Why was I stronger DURING treatment than I am now?
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Lily, I'm so sorry to hear this. I hope its not cancer.
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Lily - sending you love and hope you have answers very soon.
Thinking of you.
Julie
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Lily, I would feel the same way if I had a recurrence. If you can, distract yourself,, focus on the present moment, and know that we are all behind you.
Hugs,
Peggy
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Lily55,
Please let us know how you are when you can. This cancerland is a tough place to live.. x
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Yes it is a really tough place to live and some days I think I am failing miserably.......then I think of lovely women on here who are no longer with us and feel horribly ungrateful as many of them would happily swap with me I am sure.
Had my ultrasound done today, would not say it was the most thorough one I have had done but it was with a high definition machine and he said he cannot see any lump or anything sinister.......I know you will all shout at me but part of me was pleased and the other half almost disappointed. I had decided that if it was cáncer I was not going to have any treatment and therefore could see a way out of this horrible struggle I feel trapped in. I have increasing pain in centre of my chest and breathing in is pàinful and I have not had a single comfortable or pain free day since radiotherapy, 3 years of constant pain - discomfort is a long time. Its summer here and everyone is on display while I am still constantly tugging at my clothes everywhere I go to avoid being seen as deformed. So so tired of all this, and quite shocked at my reaction today.............
I have told Onc about pain for last appointments and he says "its normal", ..........I cannot take anti inflammatories due to other health issues so he has given me nothing as paracetamol etc do not work...........told surgeon about pain but she noted in file that my skin was in good shape (I pointed out it was because I had done two fat transfers under it to make it healthier as it was awful) and has sent me to rehabilitation but I could wait months for an appt there. Meanwhile I have more and more pain and the more I exercise or even just lift my arm the worse it gets......
I have it on my medical file now that I feel cheated and deceived by their not reconstructing me and am waiting for an assessment somewhere else to see if they can bring forward a surgery but its not that likely.....
Have now made myself an appointment with my general doctor to see if i can be taken seriously re pain, so sick of this......oh and I bought a bottle of gin too as that helps, but I am not supposed to drink spirits for other health reasons
Moaning Lily checking out
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Lily: I am so sorry for all the ups and downs these past couple of weeks. None of the MOs ever prescribed pain medicine, but my PCP did prescribe pain medicine. It truly helps when I take it with ibuprofen. Please reach out to a Dr who will be empathetic to your needs. Hugs!
So I am still not "buying" the lets wait and watch the 4 centimeter mass. No pathology has been released. The Dr wants to wait another 4 months for another scan SO for whatever reason I dyed a piece of hair PURPLE this week. My right lung still partially collapsed with fluid.
I see my PCP this week and I address the issue with him.
Sending hugs to you all!
Lil
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bad day today serious pain to right of sternum on operated side, burning and stabbing, cannot breathe normall
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Hello All!!! Ii haven't posted in a hot minute but this really struck me. I was diagnosed in 2012 with Stage 2b invasive ductal cancer, 8/10 positive nodes. I was a warrior during chemo, still running duathlons and long distance cycling. Now 4 years out and I am a basket case now. I still am hypervigilant about recurrence. I think about it most of the time. When will it happen?? I am just grateful that I have recognized what it is. It is PTSD. I have been terrified that every little hangnail is cancer. All so far have been NED. I have been going to a therapist for a few weeks and already feel better. One of the comments suggested that we are so strong during treatment because we have to be. As time goes by, the onc visits start to be further apart. And the reality of what has happened to you surfaces. Every day that passes, I have been alive one day more.
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Bosumblues.
I did that all day too and it's raining loads. I spend so much time doing that. Do you think it is depression?
Lily, sorry to hear about this pain, and the breathing problems. Do you think you need to see a doc?
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Bosumblues and Wintersocks, I didn't realize how depressed I had gotten. I am 4 years out. NED! Thank you, Jesus! I wonder how the chronic stress of BC affects your risk of recurrence? I have tried and tried to not think about it but, when I get my mind off of it, without my knowledge, it's happening again.
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going to primary care doctor on Weds, first appt i could get, but tired of being dismissed by Onc ref pai
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Lily: How did your appointment go with the PCP? I hope you received some pain relief!
BB and Winter : I always try to have a day doing nothing and watching tv or movie on the weekend! It is refreshing for me to not think at all.
So I finally met with my PCP last week, and he printed out the pathology reports for both tumor and fluid and I am now NED with caution regarding tumor. I will be scanned in August. Thank you all for your prayers and advice.
I am still experiencing PTSD. And depressed... but when I work - it does provide a bit of relief
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not given anything just referred to rehab, still waiting on that appt. been to primary care doctor since and have just finished 5 days of steroids, they helped with bone pain, not the rest..........back again this week
So pleased to see your news! X
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Well colonoscopy showed no cáncer, so that was a relief, then today at doctors my lung X ray shows shadowing he is not happy with so I am seeing a lung specialist later this month....
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All: I think my healthy diet, and regular exercise, is also helping me right now. It is a serious effort being committed to moving around and to shop and cook healthy, but I can't imagine how much worse my body might feel if I weren't doing these things. Am trying to look at this BC experience as THE reason for vastly better self care than ever. It is making a huge difference, I'm convinced.
On the emotional front, am finding that I feel more worried now than I did during treatment. Had my six-month checkup yesterday, and it went well. My mind is like the tongue in a mouth that has a canker sore or a painful tooth...it keeps returning to, and "bothering," the BC memories and fear. But don't want to do this. Worrying isn't going to help me avoid a recurrence, or improve the quality of my life today, is it? I want to remember that today is not yesterday, and that I can choose to "be where my feet are," which is in today. I have a trauma history, so this is so hard for me. But again, the BC is the best reason imaginable to learn to change my thinking habits little by little. And they are habits. I don't want to be a victim of my own mind, as well as of BC. We'll see how it goes today, LOL, with this rogue mind!
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I thought it was about time I checked back in with you all.
Lily, that's great news about the colonoscopy, but not so good on the lung shadow. Damn it. You don't need yet one more thing. I'm sorry you've been in so much pain too and hope rehab helps that when you get to go. I feel bad and totally understand about having to tug at your clothes and rearrange things in order to hide the missing breast. I hated that especially in summer. Winter wasn't so bad. Hang in there. I hope the lung shadow turns out to not be anything.
LiLi, I'm glad they're calling you NED. Let's hope you stay that way! My work doesn't make me feel better, but when I can distract myself with something that I enjoy, I do feel better. I agree that a "do nothing day" can be a very good thing. Always feeling rushed is one of my problems.
Girl53, rogue mind, indeed! If you figure out how to control it, let me know. It's not so much worries about a recurrence with me. Not sure why that is.
My current big worry is my husband's health. Like a lot of men, he has never taken very good care of himself, and now all the things I predicted years ago are coming home to roost - heart disease, pre-diabetes. So, I worry about him. Selfish thing that I am, I'd rather die myself than lose him.
I had occasion to look through my medical records today, and that brought back all the anger and depression that I thought I was finally getting over. The reason for diving into that black hole was to find a copy of the results of my BRCA tests for my MO. It was negative which is rather unfortunate. If it had been positive, I'd have had a prophylactic mastectomy and saved myself a lot of trouble.
My "other cancer" is also starting to creep back into the picture. The levels of my IgM antibodies that they check to keep track of my Waldenstrom's macroglobulinemia are starting to creep up again. This isn't really a surprise. The chemo I had for bc, knocked back the Waldenstrom's a bit also, but now it's regaining a little ground. This is more an annoyance than a real threat at this point, but it's something I wish I didn't have to think about. And so it goes.
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THank you 2TAbbies - men are impossible, hope its a good wake up call for him..............
I am finding myself impossible to be honest, I have to go away for a few days to visit family and Friends and I am upset and in tears already about going as I just hate staying anywhere different now I am mutilated, I cringe and shudder in shame and feel like I cannot relax, having a shower somewhere else, going to the bathroom in the night, being seen in nightwear even with a robe on etc, all just make me tearful and feel sick just thinking about it.......
in tears now so going................
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i thought I would talk about it, told three people how i feel, ALL ignored it and changed the subject....and my ex said oh so therapy hasnt helped then or u wd be ok with it by now..........talk about feeling alone
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Having got my hopes up about a possible earlier recon it was all a big fat CON......spent most of my time since then in tears or on verge of tears and waiting list is still over 3 YEARS, when I have already served 4 years sentence...........surgeon I saw today was lovely and I wish he could opérate on me but he has told me to make a big complaint to the system.............back to square one, so tired of fighting for what is a RIGHT
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My yearly check tomorrow with the breast surgeon Gulp!
Lily. This is just not fair at all, will you make a complaint?
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Hello everyone,
I was first diagnosed Dec. of 2014. This past October I went through the 6 month check up and had another scary moment when they thought they saw something on my mammo/US. Had to get a biopsy and just last month reports came back as Bi-rads 2. Next appointment set for Nov. Just recently I started thinking about all this stuff on a daily basis, something I didn't do before. What is it about time, maybe it was the recent issues that brought the thoughts of recurrence or I really don't know what it is.
I've been reading the posting and my heart goes out to all of you. I pray that whatever you have to face that God gives you the strength to endure. Take care
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yes I am going to make a serious and well thought outcomplaint
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ARCats, sometimes disturbingthoughts get stirred up. A questionable mammogram could certainly do that. I'm afraid this will always be hanging over us but hope the anxiety will decrease with time.
Lily, I agree that you should file a complaint. Do they give a reason for the wait being so long? Too bad you can't find the other women who have been on the list for years and stage a protest.
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I am sure....enjoy those friendships...
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found out there are campaigns all over, about how its inhumane etc....lobbying and so on.......but this country has been without a proper government ....I am losing hope and hate summer no
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BB, thanks, I have had the check up and she says (the BS) that I am 'doing very well'. I asked her about continuing Letrozole after my 5 years is up, I will be 4 years out next month... and she said not for your type of cancer, but I will go on Tamoxifen for another 5 years, providing of course I am still here....
Lily, I hope you are doing a little better? Britain is in a bit of a mess too, in fact in crisis and government ministers are leaving/being sacked post Brexit by the dozen. I am sure you must have heard about it all.
This thread is much quieter these days so hopefully people are feeling able to move on and pick up with life post - cancer dx, I am not sure I am there yet, and many days I feel still in the grip of a depression, despite the meds and I find it hard to see a clear way out of this.
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Election results in, no majority again, so more uncertainty and more, probably fruitless, trading to try and form a coalition, been without a proper government since last December.........
No photos sorry but I am submitting my complaint this week and I have written a section on it about what life is really like without symmetry etc etc..........but of course now if they delay long enough they could refuse me all together as I am british.......................and simply take health care away........I am uninsurable for private health care.....
Winter - you will be here for sure xx
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Lily, Lisa, Winter, BB, Janet and everyone else-
I actually want to encourage other people but sometimes I am afraid of saying the wrong thing and we all have so many layers to us what encourages one person does not necessarily help another.
All I can say is I am cheering all of us on from the sidelines. I can hear the Chariots of Fire music in the background as we slow motion jog through this life of ours, with setbacks, some victories that do not necessarily present worry about our future, and some friends we make along the way, even if they are not forever. I have had people who understood me that showed up out of the blue and then I didn't talk to them again. Hoping each of you finds strength and peace. You are all amazing you just don't realize it right now.
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Lily, I was wondering if Brexit would affect your medical care. Arrgh. Another wrench in the works. I hope your complaint yields some results. I understand what you're saying about summer. I hated it when I was flat even though completely flat is probably a bit easier than asymmetrical. I can't remember. Can you get any semblance of symmetry with a prosthesis? I never could get mine to stay in place because I had no remaining breast to stabilize the bra.
Winter, I've been thinking about you and other Brits since Brexit. What a mess. It's even a little worrying over here. Nothing like you all are going through though.
I thought I was doing well emotionally, but any little setback seems to throw me for a loop. Had one today, and I'm back in the pit of depression. It's minor compared what most of you have been going through, but I always seem to be skating on thin emotional ice. I'm not sure counseling is helping much.
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enjoyeverymoment - For someone who is afraid of 'saying the wrong thing' , you certainly just said the right thing.
Thank you for your thoughtful post. Kindness and encouragement are always welcome. It's been almost five years since my diagnosis and I'm doing well (mostly) but knowing that a friend is still cheering from the sidelines made my day. Thank you!
Janet
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