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Good morning and I am so very sorry to hear that you are in such discomfort (pain)!
I can give you an update on my ultrasound, "stable" which according to the surgeon is a good sign. The ultrasound can not distinguish between scar tissue and cancer cells. So at least it has not increased in size. When I told her that I had not seen or spoken to the oncologist since July, her eyes got wide, and said that she would get me another oncologist to see, to have a better care team. I have that appt next Tuesday morning. Finally, after many days of feeling so horrible, I feel pretty good now. I met with my support group yesterday and that went very well mostly.
Everyone was sharing their treatment plans and how they were feeling, The moderator included a 48-page document on foods to eat, recipes and self-help for eating, side effects, etc. I have not really looked at it yet. Don't know if I will, maybe.
Next week will be busy with appts each day. I will update and keep in touch everyone!!!
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I feel for you! I had triple negative also but they caught it early and started chemo right away. I had seven rounds of strong chemo and 19 rounds of radiation. I am glad I did. I am now cancer free. I was 76 at the time. I have never heard that Alzheimer's is related to any kind of cancer treatment. It is an individual decision, and I wish you all the best. Sunny
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Please find at
tached the Cancer Eating Hints! Hopefully it will open and you can download it!
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Good morning ladies and gents
My first question of the day is to Claoh: Are you all right? Not hearing from you makes it hard for me. You and Marla both mean a lot to me as well as this board. Trying to get through my troubles while hearing from y'all makes it a lot easier on me. You both are great encouragers and I really appreciate both of you. Thank you for being there.
So my last radiation treatment was Friday. I now get one week off and then begin chemo treatments again. I've also been set up for another PET scan and brain MRI as well as an echo for my heart. I also have a couple MRIs setup for my pelvic area. These are to make sure that the radiation treatment worked. I see the orthopedic surgeon this Friday so he can see how well my hand is healing from the thumb surgery I had back at the beginning of July. All in all it's going to be a very busy time for me.
Marla it sounds like you have been busy too! I'm glad that you are getting a new oncologist. I can't believe that your previous one hasn't seen you since Jul,y! I would hope that your new one sees you at least once a month and can also take a look at your medications to see if she can do something about the nausea that you have been dealing with. That shouldn't be so rough for you as well as tiring. I don't think it has to be that bad myself personally. But that's just for my own experiences.
Claoh I miss you on the boards and hope that I did not blow you out of the water by asking the quality of life question. I would really like to know how you're doing and if you found out what that was on your breast.
Don you should visit us more often on the boards and let us know how you're feeling as well. We all would like to hear from you as well as all the other partners involved in this. (Yes I know he is my husband but I like to write it through the boards so that everybody knows what's going on).
Y'all take care
Pat
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Hi Everyone. I am back. Was on a trip to Missouri to see my son and his family. It went well and all is good.
When I had a meeting with my nurse last Monday things were up in the air about the cyst/boil/whatever on my breast. Apparently there are two avenues: Hospice will take care of wound care should this ulcerate and become an open wound; but will not be involved in any radiation or such to try to minimize it. To do that I would have to leave hospice and go back into palliative care. My hospice doctor was going to contact my former oncologist to discuss this and I also gave them the name of my former palliative doctor. Asked my nurse to please keep me in the loop prior to any decisions being made as I don't know which way I want to go. My feelings are that I wouldn't mind talking with a radiologist to get their view, but not sure I want to leave hospice to do that.
I looked up radiology for cancer on the website some more and see where radiation treatment can actually cause ulcerated open sores so that was not encouraging. I don't want to encourage ulceration of my present situation.
I am currently not taking any over the counter pain killers and take hydrocodone for pain. Supposedly this is better for my liver/kidneys. It is an addictive opioid but I'm on a very low dose of 5 or 10 mg every six hours and seems to be doing the trick for right now.
A callout to Sunny: Thank you for sharing on our site and encouragement. To read your were 76 and conquered the TNC was very pleasing. Alzheimer's really has no connection with cancer, but it was a big factor in my decision as it is strong in my family and just another facet of unknown that weighed into my choice.
Sadie, was very sorry to hear of the pain you are experiencing right now and wish more could be done for your pain. Statistics can be so scary as we go through this. We want much better for ourselves, and press on to be the ones who beat the statistics. As you both state, the love from family is what makes this battle bearable.
Marla, I look forward to checking out your attachments. I also want the time with my family to build the good times they will remember. We take so much for granted until faced with mortality. This does make life more meaningful to some extent. I'm curious, if you haven't seen your oncologist in such a long time, which doctor to you see to go over your breast ultrasounds? I guess I always thought it would be the oncologist who reviewed any progress.
take care and hope to hear from you soon.
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Thank you Sunny.
Sadie, was thinking of you upon waking this morning and do have a question which may be rather tough.
We first met with you sharing the experiences of your Dad and Sister. Where are you on your current road compared with what they endured?
Heart felt prayers to all of you on this journey.
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Claoh thank you for your prayers. I really feel that they help me even as they have from the beginning.
I went back and re-read those first few pages about what I had written in them concerning my dad and my sister and my brother. I also noted that the fears I had back then has changed. My chemo now is nothing like the chemo that I had back in 2013 when I incurred a lot of bodily damage from it. I also noted that my journey is nothing like their journey. I still believe that my sister would still be alive if she would have gone to the Cleveland Clinic instead of her doctors in Pittsburgh. The Cleveland Clinic has state of the art equipment and knowledgeable doctors that can catch and destroy any of my metastasis before they get out of hand like they did for my sister. My dad had none of this available to him but even so he didn't want to go to any doctors until it was too late. My brother found out when he went in the hospital for pneumonia that he only had a couple months to live and decided not to have any treatments. As you can see each journey was different and all of them are different than my journey. Yes we all have cancer but the way they went about dealing with it was as individualized as ours is. The end it seems was all the same with each of them in incredible amounts of pain. Dad endured it because in his generation you were supposed to be tough and strong and so he tried to be that way even to the end. My brother had a morphine pump where he could press the button and get a dose of morphine when he felt he needed it for the pain. My sister had three or four different types of pain meds that she took to help her through her pain. I know that I am not at that point yet. My oncologist from my 2013 bout of cancer taught me that pain has levels and that your brain will categorize pain so that the one that hurts the worst comes to the forefront while all the others seem to go away. Once that worst pain is dealt with then the next pain comes to the forefront and all the others seem to go away, and so on and so forth. So my breast pain seems to have gone away because of the pain in my sacrum and lower back and tailbone. This pain registers into a high eight / nine on the Pain scale. I have to use ice on it continuously as well as doing my pain meds. I'm not sure and haven't said anything on the boards yet but when I took that hard fall I think I may have possibly cracked my tailbone. Driving the 3 hours back and forth to the Cleveland Clinic on bumpy roads for radiation treatment probably aggravated it to the point where it's either cracked worse or possibly even broken. And I'm sure the radiation treatment itself didn't help matters either. All I know is that it really really hurts. Add to that (and it doesn't happen all the time) when I set my feet down onto the ground it feels like there are 50 knitting needles being shoved up through the bottom of my feet. That has progressed to my shaking all over as if I had a seizure even though I know it isn't.. This knitting needle / seizure only lasts for about a minute. My radiation oncologist is already on it and has ordered MRIs of the pelvic area. At that time I had only mentioned the knitting needles and the other part had not happened yet. I really don't know what's going on with me but I think I'm in the right place to find out. I messaged him about the seizures so he should receive that on Monday (today). This has never happened to me before. But I also know that the sacrum is very close to a lot of nerves. I am not a doctor so I'm not willing to put two and two together until they figure out what's going on. My sacrum could be sore from the radiation as the type of radiation treatment was high dose short burst for a minute. And my lower back has had problems for quite some time and in reality on the Pain scale it's just noticeable but not causing me too much pain at this time. It's mostly in my sacrum and my tailbone.
Ha ha, got sidetracked on that one. :)
So I'm not sure what you're looking for Claoh. These are definitely not end of life pains. That's why I really haven't mentioned any of this before. But yes, both the Cleveland Clinic and I know that they are simply doing maintenance to keep me alive as long as possible along with trying to keep some quality of life for me. We all know that it's going to end someday but we are all hoping that there may be a cure discovered during that time.
Pat
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Morning ladies and gents
So as it turns out my radiation oncologist INSISTED that I immediately go to the emergency room to find out about the pain I'm having down in my tailbone. After having a CT scan it turns out that I actually do have a hairline fracture in my coccyx. My husband bought me a cushion that is specific for the fracture. It's a round rubber donut that looks a lot like the ones you get for swimming pools but is a lot heavier rubber. It works really well and has taken away some of my pain. There is really nothing else you can do for it now except wait for it to heal on its own. Just one more thing to make me realize I'm not invincible haha.
Okay enough about me. How are you two doing? Claoh how is your lymphedema doing? And Marla have you found a new oncologist yet? I still say that's not right to not have an oncologist see you at least once a month. Hopefully your new oncologist will come up with better meds to handle your symptoms after chemo. I'm so glad that y'all are able to go visit family. My husband and I are planning a trip down to Georgia soon to go see our daughter. I just need to let my oncologist know that we are traveling out of state. The trip is 14 hours long by car. I'm hoping my donut will really help to deal with bumpy roads LOL. I'm really excited and can barely wait to go see her!
Okay I'm keeping this short today lol. Y'all have a great day today! Let me know how all of you are doing. It makes me feel a little selfish when I'm filling up the boards telling you all about my issues LOL.
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Hey Sadie, was just thinking about you again in the middle of the night and felt I wanted to connect with you. I've been mulling over your statement "I'm not sure what you're looking for Claoh". I believe I was trying to see where you were in relation to those end times with your family members pain. I am so glad to hear you do not relate to your pain being the pain at the end, and I am reminded this morning of your "fight song" to "take back my life song!"
Also glad to hear you got the "donut" to help with your pain" and plan a trip to Georgia to see your daughter.
Saw my nurse today and even though it's slow, they are researching and talking about doing some radiation on my sore spot on the breast. She also mentioned they don't think I'll have to be out of hospice to receive this. Hope to have a definitive answer in a week or so. It is still where most of my pain radiates from, and I am still hoping to prevent it from becoming an open wound. Just actually seeing a radiologist would give me some piece of mind.
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Hi Claoh! Are you sure that your thinking of me in the middle of the night wasn't a nightmare? 🤣
All kidding aside, I tend to believe that my family will have their own paths as far as their grief is concerned. Some will stay "strong" for the families sake, others will go into a deep grief, while others will just consider it to be another day, taking the view that such things happen as a part of life. And I hate to say it but some of them will be wondering if there's anything in the will for them even as they get ready for the funeral service. This truly is a question that I can't answer. People take death in different ways and with a variety of emotion that sometimes even surprises me. Emotions run high at this time and anything can happen. I know this is not an answer but it is the best I can do. My daughter has excused herself from the funeral which I told her was fine because for her she would rather remember me alive. Should see however change her mind for the sake of my husband then that would be fine too. Either way she has my blessing and she has my blessing as my daughter and best friend. Besides haha, I won't be around to care LOL. It won't matter to me and actually it just shouldn't matter period. Sometimes we get hung up on the silliest little things. We can carry those things through life or we can let them go and be free.
Haha, there I go getting sidetracked again!
Marla your mighty quiet! Are you okay? We miss you on the boards when you're not around including your jokes. Please let us know what's going on. I join Claoh in her prayers for you and am in agreement that you find peace.
In fact I pray that all of you find peace in this moment.
Claoh I wish hospice would speed it up for you. I think of an old saying of "molasses running uphill in winter". I wonder if there's a way for you to try to get them to consider this a little more important than something that needs to be done in a week or two. And I agree talking with the radiologist is very important before you go in for treatments. Just me. :)
That's it for me right now. I've got a few appointments in Cleveland Thursday and Friday but I will try to get on the boards as I can. Y'all be blessed and love on your families even as I love on mine. :-)
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Got a call this afternoon that I have a consultation with Radiology in Tampa for next Wed. at 10 am. Glad to actually see someone, but also sent a message to my hospice nurse concerned that there may be some infection in that breast. Warm to touch and quite red around the raised area. Hope to hear from her tomorrow.
I also do need to make some concrete plans for my demise. Think about it, but procrastinate and that's not the best thing. Thanks for reminder.
Have you made any definite plans for the trip to Georgia?
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Ahh dang girl you need to get some antibiotics in you ASAP. I started down my road (like I said) with my one breast 3X the size of the other. It just exploded overnight to be that size but it was also very warm and red. My OBGYN gave me antibiotics and it helped a little bit with the warmth and the redness but it didn't bring down the swelling in my breast. It only brought down the swelling in my arm but even that was temporary because within a few days it swelled right back up and I was diagnosed with lymphedema on top of triple negative. Anyway you don't want that getting away on you so make sure your hospice takes care of you ASAP.
I'm curious as to whether the radiologist is just going to do that spot on your breast or if they're going to do your whole breast plus your lymph nodes on that side. Don't forget that when I had radiation done on my sacrum it was to kill the cancer to keep it from spreading. Hence the reason for 10 days straight of radiation. Interpolate that to your condition and you will see that could very well happen to you. Is that a bad thing? You already see what I've gone through but to me I think it would be wonderful if yours was only in your breast and radiation killed it all off. The second thing to remember with radiation is (as I said before) it's easy to get a radiation burn similar to a sunburn. Pick up some CeraVe to rub on after the radiation so you don't get blisters or burn. I think I left you with a lot of things to think about but it would be awesome to me if they could just zap it out of you and you would live a long and happy life. Again, just me. :)
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I'm wishing you all well! I had a colon sample test yesterday and it came back positive. I'm pretty sure it's just from a hemorrhoid but having just gotten over breast cancer, it freaks me out a little. A gastroenterologist is supposed to be calling me in the next few days; I see a colonoscopy in my future. I'd appreciate prayers, as I pray for all you ladies. Thank you. Sunny
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Just got off the phone with my nurse. Doctor said this was "just what cancer does", and there are no antibiotics for it. So, hope to get answers next Wednesday and possible radiation treatment. Will take those questions you addressed along with me Sadie. I told my nurse that I just need to know what to expect - what is normal on my journey and it does take some anxiety away. Again, no regrets for my decision but does make me consider getting all my ducks in a row. I know I procrastinate!!
Sunny, you mentioned you were 76 at the time of your cancer treatment. What is your age now? Did you have colon sample because of bleeding, or routine? I also did a colonoscopy several years ago because of spotting and it did turn out to be hemorrhoid issue. We will be praying for you and thank you for your prayers for us.
Marla, we miss you!!!! You warned us you were loaded with tests this week. You are constantly in our thoughts!!
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