1st
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.
2nd
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.
3rd
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.
4th
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.
5th
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.
6th
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 17th 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.
7th
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’.
8th
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.
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