scan will be after October appointment. I almost feel normal except for some low-grade anxiety. Still can't wrap my head completely around this mess, but, like most of you, I am clinging to the idea my luck may continue. Feeling great - just wish I was looking great-hair is very thin on top (coming up on one year from chemo). Oncologist said to just get some Rogaine, friends have said take Biotine.....any suggestions? Really miss that nice curly hair that came in-even though it was thin-it looked full.
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screech:
So happy to hear about how well you're doing!!!!!!! Obviously anxiety is normal within all of us, but just keep on keepin' on! Best to you and yours. Ann
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Thanks, you guys. Teakie, my onc is great about giving me info, even calling me after hours with scan results, but she had never actually said NED to me. Boo, I'm glad to know that scare is over. You know you're a cancer patient when a hiatus hernia is good news.
What I find so strange is that my day-to-day NED life is greatly affected not by cancer symptoms, but by the drugs I take to try and stay NED. The fatigue sometimes feels like a hidden disability.
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Shetland pony- yes the fatigue is a hidden disability or SE. I look well, so folks , sometimes including myself, expect the old me. She does not exisit anymore When I hit the wall, it is with a slam!
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Exactly, Nel!
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Shetland and Nel, I am so with you on the fatigue issue. I am looking good, and tan form being outside in the sun, I have hair now and am getting out and about more. But now and again I overdo it, and wham, down I go like a skittle. Fatigue is hard to explain to other people. it is not a feeling like the normal feeling of being tired. It is a small price to pay for being alive though. So I am dealing with it though diet, exercise, positive mental attitude and trying to ignore it...not always so easy. Was away with my sister a few weeks ago and we had a busy few days...and one day I was so fatigued I wept...I couldn't help it, but it did help my sister to understand my issue, suddenly she got it, that I just cant keep going full tilt any more, so in a way being a cry baby was a good thing. Shetland's naming of fatigue as a hidden disability is a good descriptor that I will be borrowing, if that's ok.
Screech, I am overjoyed for your continued strong NED position. Best outcome ever!
Best wishes to all, Boo.
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Fatigue - - I am home this am, taking the day off. I had to travel for work last weekend, Wednesday morning event for work and then treatment day. Yep I have hit the wall. Cancelling dinner plans with a friend tonight, going to do lazy for the weekend.
Diet, exercise, positive attitude all yes. Compared to what many have to deal with, this is a piece of cake to hopefully remain NED
Gentle weekends to all
Nel
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Fatigue, yes, I definitely tire more easily. The upside? I sleep quite soundly.
Boo, it's funny how everything is relative. Hiatus hernia? No problem in the face of bc. I have some arthritis in my fingers. Of course, I was concerned about mets. I was thrilled to find out it was only arthritis. Yup, everything is relative in the face of MBC.0 -
It is helping me to hear that I'm not alone in this and that others are keeping their spirits up in spite of the fatigue. I guess it was hard for me when I realized that NED did not mean back to normal, and that I would have to figure out how to live with the fatigue. It's both a mental/emotional struggle and a practical problem. I'm beginning to see that I will feel happier and more peaceful if I stop railing against it. I don't want to spend my NED time being frustrated. I guess I have a tendency to go to extremes: either overdo it until I cry from exhaustion, or do nothing. Now I am trying to pace myself and be kind to myself instead. Also working on getting back to more regular exercise. I have begun sharing a little more with others about this. I suppose I want people to know I am not just lazy. They see me busy and active one day, but not the next day when I am on the couch all day. It's really hard when priorities collide, like when transporting my kid to activities leaves me too tired for my dance class. This week a friend invited my kid to join hers in a fun class that would have been too much for me, and I'm so grateful.
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Pacing ourselves and being kind to ourselves is so important, and something that many women need to consciously learn to do.
On another note... I had a port flush and good visit with my mo today. I showed her a very small patch of red, irritated skin on the upper left side of my chest. It had been there for about eight months, sometimes seeming to improve, sometimes getting quite irritated but never going away. Dr, S., my super mo, swung into action. She photographed it, sent the photo right then and there to one of the dermatologists, who responded immediately and made an appointment for me for later in the day. So dd and I went back to my house had some lunch, walked the dogs and then headed over to the dermatologist's office.
She took one look at it and felt fairly certain it was basal cell carcinoma. Aargh! Yes, I know basal cell is common and not a major concern but I just don't want to hear "cancer" again. Anyway, right then and there, with a good dose of lidocaine, she excised the whole area and sent it off to pathology. It didn't hurt, but the smell of burning flesh was not pleasant, especially knowing it was my flesh 😕. Ah well, just gotta do what we gotta do!
My mo visit was great. Still NED and we decided to stay on the every 6 month PET schedule.We discussed going back on a bisphosphonate but she felt that for my individual circumstances it wouldn't be beneficial. So, tonight I will be happy about my mo visit but less happy about the dermatologist visit.
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exbrnxgrl, hope the skin pathology report comes back in your favor. How often are you with the biophosphenate? I am every three months, and want to request every four or even six.
ShetLand, pacing ourselves is the way to go. I think of it as working smarter, not harder. It's my experience that doing less can often be more satisfying, because we prioritize and do those things most important, allowing lesser things to slide. No harm in that! Plz try to release yourself from worrying that others might think you're lazy. You are very much allowed to practice self care each and every single day. As an adult, you owe no one an explanation on how you spend your time.0 -
Thanks, divine. The derm felt pretty certain that it was basal cell, but one never knows. I only had Aredia for 16 infusions, spread out over two years, so have had no bisphosphonates in quite some time. She did tell me that my medical facility does not use Aredia anymore and now uses Zometa.
Good advice on pacing oneself. I have let go of guilt about being "lazy". I used to think I had to be doing something productive and useful all the time. Obviously, it's easier for me than those with young children or others in the household. Now, if only my dogs could learn to care for themselves. Time to feed them and take some Advil. The lidocaine has definitely worn off and the darn thing burns like crazy.0 -
I like the way you put it, Divine--working smarter. The main area where I was worried about not seeming to do my share is with the other parents. We cooperate a lot with kid stuff and I would normally be volunteering to do more, and enjoying it. But they are good, generous people and will understand.
Exbrnxgrl, it's great you got such a quick response to your skin issue. That will lessen the waiting and wondering time. I hope it feels all better soon.
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Shetlandpony,
Thank you! The burning has subsided a bit and the dermatologist promised she'd let me know as soon as she got the path report . Whatever your volunteer activities with kids, I am sure that everyone is generous and understanding.
Caryn
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I recently read the bestseller, "The Life changing Magic of Tidying up" (loved it). The author suggests that during the process of sorting things in the household to keep vs. what to toss, one should take frequent short breaks. That was kind of a revelation to me. And it helped. I was going through my bedroom closet and dresser drawers, making progress. But every fifteen or twenty minutes, I'd take a short break. It made me feel less overwhelmed. Before, I would just try to plow through work and projects only taking a break when I was done, and often quite exhausted. So I applied this principle of taking short breaks more often while doing yard work which is hard on my body but that I love. It helped so much to sit in a lawn chair every so often and assess what I'm doing for a few minutes and then get back at it. Just passing along the tip in case it helps anyone else.0
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Yes learning to pace oneself. As someone who used to be able to do 3 things at a time, no more. My stage 4 dx came just about 2 years ago, it has been a learning curve for me. Because I look well, in my little pea brain I was thinking "this is all a piece of cake" It has taken me a year to be honest with myself and then others. Divine - yep when working on a project, breaks, sit breathe, get moving again. Let's talk about how long it is taking me to paint my bedroom!!
This all reminds me of my Mom when she was in her 80's, I am only in my 60's so I find it frustrating - but remind myself I am here and doing reasonably well.
Awhile back when I told a friend I needed to call it a night, we were out, she said "well you don't turn into a pumpkin!" Well you know what - yes I do.
Caryn - only good news coming your way for skin biopsy. The last thing any of us want to hear is another type of cancer!
Gentle weekend to all
Nel
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Code word: Pumpkin. Yesterday I tried alternating active with sitting things: laundry, then computer, then kitchen, then TV, etc. It worked pretty well. I turned down a day trip because it would have been too long a day, but was able to go and enjoy dance class the next day.
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Well, such wisdom and good advice . Yesterday I had a great time at a world music festival. Today, I am a pumpkin. Worth it though as yesterday was such good fun. Am going to take the pacing myself advice - twenty minutes then a rest. I do tend to start something and push myself to finish it and the result is a job not done well and me in an overtired mess. So Mrs Divine's working smarter tip is something I taking on board in order to avoid pumpkinisation.
Cary, truly hoping the news in the report is good. Hope you are finding things to do to keep busy and distracted. I'm just so glad that you showed the skin patch to your medical team, and now action has been taken. Hopefully the excision will be all that is needed, so no more treatment. Do let us know as soon as you hear anything.
Boo
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Glad the suggestions are helping. Another thing I learned, way before bc, was that at the end of the day, to reflect back on things I'd done, instead of those things i didn't have time to get to. It really required a conscious effort on my part and sometimes still does, to do this. Too often, I'd fall asleep with that list of things in my head I didn't get around to doing, until I had an epiphany one night and realized it was a way of putting myself down. I started switching it out by saying to myself, hey, good job, you did this, that and/or the other things. It's just another take on the glass half empty/half full.0
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Having just returned from two weeks in the deep woods without phone or internet, it gave me a lot of time to sit and think, especially around a mesmerizing campfire. I've been worried about a reoccurrence of bone mets due to hip and shoulder pain for several months now. My next scan isn't until September but rather get up every morning and "worry" I told myself I'm going to take in the beauty of my surroundings, enjoy the moments God has given me and "worry" when there's really something to worry about. This approach might be viewed as a trip down the River Denial, but it helped me to feel less anxious and more at peace. In other words, I took a vacation from worry and anxiety.
Now that I'm back I hope I can continue this "vacation" and wait to see what September's scan brings. In the meantime, I hope you are enjoying the summer and your next scan(s) brings many dances with NED.
Amy
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AmyQ, what an excellent approach: vacation from worry and anxiety.
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And when that doesn't work, there's always Ativan right Mrs D?
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