After my last bout of “difficultitis” early last month the day has finally come for the next CT scan. Usually I get a morning appointment, which is preferable, but today it’s not until 7.30 pm. This means I’m pretty much spending all day gearing up for going. Kind of a drag, but oh well. The usual scanxiety is less, simply because I know I won’t be getting any results today, and who knows when my next oncology appointment will happen. But at the end of the week I’ll get in touch with my GP and ask him to print out a copy of the report. Fingers crossed!
So I found an app today that will track my walking route and tell me how far I’ve gone, and how fast. It’s a bit like Fitbit, but more specific. Fitbit counts all my steps all day long (when I am carrying my iPhone). With this app I can set it to start when I actually begin the WALK. Turns out it’s about 5 kms and takes about an hour. I don’t always follow the exact same route, and I do this at all different times of day (which is the great thing about it – so flexible) but I do enjoy the river walk.
And even though I know it’s just the tip of the iceberg, I’ve actually lost about 4 kilos, which is definitely a step (or 10,000 a day) in the right direction. 🙂
Difficultitis – a chronic condition arising from repeatedly trying to get your doctor to take your complaints seriously. Symptoms include frustration (mild or otherwise), a sense of helplessness, loss of sleep and occasional tears. Although the cause has been well established there is so far no known cure.
I went to see the oncologist today fully armed with notes and print outs of the results from my last ultrasound and blood test, ready to tell her about my latest bout of diverticulitis, and ask about getting a blood test to check for possible infection. And well, that almost happened.
First of all, the possibility of having diverticulitis was shot down when I was told that my last colonoscopy (done a month after I had the first abdominal pain episode) didn’t show any evidence of diverticula, hence they couldn’t be inflamed if they’re not there. Okay…
So I went through my questions and the doctor said that, because of the new pain issue, instead of an MRI (which had been recommended after the ultrasound) I’d be having a CAT scan. Even though I’d read that an MRI is much better than a CAT for detecting liver problems I was assured that a CAT was a preferred “two birds with one stone” approach. So, okay…
I asked the doctor if she had any idea what might be causing the abdominal pain (accompanied by shooting pain in my right arm and shoulder, just like the previous time) and she said no, and that this was why I was getting another CAT scan. And that was it.
My feeling is the liver issue is probably more important than this recurring abdominal pain thing, so a more specific test for that might be better? Rather than a shotgun approach to check out the entire abdominal area. Oh, and I had mentioned that the previous time I went to emergency with the belly pain they did a blood test to check for infection, but then forgot to ask if I should do this again, especially as I am supposed to be travelling next week and the CAT scan probably won’t be for a couple of weeks at least. So now I’m left waiting again.
I really miss my old oncologist. I felt she actually listened to me. Sadly she ended up with cancer and retired shortly afterwards. I mean, this new one is better than some of the awful ones I’ve experienced, but I just don’t feel “heard”, if you know what I mean.
Remember when I got a mystery lower abdominal pain a couple of years ago? It began mid-November and lasted until I had a PET scan near the end of January, and was similar to something that occurred a couple of years previously. WELL IT’S BACK!
The abdominal pain (lower left hand side) started up again on Wednesday. I’m not talking about the usual discomfort I have due to adhesions, hernia, etc. I’m talking PAIN. But fuck it, rather than race to emergency again, I decided to leave it until I see the oncologist on Monday (FINALLY got an appointment). Then I was talking to my friend Ann about this and she said “sounds like when I get diverticulitis”. Say what? So I googled diverticulitis and there were my symptoms to a T. But I mean, wtf? You’d think the many doctors I have described this problem to would have also heard of diverticulitis, no?
Anyhow, learning that this is a fairly normal disease and is rarely life-threatening (though it can be) helped me relax a bit. And now I have a bit more “ammunition” for getting the scans I need when I see the onc. I had an ultrasound done a couple of weeks ago – a month later than it should have been – and they recommended an MRI because they found a couple of dodgy bits in my liver they want to check out further. So now I have to press for the MRI and probably another colonoscopy. DYI post cancer revisions.
And another amazing thing! I casually mentioned to Ann that the radiating pain in my right upper arm had also returned, and although I was sure they couldn’t be related I also thought it was weird that I had this exact same arm pain during the two months I had the belly pain. And good ol’ Ann sent me this…
I mean seriously, who’da thunk it?? Especially as I mentioned the arm pain to the oncologist two years ago and she said it had nothing to do with the abdominal pain. I know I know… diagnosing yourself on the internet isn’t often accurate (or advisable) but it sure does seem like these two problems have been explained, and that they are related. So now I just have to get through the next few days and maybe also get a blood test done to check for infection… it’s always something.