A Skippers Tale XIV

Calmer Seas

As much as I said my blogs may start petering out… based on the appointment schedule we have for the next week or so… not so much.

Since returning home on Saturday, Dad has been visited twice daily by the lovely nurses of Silver Chain.  As of this morning Dad’s INR readings were up to 2.2 and holding steady and they were very pleased with this outcome.  One more Clexane injection tonight and a visit tomorrow morning and Dad should have reached therapeutic levels and then will be discharged to the loving arms of his GP for further Management.

Yesterday was all go central here in the Lawrence household.  In addition to the Silver Chain ladies, Dad also had visits from a pair of occupational therapists, long-time navy chums Buster Keating, Ramon Lawrence and his wife Norma, and Peter and Kay neighbours but one from Mum and Dad.  Buster has been an amazing source of information and support during the past two weeks, and he was able to sit down with Mum and I while Dad was being chatted up by the OT’s to go through what paperwork needed to be completed for Department of Vets Affairs to take over management/payment of any medical expenses etc…  Ray, the ever travelling Sensei was filling us in on the exploits of the newest four footed member of their family.

A full day that had the added bonus of being just busy enough to poop out Dad and give him a relatively uninterrupted night of sleep.  I however did wake up at one point because I heard coughing in the bathroom.  This time it was Mum…  go figure!

The other big news of the today came in the form of a phone call yesterday morning.

I spoke before that we had received a call from a Dr Chris at SCGH Cancer Centre who was touched base with us about the why’s and wherefores’ of setting up a treatment schedule for Dad.  We had been told it could take up to a couple of weeks to get the first outpatient appointment.

Apparently not!  We had a call from a Dr Gill at the Cancer Centre who specialises in Radiation Oncology yesterday.  Could we come in for an appointment tomorrow at 2.30pm? … Um… yeah… “excellent, see you then”.

After a quiet morning, save for me making a dash to Curtin to sort out enrolment thingies, the three of us had some lunch and headed into Sir Charlies.  The Cancer Centre at Sir Charlies is located in building DD… forever now to be known as the Big Booby Building.  There was some consternation in the mother department when Dad decided to take his time and do some judicious trimming of his beard and other finicky hair bits around his suture line just before we left – he needn’t have worried  (more about that later) but we still made it well on time.

Dr Gill turned out to be a tall, very pleasant young oncologist who seemed genuinely interested in Dad’s “Grumpy Old Submariner” t-shirt as we went it.  He started the consultation by explaining what it was that radiation oncology does.  Basically treatment for this type of condition comes down to a hard target beam of x-rays being administered directly to the site of the lesion (in this case three, that when you look at the MRI’s sit basically in a line from the top of the left frontal lobe and bores straight down.)  The treatment does work in conjunction with a form of chemotherapy called Temozolamide but is delivered in small doses over three or six weeks that result in far less symptoms than a broad spectrum treatment for the likes of some other body based cancers.

Mum of course was very much uptight regarding the expected prognosis originally given to us of 6-9 months.  Dr Gill said that he could, if we really wanted to, use metrics to work out time frames, but in his experience it is just a number and that no… it would be much, much longer than that.  Mum, I think, just about fainted with relief.  Obviously time is still finite… but the longer we can keep Dad around without undue detriment to his health it’s worth the risk.  Dr Gill indicated that his Dad is 72 and that if he was in the position of having what Dad has from his records, then Dr Gill would be recommending the 6 week treatment without hesitation to his Dad.

This is much better news.  When we got home, Mum pondered why a neurology Dr said that time frame when the Oncology Dr said something different.  I can only suppose it’s something along the lines of a fire chief can tell you that a fire was deliberately lit, but a forensic fire officer can tell you exactly what type of accelerant was used and where it was lit and what time…  horses for courses.  At this point we will take any rays of sunshine life choses to throw us!

One very amusing moment occurred when Dr Gill was asking Dad a series of baseline questions to ascertain basic memory function.  After running through the normal, what day is it, what month, what’s your date of birth, he asked “What is the name of the Prime Minister”.  Dad paused and thought heartily for a moment before responding… “Shit shit shit shit shit!”.  We all laughed… people may call him that, but that wasn’t the right answer.

Dr Gill escorted us down to the ground floor and Dad had to go in for this initial scan and fitting of his head brace – basically a moulded plastic head cast that enables the exact same spots to be targeted every time and helps prevent the patient from moving his head.  Mum and I waited in the corridor while Dad had his first fitting.  When Dad walked out my first thought was… Shit he looks gaunt around the face… granted in the two weeks he’s been in hospital he’s lost approximately 10kg and quite a bit of muscle tone (he said he wanted to lose weight… bit bloody extreme)… but that was not the reason for my shock…

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Notice anything wrong with this photo???

This is only the second time I have ever seen my father without a beard…  *THIS* freaks me out!

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A Skippers Tale XIII

Slow and Steady

If my daily posts peter off a bit for the next little while, it’s not because anything drastic has happened more likely it’s something to the contrary.

Dad provided Mum with little sleep last night, between his snoring (situations normal) and a dry tickly cough that he managed to pick up on the ward (typical) it made for an interrupted night.  I do know in the wee small hours of the morning Dad had gotten up to go to the bathroom and one bout of coughing woke me up.  I quick check that it was just coughing and not being sick and I went back to my own fitful night of disturbed slumber.

I’ve been fairly disconnected emotionally through most of the past two weeks, please don’t mistake that as not caring, far from it… I can most liken it to being like a black swan on the Swan River… majestically calm on the surface… paddling like shit underneath…  and I knew the possibility of me having a meltdown was very possible, and it finally sort of happened yesterday afternoon.

Dad is being very accepting of what is going on in his world right now, and he has a favourite expression along the lines of “If I wake up tomorrow and I am looking down on the grass… that’s great.  If I wake up tomorrow and find I’m looking up at the grass, it won’t bother me because I’ll be dead”.  The first couple of times I heard him say it to various people I could shrug it off… but yesterday as Dad called immediate family I must have heard it one too many times, or the actual words finally sunk in… because that was that… Awooga Awooga we have reached critical mass!  Initiating meltdown in 3…2…1…  A brief respite, hissyfit, bout of hysterical crying and 10 minutes later; back on track.

Apart from that, and the sleep issue, yesterday passed very sedately.  This morning the Silver Chain nurse arrived to do Dad’s readings and check him over.  His INR had increased from 1.1 to 1.8 in a day… so dependent on what his readings are like for the next couple of days, he might reach therapeutic levels by the end of the week and Dad can move from the Clexane to just prophylactic Warfarin.  (I’m sorry, but does anyone else giggle when they hear or use the word prophylactic?)  Peter our morning Nurse also removed Dad’s staples (Mum thought this was a good time to take Coco for a play in the backyard.)  He should be able to wash his hair as early as tomorrow if the morning nurse is happy with the suture line.  Already little prickles of hair have started sprouting where the shave occurred, God bless the Lawrence hair gene!  We got that one right!

A snooze around lunch and a generally lazy afternoon has led us to the here and now… Mum and Dad are watching New Tricks from the other night, and I’m just surfing the net before heading to bed.  If anything new, exciting or interesting happens… I will post… as they say in on the TV… Tune in… Same Bat Time, Same Bat Channel.

A Skippers Tale XII

Home Port

He’s home!  Much to the excitement of one four-legged ‘dawg-hter’

Late yesterday – after I had already posted my blog for the day, Mum and I had a call from one of the Oncology Doctors to discuss what was going to happen from now with regards to any possible treatment.  Outpatient clinics are usually held on a Wednesday, but allowing for when an available appointment is we may be looking at two weeks for us to go in and talk about options.  At one point the comment was made by the Dr that treatment may not be offered which of course upset Mum a bit.  When we asked what would trigger that the Oncologist indicated scenarios including, it wasn’t the patients wish… if the patient was unable to actually take the treatment (we are talking serious toxins here) or even in some cases the person is at the point that even if they offered treatment it would do no good.

After a disturbed night sleep for both Mum and I, this morning we filled our hours with doing general house-y-work type of activities before heading in to collect Dad.  Mum also even took the bull by the horns and drove herself up to the local shops to do the Lotto and get the Saturday paper so it was here in the house when Dad got home.

My time was spent refereeing two purrnicious furpersons who were having a bit of a ‘spat’.

We had been advised by the nurses that discharge time was generally between 11 and 11.30 so we headed in aiming to get there closer to 11.

Considering the palava Dad and Mum had faced getting Mum discharged from Fremantle Hospital after her health scare last September, we were going in expecting to wait until about 4pm to actually get OUT of the hospital.  We were greatly mistaken and moderately pleased.

It’s funny.  Dad admits he believes there is a major conspiracy going on with the staff and us because he was certain that this has all happened over a much longer period than it has.  We had to reassure him that everything that has happened has only happened in the past 12 days.

We were visited by a lovely ward nurse Jane and chatted briefly about Staffies and their energetic foibles (Jane has an AmStaff – American Staffy – called Molly).  Jane brought the packet that Fiona our social worker had left for us with all sorts of useful information in it that I will probably have a read through tonight to get a better grip on some things she had touched on yesterday including setting up ‘instructions’ that Dad would like followed should he be readmitted.  Jane gave us a run down on the tablets and other medication that Dad will need… things like steroids to help with swelling, anticonvulsants, and blood thinning medications.  When Mum came out of hospital I did up a spreadsheet that could be printed out for a week outlining what needed to be taken when.  I have also now done one up for Dad as well.  Add my list of personal medications and … Lawrence pharmacy, come on in!

After Jane came Lydia, the Coagulant Nurse.  She specialises in the medication dealing with blood coagulation.  She started giving us the run down on the effects of things like Warfarin, Clexane and the like, but we soon provided enough evidence that we knew all about this, so we got the Cliff Notes version and were informed that until Dad’s INR readings get into the midline (2-3) a nurse from Silver Chain would be visiting to give him his Clexane injections and do a general health check twice daily.

Dad’s Boris Karloff hair-do (read head staples) will be removed about 10 days after the procedure… so probably next week some time.

With everything signed and sealed we headed down to the car and the leisurely journey home.

I have never been so mindful of traffic in my life.  I had visions of some effwit suddenly causing me to stamp on the brakes and what that might do to Dad.  Fortunately no such event occurred and we made it back to the house at about 1.30.

Coco was ecstatic at seeing her Dad again, however wasn’t her usual stupid-with-excitement self… we are certain she knows something is going on.  She has however tried on several occasions to get up on Dad’s lap since he sat down at lunch.  Fortunately “No” seems to have worked.  But I fully expect that within the next 24 hours there will be a little (or not so) tan lump curled up next to him.

Around 3.30 we had a call from Elise the Silver Chain nurse who would be doing Dad’s initial assessment who said she was on her way.  Very friendly and helpful, Elise ran through what we could expect from them, and what we should do in the case of any type of concerning incident.  At this point the Clexane dose was given and all was as right with the world as it can be.

We are in the process of cooking some Bangers and Mash for our man and then expect to have an early night.

Love to all

Yoli, Barb…. And Fred

A Skippers Tale XI

To the Bitter End

Had a phone call today from Fiona, the social worker at Sir Charlies.  The slim chance had come through and Dad’s results were in and the Registrar was looking to find out when we were coming in next.

I told her we were planning on leaving home around 10.30 and should be in the hospital between 11-11.30.  Fiona indicated that she would be there around that time to talk to us about plans for Dad to be discharged and the like.

Fiona wasn’t able to give me any indication on the call which way the results might run, which was fair enough and so we just made our way in as we had intended.

Within moments of us getting into Dad’s room and saying “Hi” there was a young nurse at the door confirming we were Dad’s family and then scurrying off to get the Doctor.  Moments later a young Doctor by the name of Ivan came in and sat down with us.  My brain is a bit of a fuddle right now… but the long and the short of it is… it is what they suspected.

Stage 4 Multiforme Gilioblastoma.  It is apparently very very aggressive (we were concerned with the second “very”) and absolutely malignant.  Tumours of the Brain run from Stage 1 (benign and operable) to Stage 4 (neither of the above)

This time Mum asked “the question” and Ivan actually said he was hoping we wouldn’t.  Untreated, likely prognosis is about 6 months.  Treatment generally adds about another three with the longest he had seen living for about two years.

Treatment for this type of tumour isn’t so much a reduce it/kill it… it’s more a stall it for as long as possible until treatment doesn’t work anymore and would include Chemo and Radiation therapy.

This is the unknown element at the moment, what regime would the Oncologists want to put Dad on?  We should be getting a call from them next week to set up a time to go and see them about possible scenarios and if treatment is wanted at all by Dad.

The problem with this type of tumour apparently is that you could have microscopic versions of it lying in wait in your grey matter and then they suddenly just take off.  Radiation/Chemo MIGHT be able to do something about reducing/slowing those… but for the ones already there (and yes they are in fact still classified as small lesions) slowing them is the best that can be hoped for.

By general consensus Dad will come home tomorrow where he can be monitored and cared for, for as long as his condition will allow.  But we are now faced with the finite… if a little wishy-washy on the timeline.

We now start to consider things like… Dad’s wishes when it comes to Resuss and the like and other decisions that he can and should be a part of.

To say I am shocked is too strong a word… I highly suspected that this was going to be the outcome and have in some way been preparing for this for the last two weeks since I first heard the word “mass” and “brain” in the same sentence.  This is not to say I am not devastated and trying to process what is going on.

We are back at that waiting game now to see the oncologist, but we will make use of what time we have with Dad making sure that his wishes for his and our futures are seen to.

As Dad will be at home if you do want to drop around and see him, please email Mum on bml3598@iinet.net.au or call the home number on 08 94902977 from this Sunday onwards.

A Skippers Tale X

Clean Slate

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Gong xi fa cai!

I’m taking hedging my bets here and wishing everyone a happy new Lunar Year on this the first day of the new Chinese year.  I am starting to wonder if in some deep dark past life I celebrated this event a little more diligently, because I had thought that 2014 was my Annus Horribilis what with Mum’s close call and various other little nasties that popped up along the way.

Then Dad happened!  #@$&!!!!!!!!!  And it suddenly dawned on me… I must follow the Chinese New Year!

So by that token… buck up your ideas 2015!

Anyhoo… Dad.

Well the good news is; he’s been moved out of HDU and onto the general ward.  I did get a bit of a shock today when I looked into the HDU and some random woman was in the bed where Dad was normally.  The Staff were kind enough to point me in the direction of Dad’s room that overlooks the construction of the New Childrens’ Hospital.  A single room with ensuite and a phone, Dad is now free of all bar one IV that is being used for Heparin infusions as required.

He is in Room 1, Ward G52 if you are interested!

We chatted for a while about what was happening with my work (I had to call into the office and finalise my leave arrangements) and the general goings on over the previous couple of days.  Dad’s thoughts on where he is at the moment are very much on par with what he had said to Mum yesterday.  While he is in hospital should anything happen it is easier for them to call us in, than to have something happen at home and we suddenly be put in a place where we need to take action ie Ambulances etc…

This could all change however in the next day or two.  Fiona, the social worker I had previously met, happened to call me as I was driving into the office this morning.  She wanted a chance to chat with me over where the Dr’s thought Dad was up to and where to move on from then.

Around 12.30 Fiona came into Dad’s room and we had a good chat.  All things being equal (allowing for the fact that we are still waiting on results of the biopsy), the Doctors are pleased with Dad’s recovery and only have a couple of small concerns about his independence in the home front.  They don’t want him to be left unattended simply as a precautionary measure rather than for fear of him doing something daft.  Things like simple food prep, personal matters and the like they are confident Dad could do without issue (but would still like someone to be ‘around’), but they would not expect him to do larger things like a full main meal prep etc.  Considering Mum’s situation Fiona asked what if any support could be provided to assist us should Dad come home for a few days.  I expressed that Mum isn’t totally incapacitated (though she has been pushing it a bit these last couple of days) and that between us, we can manage – but we do have some reservation about falls and the like.

We also discussed the strategies I would need to put in place to help manage Coco’s interaction with Dad.  Coco is a smart dog as seen by her helping Mum when this all started, but Dad is her Dad and she is only 3 and very very happy to see him, so some collar/leash restrictions may be in order at first.  We do however have the advantage that because of Dad’s FIFO career, Coco from her joining the family, has been raised with the concept of Dad “going in the box” (the phone).  So any excitement we expect will be minimal because she’s used to the routine.

Just to add to the mix, Fiona did mention that there is a SLIM possibility that the test results might be sent back today and be ready for discussion tomorrow.  This would change any plans we make because it could be that Dad would start any treatments immediately if required.  The other option we are exploring is that Hollywood Repat Hospital around the corner from Sir Charlies might take over interim care while we wait for the results to come in.  We are waiting on the outcome of that referral request as it is actually Dad’s preferred option at the moment.

Tomorrow we will talk to the ward and see what time will be best to go in and catch the Doctors and Fiona and we will know if we are bringing him home tomorrow?  We will keep you informed.

A Skippers Tale Part IX

Pooped!

Well Today has turned out to be the rest day that yesterday was intended to be.

Mum and I were going to head in and see Dad this morning, but during their morning phone call, Mum let it slip that her latest round of INR results (blood clotting measurement) to monitor her Warfarin intake for HER Pulmonary Embolisms had come back at only 1.5 for the second week in a row and the Dr had ordered her dosage up to 6mg.  We suspect with the stress and the extra moving around that Mum is doing at the moment, that her heart is more active and is creating more of a demand on her body.  Dad wasn’t particular happy with that and suggested that because “You know where I am, and I know where you are and the nurses are looking after me” that we actually TAKE the day off and get some rest instead of running around like yesterday.

This, as it turned out, to be a very good idea.  Mum and I managed to get some real rest today and we both feel a lot better for it.

Dad’s CT scan went well apparently and they have been able to remove all bar two of his accoutrements (most likely the IV line for the Heparin and another drain).  Still no word if and when he will be released, but he’s at the point we the staff and we feel that he can start having visitors.  So if you are interested in seeing him, we would advise phoning Sir Charlies on 93463333 and asking for HDU in ward G52.  The staff will be in a position to see if Dad is up to it… also… if he is still there!

I will be going in to see Dad tomorrow morning after dropping into work for a few minutes to sort out some further leave.  Thank God for long service!

All for now

Yoli and Barb

A Skippers Tale Part VIII

Short Rations

Short posting for this evening.  Today has been supposedly a day off… we should have put that down as “a day not visiting” instead.  Mum and I took the opportunity of not visiting Dad to get some other things sorted so we don’t have a rush as we move forward such as contacting various organisations and making sure we have any power of attorney provisions in place.

As Mum is sole power of attorney for Dad and I am back up, I asked people what would constitute the POA moving to me at any point.  General consensus is that should Mum get to a point where she feels unable to maintain the duties of POA, that a letter from her Dr would suffice to move that POA to me.  It’s something odd to think about, but I just need to know these types of things just in case.

We’ve spoken to Dad a couple of times today and confirmed that his follow-up CT scan had gone ahead.  At time of posting the results hadn’t made their way back up onto the ward so we will have to wait for them tomorrow.

The nurse suggested to Mum that a nice bubble bath might be in order… and as Mum said, she could get in, but getting out might be problematic… Stuff the bubble bath… I’m going to be checking the water readings in the Spa tomorrow!  I can see a long soak in my near future!

We are all well as can be expected, and yes, I am trying to make time for *me* too… we will move forward as stately as the days and see where this journey takes us… and we are grateful for those of you who are joining us on that journey!

All the Best

Yoli & Barb

A Skippers Tale Part VII

Groggy

When I woke up this morning I found Mum was a little teary.  When I asked her what was wrong she explained it was something as silly as hearing the bin-man come up the street.  She was reflecting on how it had been a week already since Dad took his turn and started on this course.

As you can probably guess, Mum was as twitchy as a willy wagtail this morning knowing that Dad was scheduled for surgery at 8am.  To her credit, the agitation didn’t come really to a head until about 12.20pm when she could stand it no longer and she gave in and called the Ward.  We were informed that the surgery had gone ahead without issue and that Dad was still in recovery and his nurse would give us a call when he was brought back up to the HDU.

About half an hour later we got the call we were wanting.  Dad was back in the HDU and all had gone very well.  The Nurse was sitting beside Dad when she called and we heard him respond to her when she commented “I’m just talking to your family”.  We confirmed that the 1-3 rest period was still in force and so we aimed to be in there by 3pm.  Secure that Dad was still with us, Mum relaxed visibly and was able to have some lunch without stressing more than she is already.

The run into Sir Charlies is getting progressively better, but I do have to admit that it can be taxing on me at times.  Today we left home at 2.10 and got to the hospital at 2.40, our best time yet… and as I am driving my Mum in Dad’s car, I am adamantly sticking to the speed limit!

Because we had gotten there early we headed up to the cafeteria, which of course is at the other end of the hospital on the top floor.  I resorted to turning Mum’s walker into a scoot-along and we made double time up to the 8th floor for some refreshments.  Fed and watered with two juices and little packets of shortbreads we headed back down to Dad’s ward.

Fortunately the Nurse had warned us that Dad was going to have a couple of extra ‘bits’ attached to him when we saw him next.  Sure enough… there in addition to Dad’s existing IV was what they call a mainline – something attached directly to the main vein and a lovely ensemble of tubes from the top of his head.  They of course had to put in a drain to prevent any fluid build-up and at present he looks like someone has attacked him with a red rinse (the betadine solution) and stationery supplies (a couple of staples).  In essence he’s doing a nice Boris Karloff impersonation.

Dad’s evening Nurse came over and he was telling us that most of the paraphernalia would be removed in the next 24 hours after they have done another CT scan tomorrow and everything is deemed okay.  He was telling us that usually the Specialists get together with other department heads on a Wednesday to run through the results of tests and look at putting a plan of action together for moving forward.  He wasn’t sure if the results from the biopsy would be ready for this Wednesday’s meeting, so we might have to wait for next week.

As to Dad coming home… this, as we mentioned before, will come down to how well he recovers and what his overall position is.  In addition to the Dr’s the staff from Allied Health (Speech Pathologist, Physio, Social etc) need to sign off that it is okay.  So that is still a bit up in the air.

Dad was starting to drift back to sleep at this point so we made our farewells.  Because of the routine he will need to go through tomorrow with recovery/tests etc, Dad has suggested that Mum and I take the day to ourselves… which we badly need!  I’m looking forward to spending a reasonable portion of that in bed!  Hand kisses were given (ie we couldn’t get to his face) and we left.

The drive home did give one moment of humour.  Remember those shortbread biscuits that we had?  Well Mum had eaten one of the two in her packet and was nibbling on the second one as we drove out of the hospital.  Out of the corner of my eye I could see her holding the last little bit out to me, so I took it and thanked her.  The trouble was she seemed surprised.  Then she laughed… whenever we have a biscuit at home, Mum always gives the last piece to Coco, our Staffy… and she was holding a biscuit… so what can I say… Woof?

A Skippers Tale Part VI

Chock-a-block

As far as Dad’s day went today, he was busier than a one legged man in a butt kicking contest.  As I commented yesterday.  His Brother and Sister Shane and Jane made a whirlwind visit up from Albany along with my Aunty Shirley.  The “Three Musketeers” are close knit with Dad being the eldest.  For those of you who are reading this and not from WA, Uncle Shane and Aunty Jane both live in Dad’s home town of Albany which is some 400kms south of Perth.  It’s not your average daily commute between siblings.  Mum and I can’t thank them enough for making the trip… it meant the world to Dad and the world to us as well.

From all accounts Dad was in fine spirits when they arrived at the hospital to see him (Mum and I had previously decided to go in later this afternoon so we could get an idea on procedure times for tomorrow).  Dad seemed to get a little fuddled over the chain of events leading up to his admission to hospital, but all chatted about past experiences and family memories, once again supporting the fact that whatever is going on in Dad’s head, seems to be happening primarily in the short term memory centre – more on that later…

Around 1pm Uncle Shane called to say that Dad had had lunch and was settling in for his afternoon siesta and that they were just leaving the hospital so he, and his lovely travelling companions would be swinging out to see us on their way back home.  Having the chance to sit down and chat to people who have a different baseline to us was really good.  Aunty Jane mentioned that over the past couple of weeks Dad had seemed more ‘vague’ on the phone when he had called her.  Again, hindsight is wondrous thing… and Mum and I both said we hadn’t noticed it… But as Aunt Jane pointed out… we were ‘too close’… and we were/are.  Our understanding of Dad’s quirks while this has been brewing is tempered by the fact that we do see him on a daily basis, and it took something pretty radical to bring it to our attention.

Coco, our staffy, was ecstatic that Uncle Shane was here… a Man!  Sitting in Dad’s CHAIR!  Suddenly Uncle Shane was pummelled by 20kgs of lap dog… add to that male interaction, a brief sojourn to the park with the ball and Coco was in puppy heaven!

Just after the family left I had a text from Loui Kannikoski, a long time friend of Dad’s and his most recent employer.  Loui was down from up north and Dad had said he would love to catch up with him.  So I was able to give Loui the ward details so he could head into Sir Charlies to see Dad.

By the time that Mum and I arrived at the hospital Loui had left, but not before giving Dad a little present.  A Lego like puzzle that when completed looked like one of the Bhagwhan vessels.  I had to smile at that for two reasons.  One, it was super cute… and two, as I have previously mentioned Mindy Hammond and the recounting of her husband Richard’s Top Gear accident.  One of the things that helped him get through the transition stage when memories were there, but a little fuddled, was a constant stream of Lego… something, as he would later put it, that was complex enough to keep his mind active without overstressing it.  I can’t wait to see it finished.

We checked with the nurses and we now know that Dad is first cab off the rank as it were for surgery tomorrow morning (around 8am).  Allowing for recovery time, we should expect to get a call from the staff sometime around midday and we will head in after that.

As to what happens from then regarding where Dad will be will be determined by his recovery.  There is a possibility that he might be able to come home between the biopsy and the start of any treatments.  So if you are thinking of visiting after say Wednesday next week and you haven’t heard different from us, just call the hospital and make sure he is still there 😀

We are living a little one day at a time for the moment.  Mum can’t/won’t allow herself to wander too far into the future, instead focusing on making one thing work at a time.  I’ve always been a bit of a bigger picture artist and so my mind is going 20 to the dozen trying to factor every possible outcome I can think of at the moment so that I don’t find myself getting blindsided by something.  It’s usually crap, and it usually does… but at least I’m prepared… sort of…

That being said, there are some things that we don need to take one day at a time… and tomorrow is another day!

A Skippers Tale Part V

Choppy Waters

The brain is a powerful muscle… and a bit of a fickle one at times.

As I commented yesterday, today Mum and I headed in to see Dad during what we have started calling “the Morning Shift”.  Normally the visiting hours at Sir Charlies is 7am to 1pm and 3pm to 8.30pm.  Though the 1-3 period is “recommended” as patient down time… we have found it more a rule than a suggestion.  I’m assuming that however if a patient or visitor really needed that time it would be allowed on a case by case basis.  HDU Neurology is a little different.  Their operating times are from 10am to 1pm and the 3pm to 8.30.  We can only assume this is because the people in this ward are considered for the moment as ‘critical’ and the staff are a little more strict with the routine.

The run into Perth today was very smooth, we have discovered that unless we are travelling at peak during the week that the Kwinana Freeway is the best option in and out… We were amused to see the sheer number of people packing the platforms along the freeway train stations… we guessed rightly that most were probably heading into the city to see “The Giants”.

We arrived just after 10am and headed up to the ward.  At first when I stuck my head around the door of the HDU, my heart did a little skip as Dad’s bed was empty and made… where the hell was he?  Then the nurse moved and I realised that he was sitting in the chair beside his bed.  Phew…

Dad was his calm self.  Or as the nurse I spoke to before coming in said… a very contented chap.  The more this progresses the more I find myself thinking that this is a side effect of the pressure being placed on his brain by this little cerebral invaders.  Dad by nature, while fun loving, is also a fairly serious person who considers things deeply and profoundly.  The state I have found him in the past few times we’ve seen him is almost reminiscent of what people describe early onset dementia would be like…

We did have a moment, where without realising it Dad touched a raw nerve with Mum.  Mum’s being insanely brave with everything that has happened, and I know the thought of losing her best friend and partner of 48 years very very hard.  Couple this with her own health issues and she is of course feeling very fragile at best.  Dad passed a comment about visiting that to him in his current state would have meant very little, but it took both Mum and I a-back and suddenly the already delicate strength Mum was clinging to toppled a little.  I tried to steer the conversation away from anything further and ‘reset’ Dad as it were.  We are very much aware that this is not modis operendi for Dad and it throws you for a loop when something like that occurs.

On a brighter note he had a visit for a fellow salty dog Sid this afternoon and from the brief text Sid sent me, Dad was very chatty.

Tomorrow will bring a new day and a couple of extra-special visitors as Dad’s Sister, Brother and Sister-in-law are coming up for a flying visit from Albany to see him.

Hopefully by my post tomorrow night, we should have a firm idea of what time the biopsy is scheduled for… and we will keep everyone posted as events happen.

Thank you for your lovely words

Yoli & Barb