Liz's colonic journey

Chemo: the first day

I call this picture Still Life with Chemo Paraphernalia:

Pat took this photo this morning – so excuse the pjs. The black blobs that seem to be wound around Rocky’s head are a little cooler bag, a scarf and a pair of mittens. The cooler bag also contained a bright orange fridge magnet which reads “Beware: Cold Front Ahead”. Next to that is a teddy bear with Sharks scarf, and in front are lip balm, hand cream and a massage lotion. The meds are anti-nausea pills for three days after I’ve finished this round of chemo, there’s another batch of anti-nausea pills for while I’m actually processing the stuff. Then there’s all the very well written literature on how the chemo drugs work and how to manage them – not in medspeak. I’m holding up the ‘chemo bubble takeaway”. My LA Starbucks coffee mug signifies that I’m still allowed to drink coffee. As you can see there’s a lot to explain.

My blood pressure was a bit high, when we arrived at the treatment centre, natural tension said the excellent staff: Kulsoom, Tamsin and Aniesha. They checked that the port was working – basically that blood comes back and mixes with the liquid. That hurt because it involved the needle being stuck through the wound from the surgery, and the saline flush burned. After that there was just the background ache of the surgery bruises.

 They sat me in a leather Lazy Boy, one of 20 in the room, (just like the ones that Cedric and Joan have – must really get one!) except mine had the remote control doofy for raising my legs and sending the backrest back. Intensely comfortable. They warned us that it was a 6 to 6 and a half hour procedure. I sent Pat off to Godfrey before they hung the first anti-nausea muti unit on the stand. Her computer hard drive crashed this morning and work is backing up and she’s getting seriously tense. Godfrey still has the pc which I think has died. He’s trying to recover 15 years’ worth of files of it. Do not say the b*ckup word.

 I chatted a little bit with the other denizens of the room, and eyed the coffee machine, but didn’t move. I wasn’t sure that I was allowed to do that. I pretty much switched on my ipod shuffle – and listened to Val McDermid’s “A Distant Echo” – until I couldn’t stand her torture of the characters another minute. Excellent thriller but I didn’t feel like being thrilled. I was napping in between (apparently the chemo makes you feel tired as you are going along – but this was just the anti-nausea (2 units) and anti-neuropathy (1 unit)). They only started the Oxy – wotsit muti at about 11:30. I napped some more listening to Katherine Neville’s “The Eight” which is about the French Revolution and chess. I now know that I need to take a blanket because I definitely felt cold when the muti started dripping.

 What we hadn’t considered was the need for food. I’d shoved a jungle oats bar into my bag as a kind of afterthought, but that wasn’t enough to keep the hunger pangs at bay. When I started contemplating mugging Mr Naidoo (9th cycle of the same treatment) for his cheese roll, I realised I needed to send Pat an SOS.  As she got on it, the Discovery Medical Aid ladies arrived and presented me with the cutest teddy-bear, which I surreptitiously cuddled for the rest of the day. Amazing how comforting it was. Another fellow there was starting today and he just shoved his bear aside. I wondered if he didn’t feel like cuddling it – or whether he wasn’t ‘allowed to’. 

Necessity must, and I discovered I was allowed to move around when my bladder started saying, “Howzit?”.  That trip to the bathroom, wheeling my stand, led me past the coffee machine – heaven. (The sister who connected my port told me to stay away from anything alternative labelled ‘antioxidants’ – which thankfully means saying goodbye to green tea. I’ve been doing the green laxative tea – which frankly is quite foul. I’m not an aniseed/liquorice fan. She said coffee is fine. I’m taking her at her word – with joy.) This antioxidant thing is a mystery to me still, I’m reluctant to look up anything to do with it on the ‘net. Yesterday I heard on one hand,  that tumours love oxygen – that’s why they make blood vessels to steal the nutrients and what not from the rest of the body. On the other, stay away from anti-oxidants that don’t come from normal food. The rules seem to be: stay away from fats, dairy, refined foods and large doses of sugar.

 I was napping when Pat arrived with a lovely whole wheat cheese, tomato, cucumber and lettuce roll from Bread Ahead. I wolfed half of it down, before noting that Pat looked like she was about to mug me. We shared the rest. 

It all wrapped up at 3.30, when Kulsoom connected the take-home bubble to my port and presented me with the previously mentioned goodie bag. Apparently the chemo causes an extreme pain reaction when skin comes into contact with frigid air. One guy told us he’d been ‘frozen’ for 5 minutes of agony.  It’s going to be hard to remember that – I’m usually the food preparer, but I can’t go there anymore. Poor Pat – her whole life is being turned upside down. I’ve got to train myself to not automatically go to the fridge to take out fruit, milk, nibbles without thinking and to remember to ask Pat to take things out ahead of time – so that it’s at room temp when I need it. I find myself snacking at all hours of the night – usually fruit – to Pepper’s disgust. I suspect this might be a problem when it gets hot and fruit flies reign. I wonder if that’s what the mittens are for? I’m a bit scared to try it out after the story.

For me it was quite restful to lie there imagining the Oxy-muti zapping the naughty cells, followed by the Avastin zipping in and nipping off the greedy blood vessels that these tumours initiate for themselves. I exercised my best classroom management skills, explaining to them that such subversive behaviour was not acceptable and has caused the society of my body to reject them.  I felt quite gleeful. The staff stayed energetic and happy throughout the day but you could see that they were becoming really tired at the end. Constantly checking reactions, blood pressure, joking with people, soothing others and giving advice must be exhausting. I thought students were hard, but maybe we, educators, should be thinking that what they are doing is kind of a life/death exercise? Not so immediate possibly. 

I asked Aniesha how she could do this job day in and day out with such lightness. She said it’s a calling and personal experience adds empathy to her medical understanding of cancer. There are certain people who can do it, and some that can’t.

Pat was shattered – she still had to come home sans pc and collect Rocky, and think through dinner and anticipate needs for the next 18 or so hours.

Meantime I was delighted to be home and having a bowel movement that looked real without any pain. That’s probably TMI, but I’m feeling triumphant.  Pat had to hear the full dimensions and character thereof – count yourselves lucky. The issue of whether floating or sinking is more desirable remains a mystery.

The bubble thing on the lanyard around my neck is really not awkward except when Pepper gets curious.  I did take the anti-nausea pill at about 10 last night, and it seems to have sent me off to sleep very nicely. I had one of Paulette’s bananas (is that a contradiction in terms?) at 3am. The flow of chemo is presenting me with a mathematical challenge. The label says that it contains 60 mls and has a flow rate of 2mls per hour. Which I calculated would take 30 hours to complete. It was started at 3.30 yesterday and when I got up at 5.20 had already finished running. Supposing it had just finished running that would be about 15 hours – so the flow rate was actually 4mls per hour, right?  I’m to go in  at 1pm to get the refill – should take half an hour. I’m going to try and convince Pat to let me drive myself. I’m missing driving Squashy.   

Meantime here’s a shot of the Cape Whiteye baby that was learning to fly in the garden on Monday. Pat managed to take this pic – so fragile at only about 3cm tall, and surrounded by dangers of cats, dogs, predatory thrushes etc, yet with a strength of life instinct that is indomitable.

 

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Comments on: "Chemo: the first day" (28)

  1. Hey Lizo

    Finally figured out how to have your blogs come straight to my email(taken me long enough)…

    I wanted to know if those of us who are far can pop in for a visit via skype? Won’t be the same as bringing in yummy rolls from Bread Ahead but thought might be welcomed when you want a break from your e-novels? Let me know I’m always game for skype.
    much love
    Mandz

  2. thanks for the update.You are truly amazing with your zany sense of humour ! lifts visits food whatever. just sms

  3. Liz, i read your blog today & u never cease to amaze me…even with ur illness u still wana walk the talk…always the excellent teacher, hey.
    My prayers are with you, Liz.
    Luv,
    Nalini

  4. You had me rolling on the floor with laughter when you mentioned wanting to mug Mr Naidoo of his food, and them Pat looking like she wanted to mug you. Oh Liz I really miss that crazy sense of humour of yours. I can’t wait everyday to read your posts because they let me know that you are still you and alive. I am so happy at your positive chat with these tumors telling them where to get of and you encouraging the medication to work. To me when you think positively you are already 3/4 on your way to being healed. your body just has to catch up with your spirit. Please tell Pat I am very impressed by her photography. All my love to you both and healing prayers every second of everyday.

  5. I must admit that I am taking far too long to process the rapid development of the entire illness. It was two weeks ago when Gita and I got the initial prognosis from you and since then so much has happened. I’ve been following your progress ever since and am astounded (but not surprised) at how you have continued being Liz in difficult circumstances.

    Missing you and the usual ‘Allo-Allo’ as you go past my office in the mornings, so I might as well say ‘Allo-Allo’ in anticipation.

    Keep going, you are in my prayers and thoughts – you have been hugged!

    Preggy

    • It has been a roller coaster, Pregz. And just when things seemed to be coming together. I’m missing you too – and the regular laughs at the complete irrationality of the universe, traffic for cyclists and bureaucracy. Feeling sad about the brand new Mac sitting abandoned in my office. Hopefully I can pop in next week for a visit. How did the fun run go? Time?

      • Looking forward to touching base when you can, fun run was okay but with a twist – I was expecting a regular run on the paving but it turned ended up being run on the beach (sand!) so I had to re-calibrate – ended up about seventh or sixth -time wise was slow.
        You should take that Mac away to play with when you can. See you!

  6. amishi gandhi said:

    Hey Liz
    Thanks for the updates. Thinking of you loads and sending you and Pat lots of love and strength. I like the idea of the 6 am prayers – and wake up with one for you each morning.

    Love and hugs
    Amishi

  7. Hey Liz

    How like you asparagus? Personally love the stuff and unusually it is supposed to be seriously good for you – not in my usual league -however I found some and thought of you and Pat. Thinking of you both

    Ruth

  8. Shubnam Rambharos said:

    Hi Liz … I’m at a loss for words – as usual – you’re handling the chemo so bravely. Please let me know if I can help with anything. Sending you lots of love, hugs and prayers. Luv, Shubs

  9. Liz, so often these days my rational voice fails me – that’s usually when I lean on poetry… I thought I would post here from time to time, some poems that I find beautiful – not always necessarily with a message from me to you, but rather just as a way of saying, I am here, listening.

    Mari
    xxx

    Bone
    (Mary Oliver)

    1.

    Understand, I am always trying to figure out

    what the soul is,

    and where hidden,

    and what shape

    and so, last week,

    when I found on the beach

    the ear bone

    of a pilot whale that may have died

    hundreds of years ago, I thought

    maybe I was close

    to discovering something

    for the ear bone

    2.

    is the portion that lasts longest

    in any of us, man or whale; shaped

    like a squat spoon

    with a pink scoop where

    once, in the lively swimmer’s head,

    it joined its two sisters

    in the house of hearing,

    it was only

    two inches long

    and thought: the soul

    might be like this

    so hard, so necessary

    3.

    yet almost nothing.

    Beside me

    the gray sea

    was opening and shutting its wave-doors,

    unfolding over and over

    its time-ridiculing roar;

    I looked but I couldn’t see anything

    through its dark-knit glare;

    yet don’t we all know, the golden sand

    is there at the bottom,

    though our eyes have never seen it,

    nor can our hands ever catch it

    4.

    lest we would sift it down

    into fractions, and facts

    certainties

    and what the soul is, also

    I believe I will never quite know.

    Though I play at the edges of knowing,

    truly I know

    our part is not knowing,

    but looking, and touching, and loving,

    which is the way I walked on,

    softly,

    through the pale-pink morning light.

    from Why I Wake Early (2004)

    • This is lovely, thanks Mari. the soul/psyche thing is very much on my mind. This line made me teary, but happy at the same time:
      “Though I play at the edges of knowing,
      truly I know
      our part is not knowing,
      but looking, and touching, and loving,”

  10. Joan Conolly said:

    Thank you, Liz, for your morning-after account! I am with you all the way when you are telling the antisocial cells how extremely out of line they are!!! I hope that they are getting the message and &^^&&*(*(& off!!! Have a great day, and enjoy the nibbles, love Joan

  11. Hey Liz, how about some masala chai? lotsaluv *g

    • Tempting very tempting – only problem is that I think the only thing allowed is the tea, the cardomom and the vanilla, which would totally spoil the effect!

  12. Liz, you write of the Cape Whiteye baby ” yet with a strength of life instinct that is indomitable” – sounds like someone we all know!

  13. Hey Liz_ U = Cape Whiteye = ^j^’s (angels) —-> sending you lots and lots of love.

  14. Hi Liz
    Was going to ask the same question – can we pop in? … help with getting you there/home, feeding you? etc …..I rather like the idea of cheese rolls from bread ahead, and they have lots of other rather lekker goodies to tempt one while there!
    And – Kathy the nature girl loves the photo of the Cape White-eye baby. Thank Pat for having the time and energy to catch it on film. It’s gorgeous.
    So its back at 1….. thoughts and prayers with you both as I type….
    Kathy

    • Thanks Kathy for the thoughts and prayers, they really are appreciated. Pop ins seem to be encouraged.
      That pic took Pat nearly an hour to get right, because the little thing was really working hard to flutter into the air, and it was darkish from the grey weather. She was also being dive-bombed by the parents and uncles and auntie! Whiteyes being flocking critters. We’re expecting another crop of devil chillis in a couple of months! Have you ever seen them descend on a chilli bush? I reckon that’s why they have white eyes.

  15. Lizzie – you seem to have dealt with this with your inimitable grace. Are you allowed to have visitors during the long process in the hospital? I’m back in town next week and always happy to do a food run. XXX

    • Yes seems I can have visitors – though obviously not en masse. It looks like I’m going to be the fattest person on chemo around!

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