14th July to 31st July 2013

14^th July 2013

We had a rainy night and now another drizzly day with a breeze so Barry and Foxy haven’t gone on the usual 40 minute morning walk and are hopeful that the weather will clear enough to let them do the shorter circuit with Merry.  Meanwhile, Merry will play with her new toy and attempt to transfer her books, and audible books to it, whilst Barry continues to watch the test match even though one excuse for an umpire has already ensured England’s victory.  Apparently the English can’t be caught out if the ball nearly knocks the bat out of their hands.

22^nd July 2013

Due to weather conditions we have done little other than necessary shopping with Barry and Foxy having a few walks with Steve and Badger.   The pathetic cricketing display by Australia hasn’t helped cheer us up.  There appeared to be sufficient ex-Aussie cricketers in the audience that played in previous Ashes test matches to form a better team than we now have.  Even when Ponting’s team lost the Ashes they put up a better display.  Having mentioned the Ashes, we are currently only about a 30 minute drive from the birthplace of the Ashes ‘Sunbury’ where the stately mansion still stands but is now part of a school with school kids playing on the original pitch.  Perhaps our current team should return and practise with them to find out how to do it.  We can’t imagine why they dragged the English team all the way out to Sunbury to play cricket rather than play in Melbourne, and are amazed that the weather allowed it to happen, unless it was a very short game.  We can’t get enough dry weather on any single day to get our washing dry, but this is our typical Victorian winter.  If they played in the summer they may have gained a few hours of sunshine.

23^rd July 2013

 We tried unsuccessfully to have Merry’s prescription for Saline solution filled at the local pharmacy but they offered us an equivalent option at a ridiculous price.  We determined that it would be cheaper to go into Melbourne on the train and get it from the Hospital pharmacy which would also give us a bit of a day out and also let us get a haircut at a better price.  This worked out good for us as we had acquired MYKI cards for train travel on the Metro train to travel to the hospital from Garon and Sue’s place, but with them returning to WA and us moving to Woodend the $50 available on our cards was not going to get used as they where only good as far as Sunbury.  However, last Thursday the MYKI card equipment was activated at Woodend and became usable for travel to Sunbury and Melbourne, or Bendigo in the other direction, which is much cheaper than using our car and has no parking problems.  Merry managed the three flights of stairs to get out of Parliament Station and the 10 minute walk to the Hospital without a problem.  When we returned to the station we passed straight through to Burke Street and used a tram to Elizabeth Street to get the haircuts and lunch in the Galleria shopping centre.  We then used a tram to continue on to Southern Cross Station to get the V-Line Bendigo train back to Woodend.

24^th July 2013

We took Foxy for a slightly longer walk than Merry has been taking to continue building up her fitness.  In the afternoon we went with Steve and Terry to Kyneton but only for shopping and a short drive around the outskirts of the town to see some of the old buildings.

27^th July 2013

The weather hasn’t been good for more walks but has improved marginally today.  We drove to Trentham along with Steve, Terry and Sue for them to visit a rather large nursery for some vegetable plantings, but whilst in the area stopped for lunch.  Lunch was in the quaint old bakery which ahd a nice atmosphere and was tucked away down a laneway but was still very busy.  On the corner of the laneway was a shop that had every size of every item that you wouldn’t want in your home.  It was great for a 10 minute drowse but we can’t imagine anyone buying anything.  After all, who needs a Dalek, a larger than life, moulded plastic, gorilla or any other plastic animal or imitation dynamite complete with electronic timer?  The village itself requires a thorough check out as it had a lot of appeal plus we want to visit the Trentham Falls where we visited some years ago, so we will return when Merry is more able to walk for longer distances and the weather warmed up.  Trentham is higher than Woodend and therefore colder.

28^th July 2013

Merry accompanied Barry, Steve and the dogs on their morning walk but shortened it slightly towards the end by taking a short cut.  It still took nearly an hour which is a really good walk for Merry.  She hasn’t been eating as well as she had for the last 4 to 5 days because she feels permanently full so we are hoping the walking may change that.   We phoned Abby to wish her a happy birthday and to find out how she is recovering from her appendix operation, which is all good.

29^th July 2013

We had a really good short, sharp thunder storm last night and when you are already up in the clouds that are making the noise it get real loud.    Nothing of interest happening other than Barry replacing an add-on reversing light as the previous one chose to give up the ghost.  We have an add-on reversing light as the Nissan Patrol only has one regular one on the left hand side, and that is fairly well covered by the spare wheel on the dual spare wheel carrier so people behind us can’t see that we are reversing unless they are to the left of us.  Now you have to be blind not to notice as the new one is brighter than the previous one that we fitted whilst in Hobart three years ago.

30^th July 2013

The weather has changed to cool but sunny so we packed a lunch and drove through Trentham and on to Daylesford with the intention of checking out Daylesford, and then return to Trentham for a walk around the village, plus visit the falls on the way back.  Daylesford turned out to be much bigger than we expected plus Merry was starting to feel somewhat weary and nauseas, so after a quick look at Daylesford Lake and a drive back through the town we headed home and had our picnic lunch there.  We will try again another day.  We have already been warned by Merry’s specialist that it will probably be a year before she is anything like her former self.  With that in mind, we have decided to return to our home in Geraldton when the tenancy agreement expires in November.  We are basically at a standstill until we see the specialist again in September when we expect Merry to be cleared and able to move on.  We will then meander back to WA  as we can’t take on climbs into waterfalls, walk through gorges, do heritage walks through towns and villages, etc, that take several hours of walking and/or climbing that we have been accustomed to.  This means we will not have seen half of Victoria and most of New South Wales (about another 18 months worth of travel, the way we do it).  We will then return for 3 or 4 month trips during the better weather times, on the assumption that Merry’s health returns to something like it used to be, and that Barry’s health doesn’t deteriorate.  It is slightly disappointing not completing the whole of the country, but it was originally only supposed to be a 2 to 3 year exercise, and we will be at the 5 year stage in September, plus we did some travelling around WA before we set out on the real trip in September 2008.  We started out from Ann and Ashley’s home near Perth with approximately 50,000 kilometres on the speedometer and we are currently 3000kms short of its 140,000kms service (90,000kms) and will be much closer to the 100,000kms by the time we get back to Geraldton.

31^st July 2013

Merry managed to do the hour long walk again this morning and seems to be better than yesterday so we just might try another picnic day tomorrow to Trentham and the waterfall if the walk to the falls is as short as Barry vaguely recalls from the previous visit.  We are led to believe that there is a physical barrier stopping you going right down to the base, which was only a request at the viewing platform last time, and was ignored.

27th June to 13th July 2013

27^th June 2013

Not such a good day for Merry as she woke up with a rough throat again that didn’t improve throughout the day, but still managed her eating.

1^st July 2013

Nothing of note happened over the last few days other than a walk in the local park behind the visitor centre and around the supermarket so that Merry continues with some exercise towards some more fitness.  Acquiring her previous level of fitness will take quite a while and will be very gradual.  Otherwise, she is still doing well and she actually managed her first steak last night and some toast this morning.  Tomorrow we have to travel into Melbourne to the hospital for a check-up with the specialist and the nutritionist, and will probably then be informed of the arrangements for the PET scan.

2^nd July 2013

We drove into Melbourne without any hassles other than the fact that all of the 2 hour parking bays were taken up and had to use a 1 hour one.  This was closer to the hospital but meant the car had to be moved to fit in both appointments even if things are running on time. We arrived early so we took the canvas print and some returnable goodies down to the radiation therapy area first.  We then had a coffee in the café before collecting the high protein liquid meals that Merry didn’t like, or use, and took them into the ‘C’ clinic to give to the nutritionist at the first appointment.  Barry returned to the car and moved it to a vacant 2 hour parking bay, and brought the other canvas print in for the second appointment with the specialist.  We then went up to the pharmacy and paid an outstanding bill before finding somewhere to have lunch.  This meant moving the car again as there were no suitable cafes within reach in the time left on the parking meter, so started in a homeward direction until we spotted somewhere to park and eat.  This done we headed to Taylor Lakes shopping centre and bought a nebuliser as it turns out that Merry needs one for at least another two months.  If we had known this we would have bought one three weeks ago instead of hiring one, but we can’t change that.  The outcome of the hospital appointments is that everybody is very pleased with Merry’s progress, and doesn’t need to see the nutritionist again.  She has been assured that the tiredness this length of time after the treatment is normal and will last for a long time yet so she can stop stressing about that.  Her vocal chords are still burnt and will take several months before sounding anything like they used to be, and will never sound exactly the same or as strong , but that will be a great outcome.  Currently the voice is whispery with the occasional sudden hoarse growl, a bit like a teenage boy whose voice is in the breaking process.   We have to see the specialist in 2 months time which will be just after the PET scan, the date of which has yet to be set and us informed.  Assuming everything is great after that we can think about travelling around in Victoria again, but being within easy reach of Melbourne for another check-up around February.  That means we will probably be somewhere like Bendigo at that time as we have some free V-line train tickets that we can use for that visit, or back here in Woodend with Steve and Terry, if they haven’t had enough of us.

4^th July 2013

We took a drive up to Kyneton to use the closest Woolworths store to Woodend with the possibility of a stroll through the town but by the time we got there the weather had changed from not very good to downright miserable, with more of the same to come.

5th July 2013

We had some wind but nothing dramatic and a little rain, however, nothing like they said on TV yesterday, but the lower coastal part of the State copped a bashing.  We have arranged for our windscreen to be replaced next week after having some rust being cut out first.

6^th July 2013

We went over to Macedon to visit Steve’s sister, Sue, for morning tea and to inspect her hot house.  The hot house is quite impressive but the weather didn’t show it off to best advantage but obviously will live up to its name with a bit of help.   Her ‘shedio’ (shed/studio) is also impressive although it is still a work in progress but will eventually offer many options including a bedroom/toilet with mezzanine storage.  In total the cottage, shedio, and hot house are a very nice unit.  In the afternoon we went to Sunbury where we were able to return Barry’s eReader to Aldi for a return of money as it had died and refused to recharge of do anything useful.  We continued on to Dick Smith’s where Merry bought a, 8.9 cm Kindle Fire HD so that Barry can now take over old 7cm version, now that the Aldi one has gone.

7^th July 2013

Despite lousy weather we went to the Gisborne market with Steve and Terry and actually managed to pick a time when the rain didn’t affect us, and better still, resisted buying anything.  After we arrived back home the weather deteriorated some more so we had a day of leisure.

8^th July 2013

This turned out be the coldest night we have experienced since arriving here.  When Barry went to the car to take it for the windscreen and rust removal, he had to use some warm water to clear the ice off the screen.  He then went to the shops first and the screen started to freeze over again whilst he was in the shop and had to drive around to the street behind the shopping centre to face the car into the sun to clear the screen.  In the afternoon Barry went to the guys property who is removing the rust to have a look at the damage, which is not as bad we had been led to believe and will only cost about $300.

9^th July 2013

Another freezing night but at least no one had to get up early to deliver cars anywhere.    The frost and ice doesn’t start to thaw out at about 9.30am as it takes that long for the sun to rise above the tree tops which are way up Mt Macedon.  Our car will be ready for the new windscreen tomorrow (Wednesday) but the screen will not be fitted until Friday morning as the installers have to fit in a time to travel up from the Geelong area which is about a 1.5 hours drive, as we definitely aren’t driving there without a windscreen.

12^th July 2013

We have done nothing for the last few days but should get our car back today which will allow a bit of mobility, but the lack of it has allowed us to watch the cricket test match.  We have been told today that the screen will be done by midday and can collect it at 3.00am.  Merry is still doing great although she has been getting headaches due to insufficient water intake (she claims) and her food intake has decreased now that she has come off the steroids.  Colleen rang yesterday to inform us that Abby was in hospital with appendicitis which she had obviously had for a while but hadn’t told anyone that she was in pain.  She didn’t want to miss out on her netball practice, or games, so she chose to put up with it.  Apparently they were gangrenous and about to burst when they finally took them out via keyhole surgery, and will stay in hospital for a couple of days.  There goes this weekend’s netball game for our little tough nut.  We arranged some flowers through Interflora for her but we suspect she would have preferred the money towards new netball shoes, or something similar.  Abby phoned us later in the day to let us know the flowers had arrived and loves them, and to let us know that she is fine.

13^th July 2013

Merry still doing very well and took Foxy for quite a long walk (by her current standard) despite the drizzle.  We then drove down to Sunbury and returned the Kindle Fire HD to Dick Smith’s as it will only accept files Kindle files that are bought directly from Kindle (Amazon) so it will not recognise the 4500 books already on her original Kindle and a lot of audible books.  She now has a Samsung Tablet instead which in theory should cater for both

.

20th June to 26th June 2013

20^th June 2013

It was particularly cold last night, down to zero, but we survived.  Merry took a walk through part of the town for a bit of exercise, from the visitor centre to the local church and cemetery via the track alongside the river where it passes under the under the grey stone road bridge. She managed it quite well without knocking herself out and subject to the weather will walk around a bit more of the town tomorrow.  The batteries we ordered yesterday arrived late in the afternoon so Barry can replace the original tomorrow, and then work out where to mount the extra one, plus find somewhere to get some cables made up to join them.

21^st June 2013

We survived another cold night at a temperature below yesterday’s temperature as we had no water to the caravan because the outside tap and our hose had frozen.  Fortunately we still had some water in the underfloor tanks that we were able to pump through to make our morning tea/coffee and breakfast.  We will fill the tanks to a fuller level in readiness for more freezing weather.  We didn’t get this cold when we were in Hobart a few years ago, but that is virtually at sea level, not at 1900 ft (603 metres) up Mt Macedon.  You don’t realise the height as you drive from Melbourne as it is a long very gradual incline except for the last few kilometres after turning off the Calder Highway.  We took another walk through another part of town along the creek to continue building up Merry’s fitness again.

22^nd June 2013

Another morning of heavy frost but the tap didn’t freeze up this time buy wasn’t far off it.  It starts to melt and drip off the trees onto the caravan at about 9.00am when the sun finally reaches it, and then it sounds like rain. Terry does a lot of quilting as her hobby so this afternoon we  visited a quilting show in Lanceton but it didn’t particular excite us including Terry.  Some of the designs were quite good but most had been given to professional quilters for the actual quilt work.

23^rd June 2013

Yet another no-water-first-thing-in-the-morning event but the prediction is a few degrees warmer for the next few nights.  Apart from having an immediate supply of water in the morning it is unlikely that we will notice any significant difference in the temperature.

24^th June 2013

We drove back to Taylors Lake again and returned the Grundig PVR that we had bought as it didn’t live up to expectations and had our money returned, and then went to another shop and bought a slightly more expensive Sony equivalent.  This has already proven to be more superior and actually does what it should.  The external appearance of Merry’s throat is now totally normal with no signs of having been burnt in anyway.  Internally her throat has good and not so good days but generally is vastly improved now that the predicted ‘worst two weeks’ are over and done with.  Her appetite is still good and with the softer type meals that are prepared with her in mind, there are no real swallowing problems, probably due to the steroids which she has now decreasing. We drove to New Gisborne and had a couple of cables made up and have connected our two batteries together to give us longer lasting battery power when we free camp in the future.  That will have to wait a while until we leave here and even then it will need to be somewhere warmer.  We also had a quick look at the pretty town of Gisborne and a stroll around the local shops.

26^th June 2013

Merry’s throat is much improved and eating slightly more solid food but still needs to build up some fitness so we’ll continue with the short walks and try to gradually extend them.  It will be quite a while before we do 2 hour trips to the base of waterfalls again, we’ll just use the lookouts at the top.  It is our turn to cook today and the plan is a have normal oven cooked roast pork and vegies in the traditional style, to really test Merry’s swallowing ability. 

The meal was a success although Merry knocked herself out with the monumental project in preparing and cooking it, including a dessert and Merry managed to swallow it with relative ease.

9th June to 19th June 2013

9^th June 2013

Merry started well this morning with a poached egg and 2 slices of buttered bread.  Toast is too rough at the moment.  The skin on her neck hasn’t started to weep yet but is looking quite red and dry but not as bad as anticipated for this stage of the proceedings. Lunch was a good size tub of shepherd’s pie and vegies which actually followed an earlier Vitabrit and the lunch was followed by 8 squares of dark chocolate.  Dinner was another large serve of fish with rice and vegies followed by more stewed apple and custard.  Her eating has grown in both capacity and frequency so she is getting plenty of the required healing protein.

10^th June 2013

Merry is still eating well and her neck is still not requiring the fancy dressing that we have for when it starts to weep and the skin to break down, so it just might not happen which might be due to the cream that she is applying regularly.  The red area on her throat is actually smaller in area than it was.   Barry cooked dinner for tonight under Merry’s guidance to give Steve and Terry a break and it obviously suited Merry as she ate a huge amount plus the usual easy to swallow stewed apple and custard.  This was after a good sized lunch and a banana between meals which gives the impression she is going to eat even if it is uncomfortable rather than drink the foul tasting high protein liquid food.

11^th June 2013

Merry dived out of bed at 6.00am and got her own breakfast cereal to overcome her hunger so something is working.  Lunchtime she had a fair sized omelette and a large lamb shank dinner so her appetite is back to normal. However, the exterior of her throat is now dark red and could be getting to the stage were the skin starts cracking and weeping.  We have now started to use a different ointment and a fancy dressing supplied by the hospital nurse before we left the hospital in anticipation of this happening.  The different cream and the dressing seem to sooth the throat by keeping the air off it, much like any burn case.  Apart from that, all is going to plan.  We have cancelled the installation of the PEG as a waste of time and effort now that Merry is eating so well and the fact that it is almost past the worst of the problem before it would be installed.  Merry has had numerous abdominal operations and another one is something she can manage without, especially as it is no longer required.

12^th June 2013

Merry’s hunger is still with us so she devoured a plate of scrambled egg mixed with bacon pieces and 2 slices of bread, toast is still too rough, although she ate it with the crust this time.  So that Steve and Terry aren’t left to do all of the cooking Barry is providing some of the meals, under supervision.  The weather is typically Woodend winter, cold with continuous drizzle, or rain, so Barry and Foxy have not been doing the morning walks and the prediction is for a continuation of rain for the next couple of days.  The skin on Merry’s throat is now gradually flaking off, similar to sunburn, which will probably happen for a few days until all of the red area has gone and regrown new skin.

 13^th June 2013

The red area of Merry’s throat is still peeling but definitely shrinking.  Her appetite is still good and eating well with slightly more solid content.  As a point of interest, we haven’t watched TV for over 3 weeks now, and haven’t really missed it.

14^th June 2013

We travelled to Taylors Lakes this morning to invade Officeworks to order two stretched canvas pictures from two of Merry’s photos to donate to the Peter MacCullen hospital, and also went into to Harvey Norman’s to buy a new PVR as our current one is not doing what it used to do.   Our old one degrades the incoming signal to the point that on many occasions it is not worth watching, or more to the point, recording.  The one we have just bought has to perform much better, or it will go back where it came from.   The time spent in the shops plus having lunch there and calling into Sunbury for some grocery shopping wore Merry out and was very glad to crash out once we arrived home

15^th June 2013

We initially took Foxy for a short walk to the end of the road to get Merry used to exercise again.  The 5 weeks of radiation and the following few weeks have been very tiring for her so she hasn’t been active, which now needs to be overcome as she gradually improves.  The redness on her throat has both shrunk and lightened and looking much better.  The inside of her throat no long feels full of razor blades but is still slightly rough.  Talking is still very much a whisper but we expect that improve over the next few weeks.  Eating still requires soft food but generally is much easier which is good as her current appetite is putting a great demand on her eating ability.  After the walk we drove over to Riddell’s Creek to the Farmers’ Market see what that was all about and gained a few vegies before returning via Macedon.   The trip was actually an excuse to get Merry out of the caravan confinement for a while and create some extra exercise activity.  We called into an organic jam making establishment and bought some scones and jam to share with Steve and Terry when we arrived home.

16^th June 2013

Basically just a day of rest other than the first 4kms walk that the weather has allowed Barry and Foxy to have, although it was quite cold despite a certain amount of sunshine that we haven’t seen for a while.

17^th June 2013

Another day of rest and another walk for Foxy and Barry, and the weather more threatening. The red area on Merry’s neck is only about 4cm across the front compared to the halfway around each side, and not as wide from top to bottom, and looking really good and the food we have produced in soft form but high in protein and nutrition has proved to be doing the job, as she is healing well and gaining weight, much to her disgust.  Permanent tiredness despite sleeping quite well is the main problem.

18^th June 2013

Merry’s neck only has about 2cms across of red area now and her voice is improving beyond a weak whisper, so it is likely to be fully cleared of red within the next few days and sounding more like Merry .  We drove down to Taylors Lake today to collect the stretched canvas pictures that we ordered plus going to Bunnings, BCF and Spotlight.  From there we moved in to the main shopping centre and had lunch followed by a romp around the supermarket.  This was more exercise than Merry actually had planned on, so we headed home and abandoned ideas of acquiring a new battery, or batteries that had been on the agenda for the caravan, until another day. We want to double up the battery power to ensure that there is sufficient to cover several nights of power for Merry’s sleep apnoea pump when we run it via our inverter on the occasional use of free camping sites when we eventually start moving again.

19^th July 2013

Merry’s throat is now showing very little decolourisation compared to the rest of her neck but is still very slightly sore, but she is now leaving the dressing off.  The inside of her throat has returned to the razor blade feel as she also stopped using the Fentalyn patches that are designed to overcome background pain.  This proved to be stopping too soon and she has gone back to using them a bit longer.   Generally, she has pulled up quite well after yesterdays exhausting excursion.  We have now order two batteries on-line as that way we get identical batteries to the original one, with free freight, and will be $277 cheaper than two  of the ones we checked out yesterday at BCF.  From experience we now that the chosen brand of battery is good for 4 years as the original one is still hanging in but not good enough on it own for  more than one night using the apnoea pump.  Bearing in mind it also contends with the 12v TV, 12v PVR, water pump for the taps, toilet and shower, and lighting, although drainage by the lighting has been reduced dramatically by changing to LED globes.

1st June to 8th June 2013

1^st June 2013

Saturday passed as a wet day of rest which we took advantage of.  Merry had two attempts at real feeding, once in the morning with porridge and again in the evening with scrambled eggs but both attempts were not a great successes but heading in the right direction.

2^nd June 2013

 

Also a day of rest but not as successful as yesterday as Merry’s feeding tube developed a blockage, however, we did managed to clear it without having to return to the hospital for another one.  It isn’t much fun having them put in, the last time they had to have three attempts before being successful.  Otherwise the weather has cleared up a bit and allowed Barry to load some of our non-required items into the car in readiness for our departure on Wednesday.   The feeding method and the specialised food is not agreeing with Merry as it leaves her feeling permanently bloated, however, the Steroids that were prescribed for her on Friday do seem to be helping with the swelling in her throat and the soreness has reduced.  She has decided to remove the tube and go back to real eating, albeit somewhat mushy, as swallowing is easier now.   If that works it will leave us with about $300 worth of high protein liquid food and an untouched box of gravity feed bags that we no longer need.  Pity they didn’t try the steroids a week ago.

3^rd June 2013

We had an easy trip into the hospital today and found some easy parking that was partially paid for before we arrived, but still left some time on the meter when we left.  We phoned the suppliers of the liquid food and they are willing to take back the un-opened carton and are trying to arrange the return of the gravity bags, but we have yet to hear about that.  We came back to the hostel via a slightly different route in order to pick up some fuel and because it seemed easier used the same route after the afternoon treatment.  It was easier in the afternoon except for the last couple of kilometres but we were able to duck off through some backstreets to get around the snarl up.  Merry is feeling pretty good now and is eating regular food although only small quantities of mashed up stuff, and drinking tea and drinking chocolate, so all is good.

4^th June 2013

I spoke too soon as today’s meeting with the nurse has prompted them to panic because Merry has lost a couple of kilos due to not being able to get the liquid food done and only small real meals.  Just what she wanted but not what the doctor, or nurse, wanted as she must maintain her weight to prove she is receiving sufficient protein etc to help the healing stage.  Tomorrow we have to see another specialist to have a PEG installed so that we can feed her directly into her stomach which will probably happen in a little while.  So after the afternoon meeting with the specialist, etc, we head back to Woodend for a telling off from Foxy for abandoning her.  Apparently, even though Merry has come through the radiation treatment very well, the next few weeks will be worse as the effect of the radiation continues on its own, so basically the tumour has gone but that was the easy bit.  The staff in the radiation treatment machines, and especially those on machine 3 where Merry received most of her treatment, who treat her like a long lost friend and are the most caring people you could wish to meet.  She is now required to use a nebuliser to assist the clearing the muck in her throat which we would have to buy, or hire.  We have arranged to hire one from the Wooden Pharmacy for when we get back there but in the meantime we called into the local pharmacies in Ivanhoe to hire one there so merry could start straight away.  None of them had any for sale and only one hired them out but they were already in use but the lady on the check-out in the third pharmacy called us aside and said she had one at home that was longer needed, and later in the afternoon she delivered it to us and rejected any payment for it.  It is an old model but it works, a bit like us, so how kind was that.  Barry drove out to Bayswater to collect the annex wall that we arranged to be modified at Southern Cross Canvas who hurried this job through for collection prior to leaving Melbourne.

5^th June 2013

We have moved out of our room at Ryder-Cheshire House but as Merry’s appointment is not until 2.15am we are taking advantage of the community room until we need to leave.  

The trip into the hospital was easy as it was in a good time slot but there were no 2 hour parking bays available and we knew that we would be there for quite a while so Barry had to move the car here times.  Merry saw the nutritionist first with respect to having the PEG fitted who ended up not knowing whether it should happen or not, so she consulted Merry’s specialist who also became uncertain but decided to continue trying to eat and use the liquid food to supplement it.  Meanwhile they would arrange to have the PEG fitted with the ability to call it off if it proves to be unnecessary.  She then saw another two nurses who determined where the PEG would go but chose not to mark the spot.  She then saw the surgeon who would be putting the peg in and he sounded very unsure because of the number of abdominal operations Merry has already, with some leaving adhesions and a one surgeon put it ‘there is a mess in there’.  However, at this point it is going to happen unless it is called off prior to when it will happen.  We eventually left the hospital for the hour long drive back to Woodend

Yesterday we were given a printout of all the charges for Merry’s treatment which fortunately have been paid by our Medicare system as it is a public hospital.  It totalled around the $5000 mark.

6^th June 2013

Today the hospital rang twice, firstly to inform us of an appointment for tomorrow to see the nurse to have the PEG spot marked on her stomach.  Why didn’t they do that yesterday, having determined where it would go?  Now we have an 80km each way journey for them to put a Texta mark on her stomach.  Secondly to inform us that Merry is booked for the installation on the 17^th June which is going to be after she has battled through the theoretical worst period that the PEG is supposed to avoid.  Somehow we don’t think the PEG will be going in, especially as Merry ate a good sized fish meal last night, a good scrambled egg breakfast this morning and another good fish lunch followed by a chocolate mousse.  This evening she ate like it was her last meal being a chicken (slow cooked) with mashed potato and vegies with a second helping, followed by more fruit jelly and cream.   If she can continue like this even without the liquid food, it probably won’t be necessary anyway.  The nutritionist is supposed to be contacting us tomorrow to check on what she is eating and/or drinking, plus we will be checking that her weight isn’t still dropping which tonight was on the upward trend.  Things are looking good at this point in time as Steve and Terry are producing meals that really suit her situation.  Foxy seems to have forgiven us, and due to the lower night time temperatures in the caravan compared to the temperature in the house has decided to join us in bed again.  This could mean she is happy to be with us again or she is simply just looking after number one.

7^th June 2013

Merry has generally been a lot better today and her weight has improved.  She had a good breakfast (liquid meal), although she wouldn’t necessarily agree, a good lunch, a liquid meal mid afternoon and a good dinner/dessert.  Steve and Terry are being quite innovative with the meals to ensure Merry is able to swallow them and fill her up with goodness without discomfort.  Barry phoned the hospital in the morning and cancelled today’s belly marking session as it didn’t seem necessary in the light of Merry opting out of the PEG operation with it being so far though the worst of predicted rough time.   At this point in time it is not as rough as expected.  The nutritionist phoned in the afternoon to check on her progress and sounded satisfied with what she has eaten and her weight.  An appointment is being made at the hospital for Wednesday for another check-up and the final decision with regard to the PEG being installed or not, but our guess is that it will be ‘no thank you’.

8^th June 2013

Another day of eating quite well in small doses but still very weary despite having a good night’s sleep, so rested for most of the day.  The hired nebuliser is doing a good job for Merry’s throat and having done a side-by-side comparison with the old one that was given to us have decided to continue with the hired one.  We appreciated the lovely gesture but the old one takes three times as long to achieve the same outcome and with a lot more noise. Basically it is just a compressor that can’t compete with a modern unit as it is obviously very old and may have had a lot of usage.  Once we have no further use for a nebuliser we don’t have the room to carry it indefinitely so it would have found its way to the tip eventually.  Merry treated the evening dinner like it might be her last with the equivalent to a normal full dinner plate after she had her second helping followed by more apple and custard.  Things are looking good so far.

22nd to 28th May 2013

22^nd May 2013

Today Barry braved the Melbourne rush hour traffic to get Merry to her 9.30am appointment at the hospital.  As luck would have it, there was a vacant 1 hour parking lot right outside the hospital which was much appreciated and only cost $2.40 for the hour which turned out to be more than adequate.  The alternative had been to use the hospital parking but you can only use it on a day basis for $11 dollars plus when we got there it only had 1.9 metre clearance which would have removed our roof rack Being an early appointment there hadn’t been time for them to get behind their schedule so Merry actually had her treatment and was on the way of the hospital by the time she should have been starting it. On the way there we spotted an area where Barry may be able to park for 2 hours that is a relatively short walk from the hospital.

23^rd May 2013

The afternoon parking was also quite fortunate but due to seeing the nurse and doctor as well as the treatment Barry had to move from one 1 hour parking bay to another, but in this case only meant reversing into the bay behind him.  Today was an even earlier appointment and Barry was able to use a 2 hour bay which still had some time left on it so only had to pay $1.20 to top it up.  Being early meant the treatment happened straight away and allowed time to have a blood test sample taken by the vampire department.  Even allowing for this, we were back at the car very quickly and probably didn’t need to have put anything in the meter, but you never know in advance.   Merry actually had a pretty rough day yesterday as eating and drinking is getting more difficult and in the afternoon became nauseas, developed a bad headache plus leg cramps.  It was this that instigated the blood tests but she has since discovered that she feels a lot better if she stays off the morphine, so the blood test may not prove anything but we shall see.   The afternoon treatment took a while as they were running late again so Barry had to juggle parking bays.

24^th May 2013

Today shouldn’t have been a problem as we arrived early and Merry received the treatment early but had to see the doctor and nutritionist.  The doctor turned up early and checked Merry’s throat which apparently is looking good, however, it was suggested that a gastro nasal tube be installed to assist with eating and drinking, as swallowing is becoming very difficult and painful.  She then saw the nutritionist for a while and in theory that was it for the day except now she has to go back downstairs and have the tube installed which then meant having an X-ray to check that the tube is positioned correctly.  Meanwhile Barry returns to move the car which has now got a $70 parking fine attached to it because Melbourne can’t, or won’t provide adequate parking within the area.   Barry moved to a 1 hour bay expecting Merry to emerge soon, but that didn’t happen as she had to wait for the nutritionist again to have a bag of food drained into her, so Barry had to move the car once more before Merry finally returned to go home for a short break before returning for the second treatment session.  This time we found a closer cheaper parking bay which is not usually available as other people get there earlier than us.

25^th May 2013

Being the weekend Merry doesn’t have to present herself for treatment so we can relax in the knowledge that we now have to order and therefore buy the nutritional packs and gravity bags so that she can maintain her weigh, and eat in some form of comfort.  If we were Victorians this would be freely given to us, but being West Australians we have to buy our own.  Paying into the so-called National Medicare scheme for years means nothing because when you need treatment etc it suddenly becomes State based, and having not lived in WA for the last six months we get nothing from them but we are expected to go out of our way to vote in their mandatory elections, or face a fine.  We haven’t been in Victoria for six months either but it probably wouldn’t help if we had, as we aren’t on a Victorian electoral role.  In many ways the health system is as archaic as the original Victorian age.  On the brighter side, the nursing staff and Merry’s specialist are absolutely great.

27^th   May 2013

We had a very clear run through to the hospital as it was after the mad rush that is usually absolute bedlam, and makes you wonder what it would be like if some dramatic event took place.  There would be more people killed in the panic on the roads than from the actual event   We found a 2 hour parking reasonably close but the hospital was running on time and we could have got away with a 1 hour bay which would have been closer still and would have been of benefit to Merry who is now struggling to walk any distance beyond 20 metres.  Future visits will involve dropping her off at the door and then find a parking bay.

28^th May 2013

Today was another early appointment that meant battling with the rush hour traffic again but we usually allow extra time to allow for it.  However, the twelve 1 hour parking bays opposite the hospital entrance had been roped off for some sort of major maintenance but we did manage to grab one beside the hospital.  The treatment was over quickly but Merry had to also see the nurse which took a long time so the car had to be moved.  After that session she then had to get some prescriptions made up and are told it will take an hour.  After waiting as long as possible Barry went off to move the car again but as there were none available to move to simply decided to slowly circumnavigate the block a few times.  Fortunately Merry called him on the phone just before finishing the first lap and was able to pick her up and head home.  The afternoon appointment gave us the opportunity to use the same parking area and we got away with only one 1hour session by a few minutes.  We noticed that the work across the road from the entrance amounted to half a dozen star pickets being driven into the ground and tape attached to keep traffic out.  Not bad for a day’s work, Barry wants a job like that.  Overall, today was a much better day for Merry who was feeling a lot better.

4th May to 21st May 2013

4^th May 2013

Last night when Merry attempted to turn off our gas heater that we have now used for the last seven days, it wouldn’t let her.   It wouldn’t let Barry turn it off either so he turned the bottle off to kill it.  Later in the night he was able to turn it off so it seems that something expands with the heat and stops the control knob from turning.  It did it again in the morning so Merry phoned the shop where we bought it and arranged to have it changed.  This meant driving to Carrum Downs on the other side of Melbourne, about 110km each way, so the $129 heater has now cost us about $50 in fuel and toll road fees to get it replaced.  If the replacement does the same thing in a week’s time, or any other time, it will hit the rubbish tip rather than cost another $50, and use that money towards something else unless the Primus sales rep comes to us.  We sent a text message to Sue wishing her a happy birthday, which seems to be the modern, totally impersonal, way of communication.

7^th May 2013

So far the new heater hasn’t let us down but it is still a bit early yet. Merry has now had four of her radiation treatments that now take approximately two minutes time now that the initial two visits are over.  During those visits they have to take X-rays to study to ensure the alignment with the target is correct and make necessary adjustments to the mask that holds her head in place, and still.  It is just unfortunate that she has to travel for about 1.5 hours each way to receive the treatment.  Next week she moves into one of their hostels that will put her much closer and will be able to travel on the trams.  This will be much better for especially when the treatment becomes twice a day with six hours between them, but the hospital is trying to get her into one of the hospital accommodations alongside the hospital and possibly into hospital for the final week

9^th May 2013

Merry’s treatment is still going okay and has confirmed the accommodation for Sunday.  Barry and Foxy will be able to maintain their 4kms morning walk along with Steve and his dog Badger, and his sister’s dog Toby on Thursdays. 

12^th May 2013

Barry took Merry into Ryder-Cheshire House and settled her in.

13^th and 14^th May 2013

Merry is managing by herself at the Ryder-Cheshire House which has included a trip to a 3D movie.

17^th May 2013

Barry drove down to the Ryder-Cheshire House to bring Merry home for the weekend.  Her twice a day treatment starts on Wednesday so Barry will move in with her as it is expected to make her more tired than she currently is. 

18^th May 2013

Whilst here in Wooden, Merry is cooking a variety of stews, one which will provide for tonight’s meal and the remainder will be put into a blender to make it virtually drinkable.  The other stew will suffer the same fate so that Merry can eat/drink them next week as swallowing is becoming an uncomfortable exercise.  It currently feels similar to having tried to swallow a large pill that has chosen to lodge in the throat.

19^th Nay 2013

Barry drove Merry back to Ryder-Cheshire house and moved in as well.

20^th May 2013

Barry went into the hospital with Merry in the ambulance as Merry had an early appointment and would probably be out again very quickly.  That didn’t happen as the ambulance was late doing the pick-up and got to the hospital late and then waited more than an hour before having her treatment, which was quick but they arranged for her to see the nurse because drinking water was becoming a problem.  This led to her seeing a doctor who has now prescribed Morphine to make it easier to eat and drink as she is not allowed to lose weight because that affects the fit of the face mask that holds her head still during the treatment and accuracy is vital.

21^st May 2013

Having now tried using the liquid and tablet morphine, eating and drinking is marginally better at this point in time