I haven’t been able to write anything for a while as I just don’t know where I’m at! What a mess!
As much as I’m able, I’m going to explain how this all happened:
- First I was given a breast cancer diagnosis and my two very caring cancer doctors explained that I would have chemotherapy, then surgery, then chemotherapy. I accepted that it was a large cancerous mass with some under my arm as well but there was a plan to attack it.
- Then, before we could start any therapies, there were a number of tests over a one month period to determine that my body could cope with all of the treatment. Even though I realized it was all necessary, I felt like we were just spinning our wheels.
- THEN, before we get to any kind of treatment, my body finds a new way to betray me. I woke up with a great deal of pain that rather felt like a bladder infection. Doctors treated that with no success then decided it was a vaginal infection? and tried to treat that with no success.
- Next day I wake up and can’t pee for almost six to eight hours and the pain not only persisted but got worse. After several doctors, new tests and a couple of stabs at a new diagnosis, they decided that I had a mass on my bladder. I left the hospital with a referral to a urologist to check it out. I was told that I would see her in the immediate future. Bless her heart, my family doctor called me on the way home from the hospital to reassure me and offer support. Even though I was thankful for her support, I was still an emotional mess.
- After a week of waiting to hear from the urologist (I tried to call – their office phone doesn’t allow for messages), I called my oncologist for direction. She offered to try to make things happen more quickly. I’m still walking around assuming I have cancer everywhere.
- In the meantime, my cancer surgeon and oncologist decided to put me on a medication to start attacking the cancer by starving it of estrogen. It is not an ideal plan but they were both concerned about chemo when I have a bladder issue as chemo is hard on the bladder.
- Received a call to see an oncology urologist. The day before the appointment I got a call from the original urologist to schedule an appointment. The oncology urologist told me to cancel the second urologist which I did.
- The oncology urologist did a cystoscopy (comparable to a colonoscopy for the bladder) and found no mass at all. It seems that my pelvic sling to support my bladder has slipped and is causing the pain. At the end of the procedure, he tells me that I will need a surgical procedure to remove it and he doesn’t do that. Guess who does? The original urologist whose appointment I have now cancelled. I was relieved that there was no mass but now just thought, “I wonder how long this will be?”
- I don’t know why I thought there it would be no big deal to take the medication that is designed to shrink the cancer. I think that I thought because it wasn’t chemo, it wouldn’t be bad. WELL, it’s not good. It causes massive hot flashes, headaches, light-headedness and pain and weakness in the muscles and joints. Now when I can’t walk, I don’t know if it’s from the pain from the bladder and pelvic issue or if it’s my hips and legs.
- After several weeks of waiting to hear from the urologist, again feeling like we’re just spinning our wheels where the cancer is concerned, I tried calling her office. I tried letting them know that I can’t have my cancer treated until this is taken care of; I tried explaining that I was in so much pain that I can’t do anything all. I was told that I had been moved up the waiting list and would be seen by the end of the month. Today is two days before the end of the month and I haven’t had a phone call.
- Yesterday the pain was so severe that I went to the emergency department. I don’t know what I expected them to do (well, yeah, in my dream I wanted them to fix it all) but I wanted some help because I was spending so much time laying down crying. After ten and a half hours, a doctor told me that this was the emergency department for life and death and I probably wasn’t dying. After a blood and urine test I was sent home but I was thankful I was going home with some strong pain medication.
- So in a couple of days I will see the oncologist again for a regularly scheduled appointment and we can still make plans.
- It’s now four and a half months since my original diagnosis and I feel like we’re no further ahead than that first moment that they told me I have cancer.
I am not angry with the doctors and to be honest, my doctors have been compassionate, efficient, honest and want to get on with the job. I believe I am just frustrated at the systemic issues and that nothing is happening. This frustration leads to fear and living on edge. It also means I don’t sleep well and I know that’s not good for me at all.
I realize that I have described most of these incidents individually, but listed all together it almost seems like a comedy of errors, but I’m not laughing. In fact, I cry far too often, sometimes from frustration, sometimes from pain, sometimes from anger but I need to get on with things.
