On our way to who knows where!

I'm amazed that we are on our way to Sydney - we couldn't have done it without some amazing friends and neighbours.  The thing we will miss most about Commissioners Creek, is not the house ( although we love it) is the community spirit that we have to leave behind. The friends who were there at a moments notice, the fresh veggies and eggs left on the verandah at 6am in the morning, the people who ring us everyday to make sure we are OK - it just goes on and on. We will miss you all.

We eventually reached Macksville after leaving home 2 and a half hours after the time we'd planned! Booked into our motel and went out for a much needed Chinese meal.  Alas it was not to be - the Saturday before Xmas - no way - no booking - ha ha - we ended up with a takeaway pizza delivered to the room so hot we almost couldn't eat it (I managed after 2 bottles of wine!). Alan had 1 piece and promptly got into bed, poor thing, he was looking forward to a Chinese omelette), maybe tomorrow night.

He did amazingly well today, considering he had to get used to letting me drive, luckily there was not much traffic about so hopefully we'll have the same tomorrow.

He has "Chemo Brain" at the moment - very vague - at least it is short term (I hope!) and I'll get back my beautiful man.  Having said that, he managed to navigate here without any problem.  It has been very stressful the last few weeks so we were glad to escape today.

I have struggled holding back tears today and will be in touch with all our friends individually in the next few days.

Meanwhile, we wish everyone a very merry Xmas and a happy and healthy new year - enjoy, wherever you are and spread lots of love to all the people around you - validate your love to everyone who means something to you.

Alan and Helen xox

"

Mixed feelings!

Well.......we did it, much earlier than expected!  The house sold to the first people who saw it! We'd like to think that they felt the love we've put into it and the happiness we've felt here.

Now it's all systems go as we make ready to move out before Xmas. Luckily, we have some amazing friends who are rallying round to give a hand.  Russell, John and Pete finished lining out the extension - they've done an amazing job.  It would have been nice to see it painted and finished completely, but the purchasers have kindly let us off with doing anymore.  It still looks fantastic.

We are starting to detach ourselves as we go through the inevitable rubbish and stuff that we've managed to accumulate over the years.  This will be our biggest clear out yet! The new owners are buying some of our furniture and shed stuff so I keep telling myself it's not as bad as it seems. Paul has been great, helping Alan to load trailers and taking him to the tip as,of course, he is not able to drive. It has helped enormously, as I couldn't reverse a trailer to save my life!! And it's freed me up to do the more domestic things like wrapping ornaments!

Nikki, Colleen and Brian gave us a full day yesterday and we almost got the shed into some semblance of order. Alan starts his next lot of chemo this morning so we are having a day off but they will be back tomorrow to continue.  We are so grateful. I knew all those pizza days and dinners would pay off!!

Everything is falling into place and we look forward to spending Xmas and New Year with our family before going on to a new chapter in our lives, God willing.

The main thing is that Alan is still doing well so we hope it continues to be so.

Love to all who read this blog.

Relief!

Here we are again back in Sydney for yet another MRI.  This time we were full of trepidation. On Tuesday morning, the day we were flying down, Alan woke at around 4.30am and suffered a bad dizzy spell. Naturally, we thought the worst and were seriously thinking we wouldn't even make it to Sydney but would end up in Tweed hospital!

We were staying with friends at Kingscliff who had volunteered to drive us to the airport.  Fortunately, after a long rest and a call to our oncologist in Sydney, we decided to continue on our journey after taking a couple of steroids.

Since then we have had no other incidents. Today the MRI and our specialist visit this afternoon.  The MRI showed that the White spots hadn't really changed since last month, in fact one of them looked slightly smaller so still looking like radiation scarring. They won't actually say for definite that it's not another tumour but we are as happy as we can be to remain positive.  What a relief.  We both were so worried without saying anything to each other.  Tonight we are celebrating, albeit in a small way - scrambled eggs on toast and a bottle of sparkling Villa Maria (Alan's choice!) gotta love the man - he knows what he likes!

For those of you who saw the Facebook photos, look at this one above, he is so much better and looks great.

Meanwhile, our great friends at home have been working on our dining room extension, for which we are eternally grateful. Without them we would not have been able to even contemplate putting the house on the market.  We have had a second inspection and are hoping, all going well, that things will progress positively.

We are looking forward to meeting our new great grand daughter, Amelia, at the weekend, before returning home on Monday.  Once again, thank you all for reading and caring, we really appreciate your support.

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.

At Lowes!,,

It started on Friday night with a trip to Penrith, catching up with our good friends, Mike, Pam, Bev and Bruce for coffee. On to Warrimoo and David's place where we were catching up with another 2 of our grandchildren for dinner, James and Holly.  We had dinner at one of our old favourite Chinese places, Eric's. Then home for an early night ready for an early start.

Here we are again! Had a great weekend with David and Jenny at Mudgee - a surprise for Father's Day.  We started at Di Lusso Winery, tasting a few to choose a bottle to have with lunch of course, then on to Lowes for a bigger tasting, a tasting plate (above) and to choose a few bottles for dinner!

We stayed at Peter van Gynt cottages which was about a 5 minute drive from our dinner destination, Deebs.  A great little place aside their home, no menu, just what he fancied cooking on the night, wonderful.  We had a little middle eastern appetiser, followed by deliciously cooked okra with tomatoes and pearl couscous, an amazing chicken Ballantine and the best baklava I have ever tasted - unbelievable.  

Returned on the Sunday morning stopping at the Carrington in Katoomba for a quick coffee and another photo (below). Alan looks great as you can see - I think it's all the food and drink - our favourite pastime at the moment!

Sorry, not a very good photograph because of the light behind him but I thought it might amuse you all.

We ended the weekend with Jill and Alistair and our favourite fish and chips from the local shop at Milsons Point. Exhausted but very happy!...................to be continued by Alan.

  

Windy Wednesday

Another bit of good news day - he's off the steroids! Still feeling amazingly well except for a bit of fatigue in the early afternoon.  No matter, he can sleep if he wants to.

We had another big day out - certainly taking advantage of the cheap Public Transport here - we caught a train to Penrith and I had my hair done.  It was looking pretty desperate so I was so glad when Jill's hairdresser said she'd do it for me!  I also went to the doctors as my blood pressure, which is always perfectly normal, suddenly jumped to 180/111.  Anyway, I thought I'd better check it out even though I thought it was probably just a bit of stress lol.  He sent me for some blood/urine tests and I'm to go back on Monday.  But.......I took my blood pressure this morning and it was back to normal so probably a false alarm.  Just as well as I didn't want Jill to have 2 invalids in the house!

We've had a normal day today, hospital and then home.  We were going to take a ferry or the train to Darling Harbour for lunch, but the weather is very wintery so we decided to come straight home.  My turn to cook dinner so we are having Irish Stew and Colcannon, followed by caramelised strawberry crepes with cream and ice cream.  Yum.

Jill and Alistair have a break from us this weekend as we are going up the mountain to David and Jenny for Fathers Day weekend.  More news about that tomorrow.  If we had been home, it probably would have been Crams Farm with friends and neighbours so, if you are reading this blog, we hope you all have a wonderful time whatever you are doing.  We miss you all.  

The weekend

You better not sit here too long - my wife will be back in a minute!

We had another great weekend! Saturday was a grey day but it was a shopping and cooking day anyway so it didn't bother us.  Daniel, our grandson, came over for dinner - his requests were French hot dogs, seafood egg rolls and bread and butter pudding with ice cream! A strange mixture but we really enjoyed it. Alan made the bread and butter pudding! I have competition in the kitchen now, just have to measure out the ingredients for him otherwise I don't know what things would taste like or whether they'll reach the bowl!

Sunday was a beautiful day, we were meeting David and Jenny for lunch so we said we'd catch a ferry over to Circular Quay. We were early so went round twice and had our own Harbour Cruise for $2.50!

We had a lovely lunch at a French restaurant in the Rocks - the markets were on so that was a little bonus for me.  Then after lunch we went to what used to be one of our favourite Irish pubs when we lived down here before. A pint of Guiness and a band playing Irish music, what more could you ask for? A great time was had by all. (See photo and Alan's caption)

As you can see, he's still doing well - no hair loss yet and the steroids have been reduced again. Still eating very well and not experiencing any nausea as yet.  We hope this continues for a while or even longer.

Monday was back to our normal routine for radiation - there are lots of people we see every day so it's quite chatty in the waiting room.  Everyone is so positive.  We had a lovely walk home in the sunshine for the first time, it's been raining every other time!  Got back to Jill's, did her ironing and cleaned the windows (have to earn our keep somehow, lol) then made garlic pizzas for a nibble before dinner.

POETS day!

Well it's Friday afternoon and we have a glass of wine in hand and are watching a cruise ship getting ready to leave the harbour full of excited people either on, or just starting out on their holiday. It wasn't a great day for them in Sydney, grey, windy and overcast, nevertheless it is a great city.

Another week of radiation over and Alan still has his hair so far - in fact longer than he ever usually wears it!  He's still doing very well, starting to get a little more tired in the afternoons but still managing to walk home from the hospital which takes about 40 minutes.

He made some scones today! I think we'll be role changing when we get home - I'll be doing the DIY and grass cutting and Alan will be in the kitchen although Vision Australia gave him a few tips on how he could find his tools (lol) they didn't say he'd be able to use them though!  I might need some lessons on the chain saw Karen!

I saw Stella's post on Facebook so know that we've had some much needed rain at home and hope that it filled everyone's tanks.

We have another busy weekend planned (are there any others?) so I'll update you when I can. 

Here we are again

I said I'd give you a review on the Thai food - awesome - lamb pancakes! Unbelievable! It was Thai Fusion fused with Indian roti bread, I think. Delish! 

Today was a long day with a visit to Vision Australia before the radiation.  We had a 2 hour session and believe it or not, turns out Alan could read with 20/20 vision on the charts. But.........come to actually reading a newspaper or the iPad not so good.  Also, no vision at all on the left hand side.  They are coming to visit and have some aids to help him with the computer, iPad, iPhone etc.  and a folding white stick mainly for other people who may be crossing on the left side, lol.

Other than that, we saw the radiation specialist today, who is very happy with the way things are going so far. His blood platelets are good and they've reduced the steroids again.  We had a couple of big walks today, fortunately the weather was kind to us apart from this morning when it was pouring down.  No matter, we were dry and warm because our son in law gave us a lift to our appointment! We are very blessed to have such a great support team down here.

I haven't posted any photographs in a while but promise to do one tomorrow - maybe of the two of us! Even though I hate my photograph taken. Alan says I should do a selfie of us both - can you really do that? Hope I'm not boring you all with my ramblings, but for all who are following, thank you.

Week 2

Sorry I haven't blogged for a couple of days but I had a bit of a meltdown when I was writing - it's all good though - I suppose it will happen from time to time.  We found rather a lot of fluid on Alan's head on Monday  after radiation and I freaked out a bit.  Anyway, I dragged him back down to ask the nurse about it, 2 nurses and a Doctor later, they said they didn't think it was anything to worry about! We see his oncology specialist tomorrow so I will ask her to explain properly what's happening and why.

It's a bit of a change to blog a bit of negativity as has doing so well. Sometimes I think the blog is more like Julie & Julia as it's been mostly about food!

Since the reduction in the steroid dose, he has stopped craving so much chocolate and lollies but still has a healthy appetite and is really enjoying his food (not so much of a surprise, of course).

We are still managing to walk every day and as soon as the rain clears up are planning longer and more difficult walks to keep up the muscle tone and leg strength.  We made apple crumble the other day - crumble topping courtesy of Alan!!!  I'll make a cook of him yet - he wants to try bread next - lol.

Tonight we are going out for Thai food so I'll give you a review tomorrow!

Tuckered out!

Another busy day with lots of walking.  Helen and Scott brought Mia (our great grandaughter) over to see us and take us to the "Secret Garden" and then for lunch.  Alan manged to get to the garden without too much effort until we were faced with about 45 steps!  Luckily, at the top, there were a couple of seats which were immediately sat on lol.  Mia had brought a friend with her so they were running around as girls do and of course I had to go with them - it was exhausting!  Nevertheless, I somehow managed but am now feeling a little weary.

I think I said on Friday that we were looking forward to a weekend of rest - ha,ha.  Somehow I don't think we know the meaning of the word.  It's another beautiful day in Sydney so how can we be couch potatoes (Alan only looks like one in the photo!)

I'm managing to get a little bit of cooking done in between eating out - thank goodness as I'm getting withdrawal symptoms.  Fish cakes and mushy peas on the menu tonight, followed by apple crumble and ice cream - have to go now, Alan's hungry!!!!

Weekend Off!

We are having our first weekend off from radiation treatment and this is what we woke up to this morning - amazing!

The weather changed and we decided to take a ferry to Balmain heading to the Cat and Fiddle Pub only to find that the kitchen was being renovated and they had a very limited menu!  No matter, we'd had to walk so far to get there and it had started to rain so we decided to stay and hope for the best (there was no way Alan was going anywhere without refuelling!). 150 Lashes and a Porky Pie kept him insanely happy and able to attempt the long walk back to the ferry.  We had a short interlude at the frozen yoghurt shop and a rest while Jill and Alistair picked up the Macarons from Zumbos!

We took the ferry, going the long way on our own Harbour Cruise, needless to say the Macarons didn't make it across the water, eaten with relish on our way home!

Another day of our journey - sounds like more of a holiday than what we are really going through, but we need to make the most of it.  Alan is going extremely well, gets tired easily, but keeps going.  I am so proud of him. We'll have another fun filled day to report tomorrow.

Day 3

It was a beautiful day in Sydney today and the first day we didn't get wet going for treatment! Anyway when you've got the big C who cares about a bit of water!

We saw a professor today who seems happy with the progress, although it's early days. He is going so well that she said he could half the steroid dose - could mean that he won't have such a craving for sweet things and I won't have to slap his hand so much as he reaches for the lolly jar! Lol

We had another big day heading off to Macquarie Shopping Centre to buy a pair of walking shoes - all this walking needs more supportive footwear and he's used to wearing work boots most of the time.  Got them straight away in the first shop, thank goodness.  Then on to woollies to pick up (of all things) dried peas and lentils to make mushy peas and pease pudding! Just popped up out of left field!

Back on the train and the walk to Kirribilli (how come I'm not losing any weight?), a quick shandy on the verandah before lunch, then the long anticipated wait for Friday night fish and chips. Yum (maybe why I'm not losing the weight!)

We have a two day break from Radiation but keep up the Chemo tablets over the weekend so we are looking forward to a bit of a rest.

Day 2 of treatment

Second day and a bit exhausting! Could have been because we stopped off at North Sydney to visit Hungry Jacks for onion rings - it's worse than being pregnant!

However, starting from next week, community transport are kindly going to pick us up each day.  We will continue to walk home to keep up the much needed exercise mainly to keep Alan's legs strong as one of the drugs causes the thigh muscles to weaken, but also to counteract all the cups of coffee we seem to be stopping for on the excuse of a rest!

Another bit of good news is that Vision Australia have fast tracked our appointment for assessment so we will be able to learn about the aids available to assist with reading and the computer.  When they spoke to Alan on the phone they asked if he could make a cup of tea, he replied yes.  They then asked  if he over filled the cup, he replied yes I must have put in too much milk!

We had an early Fathers Day treat last night with a trip to China Republic with Jill and Alistair for Peking Duck and have another one to look forward to with David and Jenny - can't wait for that one as David is working on perfecting sour dough bread and grilled scampi in his Pizza oven - watch this space.

Our grandchildren are spoiling us rotten with gifts of lollies for Alan and wine for me both gratefully received.  Thank you.

We are overwhelmed with everyone's good wishes and thank you again for caring.

Treatment starts

Well here we are at the end of the first day of the rest of our lives - treatment has started.  Chemo tablet early this morning followed by radiation. Tolerated extremely well as you can see.  Hopefully it will continue in this positive way.

We had a 10 minute walk to the station, hopped on a train for a couple of stops, then a 15 minute walk to the hospital - it's a good plan to keep up fitness levels and strength and we will keep doing it for as long as we can.

We caught up with our good friends, Mike and Pam yesterday.  Had lunch at the Kirribilli Club and are looking forward to many more outings with more of our friends.

I spoke with Vision Australia today and have an appointment in a couple of weeks to discuss various aids to help Alan with reading and his beloved computer - the main things that are frustrating at the moment.  They are confident that they will be able to help.

Back in Sydney

To all our followers an apology for not posting anything for the last few days. we didn't really have anything to report until today when we had our appointment with the medical oncologist.  He was very nice and went through the regime we will face starting on Wednesday 20th.  6 weeks of both Radiation and Chemotherapy together - radiation 5 days and the chemo, which is in tablet form, every day.  

A multitude of other pills for nausea, constipation, antibiotics etc. etc. have to be taken - he'll be rattling!  The good new is that although the steroids have heightened his appetite for lollies and sweet things, he hasn't actually put on any weight (yet) probably because of all the walking we are doing.  We will continue to do this everyday as long as he is able.

Ålan is in good spirits but gets frustrated at times because of the loss of vision, however, we will be working with Vision Australia to make sure we explore every avenue to try and improve whatever sight he has.

Meanwhile, we are still enjoying the city life and the plethora of restaurants it has to offer. (As most of our friends know, we really enjoy good food and wine).  We have always tried to do a lot of things together over the years - golfing, fishing, decorating and walking and now he is starting to take an interest in the actual cooking of food and not just the eating so will continue to do things together, they'll just be different!  Hope I can cope with him in the kitchen!!  Jill says she'll buy him some talking scales for Fathers Day (lol)

Once again, thank you for caring. Love from us both. X

Hi from Doon Doon!

Well - here we are back home for a few days. Alan made it through the flight with flying colours and lots of help from jelly snakes!

We had a great time in Kirribilli with Jill and Alistair and are looking forward albeit, with a bit of trepidation, to going back there.  It was good fun to be "citified" although we ate far too much and drank copious amounts of excellent coffee.  We will have to keep the exercise up so it's a thermos to Crams Farm and a walk around the circuit before we can drink it.

We have lots to do and little time to get through it, so if we don't get round to seeing all our friends, please don't be offended.  We are very grateful for your thoughts but as you will appreciate, Alan gets quite tired and can only tolerate short visits.

I'll try to update the blog in between jobs!  Thank you for following our progress.

Much love, Helen

Oncology

Today we went for a mask fitting!  A bit ironic as we have loads of masks and wigs at home! As all our friends know.

Alan needs to keep his head perfectly still while having radiation so has to wear a mask - he felt a bit of discomfort but said it wasn't too bad.

We fly home tomorrow for a few days, just to pick up a few more clothes and sort a few things out, then back to Sydney for the treatment.  He is still in good spirits and eating like a horse (could be something to do with the steroids!) We've had a really good week here since he came out of hospital - hard to believe he's only been out for 1 week today.  Hope to catch up with a few people in the next few days - will keep you posted.

Radio Oncologist Appointment Update

Helen says..

"More waiting! We had our visit with the radiation oncologist and radiation treatment will start in about two weeks. We are waiting to have another scan and an appointment with the chemo specialist hopefully early next week.

All being well, we shall be home for about one week after that, then back to Sydney for the treatment which lasts six weeks. We can then come home and will continue to have chemotherapy at John Flynn.

Alan is in good spirits and keeping up his fitness level by walking every day, has the odd glass of wine and loads of lollies!"

Recovery..Day 5

Helen says.. "What a great day it turned out to be today. The doctor said Alan was so fit that he could go home tomorrow (Monday). All that walking up and down to the shed must have been good for him! Can't believe its only one week today since we arrived in Sydney, although its seems like an eternity.

To all our friends who are following the blog we send a big thank you for caring so much. In the next couple of days we hope he will have a big rest - hospitals are not the best places for sleeping. Then we wait once again for this coming Thursday for our visit with the oncologist and the next step.

Watch this space and bless you all. x"

Recovery..Day 3 & 4

My apologies for not posting for a few days, and thanks to Anne Coveney for reminding me the importance of these updates to those afar. Alan has visibly improved over the last few days. He is semi-mobile and can walk around with assistance. His energy levels peak and trough throughout the day, and he can seem a little vague at times. When you consider it was only four days ago he was receiving major brain surgery, these symptoms seem insignificant. Helen continues her undaunted bedside vigil (until the nursing staff kick her out).

It looks like Alan could be leaving hospital on Tuesday, which is great news. Alan and Helen will be staying in Sydney for possibly another week. Alan has an appointment with his Oncologist on Thursday.

Can you help?

In a few weeks Alan needs to start a course of radiotherapy that will see him visit the hospital five days a week for six weeks! We are looking for house sitting or house swapping opportunities to make this process as easy as possible on Alan and Helen.

Ideally, we are looking for accommodation with easy access to the T1 North shore, Northern and Western Line. Their destination is the Macquarie University train station, so anywhere within a reasonable amount of stops from there would be perfect.

For potential swappers, Alan & Helen live on a small hobby farm in Northern NSW in a beautiful area. Easy driving distance from Byron Bay, Nimbin and the Gold Coast. We are happy to forward photos on request.

If you know anybody who may be interested in swapping, or anybody who needs their house sitting from roughly the middle of August to the end of September, then please contact David (0417479100) or Jill (0478494349).

If you're reading this post via Facebook, perhaps you could re-share this post to your wider group of friends to help with the search.

Recovery..Day 2

Alan hasn't been great since he left ICU. He is irritated by headaches and lack of sleep. He did manage to have a sleep at lunchtime and with some assistance, have a much needed shower and shave!

Out of ICU

Alan is out of the ICU and has been moved to the general ward 3 room 38.

Recovery..Day 1

It was good to see Alan almost back to his normal self this morning. Still a little groggy, but in good spirits and almost no memory of his comical behaviour the previous day. Alan is very impressed with the quality of care and professional staff at the hospital.

Good News

Alan is out of theatre and the five hour operation went well. The doctor was pleased with the procedure and was confident they had removed all of the visible tumour. He commented that, to the naked eye, their suspicions of the tumour type were validated, but we need to wait for the biopsy result in five working days. Alan will have another MRI scan this week which will form the basis of the radiotherapy strategy.

We were allowed to see Alan after another torturous thirty minutes. He was awake but drowsy and in very high spirits making embarrassing jokes to the nurse. He asked if he still had his accent! He is likely to stay in ICU tomorrow - I will advise when he returns to the general ward.

Thanks for everyone's support and good wishes. A battle won. A step forward.

No news yet

Still waiting, will post as soon as we hear something.

Seconds away..Round 1..

Alan's about to have some pre-op scans - the surgeons capture a 3D model of the brain to assist them during the surgery.

Operation scheduled for 8:30am. Will post another update on the other side. Go Alan!!

Second Diagnosis

This morning we visited Doctor Andrew S. Davidson a neurosurgeon based in the Macquarie University Hospital.

Incidentally, this is the same neurosurgeon who removed a brain tumour from Alan's grandson Michael Connell last year.

Dr. Davidson explained that Alan is likely to have primary glioma tumour. They can't confirm the tumour type until they have studied a biopsy, but, the tumour has already damaged Alan's vision and needs to be removed.

The neurosurgeons will attempt to remove as much of the tumour mass as possible. They cannot remove the tumour completely as the cells at the end of the tumour are indistinguishable from normal brain cells.

Alan will be admitted to hospital this evening with his operation to start at 8:00am Tuesday morning. We understand the operation can take up to five hours. After this, Alan will be admitted to intensive care (normally a day, maybe two), then moved to the general ward. It is likely that Alan will be in hospital for up to a week.

I understand that intensive care visiting is for immediate family only. The general visiting hours on the wards are between 11am and 8pm, though some wards encourage patients to rest between 1pm and 2pm. If in doubt about visiting arrangements, please contact the hospital on 02 9812 3000.

Once Alan's scarring has healed, he will commence a combined treatment of chemotherapy and radiotherapy. The chemotherapy in the form a tablet, the radiotherapy will involve 6 weeks of daily visits to the hospital for a fifteen minute dose!

Thats about all we know for now. Watch this space for daily posts on Alan's progress.

First Diagnosis

Over the last few months Alan has been experiencing some problems with his eyes. He initially attributed this to cataracts.

His first doctor was initially dismissive, and suggested Alan maybe depressed! The combination of a second opinion and the insistence that something was wrong from Helen resulted in a referral to a neurosurgeon at the Gold Coast.

It was here where Alan was first told he had a brain tumour.

Alan's daughter, Jill, convinced them to return to Sydney for treatment and allow themselves to be surrounded with support from family and friends.