Well I have just had my 6th lot of the Japanese Golden Juice and it seems to be working slowly but surely. Blood tests are showing that the *Lolly Pop Markers (Tumour Markers), are coming down and the Liver function is slowly improving. As some of you know, I am not a very keen user of the current medical terms and names for ‘everything cancer’, as they sound so doom and gloom. So I have developed my own ‘Medical Lexicon’, with more uplifting and more cheery names.
So it’s been another long break between my journal entries. The Japanese Golden Juice, (JGJ) has been relatively kind, giving me far less dramatic effects such as chronic nausea. However, it packs a punch and tends to make me feel that I have drunk about 50 litres of sake, rubbed wasabi in my eyes and then stepped into a confusing scene from Sophia Coppola’s, Lost in Translation. But that only tends to last for about a week, in time for my next Japanese Golden Juice infusion.
We cautiously feel happy about getting good blood results. I ask my Health Stylist if he is ecstatic but he feels that downgrading his feelings as “great” would be more appropriate. My dose of ‘JGJ’ was reduced by 20%, based on my first dose, slamming my body so hard that my good fighting cells couldn’t recover in time for my next round. So it was cancelled, I did try the tough angle, with my Health Stylist asking, “But what if I want to go ahead?” And in his ever so confident manner he said, “You’d probably bleed out and die.” I promptly dropped the little Miss Tuff act.
Over the weeks my blood tests have continued to show improvement. The levels of improvement have slowed down but are still heading in the right direction.
Whilst you haven’t heard from me, I have had a few ねばねばする (sticky) moments over the last seven weeks and some 素敵 (lovely) ones too. I was feeling well enough to go to Sienna’s strings concert at her school assembly, I just love seeing her at school and she loves seeing her mum. It’s a double bonus for her if her Brave Dad can make it too. She had the biggest smile when she saw us and my heart melted.
Her little girlfriends who know me gave me a little wave. But the sweetest was one of the little boys who whispered to Sienna, “Gee, your Grandma looks really young.” How sweet of him I thought, as I put my foot out in front of him as he walked passed.
It was my sister’s birthday on August 22nd. My fairy’s middle name, Megan,
is named after her. Even though it’s been a long time since she passed away in a car crash, I always try and tell Sienna lots about her beautiful Aunty. On her birthday we choose a star and say happy birthday and this year we wrote a little card and sent it off to the stars through my bedroom window.
My sticky moment was a short stay in hospital with ‘Mucositis’…. which I will re-name soon in my Medical Lexicon.
Anyway, it’s basically about 1,000 ulcers in your mouth, down your throat and your oesophagus. Feeling like you’ve been drinking a cocktail full of crushed glass, vegetable graters and then having a full pineapple with skin left on forced down your throat. Leaving you in so much pain that you suddenly are no longer able to eat. Oh and did I mention that it also feels like someone has got a wire toilet brush and scrubbed it up and down your neck. Eventually as the pain peaks, you can no longer drink or talk either. Still, I thought to myself, “It will heal eventually and maybe there’s a bright side and I might lose a couple of my chins bringing the current chin tally down to 5.”
So I gargled my way, through 5 nights at Hotel Cabrini*, had about 5 litres of fluid and antibiotics, and anything else I couldn’t swallow the lovely nurses, would inject. Eventually I felt better and I was able to at least drink normally. It wasn’t long and I was packing my bag to come home along with the two lovely little extra chins, I now have thanks to all the fluid I’d had over the previous days. Chin Tally now 9.
Fortunately we found a drug available that I could use to prevent this happening again and it was only $10,000! (Palafermin) What a steal let’s buy 3! I felt the best decision would be to put this money towards my ‘chinectomy’ I’m planning for after treatment.
My Besty Troop and I did a little scientific excperiment of our own, we thought if I sucked on an icy-pole while the Japanese Golden Juice was infused, would it help with detering the crushed glass cocktail ulcers like before! For a little colour and fun my BT bought some rainbow coloured icy-poles.
Ever since I haven’t had one ulcer!
Fatigue continues to wreak havoc. I have tried different tactics to stay awake, getting up early shower and get dressed and then help Sienna get ready for school. But then after they’ve gone I’ll just have a little sit on my bed, which turns into a lie down, which turns into a three hour slumber fest.
I have also tried the alarm clock just in case I keep sleeping and can’t wake myself up, and hate it that I’m so tired that I set the alarm for am instead of pm and it goes off at ¼ to one in the morning. I have even nodded off whilst my Brave Man has been mid conversation with me.
Even though I try and avoid going up and down the stairs because it uses so much energy and by the time I get to the top I feel like I’m gasping for my last breath. I try and do some couch sitting for the afternoon, thinking this would keep me awake, but nothing will stop me, another 2 hour sleep, waking up with, ‘the crick of all cricks’….in my neck because of sleeping in a strange position.
And then the worst of all……
One morning my Brave Man had brought me up some cereal and freshly cut up orange to make sure I eat. He’s even resorted to brining my lunch up to my bed in a little cooler-pack, again to make sure I am eating. I haven’t been interested in eating lately (which seems unbelievable since my girth is so wide I could quite literally kill a small child if I fell on it) and because I’m not hungry and my memory is poor, I forget if I’ve even eaten or not.
My appetite has been very average lately, just not excited to eat. My body is so dehydrated that I have been eating bags and bags of oranges every week and litres of yoghurt.
I’d like to be able to tell you that I’ve lost so much weight that now I’m back in my Hudson size 27 skinny jeans. But no, still in my comfy big girl pants trying to carry this pudding of a body around.
Anyway, back to………. “And then the worst of all…..”
I started with my cereal, I must have fallen off to sleep mid crunch. Well, do you know when you wake up sometimes with the feeling of “Ahhhh my mouth feels like the inside of a ‘cockie cage!’? Well after first realising that this was no ‘cockie cage’ I was feeling, after moving my feet, I was thankfully not dead, and this was not a wad of formaldehyde soaked medical gauze stuffed in my mouth. It was a spoonful of cereal that had been sitting there during, my 1 hour sleep-a-thon. I’ll spare you the rest of the details. Let’s just say the cereal, Just Right marinated in your mouth for an hour is Just Wrong!
So I am living in self- imposed ‘lock down’, trying to avoid any germs at all. Just one little bug could be my downfall, so we are all very careful about kissing and touching. My poor friends who visit, scrub their hands like OCD sufferers and check their children’s noses and throats and other any cranny, like they’re Indiana Jones searching for the Lost Treasure.
It feels uncomfortable asking my friends if they have any colds or anything I could catch. But I know only too well catching something means, hospital and chemo on hold. I do reassure them that anyone is most welcome should they have head lice, as that is one thing I can’t catch.
So I continue to sleep a lot especially when I first have chemo, I’m definitely, ‘Sleeping Beauty’ without the Beauty.
One Sunday mid- morning not so long ago, I remember lying in bed for an hour as I opened and closed my eyes trying to wake up. I listened to my Brave Man cleaning the house and my Fairy playing Bunny Hospital down stairs. She’d set up beds for each sick bunny, a CT scanner and X-ray room and even a bunny parents waiting room. She happily put on the different voices of the rabbits, diagnosing them with their various illnesses’ ranging from, a broken wrist, a puffed up tummy, twisted ankle and bunny cancer.
I just wished myself to be down there with them and was trying hard not to go back to sleep. After a shower and some fresh clothes. I found myself in the animal hospital with Dr West, who was looking after my baby rabbit daughter, Miserabella. As she took her off for an x-ray and a scan, I watched her playing pretend, I realised how my life on the ‘medical travelator’ is also her life on the ‘medical travelator.’ And just to tell you, Miserabella is totally fine, just a little tummy gas but she’s fine.
We have still been going on our trips to our little haven along the Great Ocean Road, my Brave Man and my Fairy discovering so many things on their walks.
Discovering our Johanna neighbours
The fairy and her Dad went off to find some firewood to stock up for winter and they found more than they expected. In amongst the bush, they found a big Koala family. In one gum tree alone, they counted nine Koala’s.
It was the Brave man’s birthday. I love to celebrate anything and everything, Birthday’s and Christmas rate high with me. I always have the rule that nothing can ever be labelled ‘over the top’ on these two days of the year. The more tinsel the better and the more presents you can re-gift, the better too!
Anyway, as I am momentarily ‘less mobile’, ‘all things party’ just wasn’t going to happen. And the mere thought of blowing up a balloon makes me instantly visualise an angry Scotsman using my lungs as bag pipes.
But the Brave Man was happy with his birthday dinner of lamb shanks (his favourite), a lemon tart birthday cake, also his favourite, and his present from his girls, a kit to make a Billy Cart. My fairy and her little troop made it together with the Brave Man overseeing, on a trip to Johanna. So much fun!
We love him so much us girls, as my Fairy say’s…. “Daddy is the best chuck out the rest.”
So the next ‘memory maker’ is taking my Fairy on a magical girly adventure. We are going to Crown Towers for a night, a 5 star plush Hotel in the City. With promises of ordering ice-cream from room service, a breakfast buffet, big bubble baths while watching TV, and Mocktails before dinner. And as part of the ‘memory maker’ my Besty Troop is coming along with her daughter and Sienna’s Besty Troop. One more sleep and she has had her suitcase packed about a week ago.
This week I go for the ‘big scan’ and the results will hopefully tell us what the ‘JGJ’ Japanese Golden Juice, has been doing.
My fairy has been asking more questions, “why is it taking so long for you to get better?” she overheard someone say there’s no cure for cancer, she asked, “If there’s no cure for cancer does that mean that there is no cure for you mummy?” As always, I say to my girl, “we are all trying to get me better, I’m trying so hard, because all I want to do is play with you and Daddy again!”
I read a little snippet of information the other day, according to both UN and WHO (not the magazine) estimates, Japan has the second highest life expectancy of any country in the world. I hope this applies to me now that I’m taking their golden juice.
See you for now, and I’ll be sure to put the alarm clock on next time so I can tell you about my results and a few other things I have been up to.