Sunday, 4 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 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.


  1. Debbie thank you for this, for your honesty and bravery and grace. Prayers for you and Mike and the family in your journeying

  2. love you debbie
    as always your writing is honest and brilliant like you
    always here if u need anything
    praying for you all xxxxxx

  3. So much appreciate this blog. Thank you for sharing. Love and prayers.

  4. Very interesting to read your blog, as ever. Hope you are able to continue writing as we enjoy reading it. Our prayers are always with you.

  5. Heart broken at this truly shitty news. Thank you so much for sharing with us on your scary journey. Love and prayers with you always xxxxxxxxxxx

  6. Debbie, and Mike, you are an inspiration, please be assured of love and prayers. xx

  7. Ellie is a friend of my Holly ... Your blog is inspirational. Keep strong Debbie ... Thinking of you and your family xxx

  8. Lots of love and we are praying for you all. Xxx

  9. Lots of love and we are praying for you all. Xxx

  10. kolila (above) needs removing, as someone's trying to hijack this with some crass get-rich-quick scheme! As if. All our riches are here with the love of God and man and care for each other. Debbie, I'm so sorry that this has turned out to be such a shitty strain of cancer and that you all have another dark storm to face. My love and prayers and best wishes as you step into this place, and hope that however dark it may seem you may still be able to reach out and touch the hand of God and feel Him sharing the journey with you.

    1. Kolila duly deleted! Thanks, Jane. And yes, be assured, the light shines on in the darkness and the darkness cannot overcome it . . . xx

  11. Bless you Debbie - lots of love and grace to you and Mike. Will be praying.

  12. I'm so sorry for your news Debbie. Our prayers are with you and your lovely family. Stay strong and smile xxx

  13. Debbie, you are fantastic! We love you! Thank you for your honest and detailed update. We are holding you all close in our prayers. Terry and Debbie xxxxx

  14. We love you... me n The Beans xxx