Saturday, January 05, 2008

the limits of medicine

Thanks so much for the words of acknowledgement and support. Although, to my knowledge, Hugh doesn't have a spiritual faith, he is appreciative of all goodwill towards him including prayers. Yesterday was a heart-aching day after Hugh saw the specialist, accompanied by some family members, and was told of the limited treatment available that may give only brief respite from the advance of the lymphoma. The treatment offered is called temozolomide, in case any of you have an interest in these specifics. The specialist gave Hugh the following article:
Reni, M et al (2007) Temozolomide as salvage treatment for primary brain lymphomas. British Journal of Cancer, 96, 864-867. (
The next step is for Hugh to have an MRI scan as part of the assessment to see if he is a suitable candidate for this drug. It's an oral regime which I gather means he won't need to be hospitalised for the treatment. Hugh, his wife and ball-of-energy daughter are living at my dear parents' place - we all live in the same city and relatively close-by each other.
Keep sending your thoughts and also if you have any great cake recipes, send those also!

Thursday, January 03, 2008

River Styx Film Festival

Drugstore Cowboy,
Elephant's Dream,
Blade Runner,
The Fugitive,
Flags of our Fathers
Letters from Iwo Jima
The Legend of Marilyn Monroe

Becoming an Emperor

This blog posted on Hugh's behalf by Alan the brother in law and Hugh's general factotum. [Hugh writes these in big letters on a pad and I transcribe them]

On diagnosis, I kicked away my reality controls and crashed into a hallucinatory fantasy which merged into the absolutely real. 300 years in the future I am Emperor no less, of Aotearoa New Zealand. The (platonic thank you) embrace of my sister. The more responsive embrace of my wife, this too. But the rest? Fantasy or fact? The grim judgement of the bathroom scales is that every single mouthful of wine, chocolate, and banana cake with lime flavoured icing was not the stuff of fantasy but rather, appallingly real.

Tuesday, January 01, 2008

journeys with my brother

Hello, I am Hugh's sister, Catherine (he also has 2 brothers) and he has given me permission to post updates on his blog and he also wants to thank everyone for their words of encouragement and support - it is very sustaining for him to imagine that other people are taking the time and energy to think of him at a period of his life which is filled with such uncertainty. I'll just keep this note brief. Hugh has an appointment with his oncologist on Friday 4th and this conversation and assessment will give us all some idea as to whether some palliative treatment is potentially available. I very much try to stay with the day-to-day of enjoying Hugh's company, and that of his delightful wife and exuberant daughter. I have worked as an oncology nurse which is both a help and a hindrance - in terms of getting caught up in imaginings of what might be ahead. We've managed to have a memorable Christmas and New Year - it amazes me that, with all that has ravaged Hugh's brain, he is nevertheless incredibly lucid, articulate and breathtakingly brave in facing what he has called 'the descent towards the River Styx.' He gave his own funeral speech at Christmas dinner in his own inimitable style. His words will, I hope, stay with me forever. There is so much to celebrate about a man who has lived his dreams and so little reason to believe that an early departure from the body is warranted. I want to assure you all that Hugh has a circle of support here and that we will companion him as closely as we can. Fortunately he is in no pain and loves to eat, can still watch DVDs with his very minimal eyesight and between dozing can enjoy friendship. Please keep in touch if you wish too - he enjoys your messages which we make sure reach him. With thanks, Catherine