Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
Carol, I am so sorry to hear about this latest emotionally and physically draining setback.
I just want to scream at medical science to get its act together for you. They've been researching cancer for something like 5,000 yrs, according to this book I'm reading, and some of the techniques (ie. radical mastectomies, x-rays) go back something like 150 yrs. Ok, yeah, there have been some significant gains, but yeesh. I am told that cancer research is "dynamic," much more dynamic than for heart disease, so hopefully we will see more significant gains in our woefully shortened lifetimes.
I am not in a good mood because my scan showed a second break in a rib. Maybe (ok probably) I have been foolish, but I did reformer pilates all through chemo, which is the first time I broke the rib. I never stopped. And it's hard, with a lot of weight pulling and stretching. Most of the people in there are 20-30 yrs younger than me. It made me feel strong and I figured it was strengthening me. My attitude was f**k you cancer (pardon my french). Are my bones too brittle for any of this now? Boo. I haven't seen my onc yet to discuss all this, but I guess I'll try to work with a physical therapist now to see what I can still do. All of us oldsters know what's ahead, the inevitable decline, but that doesn't make it any easier. Still bargaining.
Re: A place to talk death and dying issues
I had a meeting with the palliative care team yesterday. It was my first one with them and lasted about an hour and a half. It was a video visit and I saw the nurse, the doctor, and the social worker. It was a great meeting. I do have an advanced directive, etc., but they're sending me another form called the POLST which is the Physician Orders for Life-Sustaining Treatment. DH and I are in agreement. I definitely do NOT want chest compressions or a trach tube.
Carol
Re: Have you experienced PTS or PTSD following a breast cancer diagnosis?
I have been diagnosed with breast cancer three times. What could go wrong, from day one of my first diagnosis in 2003, did. None of my doctors seemed to be concerned with my mental health. I was absolutely mutilated, poisoned and burned, but the medical community calls it, surgery, chemotherapy and radiation therapy. Such nice clinical words!
It is too painful to write about in detail. I had three doctors treating my cancer in 2003, no such thing as a team of doctors, I had to seek each one out, they didn't communicate except when I was burned so badly by radiation that I had jellybean size blisters on the top of my breast on top of the entire breast being covered with tiny blisters, and the skin under my breast sloughed off! Then my medical oncologist called the radiation oncologist and told her he would tell them when I could continue with my radiation treatments. (over two weeks later) I had a lot of physical pain, but also mental anguish. Did they care, NO!
I tried to push my anger way down inside me and for the most part, I did. I had a lot going on, I was pre-menopausal at the time, had two children and a husband who worked two jobs. I worked as well. A month after my diagnosis, my mother was diagnosed, and a year to the day of my biopsy, my oldest sister had a biopsy and was diagnosed with IDC and non-Hodgkins Lymphoma at the same time! So yes, my mind was a mess!
I had constant nightmares, often became short tempered, and cried a lot. I went to a well-known cancer hospital for my biopsy and treatment when, almost 16 years later, I was diagnosed with ILC. While I was assigned a Social Worker at my request, I was lied to by my breast surgeon who refused to remove both breasts telling me it was the hospital policy not to remove a healthy breast! I will never get closure on that because he passed away in 2021, but not before being named Dean of their Medical School! He never knew that less than three years after he removed my left breast, I was diagnosed with DCIS and IDC in the other breast that was supposedly "healthy!"
I went back to my local hospital the last time I was diagnosed, a whole new team, who blew me off when I asked for mental/emotional support. Their response to my request was "join a breast cancer group!" At the end of treatment someone sent me a detailed "Survivorship Plan." In it the person said MY TEAM WANTS ME TO HAVE MAMMOGRAMS BEGINNING A YEAR FROM MY LAST ONE!
First, I HAVE NO BREASTS! Second, I AM NOT A SURVIVOR UNTIL I DIE OF SOMETHING ELSE SO DON'T CALL ME THAT! That letter, which BTW NO ONE FROM THE HOSPITAL APPARENTLY KNEW WHO GENERATED THAT LETTER! ONE PERSON TOLD ME THE NURSE WHO SIGNED THE LETTER, HADN'T WORKED IN THAT HOSPITAL IN OVER SIX MONTHS! SO, SOMEONE KNEW HER, YET NO ONE WOULD TELL ME WHO AUTHORIZED THAT LETTER OR WHO GENERATED IT! MY PLASTIC SURGEON, BREAST SURGEON, AND MEDICAL ONCOLOGIST ALL DENIED SENDING OUT THE LETTER, YET IT HAD MY MEDICAL HISTORY DETAILED IN IT!
I WAS TOLD I OVER-REACTED TO IT AND THEY MADE ME FEEL IT WAS NO BIG DEAL!
I have never been diagnosed with PTS or PTSD, because I couldn't get any mental support, but that letter caused me to spend that entire night writing that nurse a letter expressing the anger felt! I revised my letter over and over and over again all night long. Hundreds of times, revision, revision, revision, I couldn't stop myself. I felt as if I was exploding on the inside! I was awake for over 30 hours and literally collapsed due to the mental stress and lack of sleep. WHEN I TOLD MY TEAM ABOUT THAT, NONE OF THEM CARED! They all totally blew me off, made light of it. Did they really think I could trust them after they did that to me?
So, I have once again pushed all those feelings back deep inside me so if or when they will burst to the surface again is anyone's guess. I stopped seeing my plastic surgeon, who is also a lymphedema doctor and wanted to do surgery on my lymphedema arm, as well as my breast surgeon. I just can't go back to see them! I still see my medical oncologist only because I am on Letrozole. I was told by his nurse that the letter definitely wasn't generated by their office and I believe her. I now stay as far away from doctors as I can.
I firmly believe anyone who is diagnosed with breast cancer should have a social worker or mental health expert as part of their team! I don't think that will ever happen, but one can hope!
Re: My Husband, My Life, My Love, My Family, My Cancer
Thank you for the encouragement and the love, everyone! I truly appreciate it. Everything I eat seems to upset my stomach, but I have to say that some of mara's concoctions sound good. I think I might try some white rice today.
I'm still available for pocket duty for anyone who needs it.
Love and hugs,
Carol
Re: My Husband, My Life, My Love, My Family, My Cancer
Hello all!
The heat and humidity is hitting us on the east coast too. I think for another day and then return to normal temperatures. Belle keeps wanting to go out and then she runs back in to the air conditioned house!
Congratulations Mae on the continued scan results. Irishlove, happy to hear of stable scans! I had recent scans also and when talking to my MO he let me know how pleased he was to see everything still stable. I think he expected me to stand up and cheer hallelujah. I was happy but he doesn't understand the meds still make you feel like crap.
Take care everyone. Have a pleasant day and stay safe.
Debbie
Re: My Husband, My Life, My Love, My Family, My Cancer
Good morning, everyone. I've been just lurking lately, too tired to post.
I had my PET scan yesterday, and when my MO called me at 4:00 pm, I knew it wasn't a good thing. They found "omental caking/mesenteric carcinomatosis" meaning the cancer has spread to my gut. I'll see her next week and we'll talk about the next line of treatment.
I told my sister and we let our kids know but will hold off telling my dad until we know more.
I'll see the dermatologist today for this itching/bitching that is driving me nuts. The anti-itch pill didn't work; maybe I need an anti-bitch pill. Hmmm… Do you think there is such a thing?
sunshine99
Re: My Husband, My Life, My Love, My Family, My Cancer
Mae and Irish - so happy that you had the good news of stable scans to share with us. So sorry you’re having another diverticulitis attack Irish. I hope the lower dose of Ibrance makes a difference for you.
Mae - I’m wondering if your neurologist is going to suggest an RFA (radio frequency ablation). I’ve had a couple of them on my lower back. Basically it’s burning the nerves that innervate the area of pain. It can give long term relief. Unfortunately mine didn’t help much but since you get great relief with the injections you should have a good outcome.
Hope everyone is able to stay cool and comfortable. I feel for those who have to work outside.
Re: My Husband, My Life, My Love, My Family, My Cancer
Hello All:
Been a bit since I dropped into Mel's living room. As usual it is filled with a brave and intrepid bunch of people who continue on in the face of misery and suffering that many would buckle under. Sending healing hope to all who need it and wild congratulations and joy to those who are doing okay.
Despite having a new weird 'thing' in my good boob, which they monitor every 6 months with ultra sound, I am doing well. I do battle the odd flare-up of lymphedema. I never know it's coming. Usually I've been bashing post holes with the wrecking bar or splitting firewood and that will sometimes tend to flare it up. Seems heavy work that causes impact on my arm will send it into crazy swelling and then it takes weeks to settle down. But like I tell my Hub, I am no longer a 35 year old man and can no longer do the work of a 35 year old man so my days of bashing holes in the ground with a wrecking bar are coming to a close.
I am having a very unpleasant stage in my life. At least I think it's unpleasant. I don't go anywhere. I don't leave the house to go to town alone. Sometimes I think, 'Runor, you need to brush your hair, put on presentable clothes, get in your truck and go be around some people' . And then I think, why? More and more I find there are less and less people I want to hang around with. I have lost my ability to 'people'. Someone will strike up a random conversation and while I am polite and able to speak, in my head I am thinking, 'oh my god I don't give a shit about this, please stop talking and go away. ' Other times I hear myself speaking to someone and think, "Runor, this 16 year old check- out person seriously does not give two shits about your day so why don't you just STOP TALKING!' And I go away feeling stupid and mortified that I have become an irrelevant old person. Or someone will now and then suggest we get together for coffee and I smile but in my head and screaming,' please, no! ' I think I have not made my peace with turning 60. Yikes. Ouch. Barf. I said it out loud! 60. Jeez.
I do go out on the wknds when Hub is home and we load in the truck, drive to a gas station, buy some hot chocolate and munchies, drive across the valley, park in the empty parking lot of a rural church and look across to the mountains on the other side and remark about the savage mess left by last year's forest fire. Last year we'd park in the same church lot and watch the fire flash across the forest. It was awful. Often we have my aging mother along who sits in the backseat of the truck and says, 'this is your idea of fun?' Then she tells me I should do something with my awful hair. She's right. It's awful. I should do something. I don't. I've quit caring. I put it up with clips meant for a 9 year old. And now with the price of everything in Canada, gas having recently gone up, even going for a random drive is becoming risky, pricey behaviour.
So I guess you could say I dropped in to say I've turned into a sour, slow, unfriendly old coot.
Love and hugs to you all. Be well and get your hair done! R
runor
Re: My Husband, My Life, My Love, My Family, My Cancer
Oh Mel, that was the news I was dreading to hear. I was starting to assume she had probably passed, though she had last checked in with the site on 1 June. She had the lung and lepto mets going on so likely knew her time was short, but I would have hoped she could have had one last lovely summer. She started her Stage IV path I think a few months after I joined. Rest in peace, emac, we won't forget you.
sondraf
Re: My Husband, My Life, My Love, My Family, My Cancer
Sad to hear about emac.
Had my brain MRI scans Sunday and Monday, all good, no cancer. Heading home tomorrow, then gotta figure out what to do with the rest of summer now that my planned travel is done.
Big hello to everyone 😁
illimae