Liz's colonic journey

Archive for April, 2013

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!

 

 

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Bit Blue

Shew – this post is well overdue. Firstly, I didn’t write because I was too busy doing ‘stuff’. I can’t really remember now what it was, but it was fun. And work was and actually continues to be, pretty busy. The last couple of weeks I haven’t had the focus. This is a bit of a blue update, I’m afraid.

It started with intense pain from my liver getting inflamed and rubbing on my ribs and making it worse. This made coughing, sneezing and at one point, breathing, pretty painful. So I took myself off to see the oncologist. Dr Landers was away that week, but Doc James sent me for a CT scan – she thought it might be a bubble on my lung. Happily it wasn’t that – just inflamation where the mofos have started growing again. She was recommending that I go onto an oral form of chemo called Xeloda, which is basically Fulfox but in pill form. She needed to consult with Doc Landers before we could do anything, then they missed each other and didn’t get to talk about my case. In the meantime she gave me a prescription for anti-inflammatories and Tramocet, a quite heavy painkilling narcotic.  It sure took care of the pain, but I spent the week sleeping flat out. When I needed to go out I wouldn’t take the pills because driving while falling asleep isn’t good for one’s health!

We got to see Doc Landers last week and he advised against Xeloda, because apparently it makes one’s hands and feet turn red and crack, whilst also causing nausea. He recommended another dripping chemo regime called Folfiri. It’s basically the same stuff as Folfox but without the Oxyplatylin (that’s the stuff that creates the neuropathy). Apparently the worst side-effect of Folfiri, aside from the nausea and mouth sores, is diarrhoea. Diarrhoea actually seems like a desirable consequence at the moment, but apparently the diarrhoea is controlled by an injection of something into the stomach. None of this sounds like much fun to me right now, but I figure that these things will be much better than the pain or the painkillers that have knocked me out lately.

With a bit of luck, I’ll be feeling focussed and on my feet by the 23 April when I’m supposed to be off to Stellenbosch for the Postgrad Supervision Conference. I’m really glad we’re on Easter holidays at the moment, because everything seems to be taking a lot longer to do. We’ve got our US visas in the bag for the trip to San Francisco, but the UK visa is presenting a problem. Who knew that if you’ve ever had a British passport in the past, you can’t apply for a visitor’s visa to the UK? Pat’s application is in, but I’m now applying for a renewal of the UK passport that I let go of twenty years ago. I have to track down all kinds of family documents to accompany the application, which is quite a pain in the neck.

I’m hoping that I’ll be feeling much better soon, and ready to take the next steps with some verve.

What’s making me the most happy at the moment is my absolute pride in my friends who are graduating with PhDs this month. I’ve watched their journeys (believe me it’s not easy) and they are remarkable women who make a difference in this world. Congratulations Mandy, Kathy, Delysia, Phillippa and Delia – you are amazing! I’m so lucky to know so many amazing people doing such interesting work.

Their triumphs make me feel really good.

I’m sure the blue will shade to more colours as this pain fades – so Yeeha let’s get on with it.

Love to you all.