Waiting to Find Out if the Waiting is Over...

Well, that wasn't quite the haematology appointment I was hoping for.

I knew I'd found some new lumps. That's why I'd contacted the lymphoma team in the first place.

What I hadn't quite anticipated was being told there were lumps in quite a few places.

Including one in my face that I'd completely missed!

Apparently I'm not even particularly good at finding my own lumps anymore.

Although, to be fair, I wasn't exactly looking to start a collection.

So, the next step is a CT scan, followed by a discussion at the multidisciplinary team (MDT) meeting, where the specialists will look at everything and decide what happens next.

And now we wait.

Again.

Except this waiting feels different.

For anyone who doesn't know, I have follicular lymphoma, a type of non-Hodgkin lymphoma.

It's one of those cancers that can sometimes be left untreated for years, provided it's behaving itself and not causing too many problems.

The approach is called watch and wait.

Which sounds wonderfully relaxed, doesn't it?

Almost like somebody has handed you a cup of tea and told you to put your feet up.

In reality, it's more like being told there's something potentially troublesome living inside you, but we're just going to keep an eye on it for now.

And medically, that can make perfect sense.

Emotionally?

Well, that's another bloody story.

Because watch and wait doesn't mean you forget you've got cancer.

It means you learn to live alongside it.

You get on with your life. You work, you go on holiday, you make plans, you laugh, you have ordinary days and occasionally you almost manage to forget about the little unwanted lodger.

Until something reminds you.

A lump.

A symptom.

An appointment.

Or that familiar little voice in your head asking, Is this still okay?

I've been living with that uncertainty for a while now, and although I wouldn't say I've ever particularly enjoyed it, I'd become used to it.

It was familiar territory.

But now?

Now we're waiting to find out whether I might actually need treatment.

And that's a completely different sort of waiting.

Because as much as you know treatment is there if you need it, nobody exactly looks forward to being told it's time to start.

There's the uncertainty about what they'll find on the scan.

What the specialists will say.

Whether things have changed enough to need treatment.

What that treatment might involve.

How I'll feel.

How life might change.

And, of course, all the questions you haven't even thought of yet, which will undoubtedly pop into your head at three in the morning.

The next six weeks feel rather daunting.

Not because I know something terrible is going to happen.

I don't.

That's the whole point.

I don't know.

And sometimes not knowing is the hardest part.

Then there's the fatigue.

Oh, the bloody fatigue.

I've been absolutely exhausted for weeks. Not just a bit tired, not the sort of tired that a decent night's sleep sorts out.

The sort of tired where ordinary things feel enormous.

Where getting washed and dressed can feel like you've already done a day's work.

Where you start mentally calculating how much energy something will cost before you've even attempted it.

And where you begin to wonder whether this is just how life is going to be now.

After this week's appointment, I can't help wondering whether the lymphoma has been contributing to just how dreadful I've been feeling.

We don't know that yet, of course. That's part of what the investigations are for.

But it does make you look at the last few weeks rather differently.

I've spent so much time feeling frustrated with myself for not having the energy to do things.

For being off work.

For needing to rest.

For not being able to function at the level I'm used to.

And perhaps I need to stop treating my body like it's simply being bloody awkward.

Maybe it's been trying to tell me something.

I'm a nurse. I understand the medical reasoning behind watch and wait.

I can explain it perfectly sensibly to somebody else.

But being the patient is a very different experience.

All that knowledge doesn't magically remove the fear.

It doesn't stop you lying awake wondering what's happening inside your own body.

And it certainly doesn't make waiting for scan results any easier.

I'm trying not to get ahead of myself.

There is a CT scan to be done, an MDT discussion to happen and decisions to be made.

Treatment isn't a certainty.

Neither is carrying on with watch and wait.

For now, I'm somewhere in the middle.

And I think that's what I'm finding most difficult.

I'm not frightened because I know what's coming. I'm frightened because I don't.

So, for the next few weeks, I'm going to have to practise some of that pacing I've been banging on about.

Rest when I need to.

Stop feeling guilty about the things I'm not doing.

Try not to Google every possible outcome at ridiculous o'clock.

And remember that I don't have to work out the next six months before I've even had the scan.

There will still be ordinary days.

There will still be cups of tea, daft conversations, dogs demanding attention and probably a cupboard I'll suddenly decide desperately needs sorting.

Because cancer doesn't stop the rest of life happening.

It just has a rather unpleasant habit of barging into the middle of it.

I started writing this blog again because I needed somewhere to put all the thoughts rattling around in my head.

And right now there are quite a few.

So here we are.

Still living.

Still laughing when we can.

Still making plans.

Still waiting.

Only this time, waiting to find out if the waiting is over.

P.S. And now, having contemplated the possibility of cancer treatment and the next six weeks of uncertainty, I'm off to see if we can get the bloody boiler fixed so we can have some hot water.

Because apparently having cancer doesn't exempt you from ordinary household bollocks!

😂