I know that it's been awhile-again. I decided to wait until I had something resembling updated information.
I said last time that there are things I omitted to tell you. The port was removed in August-and the new one inserted on the other side. I had to fight hard to get that done before the big surgery would be performed, so the idiot doctor who massacred the port took three hours to do both: remove the old port and insert another one on the other side of my chest. He took three hours-and gave me only a local anesthetic. A local! No matter how many times I told him that the pain killers weren't working, he ignored me and kept on going. I wasn't in a position where I could move and kick him, either. And it took me a week when I got back to recover. Talk about karma?
Whatever did I do to warrant these five years anyway? Was I a serial killer in a previous life?
Anyway, my big surgery was performed by the clinical lead, so my efforts to find someone who knew what he was doing were successful. Even he wanted to do the surgery under a local anesthetic. Are these people crazy or what?? Obviously I said that I would have a general anesthetic or I would cancer the surgery. So-that was a good thing, because the operation was very long, and he ended up removing fourteen cancerous tumors. That's right: fourteen. I was gobsmacked-but I was also glad that I'd held out for a general anesthetic, too.
Sometimes you just have to fight for what is right and just, and not care about what other people think. Who cares? They're not me, so the heck with them. Do the right thing.
The op was in October, and I have been taking the - I'll call them estrogen blockers, it's shorter to explain- since the end of July. I have to take those for five years, and deal with the nasty side effects for the duration. I'll just deal with it and do the best I can not to fall over...
The surgeon sent me to the medical oncologist, who wanted me to have either chemo or radiation. I refused both. I decided to remind her of the last five years, when all systems seemed to quit. So she gave me two information sheets about tablets that I would have to take in addition to the ones I'm already taking. Side effects are brutal. One of them would require bloods being drawn every two weeks, because I could end up with leukemia. Great.
On Wednesday I had a meeting with the medical oncologist, and I refused to have chemo or radiotherapy, and I refused to take the tablets. She told me that I would be refused the tablets anyway because I hadn't had chemo. Thank god for that. And I had a PET scan two weeks ago, which showed a few suspicious nodules which will now be investigated. But I did ask to have the next few months off. I said that I would self examine (how I found the first tumor in the first place), that I would be mindful of any symptoms that felt wrong, that I would keep taking the medication that I'm already taking, and that we could do another PET scan in the spring. She looked so relieved! They just don't know what to do with a patient who is educated and can think for herself. So she agreed, and said that someone would contact me if anything on the PET scan needs further action.
Another PET scan is preferable to taking medication that could leave me with leukemia. And when I left the department after the scan I said to the technician that I would be sterilizing everyone within a hundred meters on my way home. Radiation anyone? He just laughed and said that I would be doing everyone else in the area a public service.
And we are now up to date. I tried to keep this short (ish) because I was told by someone who actually follows this blog that I tend to make a short story very long. Huh. How dare she?
Now I'm getting ready for the holidays. In May |I wasn't sure that I would even see this Christmas. I thought that my time might have run out. So after eight months of fighting for my rights, being afraid that I wasn't going to make it-I'm almost here. Miracles happen. And at least I can rest easy knowing that I'm not going to croak before I clean my kitchen. Just imagine someone coming in and saying that the person who lived here was a terrible slob!
Where am I going now? Starbucks. Where else? But I'll be back before Christmas (this Christmas) to bring you the next update.
Please remember: fight for your rights if you need to do so. Nobody else will do it for you.
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