Why was I stronger DURING treatment than I am now?
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Lili Ri - Delighted for you but WHY do we have to fight so hard for what should be automatic? Hoping these next biopsies (yuk) give you answers.
I decided I want answers about why I was refused recon, as have heard its being offered routinely now......so I went off to get myself an appt with my surgeon........did not manage to achieve this but was asked to call back next week to get one......... I came away trembling inside, tearful, very wobbly, and feeling traumatised again, even had a panic attack driving back in the car......all I did was speak to the nurse about getting an appt and she was v kind and helpful so nothing happened to upset me, quite the reverse, but it set me off....even now I am still churning inside........disappointed in myself.....its four YEARS now, wish I was not so sensitive
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Lily55 - I often have wished I wasn't so sensitive. I totally understand. But, having been through all that I have the past 3 1/2 years and much of what I have been through during my life makes me appreciate that sensitivity. I have met so many who seem invincible, stoic and "strong" and I would not trade my sensitivity for that. It is not to say those aren't good traits but, I would say that without compassion and sensitivity those traits allow people to be indifferent to their own lives and others lives. And being indifferent to me is the saddest state of all.
So I get what you feel. I get exactly the same way. Just hold your own hand and take the next step, or make the next call and advocate for yourself and recognize that doing so feels difficult to you but that you are doing nothing wrong. In fact, you are being your own best friend and advocate. Something you would undoubtedly do for anyone else you love.
LiliRI - I am glad to hear that you are now going to get some clearer answers. It is crazy how much we have to push to have doctors work together but it is crucial to getting the best care. Keep pushing and advocating for yourself and know that if you need someone with you I live only 4 or 5 hours away and am happy to be there.
Love all you ladies so much.
Julie
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Thanks Julie, had terrible nights sleep last night and still tearful now.......
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Lilly: It is so difficult to advocate for medical services when we all are exhausted from BC. The tears are probably the way we let go of our frustrations. You are entitled to reconstruction! It will make you feel better. I am frustrated that I only had Stage 1 of DIEP due to all my other medical issues. I am praying that you are approved for reconstruction!
Julieho: You areso kind to offer to help through Monday's 2nd round of lung biopsies. My parents will be bringing to the appointment.
I am so nervous about Monday, but today is a rest day for me!
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good luck tomorrow Lili-ri, hope you get some clear results this time. Xxx
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Lili-Ri - Yes, good luck tomorrow. I'm so glad things are moving forward and that you'll finally have some answers. Either way, I'll toast you like its 1999. I'm thinking of you.
Janet
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Lili-RI in your pocket for tomorrow.
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Thinking of you Lili-ri.......x
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Lili, I'm thinking of you today and hoping the biopsy is done and negative for cancer. I'm also thinking of the rest of you who continue to have such a hard time - Lily, Smart, BB, and anyone I missed. I relate to your losses and frustrations and fatigue. So tired of being tired.
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Lili - Me too I am thinking of you too and know how hard this must be for you.
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2tabbies, right back at you. Thank you for the kind words.
Lili...I hope you got good news today. Sending healing thoughts you way.
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Lili-RI - how did it go? Have been thinking of you. Sending love and prayers to you and everyone else.
Julie
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LiLi Ri - sending you a hug! That doc was an ahole. It sounds like so many of our docs have been that way. I really don't understand them at all.
Lily55 - STOP THINKING ABOUT CANCER?! WTF?! Aren't we SUPPOSED to be watching for any symptoms of recurrence?! I'm so pissed at your doctor. Once you've had cancer, that will hang over your head the rest of your life. Hopefully it will fade into the background, but it's always there and it's always possible for it to rear it's ugly head again.
I had a bad experience with my doc this week. I think I broke another rib (#3) and I've been in horrible pain, so much that my usual 4 advil isn't helping like it used to. I've been taking oxycodone as a last resort. He scheduled a bone scan to look for cancer, but wouldn't give me a refill of the pain killer. He gave me the whole, "We need to find the cause of your pain, it will only mask the pain, they're highly addictive drugs, blah, blah". I told him the Advil is upsetting my stomach. Apparently he either wants me to be in pain or tear a whole in my stomach from NSAIDS, not to mention liver failure. I'm currently using a bottle of pain killers I received last Feb, but I will be running out. I know the government is cracking down on docs over this whole prescription drug abuse thing, but I'm not a freakin addict and I don't appreciate being treated like one. This is legit pain. I was thinking, "Is this because Prince died?" (RIP sweet Prince) My onc has been dealing with me for the last year and a half and by now I think he'd know whether or not I was hooked. Besides, I turned down painkillers repeatedly during my chemo. Actually, they offered my everything during my treatment, but now that it's over, they've just kicked me to the curb. I have to somehow pick up the shattered pieces of my life now and cope with this wrecked body. They're the ones who gave me the treatments that wrecked this body! Yes, it saved my life, but there is a price to pay when you go through something that intense. He ended the appointment with, "Hopefully it won't be cancer and we'll get you to the specialty that can help you." HOPEFULLY?!
Sorry for the rant. It's been bothering me for days and I just needed to get it off my fake chest (lol)
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Rabbit...sorry you are feeling so down. IMO you are having symptoms of PTSD. Its actually very common. Also the tamoxifen and lack of estrogen may be contributing factors. I urge you to see professional help. Start with your MO and then maybe a mental health professional. You shouldn't have to suffer like this. You and every other woman on this forum are strong women! Good luck and keep us posted. Please feel free to private message me if you want to talk more....
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I survived another round of lung biopsies BUT the whole process was like a day in the spa compared to my medieval experience in Boston. Everyone was nice and concerned that I was comfortable. All staff were wonderful. The radiologist (aka Bradley Cooper) came to me and explained every detail with respect. Then, at the time of my procedure, one of the CT scans broke down. I was OMG, will I have to wait hours like in Boston? Nope, the doctor and assistants packed up everything and we headed to the ER. I was completely comfortable (in light of the procedure). Both the Dr and nurses talked me through the whole procedure. At the end, the Dr said he did retrieve enough tissue to perform the pathology.
I will have results this week.
All of us deserve the same respect and compassion throughout ALL of our treatments!
Thank you for all your prayers! It worked.
Catlady, I have been on and off pain medicine for 3 years. My MO never prescribed it (nor offered), but my Internist has....he understands the issue of pain and cancer! Try another path!
Love, LiLi
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No cancer. I received the results last night at 6:00. It's funny everyone thinks now I am all better. I feel numb. I need time to process. My body is so weak. Any advice? LiL
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LiLi,
This is a wonderful result, however I do understand the numbness you describe.I think it is going to take a while for you to process it all again.Don't rush it or be rushed. You have been through the terrible ordeal of waiting, wondering, watching if there cancer was there..... it's mentally exhausting. I am pleased you were treated well at the hospital (doesn't it ,make a big difference?) but physically it is so tiring too. Give yourself time to recuperate and rest. Don't see people if you don't have to or want to. Enjoy the things you enjoy, and find meaningful however small..... and eat good nutritious food, rest and do not allow excessive demands to stress and frazzle you, Say no if you can, (I know that an be difficult, if you are working). And accept lots of love and tons of relief from across the pond!! xx
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Lili-Ri,
No cancer! That's wonderful.
My only advise I have for you is to let go of your expectations, and let go of outcome. You will process and you own pace, and it may not feel the way you expected it to. Allow yourself to be tired, and to be happy, or just relieved. Whatever feelings that come to you - whether they are good or not-as-good-as-expected, just accept them and live in it without resisting. I find that we're always expected to feel a certain way, but that never happens. Mental healing is such a crazy non-linear process. And I agree with Winter, just ask for what you need. Say yes to the stuff you like, no to stuff that you don't like. Let yourself exhale. And rest.
i'm so happy about your result
Janet
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Lili-ri - YEAAY I am so pleased for you, wonderful that you were treated better and that there was no cáncer.......you be your own guide and take all the time you need.
I am getting increasing bone pain on my flat side in sternum and on ribs....and today have not even bothered to get dressed or showered or do any of the things I planned, it all just feels like too much. I am sleeping in til late too and generally feel like whats the point.................and does the feeling of being crushed front to back by a vice EVER go away?
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Lili-RI - so glad to hear it is not cancer. I also so understand that it leaves you feeling sort of dull and confused. I so know what that is like. Of course you are relieved but at the same time you have something wrong and whenever I hear "no cancer" I always feel like, well, the shoe didn't drop this time...
I hope as it sinks in and as you hopefully improve it will actually feel good to you.
Lily - I am so sorry to hear how difficult things are right now. It is such a struggle and I can so relate to sometimes feeling like it is too much to continue to care about daily life. Glad you can share here and know that you are heard, understood and that hopefully in time this will change for you.
Sending love to everyone.
Julie
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Lili- I am so happy for you on your results. I think I understand the numb feeling. I hope you start feeling a little more hopeful & resilient soon.
Lily- that sounds miserable. I hope your pressure/pain eases soon.
My family and I did the Race for the Cure yesterday. It was a beautiful day here, and there were a lot of people. I felt more uplifted this year, and enjoyed myself. I do feel more like myself these days. Both physically and mentally improved. We went to brunch after, and that was really nice also.
Perhaps all of this positivity is from having a few days off of work and planning to start my garden this week. We got some bigger raised planter boxes & I have been getting some flowers for my pots. Last year my garden really brought me joy. I hope it does this year too.
I wish peace and tranquility to all of us. We all deserve some calm and relaxation.
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Hi, I read this board once a week but it's been awhile since I posted. Like many others here, when I have medical problem, my mind jumps to cancer. I have been having a number of UTIs recently. But this was accompanied by pain near my ovaries and pain in the "flanks" in my lower back. I need to have a contrast MRI to look for tumors. Then in two weeks(to let the bladder infection heal, I get to have a camera put into my uretha.
I am scared it is bladder or kidney cancer.
In the meantime I have another sinus infection brewing. Damn the chemo I had!!! I think it has weakened my immune system. Any books anyone can recommend for build up your immunity?
I'm not unglued. It just nags at me. I turn 65 tomorrow, and I feel that I now have a second career--visiting doctors.
Thanks for reading this limping post,
Peggy
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Hi Peggy,
I have been struggling with recurrent UTIs since September. I saw a urologist and had CT scan and cystoscopy (the camera thingy) in November to rule out cancer. Everything was fine. My urologist (love her!) shared that recurrent UTIs are common after chemo. She recommended that I try to eat a diet recommended for Interstitial Cystitis (IC) patients, take a probiotic and D-Mannose supplement, and drink tons of water. The IC diet is boring, but I have to admit that things have settled down quite a bit.
My WBC is still low so I get sick easily, and things like seasonal allergies turn into sinus infections and knock me down. To keep allergy induced sinus infections at bay I take a daily Claritin and use Flonase. So far, I haven't had a sinus infection this spring.
I read a little about ways to boost immune system. I didn't find much definitive advice. My MO says it takes time and for some it takes more time than others. For what it is worth, here's what I am trying: manage stress, practice good sleep hygiene, eat a diet high in whole foods, and exercise. I have my 3 month follow up in 3 weeks. I'm hoping for better numbers this time.
Prior to BC I was rarely sick, never took meds, and had the stamina of the energizer bunny. Not the case these days. Makes me crazy, but I really try hard not to focus on the negative and scary stuff. It's almost impossible when I keep getting pushed down from behind. Good luck with your upcoming tests!
Amy
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catlady, I'm furious on your behalf. They let the pendulum swing too far in one direction on narcotic pain meds. Now, they're pulling it too far in the other direction. In the articles I've been reading, they seem to be saying that the doctors will be relieving our "suffering" even though we'll still be in pain. And they'll be relieving our suffering by commiserating with us. WTF?? A pat on the hand and "There, there. I'm so sorry." is supposed to substitute for actually taking care of the pain? This is just total BS. Makes me furious. Like you, I'm not in the habit of taking something when I don't need it. Even after surgery, I might take narcotics for a day or two before switching to NSAIDs. But damn it, if I'm really in pain, I want to know that the meds I need will be available. Your rant is fully justified.
And now I have a sorrow to unload. A friend of mine with bc has been in chemo hell since September. She just had a mastectomy only to find the chemo did nothing. I don't know what type of bc she has, but they're looking at clinical trials as well as an oral chemo agent. I hate this damn disease.
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I did use Dr. Serletti for my reconstruction. I personally feel in retrospect that he is overrated. I am not happy with my result and will be going elsewhere for a revision. My sister went to Sloan Kettering and they did a much better job on her from a cosmetic standpoint.
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Hi everyone,
I wanted to say hi and see how you are doing Lily and LiliRI? 2Tabbies and catlady I am in a terrible situation with chronic pain and am finding it near impossible to get support any longer from my doctors. I fully understand the issue related to narcotics and addiction. I also know that I had a VERY high tolerance for pain prior to 6 surgeries for breast cancer and a year of chemo and two diagnoses of auto-immune disease (likely as a result of being on high dose antibiotics for all the post-op infections I had).
Now I have to be careful not to "boost" my immune system because once auto-immune disease is diagnosed it is more and more likely that my immune system will attack my own body, which is what it is doing now.
I saw a show last night on cancer and chemo and it talked about how chemo causes severe inflammation, often with brain cancers this is why chemo can be effective on the cancer but cause debilitating and deadly side effects due to the increse of inflammation. My chronic pain is definitely inflammation related, and I have developed lymphodema on my left arm, trunk and breast and now on my right leg and torso. (That is likely due to my having DIEP and the incision along my abdomen which has gotten more and more inflammation as time goes by).
I have been to multiple clinics and psychologist to manage my pain, I do meditation, exercise when possible, therapy, acupuncture, lymphatic massage and lots of mind/body exercises. These all help with my pain but without taking Norco I can not function well. I worked to get off my medication this winter and was able to for several weeks but the anxiety and pain were too much. Going back on has been so hard because I was able to start go on a much lower dosage and fewer pills daily because the break in taking medication helped my tolerance of the pain meds. But, in a short time my body became as tolerant to the drugs as it had been before my break. I have been able to stay on a lower dose and fewer pills but have not been able to live comfortably. I also find that chronic pain for me is not like treating acute pain in the past, such as surgical pain. With surgical pain I took the drugs as perscribed and stayed "ahead" of the pain and reduced the mediation as the pain improved.
With my chronic pain it is not the same every day. This winter I helped my daughter out as much as I could with my 2 1/2 year old grandson. They live across the country so it involved a lot of flying, which is hard on my body and fluid build-up, it involved a huge increase in my level of activity and I would have to take much more medication to keep me functional and helpful while caring for him. I would then try to reduce my medication when I would return home, but because they perscribe a 28 day supply and the same medication and dose for each day regardless of how my body feels I would have to take much fewer pills than I needed to function normally at home. This causes depression and makes me often literally not able to do my basic life stuff on the weeks where I am having to take much less than prescribed because I took more than prescribed during the really active days.
I have talked to my doctors about this repeatedly. They keep saying they can only prescribe a set amount of pills for me to take daily and if I go over the daily dose (which is always well under the maximum of pills anyone can take per day due to the tylenol content) I have to under treat my pain on the other days. This constant up and down and feeling drained from pain is really not working for me. It is hurting my releationship with my husband and my life is literally unmanegable during the reduced pain medication days. I just want to take what I need for basic pain management for most days and have additional pain medication for days that my body becomes overly stressed such as taking care of a 2 1/2 year old. My doctor said I should put my health first and maybe not do so much with my grandson. Honestly this broke me. I feel like my treatment has caused me to lose so much of what I loved in life, I had 5 children, 28 animals, huge gardens a fulfilling job and I love, love, love to take care of others and help with children. To say that I should sit around all day "taking care of myself" by being less active, not caring for my grandson when I have the chance makes me seriously not want to live.
I am aware that I have likely become dependent on these pain meds, my body has a hard time coming off of them, but, they are also very effective and when I take what I need each day, some days 8 to 9 pills and some days 5 or 6 pills I really manage very well and have been able to return in large part to a life I love. When I have to take way less than perscribed I suffer and also become anxious and depressed that my life is now dependent on these stupid drugs. I would love to be off of them.
I just needed to vent and see if others were struggling with this. I do utilize accupuncture and other things such as meditation, which both help. The difficulty with accupuncture is that I can't afford to do it two times every week at $80 out of pocket each visit. The past three years has eaten up over 40,000 of our retirement money on co-pays, co-insurance and out of pocket expense for physical therapy, acupuncture, mental health therapy and the costly drugs and surgeries.
If I could go to accupuncture every other day I think I could manage my pain much better but that is not possible financially or practically either. I try to go once a week and that helps but even that is becoming financially too much, especially because I also need mental health therapy and should be getting treatment for my lymphodema but have not done that because I can't afford any more co-pays. Ugh, I am done. Sorry to have babbled on so long.
I want to be grateful to be alive, to have even the "luxury" of having to struggle with the cost of care and the cost of pain management, vs dying of cancer. But, I also think that it is very, very hard to live this way.
Much love,
Julie
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Julie,
I feel for you, I can't even begin to relate to what you are going through. However, I'd like to throw this out there just in case it helps. You said inflammation seems to be a great cause of your issues. Have you made any changes to your diet in regards to inflammation? I've been eating a low carb diet for a while (keto) and doing lots of reading on the subject. Everything I read points to sugar as contributing to inflammation and causing a lot of health issues for people. If you haven't already, you might want to look into it. Perhaps a dietary change can help some of your symptoms.
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Hi ORgal,
Yes, I should have mentioned that. I did a three week cleanse last year that eliminated all sugars, gluten, dairy, some meats and other things. I did for the first time since chemo feel like my energy was dramatically improved and my mental calarity came back along with a big improvement in my mental outlook. It did not help with pain management per se but I had such positive results and stayed on a modified version of this "clean diet" for the next several months. My summer was the best one I have had since being diagnosed and treated. Over the winter when depression really set in I sadly returned to eating worse and have ordered the cleanse again and plan on trying to maintain the diet better. I really stopped craving sugar after three weeks which was the most remarkable part for me.
So I do know diet plays a huge part in this for me. I was still on the higher dose of pain medication and in fact also had a pain patch last summer. It was in the fall that I wanted to try to reduce my pain medications that a lot of the trouble began.
I am hoping that at least I have the same improvement I had last year on my mental clarity, overall energy and reduced cravings for sugar and "bad food". It is a crappy cycle that when I crave sugar and eat it I feel worse. So there is a lot to the dietary piece.
Take care,
Julie
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Good luck Julie!
I believe my diet has helped me get through a lot of this BC business.
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julieho, how about medical cannabis for pain?
I am back on the merry go round, 2cm irregular lump found that was not there 11 weeks ago., it hurts and feels just like my lost breast did........node felt in underarm too...... Doctor said wants it investigated and to bring my mri forward.........I really am not strong enough to go around this again. As its appeared so fast i hope its not cancer but there are indicators otherwise...
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