Parachute

Been a good few days. Dexamethasone, my wonder steroid, has got my symptoms under control again so I can speak and type not too badly (and I've got plenty of time to edit!) It is also responsible for waking me up around 3am each morning full of the joys and desperate to write! Mike says it's a bit like someone poking my creative right side brain with a sharp stick . . .

Much of what I'm writing is poetry that's either for particular people, or isn't quite right to share at this point. I thougt I'd like to share this one though. It is specifically about us, but I thought it might just have wider relevance too . . .

Radio therapy starts today. Anything could happen! We'll keep you posted. Much love everyone.

PARACHUTE

My wise friend tells me

It takes a whole family

To manage a grief.

You don’t come to the table because you want to,

But because you have no choice.

This is your table, and you are welcome.

Once you are here

Just stand where you find yourself,

And offer what you have to hold,

And look neither to the right nor to the left

And pause.

You can put your gift down now.

It’s very important not to rank it, compare it, hide it or

Waste time judging it.

Believe me, there is no time to waste.

What have you brought to the table today?

If you have brought Trust, put her down.

Don’t worry about Anger across the table.

She will take the space she craves.

Faith? We need her.

Someone else will bring the Fear we also need.

Confusion? Plenty of scope for her here.

Don’t let Clarity try to sweep her under the carpet, will you?

Pain demands to kick and scream.

Patience can wait for her for as long as it takes.

Denial is hard to let go of, but we will all

Be the poorer for pretending she’s not here.

Perhaps you won’t even know what you’ve brought, or how to name her.

Just lay it all down.

You and your gifts are all welcome.

Keep your eye trained on your gift

And the one for whom you offer it.

She sits in the midst of you

And she needs you as never before.

And when you’re ready

And you sense you’re all ready

You’ll find the cloth that covers the table is a parachute.

Bright and vibrant

A place for you held safe between the others.

Now grasp the silk.

Raise it high

And let your gifts pour

On the one who needs you as never before.

Let your strength lift her

So she will not catch her foot against a stone.

Bring her safe landing.

As you bear her up on wings like eagles.

And know her joy

As you watch her soar and fly.

5^th October 2015

A lot to absorb.

It's been a busy couple of weeks since the seizures a fortnight ago. Detailed scans followed by a long and helpful time with my consultant on Friday. 

The scans have revealed two things:

First, the stereotactic radiosurgery on the 2 adjacent brain tumours back in April has killed the central tissue. It has not, however, killed the tissue around the tumour edges. Therefore the swelling around the larger tumour, which causes the ‘stroke like’ symptoms on language, use of her right side, exhaustion, loss of balance etc, has become worse. More steroids needed to contain it.

Second, and most daunting, the detailed scans have revealed that in the last few weeks a number of new tumours have become detectable scattered in various parts of the brain. Our consultant showed us four that could be clearly seen, and there are likely to be more seeding. The important thing to absorb is that we can’t tackle this sort of spread in the same way. It's a bit like Splat the Rat. We have now moved into a phase where radical action on a single target area to contain or even cure is no longer possible.

Our consultant’s recommendation was that next week we begin some “whole brain” radiotherapy. This is lower dose than the huge shot they administered in the stereotactic radiosurgery, and targets the entire brain, not just the tumour. There are pluses and minuses to this. The plus is that it should slow everything down, and crucially ease the swelling in the brain which caused the seizures, which, if they recur, could be imminently life threatening. The minus is that whole brain radiotherapy can’t discriminate between healthy tissue and tumour tissue.  They can’t predict precisely what effect that may have, but increased exhaustion and loss of some memory are likely to be high on the list. If declining the radiotherapy could protect me against those, I’d have opted for a shorter term with higher functioning; but leaving the tumours would also have adverse consequences on brain function anyway. So this might buy us some time, and that seems an offer worth taking.

One thing it helped me enormously to know was that by exercising my brain and body within what instinct tells me are achievable limits, I will not make anything worse. This isn’t like the swelling on an external wound which can be aggravated by activity. So if I feel like doing something I can try it. However, it will be impossible to know what I will feel like doing until I'm in the moment.

This will make planning this next phase much more challenging, especially regarding response to everyone's kindness. Every visit is going to have to be conditional. We won’t be able to have anyone to stay for the immediate future. I might be manically typing away on the blog or on Facebook one day, then go into radio silence for a fortnight. And, as Mike and the kids have a daunting burden now to carry, they may also go unresponsive for a bit.  The important thing is you know that are we feeling well cared for medically, that we have a local team of friends and community who are loving and looking after us practically, and if we want anything we will be not be afraid to ask. We will love to receive any messages, so long as you understand that we may not be able to answer them. 

I know one or two people have asked questions about the detail of what is happening to my brain.  If you're interested, these'd be my top recommendations.

 For medical questions, I think the clearest website is the Roy Castle Lung Foundation one. Good fact sheets.What I have is lung cancer which has metastasised (spread) to the brain.  

As to what it actually feels like in my head at the moment, if you can cope with a challenging read, I recommend The Iceberg by Marion Coutts. Her partner, the art critic and writer Tom Lubbock, had a brain tumour exactly where my large one is - in the 'language centre' of the brain. Extract here  http://www.theguardian.com/books/2014/jun/15/marion-coutts-tom-lubbock-iceberg-extract. Tough read but it has helped me more than any other book I think.

Enough for now. Thank you for being with us. More soon hopefully.