Oncologist rant… am I letting things get to me?
I had my first CT scan 2 weeks ago, I’ve been so stressed waiting on the result that I thought would be explained to me in detail like the original diagnosis CT result.
Had an oncology review appointment yesterday and was expecting it to be with the main consultant but instead it was someone on her team, we went through the normal review stuff before my next chemo on Tuesday and then she glossed over the scan and said it showed a partial response and then moved on… I asked her exactly what that meant, she pulled up the report and started reading through it and cherry picked a couple of numbers that were kind of meaningless in the bigger picture, didn’t mention my lungs mets just 1 from the liver and a number from the primary that didn’t match what I was originally told. We asked her to clarify this and she said she would look into it and call me after 5pm yesterday. She didn’t.
Then she said they were going to reduce the fol part of the folfox but didn’t explain why and gave me a prescription for steroid mouthwash for my chemo mouth, I’m not allowed steroids at all after I developed steroid induced diabetes so I questioned this and she told me to just use the glucose monitor and keep an eye on my levels, I’ve decided I’d rather live with the couple of days of misery than risk it.
I don’t know if I’m just overly sensitive and letting things get to me but while this is her job and something she does day in, day out, this is my whole life… I need the facts and figures, I need to know if this is going in the right direction as they’d expect, giving me 1 number doesn’t help me not panic that there may be new lesions or others growing. 2 weeks of sleepless nights will probably now extend to 4 weeks before my next review as they are impossible to get hold of and there’s always the chance I end up with an appointment with the same specialist.
I’m in the uk and under the nhs, can I ask for copies of the CT results so I could atleast find some answers myself? I don’t particularly want to read them but don’t feel like I can ask the questions anywhere else or is this just a normal thing that is routine and they would tell me if it was bad?
I think I just needed to rant and get this out more than anything, I felt so dismissed and unimportant yesterday and have wasted so much time sitting by the phone waiting for it to ring but don’t know
If I’m just hitting a point where I’m overly sensitive