Which is the worse part of cancer treatment?
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kber,
My rads tats are scattered across my thighs since I have only had rads to my bone met. I screamed each time they made a mark, until I realized it didn’t really hurt! Four years ago, I got a real tattoo, though I researched the least painful part of the body to get one on 😉
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Laughing re tattoos. I have two tattoos, then I got the four dots. The only one that bugged me as it was done was the one ON my left breast. It's also the largest, darkest one so maybe that's it.
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Well it all sucked except for the fact that it has hopefully saved my life.
It still sucks because I woke up at 3:30am and have not been able to get back to sleep due to thermoregulation issues.
I was very distressed about having cancer in me during the chemotherapy, and I had some very low points on account of that and fatigue.
As far as side effects during treatment go though, the thing I could actually not tolerate, that made me think "I can't do 4 months of this" was the changein my taste perception that Aloxi, the anti-emetic I had during my first infusion, caused. For those of you who could not tolerate the taste of water during chemotherapy, imagine your saliva tasted like that, for a few days short of three weeks, and nothing could remedy that.
The Aloxi worked very well for the nausea, in fact better than Emend for me, but I found that some degree of nausea for a few days was better than the unpleasantry caused by the Aloxi. So I was switched to Emend, which caused me to experience delayed nausea on day 5 but that was more preferable to me. I was also simultaneously on Zofran, which causes me the same taste changes as the Aloxi, but to a much lesser extent and duration.
Second place for bad side effects goes to dexamethasone, which was necessary but I loathed.
I couldn't eat on it because it spiked my blood sugar, but that was tolerable, as it made my fasting blood sugar higher than my normal post prandial blood sugar, so I didn't feel like I needed to eat, despite the allure of corn dogs and chili fries it brought to my mind.
The thing that was horrible about the dexamethasone was the withdrawal. It made my throat extremely tender like someone went at it with a meat tenderizer.
It also gave me severe acid reflux, however that was preventable if I started the omeprazole at least 5 days before the dexamethasone, and continued it for a few days after.
I'm not sure if others experience the same side effects from the pre meds or if I'm just unusually sensitive to them but I guess the actual chemo side effects would have been worse without them. The dexamethasone also has anti emetic properties and I came very close to vomiting after forgetting to take my last dose on time. I guess the pre meds trade bad chemo side effects for less severe pre med side effects.
Then there was the boredom. I was too hung up to go on an outing and my mind was too fuzzy to do anything productive.
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WC3, you're giving me flashbacks.
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Thank you all for your kindness, your sincerity, your opinions. The emotional part is a different disaster for each one of us, isn't it? At this moment, my deepest feeling is sadness. I'm also very angry, but the sadness is brutal. I suposse it is another face of the fear
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flashbacks here too...
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I'm so glad you started this thread--I've found everyone's responses comforting (as odd as that may sound).
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Shame comes from early childhood. It is a right brain sense of being flawed or faulty; not good enough. It comes from having had to be or act a certain way to please others (our parents) when very small or to secure our survival. Which makes for a feeling of shame about the needy/ imperfect self that must be denied, covered up and masked with adult behaviors (never needing help, girl scout, etc).
Right brain "certainties" are often wrong in reality.... but they were probably 'right' or useful in our family of origin.
Going through cancer we need a lot of help. Our problem is out in the open/ visible rather than successfully masked. On top of that we have to self-focus and practice self-care. And need. And all that can bring up shame.
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So far it is looking at my breast with scars and knowing the possibility of the burning from radiation getting worse. It seems vain when its ones life you are talking about but for me it is a symbol of being in a war i never wanted to fight.
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Telling my kids was the absolute worst for me. They are adults, they can handle it....but, the mere thought of "me" inflicting worry, pain or fear in them broke my heart. It goes against the fiber of my being. I understand that, that is totally irrational and that it was not "me" that actually put that on them...but, at the time, it felt like it. When it's all said and done, I am forever thankful for their love and support, but I am sad just thinking about it, all over again. Damn cancer!
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keepthefaith, same. Telling my grown sons was the absolute hardest, way harder than telling my husband (who's definitely the love of my life). But telling them just crushed me.
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This is not WORST, but one of the bad things is not being able to complain about the bad things to almost anyone. For example, this morning I commented in facebook (and to be clear, I rarely mention anything in facebook about my cancer or treatment or progress, etc) that being bald, every time I go out of the house and want to look pulled together, there are only choices that are bad. All the options, other than just being bald in public, are unattractive and/or uncomfortable. And I am not comfortable being bald in public.
In my experience, saying anything as neutral as this incites people to say things that really mean "you're wrong to feel that way." They always have some other solution, or some way to negate what's been said, or some way to say you're wrong or you're not doing it right.
That's not only true about the cancer experience, of course!! Say almost anything negative about any part of your life and someone is likely to tell you you're wrong. Oh, having a crappy day? Then you must have the wrong attitude about it, or in some other way you're doing your day the wrong way. Right? People do that all the time. *I* probably do that all the time.
The only right answer, unless someone actually ASKS for advice, is to say, "I'm sorry you're going through this."
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Totally get that Mountain Mia - I have only told my family and even they respond that way. Some days some things just feel crappy and validation would be nice. Sorry it is not working out that way so I'll say it - I am really sorry you are going through this. (This is why I didn't tell any of my friends.)
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I know exactly what you mean MountainMia. I am the rare person suffering what seems to be permanent hair loss. I am not only bald but completely without hair on my entire body. This was very difficult for me and most people who said" it's just hair" had a head full of hair.
Then I get all kinds of hair growth advice but then I just cut people short and let them know that I have been seen by expert dermatologists at MD Anderson and this situation is well beyond the reach of vitamin e, biotin, coconut oil, steroids, rogaine and/or whatever anyone wants to recommend. My hair follicles are alive but this type of alopecia is driven by immune system damage from chemo.
At this point, I rock it bald daily, everyday, work and home, and I am comfortable doing so....but it took time to adapt emotionally. Most people don't understand the devastation of hair loss.
So, I still think FAC chemo was the worst...during treatment AND because it robbed me of hair likely for good!
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The worst part for me was the A/C chemo. That was when I felt the worst. But the worst part of the whole thing was getting the diagnosis.
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Welcome, Mcolestork! We're so sorry you find yourself here, but we hope you find this to be a supportive place. And we totally understand - chemo can be incredibly difficult to manage! Have you finished your treatment yet?
The Mods
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I'd say post tx. Chemo didn't bother me like it does for most overall. Sx and rads weren't difficult. Not fun but no real awful ses. Tamoxifen along with other meds makes me fatigued but luckily I don't have responsibility for anyone but myself.
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Recurrence, most definitely. Having Inflammatory BC & only a partial chemo response before Mx (they still removed a 3cm tumour & 23/26 lymph nodes were affected), I’m just playing the game of “when” it will happen, rather then “if” it happens.
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hapa, scrafgal:
I got a trip down memory lane the day after my exchange surgery. They gave me Zofran and dexamethasone while I was out. It felt like a mini chemo
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ShazzaH: I completely relate to the game of the "when" because I have a suspicious supraclavicular node. My MO said phrases like: "it's very small", "it is in the area that is going to be irradiated", "we will watch it".
Ok. I'll take that ... for now
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Yndorian: - I am in the middle of rads and he's right the radiation hopefully will zap the little devil and all will be well. By the way I had a few nodes that puffed up after the surgery and they did go down. The swelling from the surgery has to go somewhere. Wishing you only good things and an easy time with rads.
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Giddyup - how long did it take for your nodes to go down? I had ALND but two nodes were seen on a CT scan in my "deep axilla" after I finished rads. No mention was made in the radiologists report about why they were enlarged, but she made sure to point them out.
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Just want to mention that an enlarged node can exist with no cancer in it if there was cancer in there earlier in time. I had one very large node at dx (3 cm) and it was still large after treatment but though still abnormally big, it was kind of like a deflated balloon. Upon removal during my Lx it was shown to be cancer free. So a node can get 'stretched out' by the cancer.
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They came up about four weeks after surgery and went down after about a month. Doc send no problem it seems lymph nodes are responsible for helping to get rid of swelling.
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I think the worst part is that now the good days aren't half as good as they were before I was diagnosed. I feel caged by the limitations of my body. I know it will get better as time goes on but I'll never get back the time I spent being trapped in a body that couldn't do what it once could and may never be able to again.
Also, the hot flashes were straight up hell.
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I have more taxol to go. A full year of Herceptin. And haven’t started the rads yet. But the worst for me so far is the thought that I might not get back to who I was before. Less than 3 months ago, I was running 25+ miles a week. Now I am using all my energy to make sure that I can keep working my full time job. Our insurance is through my job. Can’t lose that. Medical bills are coming in fast and furious. Oh and happy 28th anniversary to us. Can’t even enjoy a glass of wine and some nooky.
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I've been reflecting and I think the worst part of this whole cancer issue is uncertainty. It's something like those horror movies where you don't see the monster, you imagine it absolutely terrifying. When you can see it, even if it's scary, you know what you're facing
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Yndorian, I understand that completely. I regularly dream of cancer now, so obviously even when I'm not consciously thinking of it, my brain is working on it. I see the stats and of course they're in my favor, but they still suck. I read the headlines of new research that Lumpie posts, and I wonder when will the scientists pull all these threads together and be able to personalize the medicine better? When will there be research to solve the riddle of TNBC? I'm sure there IS research like that!! But (very selfishly I wonder) will it be ready to help ME, if I need it again? So much uncertainty. Life is and always has been, but this is a new lens to view it through.
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When I was diagnosed stage four it was a real shock. Never, in a million years, did i think I would be the one to be diagnosed with cancer in my community. I was well aware of the pollution and carcinogens in our water and food supply and I thought I had been protecting myself properly with an arsenal of supplements, antioxidants, organic foods, yearly mammograms, colon screening, and regular visits to functional doctors.
The worse treatments so far has been the Letrozole, that ironically was also the most efficacious. It made me feel old by taking away my strength, mental capacities and creativity, but It melted away the 2.5 cm tumor in less than 2 months on half the regular dose, and continued to work for next two years. So I'm grateful.
Living with cancer is like being unable to wake up from a nightmare. I live in a twilight zone world, where the treatments, the doctors and hospitals are just a bad dream I'm having, except it never ends.
There are some unexpected benefits to not having a future: I don't have to worry about global warming or who's going to take care of me in my old age, running out of money, or the sorry state of our " democracy "
Now I live in the moment because that's all I have and that's a mixed blessing.
There are now, however, couple lights at the end of the tunnel: the fenbendazole and COC protocols, real cancer cures that have already changed the lives of so many people.
I hope we can all benefit and live happily forever after.
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Pschological torment that goes along with the uncertainty. The mastectomy was particularly hard for me but the DIEP really fixed that for me.
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