Well as you saw from Meg's last post, we came into hospital bright and early on Monday, packed and ready to go into the next round of chemo, had the routine blood test to check that Meg was well enough to have the chemo, and then it occurred to the staff that they hadn't given her the dose of dexamethazone that she should have had 12 hours earlier! So....they sent us home again with the medicine this time, and asked us to come back in on Tuesday morning, very early and very hydrated so that the chemo could be started pretty much straight away. Meg drank a litre of water on the 30 minute journey into the hospital so they were very pleased with her and things started happening. It was pretty nerve wracking again when they were preparing to give Meg her paclitaxel (the new trial chemo). They load up a trolley with emergency resuscitation drugs and have the oxygen ready in case she has a sever reaction to it, and watch her very closely for 3 hours while the infusion goes into her body. Fortunately for Meg, she was pretty dozey from the pre-med and slept through most of it while I watched her like a hawk, feeling her heartbeat, watching her breathing, asking questions, and praying. After that 3 hour infusion, she has another hour infusion of carboplatin followed by an hour infusion of ifosfomide. Meg knows all the names of the drugs and rattles them off like she's talking about her favourite movies!
I bumped into her surgeon yesterday too, and he confirmed that the plan was to remove as much of the lobe of the liver that was diseased, plus her lymph nodes, if her chemo has significantly reduced the size of the tumours. When I relayed this information to Meg (she did know the plan but was feeling quite fuzzy at the time) she said "But how can he take the two lymph nodes when I've only got one left?" I was a bit nonplussed as to what she meant and told her she's got lots of lymph nodes all over her body. She then blurted out "Oh! I've only got one fallopian tube!!" That was quite a bizarre conversation.....
It was lovely to see Lisa, Jay and Donna last night who popped in for a visit and a natter last night. Meg wasn't feeling too chipper so was very quiet (sorry Jay....) but seeing bright, friendly faces was great. We're always happy to have visitors; you'll always find us on ward 3B!
Meg was doing pretty well with the chemo in that she wasn't feeling sick; just very tired and "wiped out". We slept OK ( I have a bed again which is wonderful!), and only had 3 trips to the bathroom through the night. We were woken by the cleaning lady, busily cleaning all the hard surfaces, mopping the floor and making a bit of a racket, so I got up!! Meg didn't fancy any breakfast but I tempted her to try scrambled egg which the kitchen made specially for her. She managed to eat about half of it then gave up. Our lovely room mates, Ali and Evie arrived and much to Evie's delight was able to receive her chemo because her bloods were good. After a good strong coffee from the cafe upstairs, the rest of the morning was then spent doing a little bit of craft, then playing a new game that Lisa and Jay generously bought for Meg called Bananagrams. (Lisa - it's really good!) Ali beat us all but she's a bit of a scrabble queen so we didn't really stand a chance, and Meggie really wasn't in the mood to do anything but still had a go.
Next came the dreaded mouthcare..........(insert a dastardly tune here...). What a nightmare. Poor Meg just cannot stand to do her mouthcare when she's on chemo. As well as feeling nauseous, the drugs change her sense of taste and smell and she just retches at the thought of it. The nurse had to get quite firm because it's vital that she does it to avoid mucositis which can put a cancer patient in hospital for days/weeks. Poor thing, she was damned if she did, and damned if she didn't. After 25 minutes of standing at the sink holding her toothbrush, retching and weeping, she began to gently brush her teeth. It was awful. But I've seen mucositis and I want to avoid Meggie getting that. It's horrible. We then did the mouthwash which took another 10 minutes to work up to and she was immediately very sick. I WISH that she didn't have to do this and it would be very easy for me to "let it go" but if we did, the alternative would be worse. We finished off with a smearing of protective gel on her gums and a shower, and then got her tucked back into bed where she's stayed since, watching TV and dozing. I'm going to try and persuade her to have a little walk in a while, just to get her body moving, and then Daddy, Ellie and Nana will arrive - Daddy and Nana to provide cuddles and TLC and Ellie to provide the entertainment.......she's a goon!
Tuesday, January 20, 2009
Sunday, January 18, 2009
what happend today
Hi Everyone its me Megan
I was in hospital this mornig for chemo yuck!! i was in room seven with my friend Evie. I had a blood test and it really hurt when i got back Evie and myself were playing connect four while watching Michael jackson (My favourite singer) the doctors said that we both have to go home. we were really disapointed except for me i was really happy because i didnt want to stay in because they didnt give me dexamethozone which i have to have twelve hours before the chemo.
so now im home and have to go back tomorrow morning. when i got home i did some work then i went in the pool it was really nice .so yeah thats all i can tell you now so ill talk to all for you some other time.
Bye for now
Megan take care
xxxxxxxxxxx
I was in hospital this mornig for chemo yuck!! i was in room seven with my friend Evie. I had a blood test and it really hurt when i got back Evie and myself were playing connect four while watching Michael jackson (My favourite singer) the doctors said that we both have to go home. we were really disapointed except for me i was really happy because i didnt want to stay in because they didnt give me dexamethozone which i have to have twelve hours before the chemo.
so now im home and have to go back tomorrow morning. when i got home i did some work then i went in the pool it was really nice .so yeah thats all i can tell you now so ill talk to all for you some other time.
Bye for now
Megan take care
xxxxxxxxxxx
Tuesday, January 13, 2009
My beautiful blonde!
Well, as you see from Meg's previous post, her hair began to fall out in clumps a couple of days ago. A sure sign that the chemo is well in her system. Meg finds this partmore traumatic than anything she has to endure. Her hair is literally her crowning glory; many, many people comment on the beautiful colour, and the gorgeous curls. However, this morning, her first words to me were "mum, will you shave my hair off today please?" I was relieved that she had come to her own realization that it's best for it to be done now, and not to wait for it to fall out completely on it's own. So, with good old Nana holding her hand (and the promise of $5!!) I shaved what was left of her beautuful hair. It's another day we won't forget, not only because of Meg's hair, but also that it coincides with Phil's birthday. Meg was very excited about it, and made a wool trail around the garden for Dad to follow to find his pressies. We bought him a punch bag, boxing gloves and a chain to hang it from the beams of our pergola - a very apt present for all the family really, considering how many angers and frustrations we have. So, we'll be having a good punch out there on a regular basis.....
We were in hospital yesterday for Meg to have a kidney function test. Sounds simple doesn't it.... but it's not. She has to be extremely hydrated which she managed to do orally and nt have to go on IV fluids. She has an IV cannula put into her arm, and also has her port needled. We then have to go to Nuclear Medicine for a tracer to be injected into her arm and bloods to be taken. Then we go back down to oncology and she has blood taken after one hour, two hours, two and a half hours and three hours, all through her port. We finally got out at around 3pm after getting there at 8.30am. We then went to the Cancer Council's Wig Library - (same a books but with wigs!) where Meggie chose her wig. She can change it as often as she likes, but she seems to like the blonde one best.
We're back to hospital on Monday for the next round of chemo and then following that, the all important tests to see what, if anything the chemo has done.
On a final note, I'd really like to thank a wonderful group of ladies that I don't even know (except Lisa!)! They all cooked meals for us, and made some of them into individual portions so that I can have a decent meal in the hospital which is so needed! So thank you, thank you Sam, Sam, Kiera, Jo, Nikki, Jacqui, Lisa and Tracy. Your thought, effort and generosity is so appreciated.
We were in hospital yesterday for Meg to have a kidney function test. Sounds simple doesn't it.... but it's not. She has to be extremely hydrated which she managed to do orally and nt have to go on IV fluids. She has an IV cannula put into her arm, and also has her port needled. We then have to go to Nuclear Medicine for a tracer to be injected into her arm and bloods to be taken. Then we go back down to oncology and she has blood taken after one hour, two hours, two and a half hours and three hours, all through her port. We finally got out at around 3pm after getting there at 8.30am. We then went to the Cancer Council's Wig Library - (same a books but with wigs!) where Meggie chose her wig. She can change it as often as she likes, but she seems to like the blonde one best.
We're back to hospital on Monday for the next round of chemo and then following that, the all important tests to see what, if anything the chemo has done.
On a final note, I'd really like to thank a wonderful group of ladies that I don't even know (except Lisa!)! They all cooked meals for us, and made some of them into individual portions so that I can have a decent meal in the hospital which is so needed! So thank you, thank you Sam, Sam, Kiera, Jo, Nikki, Jacqui, Lisa and Tracy. Your thought, effort and generosity is so appreciated.
How im feeling today
Hi
im feeling really sad today because my mom just shaved off all my hair because it's starting to fall out. Im angry and sad in the same way but it has to happen. I'll be going horse riding on the weekend hopefully if its not to hot for my mom and the horses. so yeah i dont have anything else to say so ill talk to you some other time
Bye Megan
im feeling really sad today because my mom just shaved off all my hair because it's starting to fall out. Im angry and sad in the same way but it has to happen. I'll be going horse riding on the weekend hopefully if its not to hot for my mom and the horses. so yeah i dont have anything else to say so ill talk to you some other time
Bye Megan
It wasn't too hot so here I am riding Gringo in the Aussie bush!
Thursday, January 8, 2009
This gives me strength....
Hi all
Just wanted to share this "you Tube" clip with you. I found it before Christmas and it really made me feel strong - it's the music. So please have your speakers on - the louder the better. And please send all that positive energy to our Meggie-Moo!
The band is a Christian Rock band called Fireflight. I find the whole thing very powerful.....
Jane xxxxx
http://www.youtube.com/watch?v=zAAcau-Yze4
Just wanted to share this "you Tube" clip with you. I found it before Christmas and it really made me feel strong - it's the music. So please have your speakers on - the louder the better. And please send all that positive energy to our Meggie-Moo!
The band is a Christian Rock band called Fireflight. I find the whole thing very powerful.....
Jane xxxxx
http://www.youtube.com/watch?v=zAAcau-Yze4
A fab poem for Meg from Lisa
I thought this deserved a post all to itself! Thank you so much Lisa - we love it!!
My Ode to Meg
By Lisa aged 39 ¾
(One time nanny to a poet laurette..!! not that you would know!)
So, I watched Meg playing swing ball,
She was playing with her dad,
She leapt, she sprang, he huffed, he puffed
He really was quite bad!
As Jane and I sipped at our wine
The ball was bashed about
It soon became so clear to me,
What this was all about
She had just had chemo, so she was tired and probably feeling bad
But her courage, strength and love of life had her beating dad.
They were smiling, having fun, the love was all to clear,
Her face shone.. his was red (the cost to him was dear!)
But eventually, they came and sat, rested, had a snack,
Meggie laughed as her dad moaned and rubbed his aching back.
Jane sipped another mouth of wine, her face was all concerned…
“Phil be a dear, come rub my neck..my headache has returned!”
And as I sit, a stranger really, amongst these crazy folk,
My heart aches for them, it really does, for truly it's no joke,
What they face, is so very hard, a condition, all too rare
and as a family, more than any should ever have to bear.
But then I see sweet Meg, with her cheeky “Jack Black” eyes
And I know beyond all certainty, they are fighting for the prize
They will stand with Meg, at every step, , this family has not finished
Their love, their hope, their very core..tested, yet undiminished.
So Meg, what ever happens, the one thing you must see
your family love you Oh, SO MUCH,
they won't want to set you free.
They just won't want to be without you, your mum, your dad and Ellie
So picture yourself, at 46, 4 kids, a car and a dog that’s very smelly
Be proud, walk tall, just remember who you are,
Meg Stanley, a winner, swing ball extraordinaire,
a poet, a comic, a card player….(I hear with promising flair)
Cheeky, funny, a champ,
and loved beyond compare!!!!
My Ode to Meg
By Lisa aged 39 ¾
(One time nanny to a poet laurette..!! not that you would know!)
So, I watched Meg playing swing ball,
She was playing with her dad,
She leapt, she sprang, he huffed, he puffed
He really was quite bad!
As Jane and I sipped at our wine
The ball was bashed about
It soon became so clear to me,
What this was all about
She had just had chemo, so she was tired and probably feeling bad
But her courage, strength and love of life had her beating dad.
They were smiling, having fun, the love was all to clear,
Her face shone.. his was red (the cost to him was dear!)
But eventually, they came and sat, rested, had a snack,
Meggie laughed as her dad moaned and rubbed his aching back.
Jane sipped another mouth of wine, her face was all concerned…
“Phil be a dear, come rub my neck..my headache has returned!”
And as I sit, a stranger really, amongst these crazy folk,
My heart aches for them, it really does, for truly it's no joke,
What they face, is so very hard, a condition, all too rare
and as a family, more than any should ever have to bear.
But then I see sweet Meg, with her cheeky “Jack Black” eyes
And I know beyond all certainty, they are fighting for the prize
They will stand with Meg, at every step, , this family has not finished
Their love, their hope, their very core..tested, yet undiminished.
So Meg, what ever happens, the one thing you must see
your family love you Oh, SO MUCH,
they won't want to set you free.
They just won't want to be without you, your mum, your dad and Ellie
So picture yourself, at 46, 4 kids, a car and a dog that’s very smelly
Be proud, walk tall, just remember who you are,
Meg Stanley, a winner, swing ball extraordinaire,
a poet, a comic, a card player….(I hear with promising flair)
Cheeky, funny, a champ,
and loved beyond compare!!!!
Home....
Well, we were in hospital for a week and Meg did so, so well. She took all the new treatment on the chin again and didn't grumble or complain about anything, in spite of feeling absolutely wretched most of the time. It's good to be back home, and Meg is so relieved to be sleeping in her own bed again. We've been home for 5 days now and Meg's nausea is still coming in waves, poor love. I've had to give her anti-nausea medications every day, just to get her through. The problem is that if she starts to vomit, and we can't control it, she'll get very dehydrated quickly, especially as it's 35 degrees here. Dehydration can be extremely dangerous for chemo recipients as the toxins in her system can cause irreversable damage to her kidneys.
We went to the hospital yesterday (just outpatients) to get Meg's blood checked and to see her oncologist. She is VERY neutrapenic now. This means that she has absolutely no immune system - the chemo has destroyed it. The thing about chemo is that it can't differentiate between healthy cells and cancer cells, so in the process of trying to destroy the cancer, her normal healthy cells get wiped too. This leaves her looking very pale, feeling weak and tearful and very susceptible to getting temperatures and infections, mainly from the normal bacteria that she has on and in her own body. She now has a canula in her leg into which I have to inject a medication every day to try to help her neutophils recover sufficiently for her to receive the next cycle of chemo. She hates this, although never resists it, but it really stings and I feel so bad hurting her. She now has to do "mouth care" which she also absolutely hates. It's a regime where she has to use a nasty tasting mouthwash and hold it in her mouth for about 20 seconds, followed by coating the inside of the mouth with a protective gel. People on intensive chemo like Meg's often suffer from mucositis. This is where the lining of the mouth sloughs away, sometimes along with the lining of the oesophagus, causing lots of painful ulcers. Unfortunately for Meg, she just seems to find it impossible to do her mouthcare without vomiting. I'm really not sure how we're going to get around that..... but we're going to have to work something out or she's going to be back in hospital with mucositis.
On a positive note, we're looking forward to my mum arriving in Perth tomorrow. It's been so hard for her to be so far away from us all and we need her to be here as much as she needs to be be here. Meg's very excited about meeting Nana at the airport! Another plus is that our lovely big girl Ellie came back yesterday from her holiday at our wonderful friends, Ross and Tanya's farm in beautiful Nannup. It was so good to see her. We all missed her loads but it was better for her to be away and enjoying herself with her best bud, than to-ing and fro-ing to PMH.
Whilst we were in hospital I spent quite a bit of time searching out other "top" people in the oncology world, just to see if I could find out any more about the treatment protocol that Meg's on. I had a lovely email from a very well regarded oncologist in the US yesterday who told me that they had 8 other patients who are on this protocol and that at the moment the outcomes are looking quite good, so that was reassuring. He also said that he'd be interested in following Meg's case so I'll be keeping in touch with him, and hopefullly manage to find someone else who I can talk to who's having, or has had this experience too.
So, we're all back together, at home for now, and I'm glad.... Meggie has had a pretty rough day today and is now sleeping, cuddled up to her favourite fluffy unicorn, Rainbow. She's so stubborn sometimes though. I had to insist that she had a rest and she continued to say "I'm not tired, I'm not tired". 5 minutes later she was sound asleep! I hope she feels better when she wakes up.....
We went to the hospital yesterday (just outpatients) to get Meg's blood checked and to see her oncologist. She is VERY neutrapenic now. This means that she has absolutely no immune system - the chemo has destroyed it. The thing about chemo is that it can't differentiate between healthy cells and cancer cells, so in the process of trying to destroy the cancer, her normal healthy cells get wiped too. This leaves her looking very pale, feeling weak and tearful and very susceptible to getting temperatures and infections, mainly from the normal bacteria that she has on and in her own body. She now has a canula in her leg into which I have to inject a medication every day to try to help her neutophils recover sufficiently for her to receive the next cycle of chemo. She hates this, although never resists it, but it really stings and I feel so bad hurting her. She now has to do "mouth care" which she also absolutely hates. It's a regime where she has to use a nasty tasting mouthwash and hold it in her mouth for about 20 seconds, followed by coating the inside of the mouth with a protective gel. People on intensive chemo like Meg's often suffer from mucositis. This is where the lining of the mouth sloughs away, sometimes along with the lining of the oesophagus, causing lots of painful ulcers. Unfortunately for Meg, she just seems to find it impossible to do her mouthcare without vomiting. I'm really not sure how we're going to get around that..... but we're going to have to work something out or she's going to be back in hospital with mucositis.
On a positive note, we're looking forward to my mum arriving in Perth tomorrow. It's been so hard for her to be so far away from us all and we need her to be here as much as she needs to be be here. Meg's very excited about meeting Nana at the airport! Another plus is that our lovely big girl Ellie came back yesterday from her holiday at our wonderful friends, Ross and Tanya's farm in beautiful Nannup. It was so good to see her. We all missed her loads but it was better for her to be away and enjoying herself with her best bud, than to-ing and fro-ing to PMH.
Whilst we were in hospital I spent quite a bit of time searching out other "top" people in the oncology world, just to see if I could find out any more about the treatment protocol that Meg's on. I had a lovely email from a very well regarded oncologist in the US yesterday who told me that they had 8 other patients who are on this protocol and that at the moment the outcomes are looking quite good, so that was reassuring. He also said that he'd be interested in following Meg's case so I'll be keeping in touch with him, and hopefullly manage to find someone else who I can talk to who's having, or has had this experience too.
So, we're all back together, at home for now, and I'm glad.... Meggie has had a pretty rough day today and is now sleeping, cuddled up to her favourite fluffy unicorn, Rainbow. She's so stubborn sometimes though. I had to insist that she had a rest and she continued to say "I'm not tired, I'm not tired". 5 minutes later she was sound asleep! I hope she feels better when she wakes up.....
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