Tuesday 19 May 2015

The world is still good

A fair bit of news to share since the last blog post. Thank you for all your positive encouragement through what has been a difficult phase. While I was to some extent prepared for the possible physical effects of the radiosurgery, I don't think I really had any inkling of what it was likely to do to my mind and emotions to have massive amounts of radiation fired into my brain. That's been something of a roller coaster, so thanks for staying with me through it..

When I last wrote, I was about to go to for a consultation with the surgeon who had agreed to look at operating on the primary tumour in my lung. While part of me was keen to do anything to get the primary cancer removed, I had a number of questions about this. Surgery isn't usually thought to be the best course of action for cancers that have developed secondaries like the ones in my brain; Chemotherapy and Radiotherapy are generally thought to be less invasive and risky, if not necessarily quite so ruthlessly effective. However, by the time I reached the consultation, there was new evidence to factor in to the equation. The biopsy on my lung tumour had been sent off for analysis, and had turned out to be a rare genetic mutation that would respond well to one of the new cancer drugs. This was now being proposed as a better first line of treatment for my lung. If any new secondaries were forming, it would also treat them, unlike the surgical option, and it was less harsh and more effective than chemo. So  - I began the first round of treatment  last week - one simple pill to take at home daily. Meantime, I have been coming off the steroids which have been used to treat the swelling in my brain. So for the last  week it has been the war of the side effects; not quite knowing what is being caused by the cancer drug, and what is being caused by the steroid cold turkey.

I know I'm very sleepy; that my right side is struggling again with numbness and my brain is struggling to find words when I try to write. I know my hair is coming out, and my skin is coming up in a rash. I know my swollen face aches as though it's full of dental anaesthetic that's wearing off.  But as yet, no nausea, throwing up or diarrhoea - so it could be a lot worse! And I have had some treats this week to be thankful for. I spent the weekend in the kitchen baking, which was hugely satisfying.  I joined in with an Iona Big Sing  on Sunday afternoon at church, which was socially pretty tiring but very enjoyable. I had my first 'Keep Fit for Old Gits' class taught by the fabulous Linda Page which felt brilliant. I'm managing to walk the dog most days.

And best of all, now I'm not waiting for surgery, we can begin to plan for the next few weeks and months. A couple of short trips away. The concert we'd booked for my birthday. Treats not just for me but for Mike too, who so deserves a break.

The inside of my brain may well have become a scary place, but the sunlight continues to break in. All in all, the world is still good

9 comments:

  1. when ever i read your words it fills me with a light that is so bright it lights the darkest of days and empowers me to carry on doing my little bit and i look forward to more of your words and the day and weeks role on and hope that one day soon we all can put this behind us and carry on with what ever thing we are required to do from day to day please rest and hope before long we can leave this behind us and continue doing the work over and over again love blessings hugs and best wishes from the Blundell clan

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  2. Thank you for keeping us up to date with this Debbie. I'm glad to hear that there are some less invasive options available...though well aware that the primary challenges are in the mind and soul. Fully understand that your energy levels may be up and down and unpredictable, but we'd love to meet up with you and Mike if and when it works for you. Much love. Andrew and Jane

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  3. Thinking of you lots, thanks for sharing, love Nao xx

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  4. Great to hear your news. Writing of a high quality as usual.

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  5. As always, all my love. Look forward to seeing you at Keep Fit again. xxxxxxxxxxx

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  6. Really glad you and Mike can plan some positive treats and trips. Hope that you continue to find and express light

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  7. So glad to hear positive news from you. I am impressed you can still do keep fit and take the dog for a walk. We are still, and will continue to pray for you. Take care

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  8. Inspirational! You have inspired me and Amber to do the race for life, and I dont run! we will be thinking of you every step of the way, brave lady.
    Love Marika xxxx

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