Liz's colonic journey

Next steps

I’m actually feeling very good today. Even with the chill in the air – Durban doesn’t really get cold but I’ve got my new fluffy scarf, a new grey beanie and my new red and black fingerless gloves (care of Dischem – at 20 bucks a pair of gloves who can resist?). We’re starting to get excited about our trip now. My British passport arrived last week Friday, so I can be in the UK legally – yay.  This new energy is great because we can actually think about what we would like to see and do in California while we’re there. Of course there’s Pride on the weekend we arrive, and the screening of K and P’s movie at the Frameline film festival. We’ve agreed that we should definitely see the Cornerstone Festival of Gardens http://www.cornerstonegardens.com/.  Twenty-two designer gardens all in one place?! Sounds marvellous.

I had a CT scan on Monday – to see how this latest regimen is working – The Campto + 5FU and to assess my quality of life on it.  We met Doc Landers today to discuss the results. I could tell from how serious he was that the news wasn’t great.  He was surprised when I said that I felt relatively good and that handling the side-effects made this latest round of chemo reasonable. I mean I’ve been able to actually think and give my M students the feedback they need, fairly quickly. I’ve been able to work at home on the days I haven’t been able to make it into the office.  It’s the physical effort of getting to work and crossing the parking lot and then going up to to the office that is tiring. I’ve loved being able to get in a couple of times to see my amazing colleagues – who are full of life and creative ideas – making things happen. When I get home though I crash for a two hour nap.

This physical tiredness has worried me and made me kick myself for putting off travelling (because we couldn’t afford it or because work needed me too much or some such rubbish). It means that I won’t be able to bounce up and down trails in California’s wonderful nature reserves like I could have a couple of years ago. I’ll see redwoods though, and Alcatraz and San Francisco Bay, the BART and the Muni and that’s before we get to LA! The moral of the story is get started early on your bucket list – the bucket is deep!

The news is a mixture. My lungs are better, but the liver lesions are starting to growing into each other (this is surprising because I haven’t been feeling liverish or nauseous after my few cheats (viz. chelsea bun, block of chocolate,the odd caffeinated coffee) ad haven’t been bilious at all this time round.  Doc Landers showed us the scan and my liver looks like one big dark grey blob as opposed to a light grey mass with black spots. Basically, between Pat and Doc Landers, they’ve decided that this regimen of the Campto and 5FU is not worth it in terms of my quality of life. I’m feeling good today, so I don’t really know – but Pat remembers all the bumps while I put them behind me as soon as that day is over. It’s true that I’ve only managed to get to the office a few times in the last month, because of the side effects.

What has got me through those grotty days has been the visits, facebook posts, the text messages and funny emails. I’m blessed. Joan’s little love palm is thriving in our bathroom. Thanks to everyone for your support – it truly does make a difference. Hugs (even virtual ones) and energy and thoughts really energise me.

Doc Landers congratulated me on making 20 months – when the prognosis was 6 months to 2 years. He reckons I can stick around a bit longer and he’ll dance with me at Christmas. I’m going onto the pills , Xeloda, which are basically the oral form of the 5FU that I’ve been on all along. I start with that on Monday – basically it’s 14 days of a dose morning and evening, then 7 days off ( which makes a cycle). The side effects are the nausea, possibly vomiting etc. The worst thing apparently is hand-foot syndrome, where they get sore and possibly start to crack from skin dryness. Apparently when that happens you just stop taking the pills until it gets better and then you start again. The idea is to stop the lesions growing even more, though there have been some reports of shrinking these are rare.  The plan so far is that I’ll be on Xeloda until we leave (14 days) and probably stay off all chemo until we get back to SA. (We’ll find out for sure on Monday.)

I think this is probably the best possible strategy for the trip. No doubt I’ll be knackered by the time we hit SF, but hopefully I won’t be suffering with dire rear for the duration of the flights to London and then onwards. I’m thinking they need to give me a seat next to the loo in case!

It might be fooling myself but the idea of actually being in control of the medication appeals to me. Such a control freak!

 

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Comments on: "Next steps" (3)

  1. Joan Conolly said:

    Dear Liz, I cannot wait for the account of La Grande Trip!!! In spite of the not-so-good news about your liver, you are feeling good in yourself and that COUNTS! I just know that you and Pat are going to have a wonderful, wonderful time! love Joan

  2. rosalinegovender said:

    Dear Liz, thank you for sharing with us again. I admire your tenacity. It is your positve attitude that has kept you going thus far -KEEP ON KEEPING ON!
    You are so right about starting on that bucket list. Why do we wait so long before we do the things we long to do?
    Whilst travelling down to Grahamstown I met a tour group from Germany -all pensioners. A lady from this group shared about how she and her hubby had planned a trip on retirement -but he passed on the year he retired…how sad. Why wait? Tomorrow maybe too late! Carp diem!
    I know that you and Pat are going to enjoy your trip-its just the boost you need.
    Lots of love and blessings

  3. Liz • you are a force that makes transformational changes in all that you touch – your ‘sound’ touches me all the time and I am always motivated because of your insight, your ability to keep a spirit that moves and moves despite… sending lots of love and lots of thanks

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