My inner ostrich did a runner for a few days and I had a terrible time. I was an emotional wreck and certain I couldn’t cope with anything. I just wanted to curl in a ball and forget the world.
Wednesday I plucked up the courage to ring the oncology department and ask what time my appointment was on Friday, which was when Dr U said he wanted to see me. What followed was completely surreal. She told me she had instructions from Dr U to await further instructions before giving me an appointment on Thursday as there was no Friday clinic. Bank Holiday. Doctors and nurses and cancers are all active on a Bank Holiday but there can be no clinic without the admin staff and they have the day off. Ok, I would see him a day earlier, that was fine by me. Then she said she would ring me “tomorrow”. I pointed out that tomorrow was Thursday but she said she couldn’t give me an appointment without the instructions.
So, no appointment likely this week. When would I learn anything? No wonder I felt so bad.
She rang before 9 “tomorrow” as promised. My appointment is 10.30 on 14th April, TWO weeks away. I just thanked her. It’s not her fault. Dennis and I tried to work out what it meant. Maybe things aren’t so serious after all. We both cheered up.
Dr U rang me about 11, very apologetic but he explained that he still didn’t have the lab results or the CT scan report so there was no point coming in but he would ring me as soon as he knew anything further. He’d looked at the CT scans and couldn;t see anything remarkable, even in the areas he specifically wanted investigated and agreed that it suggested the cancer hasn’t spread to any of my organs. Not proof but a good sign. On the other hand, my blood markers gave cause for concern. They’d risen from 28 to 66 in a couple of months which suggested activity somewhere so I’d probably need to have a PET scan. In the meantime the MDT had decided I should have chemotherapy (oh joy!) and, since this has happened so closely to my initial diagnosis, they were looking at the same regime again. Well, it nearly broke me last time but I survived. He did say he would monitor it very closely because I had such a hard time before. I’m not sure that will make any difference.
Both Dennis and I felt better for that conversation. We felt we knew things are on schedule and what we are facing. Then Dr U rang again. He’d received the lab results and they were HER negative as he expected so that rules out hormone treatment BUT my specimen was now on its way to a Dorset lab to see if my cancer qualifies for a new immmunotherapy - PT-L1. Only 2 women in Leeds are on it but both are showing excellent results. This is a perk of having secondary breast cancer: doors open to research projects and treatments being trialled. With my luck, I’ll be getting a placebo. However, there’s only a small chance I can get on the trial. We’ll know by later next week (labs dont work over Bank Holidays either). So I’m guessing I’ll go in next week to sign all the paperwork and treatment will start the following week, 12 April - two days before the appointment the stupid woman gave me. Hey, this is oncology - that’s cancer - you do know every day’s delay can mean a LOT?? The breast care nurse rang and explained a few things that sounded a bit more scary so I backed off. Don’t want to know too much.
Meantime, I have someone doing the gardening and I’m still searching for a summerhouse. The ones I like sre self-assembly and there’s not a cat in hell’s chance of D opening the box without causing chaos. I’ll keep looking. BUT
Drum rolls....fanfares.... at the age of 69, I have for the first time EVER eaten an Easter Egg before Easter. My lovely friend Sheila sent me a Lindt bunny and egg but, more important, included a note encouraging me to enjoy them now. See, all I needed was permission! Oh, the egg was wonderful. First it was Lindt which I always associate with Mrs Kirkham, Sheila’s mum. Second, when you broke into it there were those irregularities that make it thicker in places. You don't get that with most eggs today. I can’t tell you what pleasure I got from it. Now I have the perennial problem of how to eat a chocolate bunny. It’s like gingerbread men - feels slightly cannibalistic, at least cruel. I think I shall have to crush it so I don't care what’s what. I have to pack in my chocolate before we’re back to Tastes Of Salt or, worse, soap. Oh noooooooooooo....
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