KiwiCat's updates

my cancer journey, and other stuff

recent posts

about

  • A matter of taste

    There’s a stereotype that pregnancy causes all women to experience weird food cravings. That was never my experience, I had no cravings with either pregnancy, but with my first I did experience intolerances. Jut the thought of red meat while making a shopping list could leave me queasy, and I could smell salt at a significant distance. There was one time I was drawn from one end of the house to the other to find my husband innocently making himself a marmite sanwich. He was informed that it was not going to be eaten in the house, and obliging darling that he is, he took it outside.

    The theory on the cravings and intolerances is that it’s your body trying to help the baby by ensuring you’re getting the right balance of nutrients.  True or not, what is true is that during that first pregnancy I had issues with my gall bladder that resulted in it’s removal shortly after, so fats and salt were to be avoided.

    I reflect on that now as I’m on this chemo journey.

    Cancer likes sugar. I don’t know when I first heard that, years ago, but friends and family have been regularly reminding me of it since my diagnosis.

    As it happens, I don’t have that much of a sweet tooth.That might come as a surprise to anyone who has watched me select sweet options at a morning tea or cafe, but truly that isn’t so much preference as precaution.

    Given the audience for this blog most of you likely know this well, but for those who don’t: garlic is a trigger for my migraines. It is also insidiously present in all manner of sauces, spice mixes and other bases for savoury items, and unless it’s present in large quantities it isn’t generally required to be listed as an ingredient because it’s not a common allergen. Instead it is often just listed as spice.

    Long story short, what I make for myself I know to be safe, but if I’m out it’s often safer to simply choose sweet.

    Given that right now I’m really going nowhere while I’m immunocompromised, then, I can make choices for myself easy enough and cut down on the sweet. I’m not on any particular diet, other than avoiding spicy and fatty foods, it’s more about maintaining strength between doses.

    But what has been interesting since the chemo dose is the sense that my body doesn’t want sweet right now, just like it didn’t want salt in that first pregnancy. Not with anything like the same level of revulsion, but a firm sense that if I have a choice between a spoonful of ice cream or a spoonful of unsweetened yoghurt, I’ll take the yoghurt every time.

    I’ve known for months about being careful with sugar, that’s an intellectual thing. Now it’s suddenly more than that. Taste buds working or not, sweet just doesn’t appeal.

    I think I’ll listen to my body. It seems to know best.

  • The view from Day 7

    Ask me yesterday and I would have been quite dubious about how much work I would achieve today, but overall I’m pleased. I got in 6 hours, which I think is respectable.

    Not that it was easy; the task I wanted to do would have been straightforward except the website I was relying on has been out all day so I had to work around that. And then just after I’d judged I’d had enough for the day, the town lost power so I would have been kicked out anyway.

    For the most part I think I’m doing okay. I stop when I have to, go when I can, and figure out the rest as best I can.

    Tomorrow is one week since the dose. Here’s hoping that things gradually improve with each coming day.

  • I liked Day 4 better

    It’s Day 5 and I’d hoped to start feeling better now I’m past the days of extra medication, but it seems that’s backwards: I’m guessing now they were actually cushioning me a bit.

    In news that will be no surprise to anyone, this isn’t fun. My taste buds went on holiday in time for dinner last night, so all I have at the moment is texture and temperature. I’m tired, queasy and a touch short tempered, but otherwise surviving.

    It’s a nice sunny day, I’m doing nothing but resting, hopefully Day 6 will be better when I get there.

  • On the 3rd day of chemo, my treatment gave to me…

    3 medications, 2 sunburnt cheeks, and 4 hours of insomnia.

    Day 3 is proving rougher than day 2.

    Yesterday I worked a little in the morning then needed a rest. I would then have been fine to go back to work for a bit but it was getting too close to my district nurse appointment so there seemed no point.

    The 4th medication is a syringe and is to be taken 24 hours after chemo. I can self administer but for the first time the district nurse has to watch to see I’m doing it right, and then give me a secure disposal bin for the needles.

    I had had a txt exchange and landed on 11am as my appointment time. I arrived 10 minutes early to discover that they now work out of the medical centre, no longer out of the old hospital where I saw them earlier in the year. Thst was okay, I had time, but of course the medical centre was busy.

    The receptionist had a list of district nurse patients but my name wasn’t on it. She said she’d let them know. At 11:45 the nurse came out to see me and said I was booked at 11 but for Thursday, not Wednesday, and while she could squeeze me in she wasn’t able to do this particular procedure I needed to see her colleague who was currently out doing house calls. By now I needed another lie down so I rang and left a voice message and went home.

    She rang back and booked for 3, back at the old hospital, though she insisted it could wait a few days. I rang the chemo nurses who agreed it would be okay to wait an extra day if I had to but they had put through the urgent referral because the oncologist had scripted it to be given on Wednesday.

    I went at 3, and apart from another argument over the urgency, it got done in 5 minutes. I think the problem stems from the terminology. When I had surgery, that was Day 0. Same if you test positive for covid, the first day of symptoms is Day 0. But for chemo it appears that treatment day is Day 1. I reckon the referral said Day 2, i.e. the day after, but the district nurse was counting from 0. Anyway it got fone, and I still had the energy to do some quick grocery shopping on the way home.

    Back to today, one of my medications is nicknamed ‘Tyrannosaurus Dex’ by the chemo nurses, and they recommend taking as early in the day as possible because it causes insomnia. Well I took it early yesterday but still lost 4 hours sleep overnight. No nausea in the night but it turned up while eating breakfast which I must do before taking Dex.

    The sunburn is a side effect of the chemo itself. I’m not likely to get a tan but I’ll be rosy cheeked.

    It feels like I’ve had a long day already and it’s only just coming up to 9am, but I’m going to try working for a bit, resting when I need to.

    It seems treatment week is going to play havoc with my leave balance but oh well, health comes first.

  • First dose done

    That’s one less dose to do!

    We arrived just after 9 for the 9:30 appointment so in plenty of time. The staff were all very welcoming and soon I was in a comfortable chair with my crochet and a fresh cup of tea.

    Then the waiting started.

    First the oncologist wanted an ECG done  and to see the results before we went ahead. Then there was a trip over to the main hospital building for another quick scan as a baseline before starting.

    Next, starting about 11:30, I had to be educated by the nurse on all the possible side efects and which medicine to take when. There are 6 different ones with different instructions so it took awhile.

    Finally ready, they started trying to put the line in. For this medication ithas to go into a vein but not at your elbow. My veins proved unruly, so if it hadn’t worked on the fourth try we would have had to go back into the main hospital to do it under ultrasound, but it did work.  I’ll be remembering that vein for next time s I feel less like a pincushion!

    On the up side, the dose itself took less than an hour then we were free to go.

    I slept most of the trip, got out of the car and slept again, woke for dinner and slept again pretty much through to getting up at 5:30.

    I don’t currently feel sleepy but I am a but lethargic and one of the pills I just took says it’ll make me sleepy, so it’s goig to be an interesting day. I have a little nausea, but I did get through breakfast and that’s mostly what the medication is for so I’m hopeful it’ll work.

    That’s it for this update but wen I dd the flowers the other day I mentioned that the native iris wasn’t in bloom. Well now it is. Pretty, isn’t it?

  • First treatment

    Hi Damon here just an update Charlotte will do her own.

    The treatment in thames took 45min, most of the day was other checks, finding veins for IV line

    Got back in the car 2.30 and heeded stright home, Charlotte sleeped the whole way. Straight to bed at 3.45

    Have got her up at 6 for some tost and medications then back to bed

    She can fill the detail in later.

    By for now

  • In the winter garden

    It’s officially winter now but our garden doesn’t seem to care.

    I already posted photos of the hibiscus, so here are some of the other flowers popping up. I don’t know what they are, generally, other than pretty. I’ve captioned the ones I do know.

    Aloe vera
    Orchids, a bit ran and wind damaged

    As for fruit, well our couple of surviving cherimoya are still growing and still rock hard so not ready to harvest. They’re stunted but when they soften they should be tasty.

    Then there’s the orange tree which is heavy laden.

    The fruit are almost ready, we’ve started eating a few. When they’re ripe their flesh is quite dark, almost like a grapefruit, and sometimes streaked with red like a blood orange.  Here are two side by side for colour comparison.

    Either way they’re tasty.

  • A real cancer patient

    It may sound silly, I mean I know I am on a cancer journey, I’ve had major surgery, I’ve been bouncing between scans and medical professionals for that very reason, but I just don’t feel like someone who has cancer. What’s that supposed to feel like? I’m not sure, but most of the time right now I feel quite normal and that surely isn’t normal with cancer? Is it?

    Well anyway, yesterday I met my new oncologist. Or, as it turned out, oncologists because I have two: Emma and Sarah. Sarah is the senior oncologist and I spent more time with Emma but at future appointments it’s likely to be one or other rather than both. It does mean if one is bisy or away there’s always someone around, which is nice.

    The latest scan results still show no sign of spread into any organs or muscles, and that’s important because that’s where sarcomas like to live and spread. That’s pretty much what these scans are for, to watch for that. So far so good.

    That said, there is something going on in my lymphatic system. It’s not where sarcomas generally go but mine did. I had 5 lymph nodes removed in November’s surgery and that means the ones left are having to work harder, and that could be the full explanation of what’s happening. Still, out of an abundance of caution, my oncologists are being particularly vigilant.

    Long story short, we’re going to try a round of chemotherapy. It was offered, not pushed on me, and it may have no effect on the lymph nodes if the changes aren’t to do with cancer to begin with, but I think it’s worth doing. I was told back in November that the testing proved the cancer is still somewhere in my body. It hasn’t made itself visible so far, but I’m in favour of giving it a shove back anyway.

    I’m not looking forward to this. I’ve just got life back to normal, and I could have said no, we don’t even know if we’ll be able to see if it’s having an effect.  But I’m mentally ready for it, and I figure getting through it in winter means I should get a nice summer, so that’s something to look forward to.

    The details of when it starts haven’t been figured out yet, but likely before the end of June, running for 18 weeks with treatments every 3 weeks so I have recovery time between. There’s no point trying to guess what impact it’ll have on me, it might be really rough or I might sail through, but the two things I can expect are nausea and lower immunity, so I might be more inclined to linger at home. Which I don’t mind, there’s plenty of crafting to be done.

    I’ll update as I get more details but for now I’m continuing on and going to enjoy each day as it comes.

    I suppose I might now at least feel like a real cancer patient at last. 😊

    Last minute edit: as I was about to post this the phone rang and I have my first treatment date: 16 June. So here we go.

  • End of May weather

    It’s almost the first day of winter, and certainly we’ve had the odd cooler evening and chilly morning but overall it’s been incredibly mild.

    Right now, mid-morning I’ve just been for a walk in short sleeves on a sunny day. Amazing.

    Perhaps our change in altitude helps. It would have been a damp, chily morning down on the flat today. Look at these two photos, one from 6:30, the others from 7, and town is invisible, blanketed with low cloud.

    6:30, with the aid of the camera flash which makes it seem brighter than it was, no sign of town
    7am, no flash needed, still no twn but it’s lifting, you can see a little more of the trees and shore between our neighbour’s and the tall trees at the bottom
    7am, the sun is up but hidden behind the ridge for us

    By comparison, here’s a morning view of town from a few weeks back

    The sun is also behind the ridge in tbis photo

    In the garden things are still growing and blossoming. Here are some recent photos of a handful of our hibiscus – we have about a dozen, all in different colours.

  • Minor medical update

    Two weeks after the lst scan I finally have a date for my next oncologist appointment: 4 June.

    Given the casual nature of the conversation I had with the bookings clerk (who was going to ring sometime in the next fortnight to make an appointment if I hadn’t rung her first), I can only assume they saw nothing upsetting in the scan results, which is a positive thing.

    My Auckland oncologist, Michelle, has referred me to the public team in my own region, which should mean shorter trips overall and also it’s free rather than seeing her on my medical insurance and paying the shortfall, but I can still contact Michelle if I’m worried about anything.

    According to the appointment letter my new oncologist will be Sarah, though it also says ‘or registrar’ so we’ll have to wait and see. I have to go to Hamilton for this first appointment but after that apparently appointments, scans and treatment can all be done in Thames which is much more convenient.

    It’s good to have a date. Another full day of travel but then shorter trips after that sound very good.