Warning: A Cynical Post

They, the infamous, all-knowing 'them', say that after a cancer diagnosis, in one year you will reach your 'new normal'. As I have said before, the whole new normal thing is bogus and not worth seeking because it doesn't exist.

And its not after a year either. That year concept is wrong. First of all, your treatment may not end in a year. You are forever changed and even if your body returns to something resembling your previous body, your mind has been irreparably scarred. At every doctor appointment or test or scan for the rest of your life there is that evil little voice that says 'what if....'. It also shows up in the middle of the night when you can't sleep, or it wakes you up.

Also there are the people, like me, who find that after that cancer diagnosis, your body continues to rebel and send you down the never ending medical spiral of more ailments. While in chemo, in addition to growing a benign breast tumor, my gall bladder developed gall stones (a completely separate ailment) which led to surgery. Other people I know have developed cardio issues and other treatment side effects. And the women who chose reconstruction face additional surgeries. Never mind all the people who suffer from significant side effects from treatment and surgeries.

I am lying in bed this morning, waiting to take the (damn) cats to the (damn) vet. They are sleeping peacefully next to me but I know at the first sign of the dreaded carriers, I will be faced with the game of 'chase' with me chasing them so I can stuff them in their carriers. Full carriers are hard for me to pick up and carry to the car. When I arrive at the vet it will take two trips to get them inside. But they need their physicals and shots and exams (which they will hate). When we come home they will hate me. And my back will be killing me.

And I hate it that my body no longer allows me to do all the basic things in life that I used to be able to do. I am frustrated with my pudgy body that makes that is difficult to lose weight.

Yesterday I finally finished the latest request for information for my SS Disability application which includes asking me about how my ailments have changed my life from before when I was sort of healthy to after when I can only when I can watch everything I used to like or that used to be easy for me that are now a struggle. I really do not need reminders of the things that I can no longer do.

Pause. Deep breath.

Sometimes my inner cynical b*tch comes through and needs to vent. Maybe this is why I need therapy to cope.

Talking the talk if you haven't walked the walk

This eternally irks me - people who try to talk the talk and they haven't walked the walk. It is when anyone - your doctor, family member, friend, neighbor, cousin's hair dresser's dog walker's uncle - tries to tell you how you feel or should feel or be treated.

And just how did you get this knowledge if you haven't been in my shoes? This is when my friends try to tell me that I will feel better if I take a nap. Or someone else who thinks that I can be cured by something - a doctor appointment, procedure, nap, or something else. Or my former acupuncturist who thought my lymphedema would resolve itself.

I can't forget about the people who tell me about their family member's previous treatment for a similar ailment years ago and how its probably the best thing for me so I should change to another doctor who will give me that same dated protocol.

Let me just say to all of you: you have no idea of what I am going through. I know people who have one or two of my ailments and realize that they only deal with a portion of my life. I think they wonder how I cope.

Then I meet people with one or two of my ailments and/or a whole bunch of other ones and wonder how they cope. I would not attempt to give them any medical advice. Actually those people and I usually get to share tips such as - going to a specific support group, or compare diet modifications for symptom relief, or thoughts on disability insurance. Or we compare doctors and hospitals. But our treatment protocols can be compared but never recommended.

We all realize that we are very different people and our ailments require differing treatments. We are walking the walk so we can talk the talk. We know how to juggle our medications and side effects. We know how to manage fatigue and stress and temperature changes. We understand the significance of ailment progression. We know about long term relationships with doctors. We know what chronic means and how our ailments won't go away and we will continually face health challenges.

If you are not one of these people, please don't give me health advice.

All those "Don'ts"

Normal people (I assume because I haven't been normal in a really long time - at least physically, mentally may be another story) go to the doctor or dentist and get all sorts of advice. Floss, brush, eat healthy, blah, blah, blah.

Me I go to the doctor or dentist or other medical professional and get a list of don'ts.

• Don't lift anything over 15 lbs. (For the rest of your life)
• Don't twist your back (Ditto)
• Don't use a treadmill (Ditto again)
• Don't drink alcohol (because of your meds)
• Don't stop exercising (because you may never be able to start again)
• Don't rake, shovel, vacuum, sweep, or anything like that.
• Don't forget your eye drops twice a day or more often
• Don't forget your dry mouth rinse
• Don't forget your special tooth paste
• Don't forget your new prescriptions

And I'm sure there are more but its too early in the day for my brain to work correctly. These are followed by the lovely tips such as 'eat healthy', 'get plenty of rest', 'take care of yourself', 'floss' (because what dentist hasn't told you to floss), and 'here are some more tests for you'....
I just get frustrated by the limitations in my life. Why can't I just be normal and do all the things I want to do. Museums would be nice but that involves long walks and standing around. Two things I don't do well. And before you suggest it, I'm not ready for a wheelchair anytime soon. I like walking on the beach but now am limited to packed sand at low tide. And I can't go as far as I would like.

They say a cancer diagnosis leads to PTSD and depression often accompanies an RA diagnosis. So how's my mood? I have drugs for that. And therapy. And a lot of frustration.

Okay, I'm calling the doctor

I can't believe how crappy I fell still again. I spoke with my rheumatologist yesterday about some test results. She told me that based on the fact that there is lots of flu going around and I have been sick since Thursday, she thinks I should call my primary care and see if they think I should be tested for the flu or just go on Tamiflu. I refuse to go on another damn medication unless I really need it.

But honestly I can't continue to pretend I feel fine. I will go to the damn doctor. I feel awful. I didn't take a shower yesterday and am making myself take one before I go to the doctor. That may take me a bit.

I don't think I have a temperature. We had two thermometers here. I tried both yesterday and neither said I had a fever. But then one broke and the other one still says my temperature is 97.7. But when I go to Walgreens to pick up my other prescriptions that are waiting for me, I will get a new one and see what it says. I am sure the doctor will take my temperature too.

Yesterday I did get a lot done. I mean I watched three Lifetime movies, knitted, spackled the upstairs room we are about to paint, took care of a whole bunch of phone calls, and even made dinner (in the crockpot). Today I will be a lot less productive.

No I am not blogging about cancer related issues until I feel better and my brain starts working again.  I didn't watch the cancer movie on PBS last night because I was in bed. I might actually try to watch it today. When I do, I'll let you know what I think.