Tuesday, January 20, 2009

We're back in...

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!

7 comments:

Clare said...

Hi Jane

God you must all feel like you are on a roller coaster wishing with all your strength that you could get off. You all sound so strong and positive I am sure that must be how meg seems to cope so well, she is one incredible young lady.Ellie being a goon must mean she definatly takes after you!. I bet having your mum there is a great comfort,say hello to her from me.

Stay strong and positive as I know you all will, much love ,prayers,and very best wishes to you all, keep smiling Meg .
lots of love clare x x x

Roebucks said...

Just letting you all know we are still here, thinking and praying for you. I'm glad you get to hang out with Evie. I'm also glad Oliver is easier to do mouthcare with! Please let us know if we can do anything for you, we're just down the road. All our love. Simon

thebeegeez said...

You are all superstars !!! Go Megs, what a trooper, you will kick this stuff in no time little lady. I'm glad Heather is there with you all, nothing like a bit of TLC from Nana :)

We send you lots of love and big Texas hugs, stay strong Megs, and take care of yourself Janie. Love to Ellie Bellie and Phil, not forgetting the critters too !!!!

xoxoxoxoxoxooxoxoxoxoxo

UNCLE STU said...

Hey Meggie,

Your courage is such a testimony to others who are going through the same trials as you are - what a champion you are!. Jane, if I ever get ill and have to go to hospital I want someone like you to be there to look after me. (You're so much prettier than Phil anyway) Our admiration for what you are handling as a family is beyond words and you need to know that there are people who are praying for all of you and who love you.

Megs, keep fighting honey!! Don't ever give up, and you will be the winner that you are already proving you are.

Jane, Phil and Ellie, from Cape Town, we send you lots of love and we will keep praying until the day we hear that Megs is fully recovered.

Love and Blessing to you all

Lisa said...

Hi Guys, still thinking of you all, hope Meg, that you arnt feeling too poorly! We are so glad you like the game and I think you will have to teach us when we see you next. Lots and lots and lots of luv n stuff Lisa and Jay...Pete, Cleo, Tilly, Billy, Gromit, Charly (the ugliest dog in the universe) , dusty and smowhawke.

Roebucks said...

Wow Meg, I got tears in my eyes reading about your trials with mouthcare whilst on chemo last week, I cant even imagine what that must be like. I hear what you are saying Jane about the mucositis, it was awful when Oliver had it. You are both very strong!
I can imagine that your hospital room was very noisy when the four of you were playing that game, lots of fun I bet! You and Evie would be great roommates for each other and Jane & Ali I could definitely spend more time with you guys.
Lots of Love Karli

Heather said...

HI Jane and Meg.

Its Heather here from Australian Doulas. I just thought I would pop in and say hi and since you have started this blog, I have been checking in every week.
Meg, I have an 8 year old daughter and she has also been checking in to see how you are coping. She thinks you are really stong and she says she prays that you keep up your fighting strength to get better.

Jane, I know it's been a while since we spoke and my heart goes out to you and your family. We are praying for you and I know you have probably heaps of helping hands but if you ever need anything, even a chat please don't hesitate to phone.

Lots of love to you all.

Heather.