Sunday, March 27, 2011

The pump

This is what it looks like and....

this is how it hangs around my neck. The tube is attached to a needle which is inserted through the skin into a portable catheter in my chest just between my breasts - that's why there's not a picture of it hanging in it's rightful place :)

Today I have had a CT scan which shows that the tumours have shrunk since the chemotherapy began. That's good news. I visited the surgeon for the results and a consultation about whether to go ahead with the peritonectomy. I know I said previously that I have decided against surgery but........I'm keeping my options open - hoping for a medical miracle breakthrough of some kind :)

Of course the surgeon believes that surgery is my best option. He says it will extend my life (longer than chemotherapy will) and there is a 30% chance that it will be a cure. He says that eventually the chemotherapy will fail to keep the tumours at bay and they will always come back and grow larger and.....

My concerns about surgery are:
  • major assault on body
  • lengthy recuperative time
  • quality of life afterwards with possible complications
  • one of the tumours is on a back muscle that is associated with walking and will have to be removed
  • going into a lengthy hospital stay with an infection that has been there since June 2010 surgery and is not cleared up yet - will it ever be?
  • and the list goes on.............
More to deliberate on.

In the meantime - the pump comes off tomorrow aftrernoon and on Wednesday morning I am flying to WA to conduct a wedding for a dear friend in Margaret River. Spending a week there with friends before I have to return and perhaps maken a final decision about surgery.

Talk again soon

Monday 28 March 2011 @ 5.30pm

Wednesday, March 23, 2011

'Under the pump' again

Wednesdays are 'pump on' and 'pump off' days. So yesterday the pump was reconnected - full of chemotherapy - for the next seven days. During the week free of the pump I felt very well and was able to do all I needed and wanted to do. Of course, there was a nanna nap every day, but that's just as much to do with age as with any treatment!

I had a surf every day (except when I was out of town) and it was blissful. I only need to walk across a park from my place and I am at the beach. The water temperature is still 'Terrie friendly' so it was a highlight of each day.

The weekend was busy with my two weddings. This photo below was taken on my arrival at The Glen at Mt. Keira Scout Camp for Lauren and Tim's wedding. It was a magical setting, a delightful ceremony (even if I do say so myself) and the couple each chose wedding vows written by Dr. Seuss and adapted to their role. They kept their choice secret from each other, so it caused not-a-little amusement for each other and for the guests.

It rained until a few minutes before the ceremony began, so the Plan B arrangements were not needed.

For Saturday's wedding for Olivia and Fernando, however, Plan B had to be adopted early in the morning for a 4.30pm ceremony. It poured raining all day. It was moved to an indoor venue which had a magnificent picture window overlooking the beach - everybody was happy.

Once the weddings were over I was free to have a break away from Wollongong. My friend, Gayle, and I took ourselves off to my Dad's farm, which is near the beautiful town of Young NSW. The aim was to chill out and relax - and we did. Lots of cuppas on the verandah overlooking the home paddock, the racehorses in their paddocks, the neighbouring farms and their crops, the ducks on the dam, the alpacas and their babies, the beautiful Murray Grey and Black Angus cattle. Lots of Scrabble games when it was raining and we were confined to indoors.

The health issue is never far away, but services are everywhere and I was able to have my scheduled blood test in Young and the results were with the chemo clinic in time to establish that white blood cells and platelet levels were healthy enough for the next dose.

So.... here we go again for another week.

Thursday 24 March 9.30am

Thursday, March 17, 2011

Second round of treatment is over

Yesterday that lovely chemotherapy pump - such a classic fashion accessory - was removed. Phew! The week 'on' has been manageable, even though I haven't felt totally on top of things.

On Saturday I conducted a wedding at Athol Hall, Mosman, overlooking the beautiful Sydney Harbour, the bridge and the Opera House. Fortunately my wonderful friend, Kerry, volunteered to be my driver and my assistant. Kerry made sure I arrived in plenty of time, was seated when I could be, was well hydrated on such a hot day and was patted with tissue to remove the beads of perspiration before and after the ceremony. She delivered me home safely afterwards and wasn't even cross that I slept for the whole 90 minute trip.

Thank you, Kerry. I couldn't have managed it all on my own. The pump was well concealed under my clothes and I think I 'got away with it'. Only those in the know would have known.

The rest of the week was OK. I managed to shop, bank, wash, cook, clean, eat, dine out, finish the jigsaw and start a new one, read, sleep and generally get on with things.

Yesterday I also had my visit with the Chinese herbalist who increased the strength of my herbs and gave me extra acupuncture needles - to help me cope even better with the treatment. Today (Thursday) I'm feeling great. And I can have a surf every day. Yippee!

And tonight I have enjoyed an Australian Chamber Orchestra concert with friends.

Tomorrow a wedding, Saturday another wedding and Sunday I'm travelling to my Dad's farm to stay for a couple of nights with a friend.

Thursday 18 March 11pm.

Thursday, March 10, 2011

Chemo round #2 - day 2

Yesterday morning I was hooked up to the drip again for a couple of hours and then had the pump installed for the rest of the week. Blood tests showed that my platelet count had not dropped very much, so Round #2 could go ahead.

No fuzzy head this time. Sleepless night last night, the same as last time. Jigsaw almost finished. Tonight I'll probably sleep like a log.

Last time my voice was croaky for the first few days, but then it went back to normal. It's croaky again today, but hoping the same will happen.

I don my celebrancy hat again this Saturday for a wedding at Athol Hall, near Taronga Zoo at Mosman. My friend, Kerry, will drive me there and act as assistant - I'm very grateful for that. And next week - one on Friday and one on Saturday - both in Wollongong. I won't be wearing the pump then, so won't need a helper so much.

It's nice to be able to continue with my celebrancy practice. Outfit has been organised to conceal the pump. And if I lose my hair, brides are OK with me wearing a hat. The next wedding is on 1 April in Margaret River. I'm going for a week with the groom's parents - off chemo week. His Mum's a nurse - my insurance policy!

The Hopemobile has gone to its storage home for a little while - but not for long :)

10.30pm Thursday 10 March

Tuesday, March 8, 2011

Chemo round #2 underway

I have had a great week, free of chemo. Here are some pics of the overnight Hopemobile trip to Bundeena in the Royal National Park.

1. My friend, Helen, perusing the menu at the Bundeena RSL - with view over Hacking River

2. Breakky at the Hopemobile

3. On the ferry from Bundeena to Cronulla

And now for a week of chemo. Went for an early morning surf - beautiful

Pump installed this morning. Feeling OK - not nearly as dizzy as with the first round. Fingers crossed.

2pm Wednesday 9 March

Wednesday, March 2, 2011

First week is over

Thank heavens I've got my clear head back. For the whole week I seemed to be in a foggy daze. Yesterday morning when I woke the pump was empty and my head was clear. Yeah!

So........ for Week #1 the side effects seem to be
  • extreme tiredness
  • fuzzy head
  • husky voice for first 4 days
  • hint of headache occasionally - but didn't ever eventuate
  • couple of sleepless nights - jigsaw now underway :)
The pump was removed yesterday and I'm free of treatment for the next week.

My Chinese herbalist has given me stronger herbal capsules to help me through. The GP has discovered an infection I've had for months and didn't know it - so strong antibiotics for the next 10 days.

All in all - I'm feeling OK after Week #1

Planning an overnight trip in the van on Sunday night to stay in the Royal National Park. Back into the salt water tomorrow.

Posted 6.20pm Thursday 3 March