Getting my head around it

After a wonderful weekend, it was time to head back to nutritionist Xandria Williams to get my CA blood results this morning. Unfortunately the lab in the US hadn’t sent any results yet and so we were no wiser than before. So we spent an hour talking about the various supplements she suggested I start taking. Are there enough hours in the day to take these? Seemed like quite a few especially if this is only the start, the pancreatic enzymes are 30 per day alone!

I told her that I had another meeting with the oncologist in the evening and that I’m considering one of the proposed treatment options. She confirmed that the supplements would be beneficial in any case. I had been asking her to arrange for me to speak to one of her other patients so that I can find out their experiences but she seems very cagey about that. “Patient confidentiality”, “every case is different” etc. It’s a shame really as I just wanted to gain insight into someone else’s way of thinking and their approach to alternative medicine rather than any intimate details.

We agreed to speak again once the blood test results have come through and that I would continue to follow the dietary advice to date and start taking these supplements. I headed over to Trend’s office in Paddington and it was great to catch up – both about work and what’s coming up in the new year – as well as with a few people who I opened up to about what has been going on.

I’ve missed socialising there and will aim to do that more often. I think I’ve recently burried my head in too many books, too much research, trying to find out as much as I can without giving myself or my mind a rest and without doing the things I love doing. Nutrition is key but I don’t want to confine myself to a home-made prison of ‘can’t do this or that’ and need to balance the healthy lifestyle with fun too. A few hours later and after a long overdue catch up with my friend Magdalene, (and the usual laughter that comes with that) it was time again to go back to Dr. Cleator.

The last time we met a week ago, I had walked out of her practice leaning more towards 12 weekly Taxol. Having thought about this for the past week though, I think the prospect of going there every week and the potential side effect of neuropathy (tingling/ change in sensation of hands, feet etc.) put me off. For me, my senses (touch, smell, feel, taste, etc.) are so important. Feeling the sand under my feet, touching or feeling something with my hands – I wouldn’t want that to change.

A few people I know have gone through both EC and Taxol but given the choice between the two, I think I’m leaning more towards EC. The latter is four times every 3 weeks which means I’d be done within 9 weeks of starting. I presented her with a study that showed that Taxol had very little effect in adjuvant chemo for HER2 negative, ER positive cells (mine) and we discussed the pros and cons of both again.

When pushed and asked which she would recommend (if I had no big preference for either), she said EC. I signed a consent form of potential side effects and as we went through it we got to a section that read: ‘General risks of the therapy’ and she ticked various boxes including: potential hair loss, indigestion, etc. and then stopped and said that unfortunately one of the boxes always reads: ‘death as a complication of treatment’. That was… sobering. I suppose you could argue that we all sign the consent that we may never wake up from a general anesthetic each time we have one but seeing this black and white was something else. We briefly touched on the topic of radiotherapy and the fact that the committee had suggested I would benefit from this (whereas she had previously said I wouldn’t) but agreed that this isn’t a decision we need to take just now.

We discussed a start date for chemo and it looks like it’ll be the first week of January – dates to be confirmed. I asked her to re-confirm that she absolutely recommends I have this treatment to achieve the best possible outcomes of a cure. And she confirmed.

I walked out of the LOC feeling a strange sense of relief that at least I have moved a little bit forward. I can’t say that I’m behind the concept of it all just yet but if there’s any slight chance that it will offer me a better overall prognosis, then I’m willing to give it a go.

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