Liz's colonic journey

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.

 

 

 

 

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Getting going again

Oy vey, this being busy with ‘old normal’ really messes with blogging. I think it might be not having so much time to think because that’s all one can do when one is feeling blech.

The news that I’ve been very tardy in sharing is that my CT scan of two weeks ago showed that there had been no further tumours and no tumour growth since July last year. This means that the chemo halted the growth. This is good news and means that I don’t have any treatment for three months.

My next appointment for a CT scan and consultation with Doc Landers is the end of April. With a bit of luck and some care I can look after my liver and stop it getting inflamed and painful. So unless something goes wrong I’ve got a free run for three months.

Last year we went to Australia, which kind of made being off chemo fairly easy because everything was different. Going back on in July discombobulated me, because I’d forgotten all the coping strategies and had to rediscover paying attention to side-effects.

I think one reason why I didn’t turn into a skeleton through this chemo, was that I remembered that eating is pretty important even when the food tastes less than tasty and the hunger pangs don’t kick in. So I lost weight during the first two cycles and then started picking up again –  now at a fair 56kgs. Doc Landers doesn’t think my proud little tummy/hip roll is a problem!

And the wheatgrass seems to still be working its magic, though I confess I’m on the pills now not the shots (yech). I’m one of the lucky ones who go through a second round of chemo cycles without having to have a blood transfusion. I had those two infections, but once we worked out how to spot them, and blast them with antibiotics quickly, it became routine.

I think what kept me going was staying connected with all of your care, via FaceBook, Skype and What’s App on the noodly days and face to face on the working/weekend days. I’ve noticed that the people from the Onco Centre, who battle the most, are those that don’t get out for a coffee, sharing a meal with friends or family, and can’t work.

I do need to say thank you again to everyone for putting up with the chemo-induced forgetfulness and noodles. I really hate those moments when I have to Google “Orson Welles” to remember “Citizen Kane”.  Then again, I’m so grateful that I can Google and not dwell on and in my fogginess.

The other thing is my gratitude for everyone accepting what I think is ‘enough’. I can’t thank each of you enough – there are too many instances of lovingkindness (such a beautiful word) to acknowledge everyone in this blog unless I blog everyday, maybe that’s what I should do. Short blogs with a list of appreciations – the value of that would be that you’d know that the things that you think are too little to mean much make a huge difference.

I do get tired and it’s bothering me that having been off chemo now for over two weeks, I still feel the need to nap after three hours of concentration. One journal article review today on top of sorting out a glitch with SAOL and various day to day things like emails, and I was ready to topple.  The difference is, I guess, that I can keep myself going, so it might be that I’ve just developed a bad, though delicious, habit of napping.  So today was the first day that I did not take a nap. It feels quite good.

I’m blessed and I really feel for people with cancer who’s work means they have to be in one place of business going to the office, or whose work is physical, like hair-dressers and those working in construction. It must be harder on the days that they are feeling and looking good and seem to be their ‘old’ selves, when the illness is invisible. The tension between wanting the ‘old normal’ back and realising that ‘new normal’ has to be the way forward – is hard to manage – enough to make anyone run away.

Not a very well thought out post. Just catching up a bit.

Word of Advice: Watch out for books – they are dangerous. Pat dropped one on her foot on Saturday – the resulting beautiful sky blue egg that blew up on her teeny foot was quite awe inspiring. A visit to the emergency room at Crompton Hospital assured us that nothing was broken and that the hematoma would go down with RICE (Rest, Ice, Compression, Elevation). She was lame for three days but is hopping about quite nicely now, albeit with navy blue toes.
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We’re good and you are good – thank you.

image Mari asked me yesterday for pictures of the garden and this morning gave a brilliant opportunity to catch it. How nice to have full sun and clear skies for a change, grey skies leave me rather drab. (I wish I could send some of our rain to Australia where they are having these horrible wild fires that just love wild eucalyptus.) We are blessed with our greenery. I love the different green contrasts around this oregano plant, with the splash of colour from the garlic chives.

The garden has suffered (sort of) from the lack of Alphaeus’ attentions for nearly a month. I love our treed place. The leaf fall associated with it would drive some wild, but I’ve quite enjoyed kicking through the leaves and the peppercorn berries to get to the postbox. The yellow Mandevillea (if that’s what it is) is glorious in the sun.

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And I’m pretty chuffed with how well the egg plants are growing – I see a tasty Mousaka every time I look at them. The monkeys have steered clear of them, though they did have a couple of chomps out of the tomatoes.

imageI’m loving watching the birds from the porch. Two of our neighbours asked if they could cut back some of the trees bordering their properties and that’s opened up whole new sunny areas that we would not have been able to create. Have to say that my hammock was looking particularly attractive today.

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Since these pics this morning, Alphaeus was in and worked his magic, while Victoria got us sorted indoors. We’ve managed to stay on top of the housekeeping over the festive season, but 32 was nowhere near as pristine as usual.

Having chemo over Christmas felt very different to last year. It’s part of the new normal to go in and just do it. On the plus side, my bloods have been good all through, except for one week’s delay for that blasted infection. I haven’t had any more infections since the beginning of December. The downside is that the longer the chemo goes on, the worse one definitely feels. The yuk/weak feeling seemed to hit me earlier – the Friday of chemo week rather than the Sunday/Monday following it.

What was weird though is that I didn’t seem to have the fall-out on Monday the 24th when we went to Paul Roux to spend Christmas with Pat’s brother, Richard. It rained buckets and the top temperature for the first two days was 16C. Having packed in a 32C Durban swelter, I took all the wrong kind of clothes. Sandals, cutoffs and mud don’t go well together!  It was a beautiful time of ‘kuiering’ though, limited digital access meant talking to real, interesting people on Rich’s porch about things we wouldn’t normally discuss. It was fun – and I didn’t feel nauseous once – though I confess to two or three naps a day.

My first DRC Christmas morning service was fascinating. The dominee made us feel so at home that it was impossible not to follow the service in spite of my limited Afrikaans. There wasn’t a dry eye in the church after the last hymn (StilleNag/Silent Night) and the responses of farewell.

We spent a really quiet New Year. Actually I went to bed at 10 because I was feeling ‘lomp’ only to be wakened by a massive bomb firework going off outside the bedroom window at 12 on the dot. I worried about the dogs who were guarding, and neither seemed fazed. In fact, Rocky looked seriously interested, while Pepper continued to snooze and chase dream rabbits. I think they felt safe because Pat was sitting quietly in the lounge watching telly. I was highly stimulated to say the least – the adrenalin giving me the energy to text and call quite a few people. Maybe that’s why humans need fireworks?

I finished the last dose of chemo in this treatment round on Friday last week. The weekend was very lazy and I just couldn’t get going with anything – lots of naps. The mini-miracle was having tea with Joan C and Charl at the KZNSA gallery on Sunday, which was a happily sunny day. Beautiful. It was quite an effort to get into the car with Pat driving, and then to find Charl and Joan at the table. Yet after two hours of chatting and catching up, with a lovely feta and spinach muffin, I felt like a new woman. I came home and vacuumed the house – the dustbunnies were the size of small cats! How does that happen? How is it that being around special people is so re-energising? I’ve been feeling better every day since. I even got to do a bit of work today. My head is getting organised and I’m starting to focus. This is a very Good Thing. The list of things to do seems to grow exponentially.

I have my next CT scan on the 16th and consult with Doc Landers on the 18th to evaluate how well this round of chemo has worked, and what to do next, if anything.  I need to be on my feet for June and our trip to London and San Francisco. First things first though, we need to get our visas sorted!

It’s so nice to have everybody back in town, I missed Sharon and Dave while they were away, and Paulette and  Sioux and everybody else while we were out of circulation. Let’s go 2013!

Favourite time of the year

So my bloods were good this week, in spite of the infection that knocked me out on Thursday of the last round. I’m on the second last round of the last cycle of 6 chemo cycles – 6 months worth done. I’ll be meeting Doc L after I’ve done the last one in the first week of January. Hopefully the CT scan, will show that the mofos got halted possibly regressed a bit.

Xmas is my favourite time of the year. I love the bling and sparkle and colours and lights, and I’m a total sucker for Christmas carols. When little kids sing them, I’m a soggy mess. Mind you I get weepy hearing little kids singing anything together, and brass bands – the Floral Dance gets me every time.

And On Ilkla Moor Baht ‘at was one of my dad’s fun songs. Milligan-esque dark humour (he who’s epitaph reads “I told you I was ill”) which talks to my twisted sense of humour. You have to read this with a deep Yorkshire accent. (Ba’Ta-at – without your hat).

W’ere hast tha bin sin I saw thee?

On Ilkley Moor Ba’ Ta-at

W’ere hast tha bin sin I saw thee? x2

On Ilkley Moor Ba’ Tat x3

Tha’ll go an get thi dearth o’ cold

On Ilkley Moor Ba’ Ta-at x3

Tha’ll go an get thi dearth o’ cold

Tha’ll go an get thi dearth o’ cold

On Ilkley Moor Ba’ Tat x3

Then we shall have to berry thee

On Ilkley Moor Ba’ Ta-at

Then we shall have to berry thee  x2

On Ilkley Moor Ba’ Tat x3

Then'(t) worms’ll come an ate thee up

On Ilkley Moor Ba’ Ta-at

Then’ worms’ll come an ate thee up  x2

On Ilkley Moor Ba’ Tat x3

Then’ ducks’ll come and ate up worms

On Ilkley Moor Ba’ Ta-at

Then’ ducks’ll come and ate up worms x2

On Ilkley Moor Ba’ Tat  x3

Then we’sh'(u)ll come an eat up ducks

On Ilkley Moor Ba’ Ta-at

Then we’sh’ll come an eat up ducks x2

On Ilkley Moor Ba’ Tat

Then we’sh’ll av all av eaten thee

On Ilkley Moor Ba’ Ta-at

Then we’sh’ll av all av eaten thee x2

On Ilkley Moor Ba’ Tat x3

You can see why Brassed Off is one of my favourite movies of all time, neh?

This week’s achievements have been getting a tree and dressing it. We went for a real tree from the Rotarians, unfortunately it’s looking a bit verlep from standing in the hot sun all weekend. Still I’m enjoying its scent. On the plus side, it will be worm food in the next year, thanks to Delysia and Calvin. D volunteered Calvin’s worm farming skills towards getting Pat’s worm farm established again. (Tip: Worms don’t like pineapple or onions or citrus.) See the things that one discusses when invited to a delightful Hi-Lo-T by Joan C. That was Wednesday last week. Such a clever idea, to invite friends to a tea hosted at a lovely new art/garden centre – “Spade” – 183 Lothian Rd, Durban North. Then Joan generously gave us all a Christmas gift voucher for the goodies at the shop. This is how Delysia and I came to be discussing the benefits of Worm Wee.

Dressing the tree with all our chotchkas – Elvis, Seven of Nine from Star Trek, a tram car from San Francisco, a scottish sporan, Micky Mouse Ears from Disneyland, a totem pole from Alaska  and other lovely memories sent by my special mate Karen in LA.

We met on the internet back in ’99  beta-reading some Alt-Xena fanfic – it was actually a take off of Survivor which was just hitting the airwaves in the US.(Castaway   The link is still active! Beware 50 Shades of Grey is tired by comparison and not nearly as funny.) Fun times that taught me a lot about writing (when I should have been doing my Master’s write-up!). My favourite tree dec from Karen is these two snowpeople.

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We have apples with the names of family and friends who we can’t be with this Christmas. And some cute Mauritian dodo and angelfish keyrings to remember this year’s adventures. Shock horror – We don’t have any Aussie decorations. It’s hard to buy Christmas decs at Easter!  I love our tree -it’s a 3D snapshot of the years we’ve been together.

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So that’s this week to date. Last week was fun galore, even though it started with a weak Monday. I fell over on the Thursday of the e-Learning festival with an infection that made me feel like I wouldn’t make the new year. This was after having an absolutely lovely time at Sharon’s with the A and B walking crew. Forgive the pic quality, I need lessons in cellphone photography.  I just want you to note the clever table decs that Sharon made with prezzy bags with interesting spices, indicating our seats. We had to guess who’s was who’s on the basis of the pics Sharon had pasted on the bags. Great fun. My pics were a pic of Terry Pratchett and a teacher teaching class. Pat’s were a pic of a golden retriever and a family tree. So clever. The food was healthy and delicious – a glorious evening with special people.

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This made Thursday’s crunch a big shock. Apparently the chemo port that is installed in my chest can start playing up and getting noo-noos as the body tries to reject them. Hopefully I won’t have to get mine replaced. We caught it early and the Onco sisters and the Godfrey, our excellent pharmacist got the antibiotics delivered to the door without asking, almost before Pat had got me back from having the take-away pump/ needle removed. Amazing. The drugs worked immediately enough for me to attend the elearning festival online at least. Sleeping a lot through the weekend had me awake and feeling better, so that I could go to our PaperHeaDs overnighter and catch-up on Tuesday.

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Getaways are so good for catching up on where we all are – more time than a quick lunch or tea. We missed all the members who couldn’t be there, but ate like queens to make up for missing them. I miss our writing Getaways. Linton House in Shakaskraal was beautiful.  The swallows nesting on the verandah were fascinating. I caught one mum feeding her chicks. I’ve never seen them so close up. They’re an absolute joy to watch as they swoop and dance in the air. Unfortunately we could only manage one night, but it was quality – sharing triumphs and tears and the beauty of friendship with unique people.

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Wednesday morning was Joan C’s Hi-Lo-T with even more delicious, vegetarian delights and treats and gooood coffee already mentioned. Lunch with Andrea at the fabulous KZNSA gallery was great too, even though we didn’t eat lunch – I couldn’t squeeze another thing into my tummy, no matter how tasty!

No wonder I was feeling strong on Thursday and even better on Friday. The e-Team worked, or rather Mari and Preggy worked until 3 (campus closed at 12!) while the rest of us supported them morally and festively, everybody brought a seasonal festive dish – Prega’s mum’s mild cheese curry (can’t remember the name again, Prega!) with Gita’s rotis took the prize, I think. I’m thinking of Christmas as an extension of the beautiful Diwali and Eid celebrations.

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Can you see why I love my job?

Love my life too – must be doing something right! I’m blessed to be on the planet with surrounded by the most amazing, giving, caring people. I don’t know any horrible people – don’t know how many people can say that.

Conferencing

It was ambitious, signing up for HELTASA. It was worth it. Last Monday, I really didn’t know how I’d keep my bod moving from Tuesday through to Friday. Yet Tuesday was just about getting to the airport, getting on the plane, getting to Stellenbosch and finding the hotel. Ok, so we landed at 1.30 and eventually found the hotel at 5pm, but we had fun on the way.

Don’t believe the driving instructions of a manager of a Debonair’s store! It goes without saying that relying on the navigation function of one’s smartphone is stupid. In the end it was my gut instinct that found the hotel. True, I had run ten kms around that hotel in the past, but it all looked strange to me, from the car’s vantage point.

Then it was just a matter of getting up in the morning and getting to Neelsie’s on the Stellenbosch Campus on time. I was green with envy at this mini-mall serving the university community’s every need from a grocery store and interesting food vendors, to the bookshop and art stalls, to a travel agent, 3 banks and a 2 venue movie house. Three storeys of student friendly entrepreneurial activity, with plenty of room to sit around and share a coffee. I dream for DUT.

There was a fair amount of walking between venues, more than I’ve done for quite a while. I managed to nearly knock myself senseless walking into a parking zone’s descending boom just before Bwalya and my presentation. Luckily she sparkled and I didn’t need to say much.

It was lovely to see so many people that I haven’t seen for ages. Too many to name, but each so special and each making a difference in their own unique ways. I was rather boggled at how many people I knew and who know me from all the years of working alongside each other. It was humbling, but I was chuffed that my memory didn’t let me down for the whole week. Chemo fog lifted. So great to have a week away from the schedule.

I feel a bit guilty that I didn’t make the dinner get togethers. Sorry guys. I missed you but 6 to 18:00 was as much as the battery could manage without a kip in the middle of the day. Feels stupid but it’s the reality.

I listened to great papers and stunning keynote addresses. I loved what Tai Peseta had to say and Crane Soudien was intensely provocative. I’m only sorry we had to leave before Ron Barnett’s plenary session.

I have to say that Mari’s presentation of her and Chris’s work on moving Jewellery Design physical exhibitions to virtual spaces and the use of haiku moving to Twitter in the form of haiga, was one of the most challenging and beautiful things I’ve ever seen in academia. Hopefully they’ll create a virtual space to show it off to more people.

The company was grand and the ideas stimulating – great conference!

This is Bwalya and Sibongile looking terribly elegant for the traditionally themed Gala Dinner at Moyo at Spier Estate. (I missed this, but am grateful because the dancing on rocks seems to have cut some feet up.)

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This is Bwalya (aren’t the Shweshwe dungarees special?) and I during our Cafe conversation presentation – pic care of Mari.

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This is the beautiful talking stick that Bwalya created to ensure that everyone got a chance to speak.

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And who can beat this beautiful view of a Stellenbosch sunset (7.30 nearly my bedtime) from the hotel verandah.

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Magnificent.

I had a good long rest over the weekend. Pat had to put up with me grunting – I’d used up my entire word allocation for ten days.

Tomorrow it’s back to chemo, a got to do. I’m looking forward to our e-Learning festival Wednesday/Thursday (online conference) and Friday – awards ceremony.

All in all a very happy last ten days.

Well done to the workers – most people don’t see what you do in detail – but it all makes a very unique difference.

Just thinking

I’d never considered the problem of melting suppositories before today. I’m loving the warmth and being able to wear t-shirts without feeling the tingles. It’s supposed to go up to 35C. Pat, Victoria, Elphaeus and the hounds are all feeling the heat, while I’m quite sprightly. We’re having bursts of cold from the aircon to make things livable for the majority, during which time I wander around the garden.

Back to the suppositories, the need for which, comes up roughly 3-4 days after chemo is finished. I don’t fancy putting them in the fridge for hygiene and logistical reasons. Shudder. So what does one do to avoid them changing into impossible to use shapes and creating pools of waxy stuff in the medicine cupboard? My solution is a cooler bag with a small ice pack. Remove one prior to use and allow to warm to room temperature! Amazing how problem-solving skills are transferable.

  1. Identify the challenge
  2. Consider the causes
  3. Consider what would reverse the cause, without creating more complications
  4. Consider whether the materials are available
  5. Put plan into action.

This profound analysis is not helping me with the problem of getting Bwalya and my paper ready for next Wednesday at HELTASA (Higher Education Learning and Teaching Association of SA). We’ve got the skeleton and bits and pieces all over. We just need to pull it all together –fairly quickly. We’re quite excited because the presentation is in a format called Café Conversations, rather than 20 minutes to present followed by 10 minutes of questions. This is actually sort of a round table with everybody who wants to, giving the benefit of their insight once they are in possession of the ‘talking stick’.

Our subject is Iconic imagination and Epistemological Access. Big words but an simple question, which came from Bwalya watching a TED talk in which Nigerian writer,……..*., talked about her youth growing up with the mental picture from her consumption of story books of princesses as figures/icons who were white and pink and drank tea with an extended pinky finger. Clearly with such an icon, the notion of an African princess was difficult. Bwalya pushed this idea to providing an explanation of some challenges she found in teaching visual literacy. Our presentation is subtitled: “Marian Munroe is a white thing”. Bwalya is wondering whether the university’s notions of what counts as valid knowing in Arts and Design draws too much on westernized icons, preventing students from accessing the type of thinking/inspiration that creates new images and artifacts. By extension this plays into the learning of Physics, IT and Mathematics (which constantly draw on metaphors for description). It applies to the Social Sciences. Think of our images of what conflict is and what peace might look like. Lots of work here.

I think the topic is provocative enough to get everyone wanting to chat about what is global culture (the graduate who is able to interact internationally) and what is local and which should we foreground. It also pushes the “what is knowledge?” button. Is knowledge what enables you to function practically in your day to day life, or is it what improves people’s circumstances over a lifetime, or is it an arcane mechanism for preserving status?

It’s kind of a suppository challenge really! And this is how university-learned thinking can transfer to everyday life and vice-versa.

I’m delighted that the young people and younger people I work with are asking these questions, and I feel good that they’ll be great teachers as a result of their curiosity –  knowledge creators. And the world can be a better place. I’m looking forward to being in Stellenbosch next week, and hearing what all those folks have been working on.

I hope someone is applying their minds to the ridiculous salaries of Grade R teachers in KZN – if the East Coast Radio report is true – they earn R25 per hour compared to colleagues in other provinces earning R45. Not that people do this work purely for money, but who can live and read and think on R4000 a month?

Just thinking…

* I can’t for the life of me remember this writer’s name. Chemo brain moment!

Side FX

I thought of a great heading to this post in the middle of the night, but it seems to have run off with the bit of my mind that remembers where the hell I put my cellphone/keys/important references/dogfood. If you see it dust it off and send it back this way. And people think lost socks are a problem.

These posts are getting more and more spread out, not because I don’t have lots to say – I’ve never been anything but wordy – have to catch up from a quiet childhood! (Though my mum might have a different recollection – 4 of us with different ideas and directions must have been exhausting.) I think of this blog as a way of updating people on how I’m doing, and also maybe sharing some info about what I’ve learned in the process for those of you who know people (who doesn’t) going through chemo the quiet/private way.

Thus I thought of some of the tips that make life a bit easier for me (and Pat):

Part of the chemo regimen are pills that help your tummy – Omez or Omerprazole.  They are really cheap and although the Onco Centre gives me only a week’s supply at a time for the time I’m on chemo. It’s been worth my while to get a script to cover the week between chemo sessions. I take one a day every day before anything else. It has helped me deal with the sulphur burps even though it slows down digestion amongst other nasty side-effects. Like all of these things one should check with the doc before taking them.

Medrol is another prescribed thing – a corticosteroid that reduces inflammation and also makes you feel hungry. I take it when I’m really not feeling like eating. It can lower one’s resistance to infection and weaken the muscles (noodly legs). I’ve found that eating a banana a day seems to reduce the noodleness so I guess it’s the magnesium and potassium that get sucked up by the drug.

Zofer is the anti-nausea pill which can cause blurred vision, nausea and dizziness. I’ve actually found that ginger capsules work better for the nauseous feeling between chemo rounds. Besides which when the burps do come up – they are rather more pleasant.

Other useful discoveries:

Citrisoda and Gaviscon gel for acid reflux.

Aquafresh Big Teeth – given how sensitive my mouth has got, it doesn’t handle a lot of cold/hot/chilli/peppermint without burning. Big Teeth is toothpaste for kids who’ve just getting their adult teeth. It doesn’t have a lot of fluoride in it (forgive me if my smile is not blinding!) because kids like the taste and tend to swallow it. The point is that it doesn’t burn. So even though one has to brush very carefully with a soft brush to stop bleeding, one can brush more frequently. I have to say that my dentist didn’t think that the lack of fluoride was a Good Thing, however I didn’t need a full dental clean before he fixed my broken tooth week before last!

Listerine Total Sensitive diluted to about 30 to 1, seems to be keeping thrush at bay.When even these are a bit strong then bicarb seems to do the trick.

Bactroban Nasal is a little tube of cream for the nose. Chemo seems to hit all the mucous/sensitive spots causing nose bleeds. Bactroban helps for that stuff.

The other Bactroban tube is great for small wounds like mosquito bites, scratches from plants, animals and dog food tins!  The Avastin in the chemo stops things healing up as fast as they would normally, so having this around stops things going nasty.

E45 Aqueaous cream is a gem to slather on and keep from the dry skin, peeling feet and weightloss wrinkles! It also feels good to pamper the feet and hands with a little attention with the tingles (neuropathy) being fairly permanent. Happily the neuropathy hasn’t affected the delight I feel when  Pepper and Rocky come round for a love – their fur feels so soft.

I’m still going on the wheatgrass – I have no idea what it does but Pat’s ex-sister-in-law is now in remission along with her hubby and they swear by it for preventing anaemia and blood issues. From what I can gather I’m lucky to have only been delayed in my chemo once and not to have required a blood transfusion to get the reds and white cells up.

Enough about side-effects – the thing is that they are manageable and can be dosed.

I was fine whilst I was dripping last week, bloods all good and so on. I just stopped off to get the needle and pump removed on Friday, en route between the excellent supervision workshop that we had at Makaranga Lodge under Kathleen’s excellent leadership, and going into to the Mentoring Practitioner Researchers group at DUT.( We worked in  fun and such pretty surrounding – lovely.)

I had a bit of a headache when I got to the OTC and was feeling a bit chilly – it was grey and cool if you remember. The onco nurse took one look at me and said, “Liz! You really need to tell us when you have these side-effects.”  I was a bit gobsmacked – I hadn’t realised I was having a ‘side-effect”.  She said, “You are burning up!” Apparently I had a temperature of 38,5. I thought I’d just been working hard.She made me lie down in the cubby for an hour and dripped antibiotics into me – so I was late getting to MPR.

I confess I was knackered when I got home at 4 and just headed straight to bed because I was freezing , while Pat went and got the antibiotic script filled and a new digital thermometer.  She spent the evening approaching my ear with nefarious intent every two hours. There was a bit of a learning curve as with all technology! May I say that this kind of approach is not romantic by any means, but we did have some giggles over it. My temp had plummeted and was hovering around 35. I didn’t know it because this makes one sleepy but Pat was worrying. I don’t think she got much sleep that night – googling what to do about hypothermia and making plans about what to do if I wouldn’t wake up. I feel for mothers. Thank you Cathy in California for talking Pat through that on Skype messaging!

Her family history detective skills came into play the next morning when she tracked down Dr L’s private number, to ask him what to do. He was very gracious and said give it 24 hours, but to call if there was a change for the worse. I was completely oblivious sleeping through it all. Who knew that I could contact my onco when the OTC was closed? A question to ask, because these things don’t hit during office hours.

So poor Pat had that delight while I blissfully slept through the weekend, except for meals.Peps and Rock where attentive watch angels by my bed. I didn’t feel great – certainly not very strong – but dosing helped – see above. She doesn’t say much about it but I guess the event felt like a hint of things to come and she had to work through all that stuff. This thing is much harder on the people close than it is on the person with the cancer.

I think we’d both have preferred to be at The P’s birthday celebration. Happy birthday P!

Happy Birthday, Lou. Happy Birthday, Elaine, Noelene, Carrol (this week) Pregz and Delysia coming up.

 

And most especially Happy Birthday today to Pat, my hero and rock. Have a day as wonderful as you are.

Over and out for now.

Liz

PS. Don’t tell me that there isn’t a Valentine’s Day rush of birthdays at this time of the year!

 

Image from Will Clayton’s photostream on Flicker http://www.flickr.com/photos/spool32/with/5045502202/