An update - and some plain speaking

Lots of friends have been asking me what's been happening so here's an update.

I last wrote just over a week ago when I was waiting for (and rather dreading) a gastroscopic ultrasound. This is a procedure where they put a tube down your throat and into your stomach and then do an ultrasound scan of the pancreas through the stomach wall. They can also take some biopsies of the pancreas at the same time. Sadly I seem to have typed 'gastroscopic ultrasound' so often that my phone can now autopredict it...

I'd had a gastroscopy (ie the tube but without the scan) a few weeks ago and was really not looking forward to this. But the reality is rarely as bad as the dread, and the procedure all happened without any hitches last Monday afternoon. This time I had conscious sedation which was a big improvement. Note to self: don't be brave, take the drugs on offer.

Then on Thursday I had a PET scan. This is the one where they inject you with some radioactive glucose. The cancer cells are 'hungry' for glucose and absorb this faster than the surrounding tissues, and so show up on the scan. The only practical downsides are that you have to fast for six hours beforehand and that you remain mildly radioactive for about 8 hours afterwards (and so have to avoid close contact with under-18s and pregnant women).

The other mild downsides were that I had to drive to Portsmouth through M27 nightmare roadworks in the pouring rain - and ended up having to pay £5.27 for a sandwich, a drink and crisps after the scan because the auto-checkout didn't recognise a £3.99 Meal Deal. Minor in the global scheme of things.

With the national lockdown ending, it was lovely to be able to be out and about a bit more at the end of the week. My husband and I did some Christmas shopping on Friday afternoon, I was able to take the dog to her agility class on Saturday and go to church in person on Sunday. 

And today we had our first chance to speak to the oncologist about chemotherapy.

As I am young (relatively) and fit (reasonably), they are recommending the strongest type of chemotherapy. That means it's the most effective at shrinking the cancer and minimising the symptoms, but also is likely to have the most side effects. It's a combination of drugs known as FOLFIRINOX (wonder how long it'll take my phone to learn that one).

I think this is probably the way to go but I just want to live with the idea for a while before making a final decision. I'll also need an appointment to put a 'PICC line' in my arm through which the drugs are administered. But we're probably looking at starting chemo just before Christmas. It's done on a two-week cycle and is likely to last six months.

This has been a factual update because I want to get it done and shared, as lots of friends have been asking. But there is another fact I need to share, and this bit might get a bit more emotional.

Pancreatic cancer has the worst survival rate of all common cancers. And the only way to completely cure it is through surgery. In my case, it has spread around a major blood vessel and has possibly also spread to my liver. So it's not going to be possible to operate. Chemotherapy should help shrink it, reduce the symptoms, and prolong my life. But all the medical professionals I've spoken to are very clear - it ain't going to cure it.

I am very open to the possibility of a miracle - believe me! - but I have to get my head around the fact that there isn't a quick fix to this one. Miracles apart, this is going to kill me at some point in the next few years. It could be less than that.

Many kind people have told me that 'Medical science has advanced so much', 'I'm sure you'll recover' and 'You are so strong, you will get through this.' I know this is said with absolutely the best will in the world. I understand that people want to be positive, and they want to give me hope.

But there are different kinds of hope. There is the hope that we will go through our lives without pain, without trauma and without suffering. And you don't need to look around the world for long to see that for the majority of the world's people, that hope is pretty faint. 

But there is a deeper hope - which is that, despite pain, despite suffering, and despite death - things will be OK. 

'All shall be well, all shall be well and all manner of things shall be well' *

So I need to speak plainly. I need to look this one squarely in the eyes. I need to call it out for what it is. Then I can start living each day, and finding my hope in and through what is happening to me.

This post is dedicated to everyone who is finding hope in the darkness.

* Written by Julian of Norwich, a rather remarkable 14th century nun.