Talking Frankly about Living with Advanced Cancer

@saltis....I love your posts!!! I am just sending a quick note (I hope) am writing this at 6am instead of on my way to bed (at 2-3) when I have a tendency to ramble. Your 2nd sentence ....I am jealous also, I loved that I could work with people and for the most part loved the people I worked with so even after 9 years I miss being able to work (the breathing and weakness). The empty calendar and quite phone do get me down some days...but then I realize my battery is dead ! I am such an airhead these days LOL I also was always on top of things a real planner and gosh darn it CANCER does not follow directions or stick to the plan!! and I used to be ( still am) big on plans. The Dr.s and I decided to stop chemo 1/2 way thru side effects ,but mostly, just wasn't working

still coming to terms with that

Oncologist appt. end of april so will see if I am stable or progressing, had new spots last time and I still have no idea of a possible plan as far as chemo goes we are in the "well we could try" phase and that doesn't fit my plan at all !!!!!!! I got lost along the way and forgot it is Gods plan... not mine and definetley NOT CANCERS. I have been giving cancer way to much power over my life and the fact winter just won't leave YUCK...IS aPRIL AND WAS 6 DEGREES WITH OUT WINDCHILL (sorry about the yelling)
and then. . something happens that make me so glad I am still alive
My grandson, almost 4, is for the most part non-verbal, he just chooses not to talk and is also lacking some skills
He , Abel, gets on the phone and says "I love you gramma"
I LOVE MY LIFE (YELLING ON PURPOSE)
Have a great morning to all

Hi Nogginquest,
I am so happy for you that you still do the job you love. It makes me actually a bit jealous. Of course cancer really sucks and I quite agree but we cannot do anything about it. I have had cancer for the past 23 years & I try to live each day on it’s own. I was a person who planned everything in detail and the calender was filled with dates and programs. Now it is almost empty but then I have the possibility to surprise myself. I have learned that comparing my life with others (specially those healthy ones) doesn’t help me at all but waste the precious life I have still. Out there are richer, healthier, older, more fortunate, people with MS, childless people, disabled, people living in war zones, human beings who are turtured, those who live in fear, children who die because of cancer & more. I am & you are the lucky ones, to be able to live ”even for a short while” and do what we love to do. Enjoy your days and months or years to come. By the way I am stage IV and it has spread to other parts, too. It has been like this for the 3 years and of course there are downs, black holes and frightning moments when I wake upp, struggling for air & wishing that it would be over now. Then I look at the sky, my surrounding, my family and can breath again.
My friend enjoy the work you do, create all the things you enjoy doing and hopefuly you would be there with every event.
Good luck,

Nogginquest, your posting touched me. It doesn't seem fair for you to possibly miss out on things you feel so passionate about. When I worry about dying before I always figured I would, I also feel like it's not fair, but I remind myself that I already have had more time than lots of other people do. It's amazing how the obits talk about people dying in their 40s and other people getting to their 80s and 90s. It's crazy how some people have twice as much time as others, no sense to it, that's for sure.

I hope that was not upsetting, if so I apologise. You sound like such an amazing person. Think of how many people you have touched through friends, family and work. So, I agree that cancer sucks, and it's tougher on some than others. Hang in there. Enjoy whatever you can. Think of everyone you have and continue to touch. gp

I hear you. I'm in partial remission, and I just keep waiting for the scan that shows progression or the pain to return.

I'm a programming and outreach librarian, which means I plan and schedule all the programs for our library. When I was first diagnosed with Stage IV pancreatic cancer I was told I would probably never go back to work and if I did it would be part-time at most. However, with my partial remission I was able to go back to work, and most weeks I clock-in 40 hours.

The last two weeks I have scheduled several really fun programs. I planned them with the idea that I will get to host many of the programs. There was a part of me that was super excited, but another part of me was super sad.

There is a real possibility that the remission could be short lived. The type of cancer, and lovely BRCA mutation, I have could mean a quick progression.

I'm just a little sad at the thought of not hosting some awesome programs. I'm really disappointed that cancer makes me feel the emptiness of missing future fun.

Cancer really sucks.

At an appointment with an oncology psychologist I was told that it was interesting to feel survivor's guilt when I wasn't even a survivor. I told my oncology nurses and they replied with a huge hug. They said I am living which means I am surviving.
I never went back to that psychologist.

Hi Teresa, (shortshot80) Nancy. Things are somewhat down to a small roar... Next is... I saw my heart doc yesterday, Seems that my pacemaker has stopped working. I have to have the battery changed next Monday April 2. My doc is 65-70 miles away. I have to be at
the hospital at 6;30 am for surgery at 8am. Will have to be in the hospital for aprox 5 - 6 hours afterward. He has to change the battery and make a few adjustments. Then the drive home of one - one half hours. . See my cancer doc on this coming Thursday to see what will happen next. I'm feeling somewhat better than I was a month ago. Still a touchy stomach. Hopefully that will be gone soon. I have lost over 20 pounds with all that has happened. I had panic attacks in bed, (thinking I could not breath) (cancer) So am on some lorazepam. Really does help and am finially getting some sleep. Positive outlook helps.. Will keep you posted as I can. Nancy

@shortshot80 Hi Nancy:

I am so glad that you are doing better, I really missed hearing from you. Anxiety is pretty easy to treat and often meds and physical problems can cause anxiety. What a blessing that your primary doctor figured it out. I am so glad that you had a good birthday.

I look forward to hearing from you again.

Teresa

Hi Teresa, Finally I think I am getting a little better. The last month and half have been very stressfull. First I could no eat very much, then no sleep, then I couldn't breathe... Seemed like I wasn't going to get better at all. I have been to the doc's and Yesterday I sawmy primary
doc. I just told him how I felt, So turned all my problems to him. Well he said something that finally made sence. . I was having "panic attacks, quite regularly. Didn not even think that as I have never been afraid of much of anything. Well doc gave me pill (prescription for some "lorazepam" I think that is a life savor...... I was able to sleep through the night last night and I have even eating a little more. I had spent four days in the hospital, (didn't figurer it out the). Think things will be better not.. Slow but that's ok.
My 85 th birthday was just great. I had many email, cards , phone calls. I even had a family from Texas call and sing to me. That was special. ..... Thanks for asking .... Be back soon. Nancy shortshot80

@shortshot80 Hello Nancy,

I hope that this post finds you better from the side effects you mentioned in your last post. I hope that your birthday on Monday was a good one for you.

I would love to hear from you when you feel up to it.

Teresa