Treatment Starts to Loom

Tuesday was the day I felt better, so it was good timing to go out for a walk with friend and her little boy, and it was a lovely walk. I guess I got home about 4pm, so somewhere between 1.30pm and 4pm a message had been left on my home phone giving me an appointment for the next morning, from a different hospital. The different hospital is the one that does the chemotherapy, so that felt like an ambush.

Prior to discharge, I was told my post op results and treatment plan would be ready 25th August but my consultant was away. Last time I saw a different consultant I got confused so I just decided not to do that again. I liked both doctors, I thought I understood them both, but it seemed not. I am sure they would understand each other perfectly but it just seems simpler for me to stick to the one doctor. My appointment with my consultant for post op pathology and treatment plan is 30th, so I wasn't expecting to hear from anyone about anything until then and definitely not the day before the day I'd been told the results were available. 

The different hospital would have given me the appointment after a multidisciplinary meeting that discussed my treatment plan, so were very efficient, but I felt a little bit like everything was suddenly racing ahead. They’d rung at a stage when I have not been given any information about my treatment plan by my doctor and would not have been even if she hadn’t been away. I’ve also now had to get over the idea that my doctor wasn't involved in the multi disciplinary meeting that decides treatment plans, I kind of know enough about how that works, and she'll have seen everything before I see her.

My first thought, when picking up the message was, do these people think I do nothing but have cancer? They’d left me a message the afternoon before a morning appointment the following day. I also wondered about how they thought I would get there, even without the recent blip which they won’t know about (it delays my ability to drive) they would know I can’t drive myself yet because they know my surgery date. They also know from my address that I live out in the sticks and the hospital is in the city centre. I don’t expect them to know my bus route, but rural services are skeletal, and I don’t feel robust enough for that yet. I don’t have a constantly available driver and I can’t afford a round trip taxi fare (£70); income is decreasing fast. I also had a follow up appointment at the same time re the infection etc. with the practice nurse at my GP’s, and arrangements were all in place, including a lift from lovely friend.

Since one of my early appointments when everyone insisted they couldn’t talk about chemo because it was racing ahead … everyone has talked about chemo as a done deal. Given this is because of my age, I feel like that early on appointment was a bit disingenuous. This does mean I was prepared for it to be part of the treatment plan, and of course I am likely to do whatever the doctors suggest is my best option, but the treatment plan is supposed to be something I discuss with my doctor. Chemo isn’t quite a done deal for me yet because it is 6 months of fairly grim treatment and I want to know about all the options and outcomes.

The practicalities were sorted out easily with a couple of phone calls to helpful people. I will see Dr next Tuesday and go to chemo clinic next Wednesday. I probably sound like a grumpy old woman in world where everyone is trying to help treat me. It is a world where I have no control, so when I make a decision about how I want to receive my results, that is my way of managing this awful process. There’s also a big deal made of the patient’s voice being heard, but it isn’t really. That’s ok, they are the experts, I just like to have the conversation. I’m also probably never going to get over people just landing appointments on me without even just asking if the time/date is ok for me.