I’d been expecting one of two things to happen about my PET scan. Either to be told on Nov 28th that the scan was clear, or to get a phone call to bring the appointment forward because of bad news. Instead something different happened which I hadn’t anticipated.
So there I was finishing off my shower when my husband comes running up the stairs and tells me to get my hearing aids in. He’s just taken a phone call from the hospital to say I am booked in on Nov 21st for my endoscopy. My first feelings were of confusion. What endoscopy? What is an endoscopy? Then fear kicked in as the realisation dawned that the PET scan result must be back and there is obviously a problem. Interrogation of the lady in the appointments department got me nowhere, so my next phone call was to my MacMillan nurse. She is a wonderful woman, always sorts everything out straight away.
The good news is that the PET scan has confirmed that there is no cancer left in the areas that were treated. However the scan has picked up a small spot in my throat. They think it is just radiotherapy damage but as the scan can’t differentiate between scar tissue and cancer then it needs further investigation. So I will be having this procedure which involves the swallowing of a camera.
So I have mixed feelings now. Delight that the treatment has worked but I’d always been pretty confident it would. My team had always been hopeful and I couldn’t imagine all those zaps of radiation having no effect. I’m feeling optimistic that this spot in the throat is just RT damage. My team don’t seem too concerned and I reckon my chemo should have dealt with any new cancer. But that nagging doubt is at the back of my mind and it will stay there till Nov 28th when I get the endoscopy result. I suppose I’m really still in the same place I was before, waiting for Nov 28th to know for sure what’s going on. Except now I have to swallow a camera.
My main feeling is annoyance with the hospital administrators. I have the misfortune to live in an area where some of the hospitals have been placed in special measures. The inspectors are in there at the moment and one of the areas of concern is the appointments booking system. My team were very apologetic. I should not have had the call about the endoscopy appointment until someone from my team had rung me first to explain. However the computer doesn’t seem to be able to deal with that sort of situation.
This has been the final straw in a long list of issues I’ve had to put up with. Nothing serious for me personally, but things that could have caused a problem to others. I’ve been given the wrong drugs from the hospital pharmacy twice, I’ve had someone else’s ID wristband put on me, I was prepared for theatre with no allergy bracelet and my medical notes went missing for a week. Then there is the subject of inadequate cleaning on the wards, I was never without my own supply of sanitation equipment as they seem to expect you to eat off the same table that’s been used for your bed bath and various medical procedures.
I’ve often wondered what I’ll do when I’ve recovered, in order to give something back because of all the people who have helped me. I’ve been thinking about helping out in the local cancer charity shop or becoming a hospital volunteer. I know now what I want to do. I’m going to join the patient’s pressure group at the hospital and get involved in the campaign to improve standards. Watch out hospital administrators, you may well be getting to know me soon.
