At some point over Monday or Tuesday, Rosa emailed my team and asked if someone was going to actually come and visit me and talk to me about what was going on. They told her they might be able to come around on Thursday. Rosa asked if I would like her there for it. And by default I said ‘no, I don’t need that, I don’t want to put you out…’

Then I came to my senses and told her I would actually really appreciate her being there. So the plan was made for her to come around in the morning before catching her train up North from Euston at around lunchtime on Thursday.

Where, I ask you, would we be without her?

But on the Wednesday, Sarah was stopping by. And while she was there, I had a visitor.
‘Hi Jen, you might remember me from all that business last year when we made you carry around a Do Not Resuscitate order everywhere…’
Yes, I do rather think I remember…
It was my radiotherapy Onc and one of my CNSs (my favourite one). Despite having a bit of an issue with some of Onc’s communication methods at first (i.e. very direct!) I came to really like, appreciate and respect him.

They explained that the chemo had the best chance of working quickly. Not that they thought it would do much. Historically, it’s fairly ineffective against osteosarcoma.  
My radio oncologist Dr A. said that although his colleagues didn’t agree, he was very happy to give me more radiotherapy.
‘I know now never to underestimate you,’ he said.
Good.
So as long as I wanted it, he would give me more. Not as much as he gave me last time, but as much as he could.

First chemo, then if it didn’t work, or it stopped working, radio would be there waiting in the wings. I felt slightly more reassured after getting to talk to him. He certainly wasn’t giving up on me. And I was grateful to have had Sarah there with me as another set of ears.

The next day, Rosa sat with me while we waited for my main Oncologist to show his face. But a disembodied voice came in that did not belong to the man I was waiting for. This new man said he was one of my Oncologists and asked if I had any nausea or side effects from the chemo, before going to leave.

‘Hang on!’ we called after him. I was speechless in the face of still not being given any answers and Rosa explained to him very calmly that we were expecting to see MY Oncologist and get some answers.
He said he was one of my Oncologists – no one I’d ever met though, he was just a ward doctor who liaised with my team.

‘Well what do you want to know?’ he asked.

I rambled somewhat incoherently at him about being suddenly blind and I had no help or support or answers and how on earth was I meant to know what to ask. Thankfully Rosa was there to make a bit more sense than I could, and she explained how overwhelming the situation has been, and how no one has come to see me after a whole week. That we were expecting to see my usual Onc.

Before he left, he told me a bit about my scan and how it’s still stable mostly, except for on the side by my left eye. My blindness is due to the tumour now expanding into my brain and optic nerve. I tried not to think too much about the brain part.
The chat didn’t really substitute for a visit from my Oncologist, but at least I came away from it with a little more understanding of what had happened. But it was talking to my Onc that usually reassured me in times of crisis. Ward Doc said he may still come but it was unlikely, as he is very busy.

But thankfully a short time later, a familiar voice arrived in my bay. He’d made it. He gave me all the usual warning about chemo probably not working but reassured me it was the best thing to try next. Also that although it was going to be pretty rubbish, it was nothing compared to the chemo I’d already had.
But he was going to give me a bit of a smaller dose of it so I would hopefully avoid ending up in A&E with neutropenic sepsis. Although that scared me, that part of me wanted to demand he give me the full dose, every fibre of my body wanted to avoid another hospital admission. A place I had never really minded being in had suddenly become a very scary place. Anyway, it also sounded like he was saying he was putting TKIs back on the table for the future. He’d taken them off because they were killing everyone with head and neck cancer, and the risk was too high. Though it seemed to me that if I was about to die anyway then surely it was worth a try… I guess he had come to a similar conclusion.

By the time he left, I knew the plan, and felt confident in it, as well as reassured that we still had options and that they hadn’t given up on me. And that was definitely something.

They all made sure to explain, once again, that although we can hope to halt the progression of osteosarcoma, we cannot shrink it. So now that it has ventured into my optic nerve, it will never be reversed. I took in what they said, but also refuse to give up hope. Perhaps a past Jen would have thought me a chump for thinking that way, for keeping alive hope in the face of absolutes handed out by an ‘expert’. But this Jen has defied many an odd, proven those very experts wrong (and realised they’re mostly guessing at this point anyway), and I never want to be the type of person who gives up hope, no matter how dire things seem or feel. I think the moment I give up on hope, it’s all over, and I want to keep clinging as tightly as I possibly can to whatever hope I can find until the very last moment.

I am reminded of a quote I read recently in a book I otherwise would not recommend (though if you want a good fiction recommendation, try his books ‘The Humans’ or ‘How To Stop Time’ by the same author, they are phenomenal), the Midnight Library by Matt Haig.

‘And the thing you need to realise is this: the game is never over until it is over. It isn’t over if there is a single pawn still on the board. If one side is down to a pawn and a king, and the other side has every player, there is still a game.’