Newbie Caretaker Post
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I have been waaaaayyyy out of the loop with the rollercoaster of my mother’s illness! I’ve been blogging a bunch: check it out!
doyouevencancer.blogspot.com
Hope you’re all well!
Dot…..I’ve felt every last bit of what you mentioned…..and of course, none of it changes anything, but it is what we have to go through. For most medical issues, time wouldn’t be so much of an issue, but for this cancer, time is EVERYthing and decisions seem to have to be made very quickly, so everything is compressed, including the process of grieving over the diagnosis, anger, blaming, accepting the diagnosis and gearing up for the fight. It’s so very overwhelming, isn’t it? I’ve been there….as a patient. You never need to apologize for those feelings…they are normal and we’re here to remind you that YOU are normal for feeling them. While the statistic seem horrible …..there are many who have gotten good results from treatment and have added months, and years to their lives.
Same here about the telemarketers……I just laughed out loud when I saw that comment. I think I really have taken it out on them. I truly do have compassion for anyone with a terrible diagnosis, but I think the last marketer who called about donations to their cancer, I told them that if they donated to MY cancer, I’d donate to theirs. There was a lot of sputtering on the other end of the phone line and I thanked them for calling and hung up. I was feeling particularly testy that day.
) I don’t think it really made me feel any better….the poor person who called probably thought they were doing something good….and they were. Sigh. I’ve tried to be nicer after thinking about that. But…..sometimes, you just have to let it out and woe the person on the other end of a telemarketing call. I have to admit that I did use CC as an excuse to get political callers to quit calling us. When I stopped them and explained that I was going through chemo and how difficult the calls made it for me ….and asked them to take me off their calling list, they did…and we quit getting those particular calls for that organization. Who would think that telemarketing calls would be part of the fight?Dot…..no apologies needed, ever. Hang in there. Good luck on the radioembolization – it has worked great for many – no reason to believe for your Mom not to be equally as fortunate. Try to take it one day at a time. No one can truly predict the future with certainty and that uncertainty can work in our favor.
Hugs,
MarionHi Gang –
Sorry it’s been so long. I’m on a bus en route home. After an angiogram last week, she’s having radioembolization on the 29th. She’s not feeling great, but her labs are still normal and she’s not jaundiced, so we’re hoping the treatment will at the very least aleve her pain and fatigue.
To answer the questions about her CT: the U/S, CT and biopsy all showed the same thing: a large mass with shitty margins (sorry, can I curse here?) presenting as ICC.
I oscillate between blind rage and sorrow, wanting desperately to lash out at something or someone for this horrible situation we’re all stuck in, but know that’s not going to be helpful (although, heaven help every telemarketer who has called me since my mother’s diagnosis).
I’ll be in VA for a couple of weeks before my shows pick up, so I’ll definitely check in and see how everyone is, and thanks for your support!
I like the prime number concept. I’m two years away from the next one – I’ll take it.
Curiosity question. How closely did the CT/PET scan results match the ultrasound?
You have to have a plan, a goal. If not, you might drift aimlessly. One of the oft-repeated phrases here is “Attitude is everything.” (Subtitled “The Little Engine That Could – I think I can, I think I can.”) Surgery is the only cure. Keep asking your team – When, not If – surgery is practical.
Duke
Hi Dot,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear what your mum is going through right now. But glad that you’ve joined in with us here as you are in the best place for support and help and you can expect loads of each from everyone here. Thanks for sharing about your mum and dad as well.
You have so done the best thing in seeking out and learning as much info as you can about CC as the better informed you are the better you will be in helping your mum with everything. Top marks go to you for your learning!
I do hope that the radioembolization goes well for your mum and does it’s job. And yes, fingers crossed that down the road it will lead to shrinkage and surgery being an option too. Remaining cautiously hopeful sounds like a plan and please let us know how things go. You are not alone in this. We are here for you and we care.
My best wishes to you and your mum,
Gavin
Dear Dot. thanks for the info. I LOVE your Mother’s sense of humor. Please give her a message for me. I will be 75 in April but not celebrating until Memorial weekend in May. That way I get my family here BUT also get to be 74 for one more month!
Dot, I know this is not the kind of help you ever though you would be giving your Mother, but it is the truest Mitzvah there is and you will never regret it.Hi guys, sorry for the delay. I appreciate all of your loving thoughts. To answer some questions, my mother is 70 (and has told her oncologist that she simply CANNOT die at 71, as she is obsessive compulsive and would hate dying on a prime number
), and will be treated at Norfolk General. My parents live in Virginia, and Norfolk is the only local hospital that does radioembolization.To answer your question Catherine, the hope is that the treatment shrinks her tumor enough to consider surgery. She’s had appointments with four different doctors (an oncologist, an interventional radiologist, a radiation oncologist, and her surgeon), and although she has four different series of input, they think if embolization is a success, they can attempt resection. My mother is very practical, and her only real hope is that her symptoms (intense fatigue and pain, for now) will be relieved by the embolization. Surgery seems like a distant plan, but I remain cautiously hopeful.
Thank you guys so much for all of your support.
Welcome to this wonderful group of supportive and informative friends. Your family has been through so much with your Dad and your Mom sounds like an angel. Cholangiocarcinoma is so different in all of us. I was diagnosed in 2010 stage IV icc and I am doing well so never give up Hope.
Hugs
LisaDear Dot, what a way to start the year and I truly hope both your parents see a big turn around in the near future, You have come to the best place to be for CC support and we are all here for you.
I am wondering about the age of your parents and also where your Mother is going to be treated. I am not familiar with radio embolization as my husband did not have that but will be able to help with other things related to CC. I am sending the best wishes for both your parents and please do keep us updated as we really care.Hello,
Your family has already had its share of triais, I’m sorry your mother now has this added. My mother had radioembolization (SIRT) twice, but she had 6 cycles of Gem/Cis first. The main side effect was fatigue which lasted almost a month the first time and is hanging on even longer this round. However, this time they also put her on xeloda (a pill form of chemo) for 2 weeks before and after the SIRT. And, although I don’t know numbers, I think her dosage was higher than typical. Good news is that the tumors shrunk for first tratment in Feb. 2014 and after the fatigue, she felt fine and at times we felt that it must not be true that she still had this dsease. Scans in Sept still showed no progression, but we decided to go in and do the SIRT a second time with the goal being to kill off the tumor and the left lobe of the liver.
Do you know if the the goal of the treatment is to make her operable? Where is she being treated?
Welcome and Happy New Year,
CatherineHi all,
I’m new here, and have just officially been signed onto this board. Before I get into my mother’s cancer story, here’s a bit of background. In May of 2013, my dad was struck by a cab in NYC, and developed a severe traumatic brain injury, to the extent where he cannot feed, clothe, or bathe himself, and his walking is limited to 20-30 steps a day. My mother is his sole caretaker, and has done an absolutely breathtaking job keeping him alive and well. She has been a nurse for 50 years, and a Hospice nurse for years after she left the hospital, so all this care is second nature.
At the end of October, she had an epic stomach ache, centering in her upper right quadrant, to the point where she had to have people come in more frequently and take care of my dad. She went to the doctor, who ran a few tests and scheduled an ultrasound, but was fairly certain it was nothing to worry about, given the fact that my mother is extremely healthy. And six days later, we got the call. “We found a mass, about 6cm, in your liver. How soon can you come in for a CT scan?”
We immersed ourselves in new language: hepatocellular carcinoma, colangiocarcinoma, biopsy, mets, primary source, PET scans…I became able to rattle her tumor markers off like a grocery list. In a matter of weeks she became more tired (we had someone come in more often to take care of my dad), began experiencing more pain (so far she’s been prescribed Tramadol, and liquid hydrocodone), and anxiety.
Her diagnosis is of intrahepatic cholangiocarcinoma, and she’s being scheduled for a radioembolization at the end of the month (Happy New Year!). I don’t know what I should expect, but I thought I’d jump on this board to introduce myself, and get some insight onto this nightmare of a roller coaster we’ve all jumped on.
Hope everyone had a happy and safe New Year.
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