Fed up with fighting

I'm so sorry you're going through all this uncertainty. I've had similar fights including having my chemo appointments changed 5 times in the past week and a half, and nobody willing to give me my blood test and ECG results. I suspect this is all down to communication breakdown, possibly made far worse by the "pingdemic". I know that the chemo nurses and key people in the bookings team had to isolate after being pinged. That left twice the work to be done by half the staff. Poor all of them!

Hopefully after next week things will calm down, although there is such a big backlog that it's going to take a while to catch up. Although I am very thankful that cancer treatment is one of the few non-emergency conditions that has not been delayed due to Covid, we're still being caught in the indirect backwash.

If you have an issue with the GP's surgery, I can recommend writing to them, or emailing if your surgery has that facility. Include copies of any letters from your oncologist, because those don't always make it through to the GP's surgery. Any written correspondence has to be saved to your record and reviewed by your GP, so in the event of a dispute, there is a auditable record of your side.

You're right though - you have to be fit to be ill!

Keep fighting, and I hope you manage to push through. x

Hi Ice Dragon

Sorry to hear of all the hassle that you are having. Do you have a Specialist Nurse assigned to you/your oncologist. If so, maybe you could speak to her and explain how the having to 'fight' is just the 'tin lid' on top of your diagnosis and treatment and that it is messing with your mind. I have found my Specialist Nurse to be a very good advocate and hope yours will be too.

Take care of yourself.

Best wishes

Wallydug

Hi,

Thanks! yes you have to be fit enough to have cancer and chase up otherwise you get forgotten. I have found that there are people that overrule the consultants if they can unpick a reason but crucially don’t tell them.

 I am quite appalled.

Hi,

Yes, I spoke with my nurse today and she is meeting with my consultant tomorrow to re request my dexa scan. It’s just been one thing after another .   I think the worst was the phone call happily telling me that I wasn’t getting the Letrozole. It was sorted but took one heck of a toll on me. 

The actual treatment, surgeon, surgery radiotherapy etc etc has been great it’s the people overriding/overruling the consultants requests that cause the issues. I suspect it’s to save money.