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.