Liz's colonic journey

So some of you have been asking, how the trip over was. In short, it was nightmarish. Since we got to SF though I’ve been able to parse bits of the trip and remember the good bits and the horrible bits.

The morning we left, just before Sharon ferried us to the airport, Pat was asking if we should cancel because I was feeling nauseous. This in spite of Doc Landers ordering me off the Xeloda, last Wednesday on the way to our wonderful PaperHeads getaway. That was so great to spend time with funny, witty, interesting and stimulating people who made me feel very special, and helped me through a really bad pain experience. We, jointly decided that it was time to break out the Durogesic patches (morphine) and seriously start with pain management.

Paulette, Lee, Sioux, Carol, Fiona, Nicky thanks for holding my hand, translating the googled package insert and actually getting the packet open and patch placed. Mostly thank you for making me laugh through it all, and drawing on your resources ( thanks Wayne), to establish that Tramper would not fight with Durogesic. Six of the best minds in SA at my disposal. That was an honour. Without that experience, i might have canceled this trip.

At OR Tambo my brother, Andy and his lovely family came to sit with us till we caught the London flight. Luckily I had a Checkers packet folded up in my bag, because nausea became active. Paulette had been working on Virgin Atlantic to try and get our economy seats upgraded, but it didn’t come off. We paid for extra leg space. The VA folk seemed to be reluctant to let me on board if I was too sick. Understandably, I suppose. The fact that we shared the flight with a school tour wasn’t enchanting, screaming, excited 15 year old girls was a bit hard to take.

Somehow we got to Heathrow. I spent a lot of time in the loo, with what I’ve worked out is ‘second day of patch’ -diarrhoea. Needless to say I was pretty washed out!

I’m a bit puzzled as to why the Harrow customs authorities insisted on us unpacking all our in transit meds and toiletries from the clear plastic zip bags we had and packing them into flimsy polythene bags instead. We didn’t quibble but sacrificed a tube of toothpaste to the customs gods.

Pat booked me a cubby bedroom, in one of the lounges, like a closet with loo, shower and bunk bed, tv, in the space of the average wardrobe. It was heaven to sleep till it was time to fly again- five and a half hours. Pat’s cell fritzed so she spent most of the time trying to sort that out.


The folks that assist one’s passage were a delight throughout, just blasting through queues, clarifying our confusion, getting us where we needed to be. Fantastic. We wouldn’t have managed without them.

The flight to SF is a blur of naps and bathroom visits. Luckily we were seated in the ‘blockhead’ where the kids in bassinets are usually, so we were close enough to have no drama or painful waits. They seemed to feed us something every hour. I managed the overran and two glasses of water and was a teary pain on the bum. Pat was a hero and must have been totally knackered.

Jose helped us of the plane with friendly speed and efficiency at SFO. There was no way I could have walked at that point. Seeing my bud, Karen with the wheelchair was the happiest moment I’ve had in years. I was close to a weeping fit with relief. She and Paris got us through the hectic traffic to our condo with such grace. And somehow we had groceries and dinner makings. I have no clue how that happened!

The condo:


Our first day here was great. We stayed on the Castro Valley side of the Bay, and visited Berkeley for lunch and a walk on the pier. It was only on the way back from the end of the pier that I needed the wheelchair.

As you can see the wind was pretty chilly!

Yesterday, While Paris went of to do film festival stuff, Karen drove us around SF city on what she called the ‘nickel tour’. Seven and a half hours of SF traffic during Pride Week? Priceless. She had all the stories of living here years ago. We even saw her apartment, one down from where Janis Joplin lived in the Noe Valley! That’s where we stopped for a Peruvian lunch, having driven from the Embarcadero and along the Pride parade route.

The view from Twin Peaks is a treat and somewhat of a local secret I think.


We went past the church that featured in Sister Act. Haight-Ashbury to look at tie-dye:



On the way out through the Golden Gate Park, we speed at the Cliff House, where we saw the setting of that famous scene from Harold and Maud. It had been a bathhouse that burnt down in the Thirties.


Golden Gate bridge:

Brought us to the end of the three bridges tour -Bay Area bridge, Golden Gate and one other, the name escapes me.

We’d planned to visit Fisherman’s Wharf via the BART today. Karen had to do film festival stuff so we were on our own. Pat and Cathy talked me into taking a rest day. I ended up sleeping from 12 to 5pm. Pat thought I’d gone into a coma!

I’ll have more energy for tomorrow though. We’re off to the screening of Paris and Karen’s movie, Last Call at Mauds, followed by a visit to the pub that used to be Maud’s. Sounds like fun!


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  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!



Just got back from a very, very slow walk around the block with Pat and the dogs. I didn’t think I’d make the full kilometer, because just getting up the stairs to the ladies at the Bellevue Cafe, Kloof this afternoon was pretty hard work. Liza suggested it as a nice place to meet, and we’ve been wanting to check it out for ages. We knew we’d hit gold when we walked in at 12 and found only 2 tables free – the place was humming.

This is   Pat’s Pie of the Day and my Cob Salad:

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Enough food to feed 6 people! Very tasty and lovely garden patio for ambience. Very nice interlude all round.

Back to actually walking. It’s weird how the legs can feel so noodly yet they can still work alright. I was a bit puffed but it was great to meander down the road at Rocky’s pace – no way I’d have been able to hold Pepper. I appreciated every one of Rocky’s ‘postboxes’, but not the old chicken bones that idiots drop on the sidewalk, less than a meter away from a trash bin?

Our cough mixture addict had been back on Friday – 2 liter Cellarcask and two empty cough mixture bottles appear every Friday. Shame.

So good to actually feel like blogging. I’m feeling pretty out of touch, especially conscious that my work colleagues have been picking up my slack because I haven’t been able to get into work much.

I think Pat and I are starting to get a sense of how this chemo works. We know that the 8th day seems to be the sore day with tummy cramps. I usually feel good on the days that I’m having treatment.

Day 1: I have the  Camptosol which makes me eyes play tricks on me – so Pat has to drive me. The treatment takes about an hour and a half. Reading and writing are difficult.

Day 2: Usually feeling good – taking the Zofer antinausea and the Omez that stops stomach ulcers. The treatment takes half an hour and I feel good enough to go into work.

Day 3: Infuser pump is removed and I can drive and go to work.

Day 4: A bit tired and nauseous. Can do a bit of screen-work, reading and writing.

Day 5: Tired but functioning – usually sleep a lot

Day 6 & 7: Don’t feel much like eating – cooking is out of the question. Feels like constipation but isn’t.

Day 8: Stomach cramps from diarhoea that is so far on the extreme end that it takes 12 Imodium tabs to try and get some kind of control. Sleep not really an option.

Day 9: Still crampy and washed out, but able to face food and simple chores around the house.

Day 10: Starting to surface, able to do email, commenting and thinking about work

Day11, 12, 13: Starting to giggle a bit more, play with dogs, can drive a bit and get shopping done.

Day 14: Back to day 1: Bloods, Chemo, wonky eyes.

I’ve decided to do Day 1 Chemo on Wednesday this week, so that I’ll have the worst side-effects over the weekends and hopefully be able to be present at work.

I’m really chuffed with the way the veggie patch is looking:

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The veggie patch is kind of a metaphor for how I’m feeling – a little tattered round the edges but happy to carry on growing. I can honestly say that having my sister and her family visit the week before this chemo, got me back on my feet. Love you guys, thanks for the laughs – even the monkeys stealing the Quality Street chocolates off the coffee table as we were enjoying that excellent braai.




I’ve lost about 7kgs with this chemo, and I think I got quite dehydrated on this last round, which probably didn’t help the tummy cramps. On the plus side the liver pain is definitely much better, so I reckon the chemo is working. I’ll be having a CT scan next week, and then we’ll see whether the side-effects are worth the benefits of this chemo regime.

In the meantime we are getting fully into planning our California/UK trip. My British passport hasn’t come yet, but there’s still five weeks to go before we leave. Time to build up walking stamina for the San Fran hills. I got quite intimidated when I saw the pics of Sioux, Mandz and Chrissie labouring up the hills. I’ve warned Pat that she might need to hire a wheelchair for me!

So many people in my life have been doing amazing things. Sharon B is a hero for actually starting and finishing the Sani2C race last week. I knew she’d do it, and hubby Dave had no doubt, but as always it’s self-doubt that gets us. She did it – and was my inspiration for walking round the block today. What a great tribute and acknowledgement for Robert.

Denise’s daughter is going through rough times with liver issues and the whole family is on my mind. And Joan and Cedric dealing with kidney transplants between their kids – so brave. Well done to Janet for her generosity and to Craig for going through this stuff. It’s a truly inspirational story. Victoria and Lungile dealing with young T’s rock bottom CD count and infections yet turning up for work and smiling and doing their very best.

It amazes me how incredibly courageous people who think of themselves as ordinary are.  This is heroism. I’m blessed to know such remarkable people.










Drama Queen

As you know the last couple of weeks have been not nice. Now, feeling better and looking back on the blur of those weeks, I’m feeling quite amused. I know I’ve got a weird sense of humour, but as I write this I really feeling like chuckling. It’s this cartoon of me coming over all John-Milton-on-his-deathbedish that is stuck in my mind. All pale and wan. Which I was and I’ve lost a fair bit of weight again. Pat reminded me that this happened at the beginning of both previous rounds of chemo.

Make no mistake the inflamed liver pain is no fun at all. While the liver itself doesn’t have nerves, the outside of it does and this bit rubs against the ribs producing a dull ache like an overstrained muscle. Coughing, sneezing or breathing too deeply produces a pain like what I imagine stabbing to feel like. Coughing is also a side-effect of the inflamed liver. (See the connection to Milton’s ‘consumption’ yet?) Then any food that my liver didn’t like created coughing fits that led to throwing up. Add the cramps that come with constipation or severe diarrhoea and you have a very miserable Liz. This wasn’t aided by running out of Eltroxin and having the old thyroid hormones flatten – depression and headaches.

Doc James prescribed a morphine patch (also used to treat equine maladies) as the ‘start of a pain management programme’ . My colleagues in the medical sciences say it’s good to read the drug inserts to see what the indications/contraindications etc are. I’ve decided to put that in the same category as looking up symptoms on the internet. Terrifying. I was really tempted to slap one on immediately, but once you start you have to stay on it, with ever increasing doses as one’s tolerance increases.

Pat and I had a long chat about whether I felt ready to be out of it most of the day. I’m not sure that this will be a side-effect of morphine, but my mum reports being, and dad was definitely, highly sensitive to it.  ‘Seeing fairies’ she calls it. We decided that we’d give milder meds a go first. The antibiotic that Dr James prescribed seems to be reducing the phlegm in my chest, which has reduced the coughing and Benylin with Codine is delicious, putting me fast to sleep in seconds. I could easily get addicted to the escape it offers.

Strangely enough neither Pat nor I thought about “The Stash”, which would probably have helped with the nausea, pain and appetite-loss. We really need to get that tutorial! We had a Transact patch left over from Pat’s balloon foot treatment –  we slapped that on my midriff instead. It worked dulling the sharp pains and bringing down the tight drum feeling under my ribs. The morphine patches have gone back in the medicine cupboard along with the Tramocet and Stilpane that zonked me out so that I was sleeping 18 hours a day. Maybe later.

On Tuesday last week, I started surfacing from the fog, enough to realise that there was no way I was going to be able to participate in the Stellenbosch Postgrad Supervision Conference next week. I felt hugely less stressed once I took that decision. Worrying about the TES project has also been a feature of my angst while lying around all pale and interesting. Delysia, Sibu and Kathleen all jumped in with support from Thenji and Teresa, making it possible for me to not dwell going around in circles.

Even though I felt much better on Wednesday, on Thursday morning I was convinced I was about to expire. Coughing, retching, diarrhoea, cramps and dizziness from low blood pressure, I was very wobbly on my pins. I think this was made worse by not having eaten enough in the previous days. Elaine S. very kindly made and brought round some chicken soup, with egg noodles which along with Ensure kept me going. This is amazing because not only is she a vegetarian, but she’s also having her own torrid time with radiation therapy. Thank you Elaine.

So there I was left hand on brow, right hand thrown out dramatically feeling cruddy and expirational.

Pat fed me some gruel (FutureLife porridge) and I had a good nap and was much better. The bath was brilliant and then Paulette, Sioux and Patsy came to visit bringing the energy, intelligence and humour that kickstarted my ass out of self-pity. Thank you guys.

So why am I finding this all so amusing (after the fact)? I’m examining the experience of having  social ‘permission’ to be close to death. While I was feeling so horrible it was easy to imagine being relieved of that nastiness and being out of it. I certainly wasn’t really appreciating the beauty around me and I wasn’t able to focus on anything that would usually interest me – like work or good TV or internet videos. I didn’t want to turn on a computer. What did speak to me was the breeze through my bedroom window, green smells the heat of the Berg wind days and awareness that things were happening and people were doing things. My audible books were great – just lying there listening to good reading helped a lot. Also the positive thinking posts on FaceBook which I read on my phone. Bite-sized chunks connecting me to special people’s thinking.

I’ve always had a highly active sense of guilt and know myself to be a procrastinator when faced with things that are not easy – like writing and reading carefully. Someone once told me that guilt is the self-punishment we give ourselves for knowing we’ll do the same thing again in the future. It’s not a motivation towards changing things. Looking at the last three weeks and wondering where my focus and commitment disappeared to, I’ve wondered if I haven’t been using the excuse of feeling ‘poorly’ to opt out. I still don’t know. As I feel better, I can’t remember how or why it felt so bad.

So I have to laugh.

P.S. I have no idea why I associate deathbed scenes with John Milton!