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.
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/