Cancer Care Rant
I’m not sure if the reason I am sitting here at 3 am unable to sleep is because of the time change or because this crap is piled up in my mind but, I’m going to take a chance that it’s crap and spill my guts. (Was that a long enough sentence?)
I’m not sure if I can organize my thoughts enough to pass them on to you but I’ll give it a go. Cancer sucks! Yeah, you know, and if you’re sick of reading me talk about cancer. Chemotherapy and doctors then you may want to pass on this one but this blog is a form of therapy when I need it and I guess I need a little at the moment.
So where was I? Oh yeah, cancer sucks! And in some ways so does being a survivor of cancer. “How?”, you say, “You’re very lucky.” And I agree I am, I would much rather be a survivor of this vicious disease than succumb to it. But, let me tell you that since having cancer I have not had a doctor that cares about anything other than that cancer.
I’m not having a pity party here, I’m ticked and more than a little frustrated. I went to the oncologist in January with a concern and he did blood work and offered a CT scan. He said my blood looked fine (it always has - it never showed cancer, ever) and that he was okay waiting to do all other tests until March, my time for normal check-up (PET scan).
I decided to wait until March, but I never got the letter with my appointment in it. So last week I called his office and the appointment desk said I wasn’t due in until May. They passed me off to the nurse to discuss it further. She assured me that I would have my letter by the end of the week and that I was due to have a bone density scan in April. I assumed that all of my tests would be scheduled then but when I got the appointment it is just for the bone density.
That’s my first frustration and yeah I could change oncologists but I don’t want to go through all the rigmarole required of changing and I think he’s a good onc. So I will probably call and ask her to clarify with him as I think he just forgot to write it down and she was simply going by his notes. You may remember I had a biopsy in August so really I am due for all other tests. My chemo brain is gone and I have a normal memory now and I hate being treated like I’m still a forgetful chemo patient.
But the other thing really bothering me is that cancer is all any doctor sees. I quit seeing my regular doctor because she was not listening to anything and only concentrating on the cancer and the onc is there for that. I have been very tempted lately to find a new doctor and not tell this new doctor anything about the cancer but that doesn’t seem very wise.
It was determined three years ago that I have osteopenia and I was put on calcium and told to continue taking my hormones religiously. I did as required and the following year my bone loss had still increased but the doctor said to just keep doing what I’m doing. Does that make sense to you? If it didn’t help in a year do you really think it will help in two years? I left feeling like the doctor didn’t think I would be around long enough for the osteopenia to progress into osteoporosis so why bother. So every year we just measure my bone density for fun?!
Oh and the hormones, Premarin, I was taken off of last year because apparently it had recently been discovered that anyone who has had any kind of cancer should not take any hormones as it could cause breast cancer. Well, I had a total hysterectomy in 1998 and my body does not have the ability to make hormones (no ovaries) so I lack sex drive. I tried talking to my oncologist about it and he gave me the feeling that, “You’re alive after cancer, you really think you need a sex life too?” Well, yes, I would prefer to enjoy life in all ways. Duh!
And weight, yeah I said weight, not wait. You know I was slightly overweight when I was diagnosed with cancer? I envision all cancer/chemo patients as being frail little things and I never have been. During chemo my weight went down and back up and down and back up - roller coaster and I hear that’s normal for the type of chemo I had . Also, normal is being a little on the heavy side - a side effect of having had chemo. Who knew? I would like to lose a few pounds but doctors don’t want to hear that either. They won’t help me figure out how to lose it so I’m left trying on my own. A couple of months ago I tried Slimquick, I took it for two days and on the second day I got so sick I stopped taking it. I was sick for three days and I don’t honestly know if it’s ok for me to take anything for my weight or not. The doctors won’t give me a straight answer about it and they seem annoyed that I’m even concerned about it. Again, “You’re alive, what more do you want?” I spent the last year geocaching my butt off and never lost a pound. I walked a lot and nothing.
I have considered going to Chicago to the Cancer Treatment Centers of America, where they supposedly would treat all of me, but I don’t even know if they take survivors or if they only see people who have cancer right now. And I spent all of my cancer time at Mayo Clinic and they’re one of the best, so would it be any different?
I would really like to know why after having cancer, doctors cease caring about the little things they would be attempting to fix if cancer wasn’t in the mix. Am I alone in this?
Wow, I think I'd be frustrated too. I don't know what to say really except
to tell them how you are feeling. Hope things improve. If it would help
to send them a letter, the way you have written this post explains it all
very well. Take care.
I think it is the health care system we have in place that forces the
doctors not to care as much as we would like them to. I had the same low
sex drive question for my doctor when I was on anti depressants... he told
me "that's not so important, let's just fix this." It's very frustating!
Are there any support groups for survivors out there that could help?
People just like you may be able to offer a better perspective of how to
proceed.
I think for piece of mind I would go through the hassle of trying some
other doctors. You would think that due to the osteopenia they would put
you on a high calcium doctor. I would think I nutritianist (sp?) would be
able to put you on a diet that is right for your body post cancer to both
help with your bones AND weight. You would THINK!! I don't have any
personal history and really just live with the little things that ail me..
I would hope to think I would be able to take charge of my health like you
have if something serious came along.
i most definetly would talk so they would hear me too!!! i can't imagine
going threw what you have gone threw and they still don't listen!! shame on
them!!
Oh Lisa! That does suck! I hope you find someone who will really listen
to you and help you with these things.
Lisa, I am so sorry that no one is listening to you. I have no answers. I
can only tell you that you are right and that you have my sympathy.
How frustrating. That is one thing I never would have thought would be a
problem. I guess it is like thinking of the "Happily Ever After" of the
fairy tales - you don't think about what happens after.
I'm so sorry. I send big hugs to you.
Sorry to hear what you are going through and my thoughta are with you. You
sound strong. I know you would have to be to be going through all that. You
have a talent for photos and I enjoy looking at them. You are going to make
a wondeful cancer survivor and you will be able to share with others your
amazing story. I am thanful for all the technology these days but I know
even having this technology it is still a tough road to travel! Take care
my friend and think positive! I know everything will work out in the end!
This is the first time I hear you talk about it and I'm here now since over
two months.
I don't think you write to much about it.....
I understand why you are frustrated.
Oh Sweetie - I know you are not alone on this. The battle with cancer does
seem to wipe out everything else in a doctor's brain. I am going to pass
this on to my friend who just had the mastectomy. I know she will be very
interested. She has yet to hear if she needs chemo or not. My thoughts are
with you - hope you know that. And Grrrrrrrrrr to all doctors!!
Lisa, I hear your frustration and you have good reason to be. You've moved
on in your life - sure you're dealing with the post cancer stuff, keeping
up the exams and meds, but you are working on the next project and no one
will help you. I'm a little surprised there's no one who will sit down
with you and hear your concerns from a medical standpoint. All I can do is
wish you well, my friend. Keep pounding at those doors until someone
listens to you.
This totally sucks. I'm so sorry to hear that you still have to stuggle
with dealing with all of this. I guess that I always thought once someone
was in remission they were done, except for checkups. All I can think to
say is to make a lot of noise as the squeaky wheel gets the oil. It's too
bad you have to put all your energies towards that though. I'll be
thinking of you.
I imagine that is painful to always be thought of as the "lady who had
cancer". Next time, at your appointment, just wave your hands in front of
the doctor's face and say, "Hello, I don't think we've met. I'm Lisa."
I'm giggling thinking about it. But then I'm weird like that.
Hi Lisa I'm just catching up and I'm sorry to read this, it must be so
tough for you. Your medical system is so different to ours, however I think
many doctors, where ever they are, have the failings you mention. I don't
know what the answer is but I rather like robinella's suggestion!
lisa, forgive me! i didn't know you were going thru all this, i didn't know
you are a cancer survivor. your post was honest and heart felt. i worked
for 20 years in medical. i think you should copy your post and mail it to
each of your doctors. it could really strike a cord with them, they need to
know. hugs to you.
********
that bird is darling. love the black & white spots
First, love the bird pic. Second, vent, spew, type away all you want.
It's a great release. Before they diagnosed me with Celiac, my level of
frustration was so freakin' high... my doctor sent me to go to mental
health and they wanted to push pills down me. I can't even imagine what
you're going through. It's okay to vent, it's okay to be angry, it's okay
to be frustrated. There is one thing I did get out of the few mental
health appointments and that was to take deep, lung expanding, gut popping
breaths. There's something about getting extra oxygen into your system
that helps. I know, not very good advise and I'm sorry. I'll keep you in
my thoughts and prayers. I hope you feel better.
Oh, Lisa.....hugs!!!. I'm so sorry for this continued source of
frustration in your life; I'm glad you have this spot to vent...and then
hopefully, to be encouraged.
I know what you mean! All the way!! I'm dealing with some health issues
right now...I just want to flip out and lose it! I've been having pains in
my side...bad, hurting, knife stabbing pains! I went to the doc...he set
me up for a CT Scan and wanted to see a gastrologist, then the
gastrologist set me up for at Upper GI and a Colonoscopy! They found out
that I have a spastic colon and gastritis! I knew I had the gastritis but
I didn't know about a spastic colon! So he put me on meds! I'm still
having the pain...IT HURTS! So I miss work Monday and Tuesday! I go back
to the doc on Tuesday and tell him the pain hurts...could it be anything
else or can we try something else and he said no...gave me a prescription
for Motrin (yeah...over the freaking counter aspirin) and told me to follow
up wit my OBGYN to check on endometriosis! Wow...that was a $40 copay
wasted!!! What a freaking joke! I was sooooooooooo frustrated and
sooooooooooooooooo pissed!!! I don't even want to go back and see him!
There wasn't any compassion there...just in the door out the door! By the
way...I waited an 1 and 20 min to see the doc and I think I was in the room
with him for 7 min!!! UGH!!! =(
PS - Sorry I wrote a long comment...
Just keep your head up...I'm trying to...it's hard...it just gets you so
down...I know!!! =(
PSSS - Okay...last one...lol...yeah right...
Any ways...the reason I haven't blogged is becasue of all the health
crap...I just didn't want to talk about it!!! Glad I got a lot out with
you!!! I've told a few blog friends but not everyone knows!!!
Your frustration seems very understandable. Hope you will get some comfort
and good care soon.
You be heard Lisa, talk loud enough so they'll listen and if they get
mad....talk louder. Sometimes they do that in the hopes the patients will
stop asking because they have too much going on. I absolutely agree they
really do have the mentality that "You're alive, what more do you want?"
But it's important to have good quality of life AFTER cancer as well. As
you know, a low sex drive affects not only you but your husband as well and
that right there means there are now two people affected. All this money
being raised to 'cure' cancer is fantastic, but I've always thought at
least some money should be going towards helping patients deal with their
life 'after' the cancer is gone. Therapy, counselling, etc.
My heart goes out to you Lisa. This is a very frustrating thing for you to
be going through. And yeah. It's definitely important to spill all your
guts rather than keeping it all inside. It's so hard to find a doctor that
you can have a real conversation with. I think I have kind of forced mine
to have a personal relationship. I simply will not leave his office until
I have spewed forth EVERYTHING in my head!! So, you go girl, keep on
TALKING, SCREAMING, if you have to. It is very, very important that you be
HEARD!! Do they have any kind of counselling group at the Mayo Clinic? It
would be much easier to just not deal with it, not go to the appointments,
and not have the check-ups. But, then. You have to deal with the
consequences. So, do the best you can. Sending prayers and hugs to ya!!
Stay strong and YELL if you want to!!
I'm fed up with my doctor, too. (if that makes you feel all kum ba ya &
stuff (:
My advice is TELL THE DOCTOR, TELL THE NURSE.
darn them anyway.
Yes!!! You're alive! But since that is the case, wouldn't it be nice to
also have a LIFE? Perhaps wording it just that simply would do the
trick... who knows? It's a shame that your doctors are so deaf to that.
If they still won't listen, I'd really work on finding another doctor - a
good fit. And in your initial visit, tell him/her that you are a cancer
survivor interested in LIVING the rest of your life - not just sitting by
being a survivor. Good luck to you, my friend.
I don't blame you for being frustrated. You didn't fight to survive to
live the life of a statue. I hope you can get to the bottom of some of
your other concerns. The whole thing really does suck.