Tuesday, May 6, 2008

Maintenance Cycle 5

Starts today with a Vincristine injection and then the dreaded D for the rest of the week. One more maintenance cycle and six months to go.

I called on my Anglo-Peruvian friend Talia down in the city on Sunday to find her being visited by a silly French woman who runs a local business. When the subject turned to Kezia, she started twittering about alternative treatment, and my hackles began to rise. She insisted. Even after all her years here she hardly speaks our local language, doesn't speak English and, although I have some French, I couldn't get angry enough in French to tell her what bullshit she was spouting and ended up asking Talia to translate – which, given my increasing annoyance, she did diplomatically.

I couldn' t take any more and abruptly left.

Link, Link, Link, Link


Lea White said...

Oh wow, enough to drive you up the wall!

Are you starting to count down the months?

Lea White

Angus said...

Not sure ... as post-treatment obs make the time we'll be back together still a long way off.

Rob said...

Hi Angus. This kind of thing drives me crazy, of course, and I've been meaning to blog (to use that horrible verb) about it, if I can find a way to do it without hurting anyone's feelings. I can probably share here something I have to be more cagey about on my own site, so....

One of the guys I'm climbing Mt. Rainier with got this reply to a fund raising email he sent out (this is from one of his aunts):

"Hey there! So good to hear from you...I will definitely be praying for Fergus...There are sooooo many cancer cures out there it is unbelievable! There is the Dandilion root....Essiac tea, the yucca plant, Paw Paw plant, which Marvin's sister Jan has been using. She has four brain tumors and they have shrunk a lot since she started using it..I don't know if that is the correct spelling or not... Also there is the Rife machine..Click on royalrife\cancer.com and royalrife.com - royalrife\health.com It is a radio frequency machine that has cured many diseases...Marvin's x wife and sister and friend all decided to take the chemo way and all are passed away within three months. I do not support the cancer society or any of those organizations as they mostly make a person more sick and kills the immune system...."

Ugh. Where to start?

Tamzin said...

I've just come across your blog and have found it very interesting (you can see mine at http://tameli.blogspot.com). My nine year old daughter is currently being treated for T-cell ALL and many of your stories sound familiar, which is comforting!

I feel compelled to comment on the 'quackery' references as we have found complementary therapies incredibly helpful during Meli's chemo. It is always easy to dismiss anything non-allopathic as mere quackery and of course quackery is a justifiable term in some cases. But within the massive world of complementary medicine there is a lot of well researched and provable support that children with cancer can benefit from massively. Nutritional support is just one example - kids on chemo are very vulnerable to potential lethal fungal infections and it is therefore entirely logical to cut out all sugar and yeast from the child's diet. This to me is common sense, and yet the Marsden leaflet on diet recommendations has pictures of milkshakes, bread, licquirice allsorts and cakes in it. I find this utterly irresponsible. I recognise that chemo is the best option that we have as parents of leukaemic children, but if it is done in isolation and without nutritional, homeopathic and other forms of thorough support, it becomes a very superficial method of bringing the child back to health that is not addressing the causes of the cancer or the wider and potentially damaging effects that the chemo can have.

While modern medicine has drastically transformed leukaemia survival rates for kids, the chemo is by no means fullproof. It has its place, to be sure, but, as we have found, it can be made both more effective and safer if used alongside complementary treatments. No doctor, homeopath or reiki practitioner is infallible - parents have to do their own research, ask their own questions and find sources of info and support they trust. Have a look at this charity (www.bobbysfund.org) to see one Dad's amazing mission to doing everything possible to complement his son's chemo for a very rare cancer, and with wonderful success. They are now supporting other families like ours to do the same.

I know that my daughter is doing amazingly because of all the complementary support she is having (homeopathy, naturopathy, reiki and osteopathy amongst others) and we continue to surprise doctors with her strength and absence of infections during this current phase of treatment. So I hope you understand why I feel sadenned to hear all these crucial supports being lumped together and dismissed under the term 'quackery'. Look into it, (e.g. www.canceractive.com) talk to people who have benefitted from it, and understand it before rejecting what is to me, an essential part of cancer treatment for my girl.

Tamzin Pinkerton

Angus said...


I appreciate what you're saying ...

Look at my post on Commonweal ...

and read their guide to complementary therapy. Full of common sense.

It just gets to me when people who know nothing at all about it think they can tell you what to do. Rob's comment sums up my own feelings.

And we won't deny Kezia roast chicken crisps when she's going through Dexamethasone hell!