Out on a limb

It's just about three months since I started this last lot of chemo, and I realise that I've hardly written more than 100 words about the experience - compared to the regular updates I did when I started my first chemo last winter.

On the face of it, it's been much easier. I haven't had any days when I couldn't get out for a walk or do basic things around the house. I've kept on working most of the time with one or two days off each week, if that.

There have been a few nagging side effects. As with the last lot of chemo, some, but not all, of my hair fell out - not enough to be worth wearing the wig which I found so stressful to choose just over a year ago. 

My sense of taste has gone, which is annoying (who knew water could taste so weird?). The skin on my fingers has dried out - which means my phone often doesn't recognise me any more :-( and I've had a few unpleasant mouth sores. The worst of these was this last week - just at the back of my tongue - which made chewing anything solid extremely painful, so I had a few days of soup and smoothies.

The other physical challenge has been that, unlike last time when I had a PICC line, they have had to put a cannula into my hand every time. I'm generally not fussed about needles but apparently I have 'small veins' and this always seemed to be difficult and painful so the backs of my hands were constantly bruised and sore.

But despite the fact that it's mostly been physically ok, I've found it quite hard work emotionally. I've had to go into the chemo unit every week for three weeks, then one week off and start again. And right now that means having to take a Covid test on a Monday morning, isolating until chemo on Wednesday, feeling tired on Thursday and Friday, then two days to do everything before starting again.

But all that is over (at least for a while) now. A couple of weeks ago I had one of my regular scans and yesterday Chris and I met the oncologist to review the results. (I say 'met' - we went to the hospital, he was on Teams from home, this is the Covid world we live in...)

So - the news that many of you will have been waiting for is good. The primary tumour in the pancreas is no larger than it was at the last scan in November 2021. It hasn't spread any further. I still have just three secondaries in my liver, and they are small.

We talked through the results of the scan - I've learned to ask for a print out so I can absorb the information when I get home. Then we talked about future treatment options - there aren't very many. I have now had both of the NICE recommended treatments for pancreatic cancer, although I could have more of the GemCap chemo down the line if I want. And there are possibilities of clinical trials.

My main feeling was that I am ready for a break, so we decided to stop treatment now. I'll have another scan in three months' time to see where things are, and in the meantime the oncologist is going to talk to colleagues and investigate options.

These appointments often seem to bring out all the emotions I've been supressing. So despite the fact that the news from the scan is basically good, I was a bit of a wreck afterwards. Alex, the Macmillan cancer support nurse, found us an empty office and we sat and had a good chat.

On the face of it, I should be relieved or even happy. After all, I'm beating the (pretty appalling) statistics for pancreatic cancer. In fact, when I asked Alex if she knew anyone I could talk to who is in my situation (a year post diagnosis, still pretty healthy), the answer was no. Most people with pancreatic cancer are very ill, or dead, by this stage.

Obviously I have a lot of things going for me. I'm relatively young and fit for someone with this disease. I have a supportive family and community. I have a positive outlook on life, and death.

And maybe that's where it gets to the heart of my dilemma. I don't feel ill. Provided I take the painkillers,* I don't have any symptoms which aren't related to the chemo. It's so easy to kid myself that actually there's nothing wrong with me.

And the longer I go since diagnosis, the easier it is for one part of my head to say, well, you thought you'd be dead, or very sick, by now, and you're not, so maybe you are not going to get sick and die...

It's a fallacy, I know. Like the teenager who - having been warned of the awful effects of taking drugs by their parent - takes a pill and finds it fine, and concludes the parents were wrong about their warnings. No, not wrong, it just hasn't happened yet.

It was actually while we were driving home that the word I needed for what I'm feeling came to me - and it's 'lonely'. I don't have any role models for how to live the next six months or year, or however long I have left. I want someone to come along and tell me what to do, I don't want to have to make it up on my own. I feel like I'm out on a limb, and I don't know what to do.

Today, of course, things feel a bit better. They always do, after a good night's sleep.

I am out on a limb but I'm not on my own - I have so many friends and family thinking of me and praying for me. And I am here, and I have the energy to make some plans.

I just have to go on taking life one day at a time, it's the only way there is.

The snowdrops are starting to come out. This time last year, I didn't think I'd see them again. Bank each moment.

Footnote:

* Did I mention they put me on slow release morphine tablets? They are fabulous!!

This blog is dedicated to Alex, my cancer support nurse. Thank you for being there.