Follow up

Sorry, I missed writing about when we went home for a couple of weeks and how well Alan did cutting the front paddock on the ride-on even though he's not supposed to drive even that!!

Anyway we have been back in Sydney for the past 2 weeks for the "follow up".  Not quite the results we were hoping for but not too bad either.  There are a couple of "white spots" which have appeared outside of the removed tumour area, it could be the effects of the radiation treatment or possibly another tumour.  They say it is too early to tell so we have to come back at the end of November for another MRI - hopefully this one will show that it's only scarring.

We have an appointment in Lismore next week with the local oncologist who will be giving Alan his next lot of chemotherapy and monitoring his progress but here we are playing the waiting game again.

I'm trying to persuade him to go to UK and Europe for Xmas but he's not getting very enthusiastic over the idea.  Still.......I'll keep going and maybe I'll find something he'd like to do (it takes a while for him to get his head around things).  Tasmania, Norfolk Island, Tahiti, Vietnam.............the possibilities are endless. Heres hoping.

We've been on the water again today - ferry to Darling Harbour for lunch, light rail to Central, then train to Milsons Point - it sure is great not having to use a car!!!!!

When we get home I'll post some photographs - once again sorry for not being so slack on the updates and thanks again for caring.

What will be - will be!

This is a difficult post for me - we made the decision to put the house on the market.  Who knows if it sells or how long it will take but we know we will not be able to manage it on our own.  We also know that we wouldn't be on our own as we have such a great community here, our friends and neighbours have already offered their assistance and would do it willingly............but it's not the same. It's not so much the physical aspect but rather the frustration of not being able to see properly.  Don't get me wrong, he is adapting well and we know there are people who cope very well with vision problems.  We just have to find him other things to do and enjoy.

Alan and my brother, Tommy, doing what they love!

One of the reasons we love it here.

The end result (sorry, photos are in wrong order but I don't really know what I'm doing!)

On a more positive note, Alan continues to do well - a lot more tired than before but nonetheless coping well.  He is losing the extra weight put on while he was taking steroids and is almost back to normal.  It takes a lot out of him just to have visitors, the mental strain of showing how "good" he feels. We are not too concerned, as we've been told more than once, that this would happen.  I still make him take a walk each day, not to have a coffee in a boutique cafe though, but to the mail box and back up the hill!  If you've ever walked up our hill, you'll know how hard that is!! We walked over to the dam paddock yesterday and disturbed a pair of ducks with their family of tiny ducklings racing between the water lilies.

We leave on Saturday for another 2 weeks in Sydney and a review with the oncologists which we hope will give us good news regarding his progress. I'll keep you posted.

Home again!

Sorry to take so long to update the blog, I know some people are depending on it for updates.

We flew home on Sunday after about 8 weeks away (to tell you the truth, we are not quite sure where "home" is anymore).  Well, we've been back for 2 days and it's all a bit overwhelming.  We love this place, have put our heart and soul into making it our own, and have such a great community but maybe the time has come to move on.

Alan is still doing so well, more tired than before, but we were told to expect that.  He functions really normally although it takes much longer to do ordinary things than it used to.  That's the trouble when you've always been used to being a go-getter, it makes it very difficult and frustrating to slow down.  

We have a month off the treatment so, like any drug taking, your body needs to adjust when you take the drug away, hence the tiredness.  This will be followed by 6 months of double strength chemo before we can see if the damned tumour has been eradicated.  The next MRI at the end of this month will give us a small clue as to how it's going so far, fingers crossed. It's a very anxious time.

Little things are proving very difficult at the moment but we are staying positive and looking forward to a new stage in our lives.  

Amazing Sydney Harbour

Wow - this morning Thursday - yet another Carnival liner arriving in Sydney. It came in, and went out!  It was so windy that it couldn't quite dock and had to re-enter with 2 tugs! It's quite a sight to see them but Jill says it gets boring after a while!

I guess Alan wouldn't know at this stage, lol. He had walked for an hour to get home from the hospital and was just tuckered out!  We'll be going home soon, so I'll have to find somewhere to keep up the good work.  You'd think we'd be able to exercise easily on 25 acres but it's quite hilly so I need to take him somewhere flat. It's important to keep the leg muscles strengthened as the radiation and drugs make them soft.

Weekend in Penriith

What an amazing weekend.  If it wasn't for visiting the hospital each day, the pill taking and the hair loss,(mainly at the back) it would be easy to imagine we were on an extended holiday.

We continue to be overwhelmed by our families, constant caring, support and generosity. Friday night with Jill and Alistair was such good fun - we cooked pizzas in their little balcony weber - apart from the fact that we were overlooking the Opera House, it was just like being at home. Jill had just got back from a week working in Townsville and Alan is "sick" so Alistair and I made and cooked the pizzas for them, while continually topping up their wine glasses. We even managed to do the banana and chocolate one for Jill.

Saturday morning we set off for the railway station with an overnight bag in tow (we are certainly getting some use out of our pensioner excursion tickets!) off to our grandson, Daniel's place for the night.  I promised to cook his favourite sea-food egg roll for dinner and preceded it with some home made crab cakes - both went down very well. The freezer was stocked with almost every flavour of Ben & Jerrys ice cream so Alan was set up for the night!

Next morning we were picked up by Helen, who then also picked up David and Jenny and drove us to a family run Cucina for a long lunch.  It was amazing.  We loved the food and the atmosphere and as a bonus got to see some of our friends who had also booked in for lunch without knowing that we had!

I have to tell you about the food!  We started with a Rosemary bread freshly cooked in the wood fired oven with a plate of olives, chargrilled sweet potato and battered prawns. Closely followed by a fennel gratin which I loved.  Main course was Oslo bucco served with mashed potatoes and fresh veggies from their extensive garden. Dessert was a buckwheat pancake served with the lightest chocolate mousse, blood orange and rhubarb - delicious. David had brought the wine which was perfectly matched and much enjoyed.  OMG - it's in their home, they change the menu every month and I want to go there 12 times a year!!!  They will certainly get a good review from me on Trip Advisor.

Holly picked us up and dropped us at the station for a leisurely train ride back to Kirribilli and the end of another perfect weekend.  Thanks to everyone - again! xxxxxx

The big, the bald, and the breakfast!

Well, that was the weekend and we've had a really busy week since then.  We went to Penrith to do a bit of gardening and house cleaning for Daniel (as you can see we are having withdrawal symptoms). Friday night we caught up with our friends, for, guess what, another meal, Thai this time. Then out with Daniel and Ashley on Saturday night for a steak and blooming onion. Out again for breakfast, then Jill and Alistair picked us up for a whistle stop tour of a Cruise Expo. (We are contemplating a river cruise somewhere) and back to Kirribilli for fish and chips.  If food and a good sense of humour get you through radiation and chemo, then we are streets ahead of anyone else!

We had our weekly appointment with our radiology specialist on Tuesday - she was very happy with Alan, who still looks a picture of health, hair is still dropping out, but he can't wait until the last week to wear his hat with the pony tail!  Don't know what they'll think of that!  We saw the chemo specialist today, who again was extremely happy with the way things are going and explained what would happen when we eventually make it home.  Apparently, we get a month off, then continue double dose chemo for 5 days per month for the next 6 months. They are expecting Alan to "crash" when radiation finishes so we are undecided on when to come home at the moment.........will have to ponder on that one and see how he is. 

Tomorrow we meet up with some other friends, Peter and Rita, for, guess what, lunch! Alan will try to write another blog in the next couple days, in between meals! Seriously, we have been walking for miles to counteract the food!

My first attempt!

Hi everyone! Welcome to our gastronomic journey recovering from a brain tumour.

I would like to start this blog by thanking you all for your support, good wishes, and most of all for caring.

I am truly blessed with a magnificent support team ably led by my wonderful partner in life, Helen, and extremely well assisted by my 2 very special children, Jill and David , not forgetting, of course, Alistair and Jenny. It's hard to find the right words - thank you seems so inadequate, but..... thank you so much, I love you more than life itself!

Anyway, down to this blog business.  Helen and David have done a great job thus far in getting the blog on the road and I look forward to posting a few chapters of my own, starting today.

One of the main things I have gleaned so far is the need for patience............there's a lot of waiting goes on during this journey and I am having to learn to be patient! There are also a lot of caring people around, not only in our circle of family and friends, but in our medical system - clinics, hospitals, radiation facilities etc...........and also in our community. Volunteer drivers pick us up every day for a nominal charge to take us to the hospital, they are always cheerful and very helpful. 

Will take a break now and hopefully will post more tomorrow - cheers, Alan.