Which is the worse part of cancer treatment?
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So true, Yndorian. So true.
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For me the worst was the stereotactic biopsy, closely followed by the time between that first flagged mammogram in mid-April to the treatment plan in early August. That waiting, worrying, vulnerability...All those tests and dx that really were not comprehensive... that sucked. Being told over and over how unlikely it was to be something serious, only to be told it was getting more serious after every subsequent test...
I'm one week post bmx and DIEP. This recovery is no joke but I'm better mentally than I've been in months.
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HopeWins - I so agree on both how dreadful the stereotactic biopsy was (seriously, they should knock you out for it), and also how difficult it was to be told repeatedly that things were worse than expected. I’m about 14 months out from my BMX and ten months from finishing chemo. It does get better. Wishing you a speedy recovery fromsurgery!
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hi there for me it was the chemo before I had port put in I had first put thru vein in hand burned like he'll. But different for all. Also fear of recurrence for awhile but I claimed healing in Jesus Name. Praise God now this yr a 25 yr Survivor. Oh I had implant expander but body rejected it had very high fever rushed to hospital and was removed. Wear prothesis in bra. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast got married was engaged at diagnosis then rads 7wks then 5yrs on Tamoxifen.
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msphil: You are a great inspiration. May God give you many more years of hapiness and healt! Hugs
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I think I understand the “shame" issue, and I think it is an individual experience and valid. Speaking for myself, I am 68; I have spent a lifetime finding my spot in my world. I am extremely tall, overweight (could be more so, but still...), and a different drummer sort, slightly introverted but with a good circle ofclose friends. Now it seems a spotlight has zeroed in on me; I am exposed.
On the one hand I think I have a healthy outlook on the cancer and the aggressive battle I am in; on the other hand, I feel like I have forced the attention of others on myself I know it's not my “fault" but it is there nonetheless - sort of a “sorry to bother you, but I am fighting cancer.
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Three things....
Every single day, everywhere I go, everyone knows I have cancer because I Iost my hair. Miserable in wigsand hats don’t hide the fact that I’m bald. The port. Taxol.
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I agree with you, Melmax. If I could have kept my hair, no one would have known I am fighting cancer. I would be just another face in the crowd. I hope to be that way again soon.
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I found that generally people were kind to me when I was bald because they knew I was in chemo. I wore caps and scarves, but never a wig, and as soon as I had the return of some fuzz on my head, went without covering my head. We went on a vacation right after I got my port removed (thankful I had it but hated it!) and people went out of their way to be nice to me. One of the very few good things about treatment
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For me, the worst part of the whole fandango was the fear and grief, and putting my family through it too. I hated that my husband and kids were thinking of a possibly future without me, and were dreading losing me to cancer. Thank you, God, that I've been given many years with them post-cancer and am hoping for many more.
The worst part of treatment was rads. After the cooing, cozy nest of the chemo room, with kind nurses and warm blankets, I found rads to be cold, humiliating, and awful. Lying perfectly still for 20 minutes every day, while the x-ray machine hummed its deadly tune, cooking my skin and tissues...I hated it. But it kicked cancer's butt and I'm grateful for that.
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During treatment, the way even minor exertion would set my heart racing and leave me short of breath.
I'm actually finding the aftermath / collateral damage worse in many ways than the active treatment. My lymphedema (pump & compression sleeve) means I constantly have the reminder of cancer thrust in my face every day. I went through physical therapy for a herniated disk just prior to cancer and could easily stand on one foot for 30-60 seconds with a finger tip barely touching a wall for grounding. Thanks to peripheral neuropathy, I can now only stand for 2-3 seconds and that's after PT and doing chair yoga courtesy of the Livestrong program at the Y. Since treatment spanned two insurance years, the financial toll was devastating, even with amazing friends who helped with part of the expenses. In my absence, new competitors entered my small niche market and I couldn't rebuild my client base so lost a job I loved. I think the chemo damaged my heart, but I just can't make myself go down the cardiac rabbit hole and now, of course, with the corona virus crisis, I wouldn't be able to get the testing anyway. If one is fortunate enough to not have a recurrence or metastasis, treatment has a definitive end date. Collateral damage is forever.
Lyn
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The emotional part is the worst for me. Prior to getting my diagnosis, 5 years before, I lost 40 lbs and cleaned up my diet. Why? Of course to feel and look better, but also, my mother died of ovarian cancer at 68, I didn't want to end up like her. I feel like karma slapped me in the face. I had an extremely early DCIS/IDC, 3 mm, no node involvement..... lump/rads/letrozole, genetic testing came back negative, I was 61, I should feel lucky and grateful.......and to some extent, I am. I was doing better, now with this pandemic, I am feeling worse emotionally again. I miss my job as a teaching assistant, going to the gym, then getting a coffee or maybe do a little shopping. All of that is gone. I know we will get thru this, but I do feel a lot more sad again. I then feel guilty for feeling sad, as I know I got off easy! My husband tries to understand, but he always downplays and minimizes it, so I just tell you ladies on here. Oh yeah, my in person support group had been cancelled till maybe May. I will be ok, trying to keep busy, but this just plain sucks some days.
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Your anxiety is certainly understandable, kksmom3. This quarantine environment tends to exacerbate any worries we have. I'm sorry that you've lost access to your coping tools. 😢
Lyn
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I am on my second year of Femara. The most severe side effect is that my blood pressure shot up. Since you had all 3 AI, did you notice any difference in the side effects?
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The worst part? There have been several.
-Neulasta body aches
-Extreme diarrhea from TCHP
-Losing my eyebrows and eyelashes (Initially, this was worse than losing my hair because my wig is really nice. Until I managed to do a good job with false eyelashes and a good brow pencil, I thought I looked “sick” and that was the last thing I wanted people to know about me.)
-Nerve damage from surgery
-Fatigue from radiation
-Joint pain from Kadcyla
-Neuropathy
It’s all hard. All of it. Even so, I’m grateful that I have come this far. I will continue to put one foot in front of the other. I hope things get easier, but if they don’t I know that this community is behind me, surrounding me with love and support and virtual hugs. What a beautiful thing when this world has so much discord to find this place where we can share ourselves “warts and all” and find acceptance and understanding. Outstanding!
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#1: Dealing with Medical Leave paperwork requirements from my job and trying to get forms and information from the State of California EDD. Due to the pandemic all offices are closed and everyone is working from home, so no one has the proper form (which has to be an official wet signed hardcopy and thus mailed to - no pdfs (wtf?!?!?). Plus so many have been furloughed there's no one to answer the fricking phone or reply to en e-mail inquiry.
#2: Everyone (including myself) second guessing treatment decisions.
#3: Old demons thought slain years ago rearing their ugly heads- mainly old eating disorder, panic attacks, and ruminating SI- basically reverting to old ways of exerting control and managing extreme anxiety - seems to have been triggered by the multiple biopsies and surgeries. Same thing happened postpartum.
It was bound to happen. It's 20fricking20.
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Hugs to you, rbc. I know how frightening and frustrating the first few months after diagnosis can be. I would imagine the Pandemic makes it so much worse.
Just a suggestion from a fellow Californian. Call either your State Senator or your State Assemblyman (pick one or the other - it will create a huge mess if you get both involved) for help with your EDD issues. They normally have great constituent outreach. My husband had issues with his unemployment claim and they resolved it in three days. Hope it works as well for you.
Best wishes for the best possible outcome from your treatment. It does get better.
Trish
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