The Last Month

Yep. I've realised it's a month since my last post. So, here goes....

More of the same, more of the same in Durban, expecially lots of walking around the estate and some partying with the children. There are photos which will appear on this blog as soon as I can figure it out again :)

We also went to a beautiful game lodge - Phinda Game Reserve - for 2 nights before I returned home. Nikki and the children and I drove 3 hours north of Durban to this magnificent game reserve and had a brilliant experience. We saw The Big Five as well as lots of other beautiful African wildlife, birdlife and flora. Our accommodation was first class and all-in-all it was a brilliant experience- I've already said that once, but it deserves to be said 'at least' twice :)

Sadly, since our return Zeke has been sick with tick fever which he contracted at Phinda and Nikki has been ill as well. At the time of writing this, they are both hail and hearty again.

The day after returning from Phinda, it was time for me to return home. Nikki and the children took me to the airport in Durban where I boarded a domestic flight to Johannesburg and then an international flight back to Sydney.  It was my great fortune to know the Captain of the flight who very kindly arranged for me to be upgraded to Business Class, to be looked after beautifully by the cabin crew, to visit the cockpit after we had landed and then to chauffeur me home to Wollongong, as he also lives here. Now that's really door-to-door service!

 See, I wasn't kidding about being in the cockpit - or any of the other stuff!!

And since then - whew! It's been a whirlwind. Nice to be hoime, but not for long.  I moved into a friend's apartment to house-and-plant-sit.  Among the many advantages of this is that there is room for my sister, Leigh to stay with me. Leigh arrived from Canada a few days after my return and we've been having a very sisterly time since.

Among the things that sisters do for each other is to come to medical appointments. We visited the radiologist who confirmed that I will need to have radiation because of the severe pain caused by one of the tumours putting pressure on a nerve in my back. Because the pain killing drugs are doing such a good job, this treatment can be delayed until February, when I will have the time to attend the clinic for 20 doses of radiation on 20 successive working days. The aim is to reduce the inflammation and subsequent swelling in the muscle which houses the tumour, hence taking pressure off the nerve.  Hope it works! Then I can give up all these drugs.

And now I'm in Queensland.  Arrived yesterday on the Gold Coast to spend a week, including Christmas, with Tim and Debs and Oscar and a few of those days with Debs' parents who will arrive tomorrow. Lots of present wrapping today and now they are under the tree until the big day.

Her are a few photos from my holiday in South Africa

Arriving in Durban on 2 November, after being delayed for 2 days by QANTAS being grounded due to an industrial dispute.

Willow performing her one-girl concert for me in my bedroom. And she can hold a tune!

Zeke is an 8 year old who never has a book out of his hands. I like it!

The Hadidas bird, of which there are many, whose job it was to screech loudly as it flew past my bedroom window at about 4.45am each day. Aaaagh!

The monkey who had a lot fo mates, all of whom raided the house and took all available food from kitchen bench, if no-one was alert enough to call out "Monkey alert' so we could close doors and windows. Oh yes, they look very cute, but .....

High tea party in Willow's classroom for end of year celebrations.

All of us at brunch with friends at a favourite restaurant.

That's all for now - 12.42am on Friday 23 December.

Mid November update

South Africans live in grand houses - well, those that I meet when I'm here do!  This is Nikki and Sam's house (almost all of it. I didn't stand far enough back to get it all in)

And they live in Mt. Edgecombe Estate 2 - it's compulsory to have a green roof

I took this shot while out walking one day - visitors to the estate - beautiful impalas

While I've been here, my Aussie-based grandson, Oscar, has turned 4 years old and he had a pirate party :)

Activities are still pretty much the same, based around the school run, after school activities and the birthday party world of 5 year olds and 8 year olds.

All those pills and potions and patches I'm taking are still doing their job.  I ran out of one drug which can be purchased over the counter in Australia. So I went to a pharmacy with the packet to buy some more. When I showed the pharmacist the packet (for Panadol Osteo) he informed me that it is not available in South Africa and that I should consult a doctor to prescribe an appropriate drug.

Nikki was able to get an appointment with her doctor for me on the same day fortunately, so off I went to explain my situation and ask for more drugs.  He confirmed that Panadol Osteo was not available here but that I should take their version of Panadol, which they call Panado (emphasis on the second 'a' as in 'ar'). He also prescribed Celebrex and said I may get even more relief with its pain relief qualities.

Lo and behold! he was right.  Even though I still have pain while standing still, I can now walk for as long as I like without being in major pain. Seems crazy, doesn't it. So, I have taken advantage of that since and have been walking all around the estate for hours - most days. Today it's raining, so no walk today. Boo hoo. It's been great to get out and do something more energetic than sitting by the pool.

As I write this it's 12.15pm in South Africa on Thursday 24th November 2011. I'm now off to have a haircut. Ciao!

Tim's 40th and Durban Update

Celebrating Tim's 40th

The Birthday Boy, his sister, Nikki, and their Mum

                               
                                        The Birthday Boy and his beautiful partner, Debs


Life in Durban with the Moffitts - Nikki, Sam, Zeke and Willow - is delightful.  Lovely family things together, including rising at 5am or so!!!  Can you believe that school starts here at 7.30am? And there are no school buses, so there is a school run to do every morning and afternoon.

Pain is well under control as long as I don't have to spend much time on my feet - lots of sitting and lolling about! And I've been able to do it by the pool for the last couple of days. We've had some cool, windy, rainy days, but they've gone for the moment and the sun is shining.  Chemo means I can't really sit in the sun for any length of time, but the shade is OK. Lots of reading and crosswords while the children are at school.

Oh dear! It's Tuesday 8 November......

and I haven't written here since 20 October. Life has been sooooo busy.

Since then I have had a series of last medical appointments to ensure I have adequate instructions and medication for the 5 week visit to South Africa. I will return to Australia mid-December to have radiotherapy to shrink the tumour in my back muscle - which is the one that is touching the nerve and causing pain in my left upper leg and pelvic area.

I've had the necessary 'beauty' appointments prior to departure - hair, face, legs, nails

I've had a few meals and 'teas' with friends to say farewell

I've had shoes and handbag mended

Most important of all, I've helped celebrate Tim's 40th birthday and enjoyed having Nikki here for the celebrations. Hers was a whirlwind trip to Australia that only lasted 5 days. She fitted a great deal into those 5 days and I think she must have just rolled onto the final plane trip to sleep all the way from Hong Kong to Durban.

The party was a fab occasion where family members and friends from all the phases of Tim's life gathered upstairs at a pub in Darlinghurst to congratulate him on reaching the Big 40 and to wish him well for the next 40 or so years.

There have also been some sombre moments.  I have attended the funeral of a dear friend of the Terrie and Bill Eddy family. Alan passed away of a massive heart attack at the age of 54. Too young to die. I've also conducted two memorial services for friends whose family members have passed away. It is a privilege to be asked to officiate on such an occasion and an honour to be able to assist the family in their time of grief.

And so, with packing done, last minute bills paid and farewells made, I was ready to fly from Sydney to Durban via Johannesburg on Monday 31 October. But QANTAS had other ideas. They grounded the fleet on Saturday 29th, didn't fly on 30th and thought they would be back in the air on 31st. My travel agent advised me to go the airport for my 10.35am flight - just in case it was going - and to be 'in their face' if it was not, to ensure I'd be on a flight as early as possible. I negotiated to fly on the same flight on 2 November.  It was far from the most favourite flight I've ever taken, but I survived and am now safely and happily in Durban with my little family - Nikki, Sam, Zeke and Willow. It was a great tonic, after a gruelling 20 hours of travel and waiting, to be greeted with smiles and excited shrieks and big hugs at Durban airport.

And now I've been here almost a week. The days have been alternately cool and warm with rain and thunderstorms occasionally. Today for the first time, I'm wearing shorts and singlet top - it feels good :)  Nikki has gone off to take the children to school and go to the gym while I catch up on writing this blog post. Days have been filled with - the school run, birthday lunch for Nikki's friend, watching Zeke at his judo class, helping Zeke build a fort in the back yard, reading Willow her favourite book - many, many, many times, attending the First Holy Communion of the 11 year old daughter of special friends and going on to the family party afterwards, checking Zeke's homework, sleeping until noon (sometimes!), playing Words with Friends and Hanging with Friends on my iPad with lots of help from Willow and Zeke, and generally hanging out with the family.

I'm using Nikki's computer, so will need her help to add photos which will have to wait until the next post. Until then ........

Time at home always means....

.....doctors and blood tests and scans and MRIs (this week anyway), patches and physical therapists AND RESULTS

So, out of all that, the news is sweet and sour. The sweet is VERY sweet as the blood test shows that the tumour markers have gone down again. And the liver function has improved. Yeah!

The sour is that the pain is not going away and not really being masked by all the medication and patches that are being used. CT scan and MRI both show that the tumour in the (psoas) back muscle is impinging on the nerves at L2 and L3 (for those in the know) ie lower back.

So... I have more medication than you can poke a stick at, and than I've ever had in my life before, with instructions for consumption that I need to make notes on - to be sure I'm taking the right one at the right time. Phew! It's more than a full-time job.

And I have them in bulk, because on 31st October I am flying to Durban, South Africa to stay with Nikki and her family until 7 December. I'll need a whole separate bag just for the drugs and the herbs :-). And, of course, letters from relevant medicos explaining why I'm carrying such a stash of drugs.

And now to move totally away from all that drama....... the sweet, exciting news is that Tim's 40th birthday party is on tomorrow night. Big celebrations for the family and his friends.

Yes! I have a 40 year-old son, and a 41 year-old daughter. I must have been a child bride :-)

And Nikki is flying in tomorrow morning in time for her brother's party and a week catching up with family in QLD. She and I arrive in SA on the same day but on different airlines. She's using frequent flyer points on Cathay Pacific and I'm using hard-earned $$$$ on QANTAS.

The Hopemobile is about to be put into hibernation until at least after Christmas.

As soon as I return from SA, my sister arrives from Canada to stay until March. So, it's busy, busy, busy.

I hope your life has the sweetness in it that mine does.

Friday 21 October @ 4pm

on the road home

The pain is just the same - still can't get rid of the burning feeling in my left upper leg

The road is just the same - although there have been some improvements to the Pacific Highway since I last traveled it

The scenery is just the same - brilliantly green since all the winter rain, and the sea is azure blue - as always

The Hopemobile is just the same - a reliable friend who starts first time every time and carries me smoothly along the highways and byways

The weather - well, could be better, but at least it's not raining.

Home tomorrow



Thursday 13 October @ 9.45pm

Going along nicely

Since I wrote last life has been pretty OK.

The wedding on Sunday went well - beautiful sunshine, gentle breeze, beautiful bride, handsome groom, proud parents, happy friends. It was the first day of daylight saving and everyone managed to arrive at the right time. There was some concern about the Queenslanders - but they all managed to work it out.

We were in the Zig Zag Garden at Mantra Resort, Kingscliff on the Tweed Coast.There were fluffy brown rabbits and spiky water dragons hopping and running across the lawn duirng the ceremony. And a persistent bee that wanted to be part of my fashion accessories. Fortunately there was a brave, handsome, young man (my cousin's son) who gave the bee the message that it wasn't wanted and the ceremony went on without a sting. Phew!

The bride is my cousin's daughter so, once the formalities were over, I was able to spend some time with relatives I don't see often.  It was fun.

And then the drive to Mooloolaba. It was motorway all the way, almost 3 hours, and I arrived safely. Carole was already settled into the studio apartment on the beach front and had brought in an evening meal for the tired driver. Lovely.

We spent the next couple of days visitng the local sites - Ginger Factory, The Spirit House for lunch, Noosa, Australia Zoo - as well as enjoying the window shopping and walking along the beach at Mooloolaba.

On Wednesday we drove to Brisbane airport where I left Carole to catch her flight home and I carried on to the Gold Coast and back to Tim and Debs' home at Southport. Debs has just moved in and there are still bags and boxes waiting to be unpacked and lots of things to be sorted. So, the last few days have been exactly that and organising the linen cupboard and the pantry cupboard and rearranging furniture until it looks 'just right'.

And if there's anything that might distract me from the pain, it is the wonderful news that they are expecting a baby next April!! Wow! Another grandchild. I honestly didn't think there would be any more. Very special and exciting news. Scans and blood tests all show that mother and baby are very healthy. They are so happy - and so am I.

It's nice to be sharing news about scan and blood test results that are not related to my own health issues :)

The pain is the same as reported last time - manageable.

I plan to hit the road in the Hopemobile on Monday and make it back to the Gong by the weekend - taking it slowly.

Saturday 8 October (my father is 91 today) @ 9am Queensland time.

Briefly

OK. Not really in the mood for writing, so here goes - briefly

•  CT scan showed tumour in back muscle is torturing the muscle but not impacting on spine or major nerves - that's good
• It means that radiation is not required but that pain management is required
• so, I have pain patches and several pain killing drugs of varying strength - all of which are to be used/taken simultaneously, along with the oral chemotherapy, the Chinese herbal tablets, the tablets for my restless legs (which haven't managed to get a mention in all this until now) - OH! and the Vitamin C powder and the anti-constipation stuff!! Not much time for anything else in my day, really :)

And how's the pain? - you may well ask. It has dissipated somewhat but not entirely. I am managing to sleep through the night and get through the day as long as I don't spend too much time on my feet. The most comfortable position for me is sitting.

So, that's not too bad, I guess. And it means that driving the Hopemobile is not going to cause me any more discomfort than the usual stiffness and needing to stretch after a couple of hours behind the wheel. And as I don't do long hauls, all will be OK.

I'm back on the Gold Coast spending time with family - Tim and Oscar and Debs and with friends - Carolyn and Warren.

Also managing to catch up with other friends, Judith and Morton.

Wedding at Kingscliff on Sunday and then off to Mooloolaba in the afternoon to spend a few days with Carole in an apartment on the beach.

All for now. This is more than I thought I'd write :)

Thursday 29 September @ 10pm

Crash!

It's nice to be back home in The Gong - to catch up with family and friends, to enjoy the beautiful place that it is and to catch up with 'things' that need to be done. Took this pic when I was having a cuppa with a friend at a beach cafe, just a short walk from home.

Among the 'things' that have to be done while back at home are blood tests, doctors' appointments and scans. Unfortunately the result of the blood test was not good - the tumour markers have increased in the 2 months since I last had chemo treatment. So.................... I'm back on the chemo tablets with strict instructions to take the correct dose as advised and to call immediately should I have any concerns. And to come back in a month, have another blood test and see the oncologist. News like this certainly causes the spirits to crash! I've been there before :)

I also consulted my GP about the pain in my left leg and side. She referred me for a CT scan on my spine and lumbar area to see if the tumours are tangling with nerves. Had the scan yesterday (Friday) and will see her again on Monday for the results. If her thoughts are correct then radiation is the only option. I'll worry about that when I get the verdict.

In the meantime, tomorrow I will conduct a wedding at Mt. Keira Lookout and get back on a plane on Tuesday afternoon to return to the Gold Coast, so that I can be prepared for my October 2 wedding, which will be held at a resort at Kingscliff.

The trip home last Wednesday was eventful. The 9am flight I was to catch was cancelled at 8.45am and I was lucky enough to get a seat on the 10am flight. As this change destroyed the arrangements I had for my arrival in Sydney, and my mind was busy with thoughts of calls to cancel stuff, I was delighted to find a special friend was also on the same flight. Her car was at the airport and she was happy to drive me home via the places I needed to visit on the way. We encountered a massive traffic snag due to a truck accident, so our trip together was much longer than it should have been.

My friends are amazing and I am continually grateful for the way they and the universe look after me when I'm in a bit of a pickle :) Thank you, Carol. It was an amazing day, with a magnificent friend.

Thank you to all my friends who make this life journey, which could be totally revolting, as eventful and happily serendipidous as it is.

Saturday 24 September @ 3.16pm

The Gold Coast

How lovely it has been spending time with my son and my grandson. Walking on the beach, playing at the park, jumping on the jumping pillow, reading bedtime stories and having lovely conversations - most of which I can understand :) - and talking with Tim about his work and his life and his dreams. It's been a very special time. Oscar really loves his 'Lifesaver' outfit - can't you tell?

And now Tim has gone off to Auckland with mates to watch the rugby, Oscar has gone to stay with his Mum and Nanna, and I am at Currumbin staying with my very dear friends, Carolyn and Warren. They have a lovely home in a quiet spot on Currumbin Creek. I feel very relaxed here and WARM!!!

The SWELL Sculpture Festival is held in September at Currumbin Beach - 'getting art out there'. A series of sculptures are installed along the beachfront - similar to 'Sculptures by the Sea' in Sydney in November. This one below is called The Gathering.


We went to see the sculptures late in the afternoon, as the sun was sinking. Sunset below over The Alley where Currumbin Creek meets the Pacific Ocean.



And this morning we drove to the fishing harbour at Tweed Heads to buy prawns. No prawns, but there were plenty of spanner crabs.

Carolyn and I go back a long way - as teenagers we trained as Physical Education teachers together and I was the bridesmaid at her wedding in 1968. Our time together is so easy and comfortable and I'm really looking forward to the next couple of days together before I head back home on Wednesday.

The pain I mentioned earlier has got worse, so I'm keen to see my GP on Thursday morning. Meantime the pain patches are playing their part. But before that I will see Dr. Chen shortly after I fly into Sydney on Wednesday. If you wish to see his website, just click on his name.

I've had an inquiry from someone about Dr Chen, through this blog. Angela, I hope this helps. Please feel free to mention my name (Terrie Baxter) if you are making contact with his rooms. You will see a testimonial from me on his website. Lot of water under the bridge since then, but I'm still battling on :)

Jannie Annie, are you Jan LeM from SA?

Today, Sunday 18 September, is my granddaughter, Willow's, 5th birthday. She celebrated yesterday with family and friends, but without her mother, who is on her return journey from her successful ascent of Mt. Kilimanjaro. I'm very proud of them both.

It's late. Time for bed @ 10pm. G'night.

Pics

And this morning the blog WILL allow me to load photos :) Oscar and Tim cooking together



Sharing the road from Killarney to Boona with a farmer and her herd


Driving east at sunset - towards Killarney


Having a cuppa in Texas with cycling mate, John



Casuarinas and willows beside the weir on the Macintyre River at Inverell

East or west? East wins, hands down

Well Inverell is a lovely town - but it's very cold this September. It was my mother's home town. I always remember her saying that the water froze in the pipes overnight in the winter and she couldn't wait to get out of there. The war came and she joined the WAAFS - she was out of there.

It was there that I decided to continue my journey in an easterly direction, rather than heading west to sample the hot springs of Moree and go further west to visit my niece, Bianca, and her family in Mungindi. I'll have to save that for another time - in warmer months.

I headed north for a little bit until I crossed the border into Queensland. Stayed overnight in Texas - still very cold - but woke up to a sunny morning and wandered into the town in time to meet up with one of my cycling and walking buddies, John. We had lunch in the local coffee shop and he told me about the Cycling QLD Big Ride that he was doing. Eight hundred cyclists of varying ability and fitness levels are riding for 9 days between Goondiwindi to Brisbane. They have a rest day in Stanthorpe tomorrow. Much like the ride I did in 2005 which went for 9 days from Kosciusko to Kiama. The rest day was in Quenabeyan. Couldn't do it now, of course, but glad I did it then :)

From Texas I turned east toward warmer climes and after a pleasant afternoon's drive through beautiful farming landscape, I stayed overnight in a caravan park at Killarney. And phew! it was several degrees warmer than the previous nights.

Today I've continued east, through more magnificent scenery, including some tropical rainforest in the mountains, until I reached Southport on the Gold Coast and am now settled in with Tim and Oscar.

No more driving for a while. Just fun with Tim and Oscar and catching up with some other family and some friends - in temperatures that only require a light jacket, or even just a long-sleeved shirt - maybe a T shirt, if I'm lucky.

I have taken pics along the way, but this $%#&^# blog won't let me post them tonight!

10.04pm Monday 12 September.

Upper Hunter to Liverpool Plains and beyond

Hopemobile beside the creek at Wallabadah, south of Tamworth


Agriculture and mining side by side in the Upper Hunter











Blossoms in the streets of Nundle where I visited the Woollen Mills and a reconstruction of a gold mine.

And from Wallabadah I travelled via Nundle, to Tamworth. Beautiful agricultural scenery which is unusually green due to all the rain over winter.

The last three days and nights have been spent with my friend, Robbie, in her home in Tamworth. We had leisurely days in which she went about her usual activities or kindly took me to show me some of the sights of Tamworth. I also visited some family members (Stacey and Lyle, April and Hamish) and some friends (Trudi, Ella and Hamish). Robbie was kind enough to invite an old friend from my student days for dinner one night - we had fun reminiscing. Robbie is a great cook, so I've been very spoiled while I've been in her home.

This morning before I left Tamworth we went to visit the magnificent equestrian centre, opened in 2009, where the NSW Dressage Titles are are being held over this weekend. It's an impressive complex where a variety of events are held throughout the year, not only equine activities.

At 10am The Hopemobile and I left Tamworth and motored north via Manilla, Barraba and Delungra on our way to Inverell. I was born in Inverell - way back when :) - and have not been back since I was two months old. It's time to visit.

We drove through rain and wind all the way today and the road works between Barraba and Inverell mean that my vehicle is not so sparkling clean as it was when I left.

Tonight I'm staying in a caravan park, had a bistro meal at the local bowling club and am getting ready now to snuggle down and prepare for a minimum of 4' overnight. Brrrr.

Health update

• hair has stopped falling out - in fact, is starting to grow again
• largest tumour is pressing on nerve and causing discomfort on left side and down left leg, so plenty of Panadol Osteo is being consumed.

Daughter update - yesterday was Day 1 of Nikki's climb on Mt. Kilimanjaro. Her Facebook entry says -

Camp Day 1 - cold, tired & dampish but happy campers

So, all good so far. Here is the link to her blog about preparation for the climb and the reasons for doing it

This last pic is of Robbie and me at the Tamworth Lookout

On the road again

Well, the Hopemobile and I are on the road.

I spent the weekend in Sydney, with the bonus of having brunch with Tim and Debs at Waverley on Sunday morning before setting off to head north. I drove to Singleton to stay overnight with the Williamsons - Sarah and Hamish, Max and Lucy. The children (Max and Lucy) love the van and we spent some time sitting in it reading stories after dinner.

Today I meandered up the New England Highway under blue sky and sunshine, stopping for short breaks along the way and detouring into the small towns of Denman, Jerrys Plains and Sandy Hollow and into the Washpools at Towarri National Park.

Tonight I am camped at Wallabadah beside a creek with several other happy campers who tell me they often stop here on their travels north or south. Cooked some fish, sweet potato chips and tomatoes on the BBQ beside the creek before retiring under the doona to read and to write this post. G'night :)

Whew! Yet another reprieve

More pics from Norfolk

And now to the exciting news :)

Yep. It's official! Yesterday's scan has revealed that the tumours are not as 'avid' as they were, one of them has disappeared and the others are partly calcified. It's all good news.

From the oncologist's mouth - "These tumours are not affecting your vital organs, you can live a long time with them like this. Go off and have your holiday. Let's do blood tests every 6 weeks".

Next 2 weeks are busy with:

• visit to Chinese herbal Doctor tomorrow
• social activities with special friends
• preparations for the Hopemobile to go back on the road- planning to leave on 4 September to head north for some warmth - not sure how far, but will spend some time with Tim and Oscar on the Gold Coast

Tuesday 23 August @ 6.30pm

Ah! Norfolk Island

Roslyn, Carole and I have returned from a wonderful week's holiday on Norfolk Island. We stayed at Steele's Point in the Phoebe Adams Cottage at Trade Winds Country Cottages. Our cottage had everything we needed to be comfortable and either stay in or go out every day.

We chose to go out every day even though the weather was so unpredictable - cold, windy, raining, sunny, sun showers, rain squalls, downpours - and sometimes warm. We never left the cottage without our umbrellas. The photo above was taken on our first day there - Ros' scarf tells the 'wind' story that day.

Pancakes for breakky on a sunny morning. We had healthy breakfasts at home every other morning. I swear :)

Mother-of-pearl inlay in the pew ends at St. Barnabas' Chapel

View along the coast from the Captain Cook Memorial in the national park

Coastline in the opposite direction at Captain Cook Memorial

There are several beautiful beaches around the island, but this is the only one we ventured onto. It's the beach at Cemetry Bay

If you look closely, you can see a skull and crossbones at the bottom of this headstone. Convicts who were involved in an uprising had this symbol carved into their headstones when they were buried.

Enjoying the sun, the Norfolk Island pines, the coastline and the Pacific Ocean at Simon's Water on the NE point of the island.

We had a great week, but Ah, it's good to be home. It was nice to be free of the effects of chemo while I was away. Just needed the take a little rest in the afternoon to be able to keep up the pace :)

On Monday I go to Royal Prince Alfred Hospital in Sydney to have a PET scan and then take the results with me to see the oncologist back here in Wollongong on the same afternoon. So, by Monday night I will know the real story about the state of my tumours and the level of cancer activity.

Will write here again then.

It's Thursday evening on 18 August @ 7.15pm

No chemo for a month

This week's blood test revealed that my white blood cell and my platelet counts are too low for the administration of chemo. Those of you who have been reading this for what seems like forever, will recall that this has happened on previous occasions.

It's not uncommon for the chemo to destroy white cells and platelets, and thus your immune system. There is a level below which it is dangerous to continue with chemo, so.............. I'm free of chemo for a month.

That's quite good really as I'm off to Norfolk Island, with my friends Ros and Carole, on Thursday. It will be much more enjoyable not being under the influence of chemo.

When I return I am scheduled to have another PET scan. That really will tell the story about what the tumours are doing.

I will see Dr. Chen tomorrow and discuss with him what this all means from his perspective.

I've just had a wonderful weekend in Sydney spending time with special people. On Saturday morning, Tim and Debs and I went to the auction of Nikki's Sydney home. Unfortunately it did not sell so they have to make decisions about what to do next. My friend, Jennifer, joined us and we all went for a cuppa and chat in the sun afterwards.

Then Jen and I joined another friend, Marcia, at Ripples Restaurant at Chowder Bay looking out onto Sydney Harbour. Delicious food and lovely company. I stayed with Jennifer overnight and we had breakfast at Balmoral and then a walk at Gunnery Barracks before I headed home. The weather was brilliant all weekend, Sydney Harbour was spectacular - as was the company. Thanks, everyone. I took some pics with my iphone, but don't have the know-how to transfer them to this page. What a pity. I'll work on that.

It's almost 11.30pm on Teusday 9 August. Good night.

Bowel Cancer Awareness II

You'll need to go to this site if you wish to donate to Nikki's fund raising climb of Mt. Kilimanjaro

Jodi Lee Foundation

When you get to the site, see the drop-down box that asks you to select an event - choose Kilimanjaro Climb

Thanks everyone :)

Bowel Cancer Awareness

Please take a look at my daughter's blog. She is climbing Mt. Kilimanjaro next month in an effort to raise money for Bowel Cancer awareness. You might like to donate to such a worthy cause.


http://offtoclimbamountain.wordpress.com


Sunday 7 August @ 11.45pm after a wonderful weekend in Sydney with special friends. Also spent a little time with my son, Tim, and his girlfriend, Debs. Very special.

and now it's about the hair!

When this chemo all started, I was told that I may lose my hair, but then again, I may not! Diffferent people have different reactions.

Right from the start my hair has been falling out. I know I haven't mentioned it .... because it's been happening so gradually, uniformly, unnoticeably. I did notice a lot of strands of hair in every part of my home, but it wasn't noticeable on my head.

However, for the past couple of months I have enjoyed having a thinner head of hair. I've always had sooooo much hair - envied by some, I know. It's not that I didn't like it, it's just that it used to get so thick and bushy when it was time for a cut - and sometimes I'd leave it for too long before the cut... and hate the 'bush' on my head.

But today............... a dear friend pointed out the small bald patches behind my ears. Oops - now that's a place I can't see when I look in the mirror. It's probably where I push the sides of my reading glasses and my sungalsses on and off my head.

A friend who has survived breast cancer and been through the hair loss process has given me her hat box full of wigs, scarves, turbans, headbands - ages and ages ago. It's been stored away in the hope that I wouldn't need them - as beautiful as they all are. Now I've dragged it out realising that I may well need to use its contents - and before too much longer.

The few hats I own are now too big for my head, so I might have to go out and buy at least one - once all the hair is gone. A bit of retail therapy ahead. Yeah!

I had a little retail therapy about a month ago and shouted myself a new Apple ipad 2. What fun. So last night I went to the Apple shop in Sydney for a free workshop on using the features of this enthralling device. It was excellent and I'll be looking to go to more when I have the time.

This week my Chinese herbal doctor was VERY PLEASED when he did the 'pulse and tongue test'. And that makes me pleased, too :)

Meanwhile, for someone who doesn't cook - I'm hooked on Masterchef - 6 nights a week on TV.

This coming week is week 3 in my chemo cycle - the best week - leading up to the start of the next cycle which will be Round 5 of 9.

Sunday 31 July @ 9pm

and the fight goes on :)

Well, good news this week.

It was time for another blood test and the usual visit to the oncologist for the results and to see if my white cell and platelet counts were OK to continue with the next round of chemo.

So WCC is OK, platelets are not too low, so don't have to go back onto black pudding :)

But the good news is that the tumour marker (it's called the CEA and it indicates the level of cancer activity in my body) has dropped even further and is now into the 'normal' range. Yippee! So the graph over the past 8 months, since this all started again, goes very sharply up and then does a nose dive - very sharply down.

It means the tumours are shrinking in response to the treatment.......it also means that the treatment needs to continue. So, I went out of his office straight into his day clinic where I had my 4th round of 9 rounds of chemo. Almost half way. And after the 6th round (mid August) I will have another PET scan which will actually show it all in pictures, rather then just numbers on a page and a graph. It will show the cancer spots in the places where they are in my body and it will show the size.

So, maybe Dr. Chen was a little bit right - that I will live a little bit longer and closer to 100!!!

Who knows which treatment is really doing all the good. I honestly believe that the combination of the western medicine and the alternative treatment that I receive from Dr. Chen is a magic formula. No matter who I speak to - medical or lay people - they all say, "just keep on doing what you're doing because whatever it is is doing well".

So that's what I'm doing - sticking to my Dr. Chen diet and exercise and herbal regime and having the chemotherapy as well. So you will still see me, each morning, stepping out in my bare feet to walk 200m on my rough road surface, patting my tummy and bottom with alternate steps - doing my DIY acupuncture. I know it's funny, but it's not a chore and it's over very quickly. Not doing it in this torrential rain though.

I have been making efforts to explore how acidic or alkaline my system is. Apparently if it's too acidic it feeds the cancer cells. So I've done lots of reading, consulted various people, tracked down some litmus paper for testing and also had a venous blood gases test. Dr. Chen advised that I cut down on all animal products - fish, chicken, eggs, honey etc. Then I read about which fruit and vegetables are good and bad for PH levels. I need to cut down a bit on all the fruit I eat - lots of sugar in fruit.

Anyway - after the venous blood gases test results it seems that my system is pretty well balanced and I don't really need to go to any more extreme measures with my diet. Phew!

All for now.Putting the finishing touches to a weddng ceremony for tomorrw night and planning my trip to Norfolk Island in August and then - just maybe - I'll go to South Africa in November to spend time with my little family there. All OK with the oncologist.

Thursday 21 August 2011 @ 7pm.

See my daughter's blog re...

..... climbing Kilimanjaro

Oops - it's been 2 weeks..

Two weeks already since my last post here. That's been 2 weeks free of ANY medical stuff. It's been heaven. But I'm back now to the regimen of consultations, tests, chemo etc



Well - I did go to Port Douglas with my Dad for a week's R&R. And that's exactly what it was. Dad and I had adjoining serviced apartments and really took advantage of the warm temperature (26'-28' every day), sometimes a little cloud cover in the mornings, but the rest of the days were open blue sky and sunshine, without wind. Perfect for long walks along 4 mile beach, reading, lounging by the pool - in the sun for Dad and under the shade of the palms for me - naps at any time of day, lunches or dinners at wonderful restaurants. It was very relaxing.


Dad loves his mud crabs!


Dad went on a fishing trip and caught lots of fish and had a great time. We went to the Daintree and took a boat ride on the river to view crocs, tree snakes and beautiful birds. Otherwise, we just hung around the resort.



Coming back to freezing Wollongong was a bit of a shock. Max 12' yesterday!!!!!! Swimsuit and sarongs and shorts and thongs, T shirts and summer dresses are now back in storage and the scarves and gloves and coats and boots are out again.

Yesterday I went to my Chinese doctor. He was very pleased with my condition and said that my chi is improving. His expression was "I can see a bubble"

Today I'm having lunch with my friend Karen to celebrate her birthday and tonight going with friends to an Australian Chamber Orchestra concert.

And next week - blood test, consultation with the oncologist and then my next dose of chemo.

Will report then

Thursday 14 July @ 10am

update

• blood tests last week show tumour markers are continuing to go down
  
• still headache free - yippee - I'm a different woman

• currently chemo-free- no intravenous drip or chemo tablets for another 2 weeks - yippee
• one blood test only this coming Monday, then nothing for 2 more weeks, so...... my Dad and I are off to Port Douglas on Monday for a week of warmth in the bones :)
• so - no Hopemobile trip just yet
• just home from a manicure/pedicure/facial session - heaven - and smooth face and pretty nails :)

My Dad polishing his shoes on the balcony before he goes to the horse races. He's a 90 year-old champ!

I saw the Chinese herbalist this week. He was very pleased with the blood test results and our discussion about my diet and my do-it-yourself acupuncture activities. So, I said "So, you think I'll last a bit longer then?" He replied "Oh, sure. You'll live 'til your 100!!" Ha Ha! The slow pace in which I walked into his rooms became almost a skip on the way out. I don't believe him for a minute (who wants to live to 100 anyway?), but it's amazing the difference it made to my mood for the day.



Sharing this pic that I took a few mornings ago from just outside my place at about 6.30am. 'Red sky in the morning, sailors' warning'


Saturday 2 July 2011 @ 2.40pm

Thank heavens for....

... Wimbledon tennis and jigsaws!

Yesterday I had my next session of chemotherapy poured into my system via a drip. It means a 4 hour session at the Cancer clinic with other patients. I take my knitting (hot water bottle cover this time) my crosswords and my reading. The only thing I get done really is my knitting because you can knit while you talk. It's a very social occasion. Most people have somebody with them, so the numbers are often as high as about 12. Much stimulating conversation is held - and mostly NOT about cancer. It's an enjoyable morning - nothing hurts :)

Back to the 'thank heavens for'. I have one of these session every 3 weeks. And I take chemo tablets for 2 of those 3 weeks. I had forgotten - probably because of what has occurred since the last session - that for the first few nights I can't sleep. It doesn't matter how weary I feel, after I've gone through the 'going to bed' rituals I settle in under my doona and lie wide awake................

Fortunately Wimbledon tennis is on the tele until the wee small hours of the morning and a dear friend very kindly dropped a new jigsaw in for me the other day. So the coffee table has surrendered its regular load and is now spread with a circular 500 piece jigsaw - the scene of a 50's era petrol station/mechanic shop with lots of colours - and not much plain blue sky!!!

The pins and needles in the hands are back, so I'm typing this with gloves on - as soon as my hands are exposed to the cold they are very painful. And my throat seizes up in the cold air and I have to gasp for breath. Gave my walking group a fright this morning when I arrived at our regular coffee destination and was gasping furiously. I think they were scared, but I wasn't. I know it only lasts about half a minute. And now that I've been reminded about it happening - I'll be more careful about how early I go outside for heavy breathing :)

I've been having days and days of headaches lately. Going to sleep with it and waking up with it :( The oncologist asked me if I wanted to have a brain scan. I told him 'No'. I believe it's mechanical - probably tension - so I am seeing a physiotherapist. He agrees with me - that it's mechanical - and says it's probably a result of the change in my shoulder from the frozen shoulder I had between 2008-2010. He is treating me to tell the muscles to go back to do what they are supposed to do and has given me some exercises to do - and there will be more. I'm pleased to report that I've had the first 2 headache-free days, yesterday and today. I'm amazed at how much better it makes me feel about EVERYTHING. Long may it last.

Making tentative plans to go away in the Hopemobile for a couple of weeks. Still just plans, so it might not happen. Watch this space.

Saturday 25 June. 4.30pm

STOP PRESS

This morning the oncologist called to tell me that the tumour markers are down further, according to last Friday's blood test. Yippee! Justification for continuing on this ghastly chemo regime.

Another blood test on Thursday, before I see him again, will tell a new story - or more of the same. Will I have much blood left after all this? :-)

Still walking barefoot, beating my chest, rubbing my spleen and liver areas and massaging my ears. And, of course, taking the herbal tablets. Something's doing some good.

Monday 20 June @ 4.15pm

Back on chemo

Quick update

• feeling much better and getting my strength back
• had my blood test this morning
• couldn't speak to the oncologist but was told by his clerical assistant that he said to resume taking the Xeloda chemotherapy tablets
• started taking them tonight - for the next 14 days
• have resumed my barefoot walking on the road now that I'm feeling better and the weather has improved
• still beating my chest, rubbing my spleen and liver area and massaging my ears - according to Dr. Chen's directions

I'm hoping that when I see the report from today's blood test, the tumour markers have reduced further

Nothing planned for the weekend - so I might get back to my reading.

Friday 17 June 8.50pm

a tiny bit of light

Diarrhoea has gone, appetite is back, strength is returning and I think I'll live a bit longer. That's something I didn't event want to do late last week.

Today, as instructed, I called the oncologist to get directions for the next move. He wanted to see me before he gave any instructions. That made me nervous. So I went to see him. He chided me for 'overdosing' on the chemotherapy. Now, I think I could win a legal argument that I wasn't the only one at fault on that score, but I think I'll save my energy for my health, rather than fighting legal battles.

He recommended that I have a blood test this Friday, call him the same day for the results, and if they are OK, then resume taking the chemotherapy tablets for the next 2 weeks.

BUT THE GOOD NEWS IS........................ that the tumour markers are going down!!! The blood test I had on 2 June show the markers decreasing by about 20%. I hadn't seen these results before, and nobody told me!!! That's very good news. My GP told me, during the week, that the fact that I no longer need any pain relief is an indication that the tumours are shrinking. I was reluctant to believe her. But now I think - maybe she was right.

Anyway - a blood test on Friday will tell a new story. It will be 15 days after the previous blood test, so there may be even more progress on the tumour markers.

It is now 7pm on Tuesday 14 June. It's cold, rainy, windy, dark - horrible. Take me to a tropical island :)

One week on and still riding it through

and sh****ng through the 'eye of a needle' :(

Being beautifully cared for by special friends who bring food, prepare it, serve it, clean up afterwards, change bed linen, take washing away, bring crosswords and newspapers and books, entertain me - and bully me to remember to take enough fluids and food to keep me going.

Today is a public holiday (Monday 13 June - Queen's Birthday). Tomorrow I consult the oncology people to see what the next step is. They told me to go to the hospital if I was in trouble over the long weekend. Fortunatley that has not been necessary.

More later

Boo Hoo

Today (Saturday 11 June) I was to officiate at Kellie and Sean's wedding at Lavender Bay at 3pm. I couldn't because I have been laid low for the past week with gastro. Whew! Is it awful!!!!

Since I last wrote I spent a beaut couple of days in the Hopemobile around the Pittwater area. The night's were cold, but the days were warm and sunny if you stayed out of the wind. ALL OK.

Unfortunately on the second night, when I was camped near Palm Beach, my innards started to rumble and the gastro set in. Nothing for it, of course, than to set course for home very quickly. There's no place like home when things aren't right.

And I've had to stay close to home all week - apart from visits to the doctor and a quick trip to the local library.

Consultation with those who know informs me that it is my reaction to this new chemo regime. I have been given medication, had blood tests, told what to eat and drink (keeping the fluids, salt and sugar up) and - basically told that I have to ride it through.

It started on Tuesday night - it's now Saturday and I'm still suffering. Yuk :( Hence I had to call my friend, Denise, who is also a celebrant, and ask her to perform the wedding ceremony for me today.

I am anxiously waiting at home, with the phone nearby, to hear that it all went well. Whew! She called and all went well.

Bye for now.

Claiming Chemo Brain!

Well, this morning I duly fronted up at the day hospital for my next infusion. The appointment was for 11am, so I went out to find my rough road on which to torture my bare feet. Found one not so far from home - by car. The people driving and walking their dogs to the beach along the street averted their eyes as I approached, so I just chirped 'good morning' and kept going. I don't think I mentioned that I have to pat my tummy below the navel - and my bottom, with alternate hands with each step I take. That might help you understand why the eyes were averted.

I've been pounding my chest, massaging my ears and rubbing my liver and spleen ever since.

While I was driving back home from this exhilirating morning exercise (at least the sun was shining), I received a call asking if I could come early for my treatment. As I had left the day completely free, except for food shopping which could wait 'til after the treatment, I agreed to go in early. I went home and had breakfast, took relevant tablets, showered and got myself there at 10.15am. Not bad, I thought.

I settled myself in on one of the new purple lazyboy chairs with swivel table for cuppas and odds and ends. The delightful nurse hooked me up and I got out my book to read.

The nurse asked me something about the Xeloda tablets I was taking and if I had taken them for 14 days after the last infusion. Disaster, dismay, tears (yes, I lost it momentarily). I told her that no-one had told me to take them for 14 days and then have 7 days free before the next infusion! Went she commented that I had been on this treatment before and thought I would remember, I reminded her that that was way back in 2007-8, and that I had been through an amazing amount of stuff since then and didn't actually recall that detail. I'm claiming chemo brain :)

She went away into a huddle with the NUM and came back to tell me not to take any Xeloda tablets for the next week. Instead of having my week free of it at the end of the 3 week cycle, I should have it at the beginning.

So, just a note to self - try to ask every question you can when going on to a new/old treamtent. Don't ASSume anything.

Note to nursing staff - don't ASSume that the patient knows ANYTHING. They'll tell you if they do.

May I say that I love all the staff at the day hopsital. They do a great job, create a stress-free atmosphere and I couldn't imagine being cared for by any better nurses.

So.... I have a few days free of any medical or social or family commitments and the Hopemobile is coming out of its carport. Kur-ring-gai National Park, Pittwater and Palm Beach - here we come for 3 days - Sunday to Tuesday. I'll take pics.

After my treatment today I did the food shopping, went out with friends for a cuppa at the golf club, called in to First Friday drinks with old rugby club mates, had a Vietnamese takeaway meal with a great friend in front of the heater at home while we finshed the cryptic crossword. Am in bed now and can't sleep. It happens every time - first 2 nights after the chemo infusion. I wish I could remember each time. I'm claiming chemo brain.

Right now it's 12.45am on Saturday 4 June 2011 and I'll probably fall asleep just as I want to get up to meet my walking group for a cuppa at 8am, after their walk. .... never in control :( but trying :)

Not good news

Well, I've had the blood test and seen the oncologist for the results. The good news is that the liver function is on the improve :)

Unfortunately, the not-so-good news is that the tumour marker is increasing in its measurement, which means there is more cancer activity in my body. Disappointing - and a bit scary :(

The oncologist suggests that I continue with the chemo for one more round. An effect is not often seen until after 2 rounds. So ....... I go back to the day hospital on Friday morning to have another infusion and continue taking Xeloda tablets for the next 3 weeks.

At that time I'll have another blood test and if the result is as it was this week, I will have another PET scan to get the real picture.

Today (Wednesday) I visited the Chinese herbal doctor/acupuncturist. He looked at my blood test results as well as taking my pulse and looking at the colour of my tongue. He was not pleased. I also told him about the more frequent headaches I have been suffering lately. He gave me a series of exercises to do as often as possible. They are the 'do-it-at-home' acupuncture to stimulate the T-cells (which fight cancer) and boost the immune system.

So, if you see me beating my chest, massaging my ears , rubbing my spleen and liver areas and walking barefoot on rough roads............... please indulge me..... you might even like to join me :). Dr. Chen assures me that if I follow his instructions explicitly, I will have a better result with the next blood test. Certainly hope so.

In the meantime, I'm keeping my mind busy with

1.plans for a weekend of activities in Sydney with friends - which includes conducting a wedding at Lavender Bay...and
2. a week's holiday on Norfolk Island in August - with the same very special friends whose support and love have kept me going for the past 5 years - along with lots of family and friends, both near and far.

My son, Tim, is off tomorrow for a 2 week holiday in Thailand. My daughter, Nikki, is preparing herself for climbing Mt. Kilimanjaro in September. And my grandson, Zeke, has just earned his very first colour belt in Karate. We are all so proud of him and he is bursting with pride.

Today is 1 June. I'm so glad that the coldest May in 40 years is behind us.

Oops. It's been a while :)

Almost 2 weeks! And it's been a busy 2 weeks.

But back to the chemo, briefly. As well as the infusion every 3 weeks, I also take oral chemotherapy every morning and night. The combination is Folfox (infusion) and Xeloda (tablets). So there's not even a week OFF on this regime.

My busy 2 weeks, started when I drove to Rydal (daffodils in spring) on Monday afternoon to stay with my friend, Anne, for a couple of nights. As with anywhere over the range, the seasons are very pronounced. The autumn colours were magnificent, daffodils were being planted, there was frost on the ground in the morning - but the days were sunny and warm.We had a lovely time catching up with all our news. It was amazing to hear about Anne's trip to Scotland to visit the Outer Hebrides Islands. She flew off yesterday for 5 weeks.

From Rydal I drove to Ryde to visit my Chinese herbal doctor who asked me how I was feeling - of course. When I told him what my complaints were - particularly the pain in my lower gut from the Xeloda, he gave me the appropriate acupuncture needles and the pain disappeared - and it hasn't returned since. It feels sooooo good.

The next day I flew to the Gold Coast to spend time with my son, Tim, and his son, Oscar. We had fun reading stories, kicking balls, riding scooters, going to the coffee shop for his vegemite scroll and my green tea and just generally hanging out :)


Oscar in bed waiting for a story from Mumma Tez XX


Oscar with his swimming teacher, practicing 'big arms'

I also attended one day at the POWERtalk Australia annual conference. It was wonderful to see so many long time friends again and to enjoy the professional presentations that were on offer. My congratulations to the conference committee for providing such a valuable learning, networking, speaking, fun experience.

It was beautifully warm on the Gold Coast, so I didn't need to use the gorgeous possum wool gloves that my friend, Judi, delivered from New Zealand. Thanks JJ :). And I didn't have pins and needles in my hands once.

But I'm certainly wearing them now that I'm back in Wollongong. It's really quite cold - well - 17'C - that's cold for here.

Yesterday I had yet another blood test and will see the oncologist on Tuesday for the results. I'm not sure if there is likely to be any measurable change in the readings after only 2 weeks on this new chemo. We'll see.

Last night I attended a brilliant concert. The Australian Chamber Orchestra is touring and comes to Wollongong for one concert each tour. Touring with them is 'the dancing clarinetist' Martin Frost. If you click on his name, you will be taken to his website. It says "Martin Frost has to be heard to be believed". I agree, but he also must be seen to be believed. It was magical :)

Friday 27 May @ 7pm

Pics of last weekend and new chemo

I want to share this website with you. There are webcams out in the national parks in South Africa, strategically placed by the water holes so that the animals can be viewed when they come to drink. Early morning and dusk (South African time) are the best times to see the animals come to drink. Take a look and enjoy. SA time is 8 hours behind Sydney.

The following few pics were taken last weekend when I went to Cowra with Tim and Debs to stay with her parents at their property.


The farmer and his stock


Boys working on the fences



Mother's Day breakfast in the sun. Terrie, Ross, June and Tim. Debs took the photo.



Koi in the pond at the Japanese Gardens in Cowra


The pond at the Japanese Gardens



Overlooking the Japanese Gardens

It was a wonderful way to start the week. I was a back seat passenger with a pillow for the 4 and 1/2 hour journey. Tim's flight was cancelled and he had to wait 4 hours for another flight so we arrived very late.

It was a beaut couple of days.

So....... I started the new chemo regime on Friday. No pump this time, just an infusion for 2 and 1/2 hours. Happy environment with lots of chat among the patients and the nursing staff. I finished knitting a pair of socks and talked to a couple who do a lot of caravaning. Very productive morning.

Then off to lunch with some special friends and home to rest for the rest of the afternoon and evening.

Side effects of this chemo - sharp tingling in hands when cold. And, of course, IT'S BLOODY COLD RIGHT NOW!!!! My hands started to tingle as I left the chemo clinic - cold door handle, cold wind. So I hurried home and dug out my gloves. I wear a white cotton pair when I'm the house and a respectable grey woollen pair when I step outside. You just don't realise how often you touch the cold fridge door, as you open and close, and fridge contents :), turn on the cold water tap in the kitchen and the bathroom! So... all the ingredients from the freezer and fridge that I will need for dinner tonight are out on the kitchen bench all day today so that they won't be too cold when I peel and chop without gloves.

One of my friends, who is coming to the Gold Coast next week, is bringing me a pair of possum wool gloves. Possums are pests in NZ as they are not native to the country, so they make lots of garments from their wool. It is beautifully soft and warm.

I'll be on the Gold Coast next weekend, in fact I'm going for 6 days, to stay with Tim and Oscar and to attend the National Conference of POWERtalk International - on Friday and Saturday. I'm looking forward to catching up with lots of very special, long term friends.

Right now it's 2pm on Saturday 14 May and I've been gallivanting all morning. Time to stop and rest.