10th February 2017

Brian Again:-

Things happened rather rapidly after the last Blog.
Lorraine's condition deteriorated rapidly since Wednesday. She passed away peacefully to be with Jesus at about 5.45 pm on Thursday 9th February  

Lorraine's funeral will be held at St Johns Lutheran Church, Portland on Friday 17th February commencing at 1:30pm.

This will be the last entry in the Blog.
If you need to make future contact please text or ring on 0428 060 379
My home address is :- 23 Shirva Crescent
                                    Portland Vic. 3305

08 February 2016

08 February 2017 11:00 pm

Brian again:- Family and friends are keeping up a 24 hour vigil on Lorraine as she slowly fades from this life on Earth and into the next with Jesus in Heaven.

As I write this Lorraine lies motionless in bed with an occasional arm movement and a short vocal noise. She appears not to be suffering from any pain and does not offer any resistance when moved by the nurses.
All close siblings and children have now visited and said their goodbyes.

This may be the second last blog - the last will advise of funeral date and time.

Thank you for continuing to read and share this with friends, it has been a great tool for communicating to such a wide group of people.

God bless you all

Brian and Lorraine Pfeiffer

06 February 2017

Brian here again

Lorraine has deteriorated considerably since she dictated these notes.

02/02/2017

Hello from Lorraine, but dictated to Brian,

I know some of you deserve a personal response but I will apologise now due to a lack of energy. Life is going on day by day. Weakness gripping more of me, and lack of appetite becoming more of an issue – not forgetting general drowsiness. I am on daily oxygen (that helps a bit) Meanwhile much love and support comes from you and for this we are truly grateful.”

“We are enjoying reading the travel exploits of Simon and Caitlin with Adrian as they follow ‘Lord of the Rings’ sites around New Zealand.”

06 February 2017

Brian says:- I am sitting in hospital beside Lorraine as I write this note. I was with her last night - she  was very restless and couldn't sleep. The pain drugs she on did not appear to be working. This morning she was injected with some other drug, which had almost immediate results - she appears to be pain-free as she is very calm and appears to be sleeping.

I will try and keep updating this Blog to keep you informed. I have turned off her mobile phone, so if you need to make contact I will be available on Phone 0428 060 379

23rd - 25 January 2017

Brian again.
                   23/1/2017
                  Treatment in Geelong ceased on Friday and drain-tubes removed on Sunday ready for transport by ambulance back to Portland Hospital on Monday, arriving here at about 4.30pm.

                  25/1/2017
                 Back in Portland Lorraine's condition is :- Very short of breath - running on oxygen, no cancer treatment drugs being administered - we were told in Geelong that the healing required after removing the drains would not occur if Lorraine was on the cancer drugs. We have to wait till next Thursday when Lorraine will see her Oncologist to see what the next step - if any, will be. The only treatment she is getting is the oxygen and pain relief. On Tuesday we meet with the Palliative Care nurse to plan Lorraine's return to home and what home help is available.

                 But currently Lorraine is housed in North Ward at the hospital with the best view over Portland harbour possible.
                Today Adrian left for Melbourne to start a holiday with Simon and Caitlin in New Zealand - visiting the "Lord of the Rings" sites. They are all avid fans, so should be a great trip.

Brian

16th and 17th January 2016

Brian again:
                                              16th January 2017
 Lorraine wrote : I am very thankful for the professional care given to me while in Geelong Hospital.This includes Oncology specialists (Cancer), Thoracic Team (to sort out the lungs as I am still quite short of breath while talking or doing anything physical) and the Heart Specialist Team (as I have shown signs of Atrial Fibrillation (unsteady heartbeat). At times there have been up to 9 specialists in the room all at once.

Life has been quite busy as not only do all the specialists come but also a dietition, social worker, Infection Team, not to mention frequent visits from the ward nurses checking monitors, showering, administering drugs - intravenous and pills etc., and of course the very welcome visits from friends and rellies including Marlene, Caitlin, Jen Merrett, Nicky and Andrew Schultz and not to forget Brian.

                                             17th January 2017
Early afternoon Lorraine had a further CT Scan and Ultrasound to positively identify where the fluid build-up was located after which two drain lines were inserted which Lorraine says are draining slowly. She has also been given a different cancer drug after being taken off the old one a couple of days ago.

Lorraine has a suspicion that she may not be kept in Geelong Hospital much longer as things appear to have settled down. Time will tell!

15 January 2017

Brian here:

                 There have been some changes since the last blog, firstly I am going to transpose some notes Lorraine wrote while in Portland Hospital on Saturday 14th January while waiting for a patient transfer vehicle to take her to Geelong Hospital.

Her notes:-"Oh the difference a day can make.
                   I've been disappointed over the 'slowness' of my recovery from the 'pleurodesis' over the past week or two - culminating in a few very uncomfortable and rather breathless nights.
                   However yesterday was the funeral for our dear friend Richard von Stanke. Richard's cancer battle lasted 16 years, including periods of remission - and there was no way Brian and I would have missed it!
                  So on Friday, after the funeral, off we went, following what became an unexpected teary outburst over the phone to the District Nurses - most unlike me!, to Portland Hospital A&E, where I was attached to Oxygen - ahh quite a relief, and had a further Xray and CT Scan.
                  It appears that the pleurodesis has not worked as well as it should have, so after a comfortable night at the hospital, I am scheduled to be transferred to Geelong Hospital today (Saturday) at 1pm.
                 Guess that's it for today.
                 Who knows what tomorrow will bring?"

Brian now - As all of you who know Lorraine personally would know she is very good at hiding her pain/feelings, but I was aware that she was not well and so was she - when she would not move out of the house - even to go to church something had to be very wrong. When asked she would always say she was feeling a bit sore, but thinks that generally since the 'pleurodesis' that things are improving.
                   Back to Saturday - the patient transfer vehicle did finally arrive and left for Geelong at 5:15pm. for a 4 hour trip there.
                   Sunday morning (today) I received a phonecall from our good friend Jen Merrett, who just happened to be in Geelong and knowing Lorraine was in hospital there visited and was able to tell me the details - including what she could overhear the team of doctors discussing Lorraine.
Apparently her heart rhythm was very fast and she had very low blood pressure, she has been stabilized by medication through the day.
                  I was still in Portland at this stage, but left immediately for Geelong. By the time I arrived Simon and Caitlin were there and although pale and quite weak Lorraine was much better.
                 Tomorrow a team of doctors will be deciding the next move.

                Please keep Lorraine and myself in your prayers - they are a great help!

               Special thanks to Jen Merrett and the Portland prayer team for all they have done.
             
              Brian

5 January 2017 A New Year Begins...

It's 2017 - and that means it's exactly 2 years since I have been made aware of this cancer journey. Perhaps there's a somewhat strange sense of irony that 2 years ago I was in Geelong hospital, going through a myriad of assessments - and here I was almost to the day, two years later, back in Geelong hospital, recovering from pleurodesis surgery.
I've been home just over a week now - and I have to say that I haven't bounced back with as much gusto as I might have hoped. It's taking time for the swelling to go down and the pain to lessen in the right lung area, but at least all the draining tubes are gone and stitches are out. I've also been a bit breathless, mainly at nights, which requires a bit of propping up with extra pillows to relieve symptoms. But while progress is slow, I feel I am definitely on the improve. I'd love to be doing a bit of pruning in the garden here and there - though Brian is doing a very good job of this, and his efforts, combined with a wet year, have resulted in the garden looking downright respectable and colourful.
Fortunately I don't mind the odd game of test cricket and even the Big Bash series (as long as I remember that I need to barrack for Melbourne Stars). 

Wow, accidentally managed to have all 5 grandchildren in the one photo (well done Caitlin)

 

30 December 2016 And home again...

Wow I can hardly believe that I am home again.
Christmas Day was spent recuperating in the Geelong hospital - and that was certainly a first! It began with an early morning Christmas Day breakfast hand-made and prepared by Jen - and how could  resist the delectable Portland strawberries and raspberries to nibble on during the day! 

Christmas Day - attached to my tube, and wearing a Christmas hat strategically designed (unsuccessfully)  to hide the curly, wiry tufts of hair appearing under my hats and wig!

The doctors who performed the pleurodesis were both surprised at how well it all went, so I was happy with that. Unfortunately for 4 days I had to remain attached to a suction tube approx 4 metres in length - just long enough for me to hobble into the en suite, but otherwise most inconvenient! So when it was finally removed early on Boxing Day, it was just a matter of going through all the discharge paperwork - and head for home. What a relief that has been, for Brian as much as for me. 
Since arriving home, I have been managing pain fairly successfully, the stitches have been removed - and then Christmas has begun! With visits from Sonya, Scott and 4 children, Dale and Kodey, Simon and Caitlin, and Adrian - we had a lovely time enjoying the children's excitement and playing inside - as the weather was decidedly damp and humid. 
And now for a few Christmas pics. Quite honestly I didn't know how pale and scrawny I look until seeing these photos, but then again, it's not all about me - rather the family fun we were able to share. I have lost around 5 kg over the past few weeks, (normal for me after surgery) but that will change as my appetite improves. 

All the family - with the five grandchildren

The children always love a story..

 

23 December 2016

Hi, Brian again,
                          Just re-reading the last blog again - found an error in the dates - Lorraine's operation was on Wednesday not Thursday, as I had written.

                          Blessings to you all for Christmas.

23 December 2016

Hi, Brian again,

                         Lorraine is still in Geelong Hospital recovering from her operation on Thursday evening. The following are her words:-

                        "At last it feels like things are on the mend. Despite some early negative predictions from two surgeons, all went ahead on Wednesday evening ("night -Brian") with very pleasing results. Pain is decreasing every day, and each surgeon had the grace to say that it went much better than they expected.
                         So on Christmas Day I will have the lovely present of removal of all drainage tubes, and all being well we will head back home to Portland on Boxing Day.
                        Christmas lunch has been posponed for a week or two. Back in Portland we will look forward to catching up with children and grandchildren, but will sadly miss our Miller Christmas gathering in Melbourne........ perhaps next year.

                        Meantime, crank up the air conditioners, out with the Aerogard and have yourselves a very Merry Christmas."

19 December 2016

Hi again from Brian

Lorraine's Words:

"How very bothersome!!!
I am reposing here in Geelong Hospital, having travelled via ambulance transfer vehicle on Friday evening. No major ambulance 'stories' this time, but I was sure glad to arrive in Geelong at 10p.m. and move positions. On arrival I had to wait until 2.30a.m. before a doctor was available to admit me - and by this time my pain was through the roof because I couldn't access any of my meds until I was admitted!
Saturday morning saw me in a pretty poor state, dealing with pain and difficult surgeons - but I won't even go there! However a Portland 'angel' popped in to see me, saw that I was in a pickle, and promptly changed her travel plans to stay with me until Brian's arrival on Sunday afternoon.
I am (probably) to have the pleurodesis procedure done, so today (Monday) I fasted - only to be told mid-afternoon that they won't do the procedure until late on Wednesday.
This is getting very close to pushing all our Christmas plans into complete disarray, especially as we don't know how long my hospitalised rehab period will be (anything from 1 to 3+ days). It's tough on Brian too.
Meantime I have to let the 'timing' go, but some prayers for patience and peace wouldn't go astray!
My days are also being brightened by some lovely visits, calls and texts - THANK YOU"

14th December 2016

Hi Everyone - Brian here - Lorraine wrote this out while sitting in Portland Hospital waiting for an ambulance trip to Geelong.

"I know that the word is out that we are having an unexpected "mini-crisis", so I will update to where things are at (so far!)
Just over 2 weeks ago I had a build-up of fluid over my right lung, and this required a "drain" of 3.8 litres, which made me immediately more comfortable. However a week or so later I was annoyed that the breathlessness which I had been experiencing before the "drain" hadn't gone away,  and 'as you do' I put up with increasingly worsening of symptoms (breathlessness, total lethargy and a sharp pain in the right shoulder) until Brian was able to drag me to my GP where things moved quickly - and yes, another massive fluid drain! Happily, this drain (I'm getting quite practiced at it now) caused an immediate release from the shoulder pain, and I started to feel human again.
So next?
I now await word of when Geelong Hospital is ready to take me, and when an ambulance transfer is available. (Hopefully one that doesn't have to circumnavigate Victoria)
In Geelong I will have a procedure called "pleurodesis" done. This will hopefully stop the continued build-up of fluid (caused by the cancer irritating the space between the lung wall and chest wall - in lay terms).
Not sure how long this will take - maybe 3 - 5 days in hospital, and then I expect to be right as rain."

Brian again - Please continue to keep Lorraine in your prayers - it is a great comfort for us to know so many people are praying for her.

12 December 2016

It's been a very sluggish lead-up to Christmas this year.
In fact I don't think I have fully recovered from the draining of the lungs a week or two ago, and I still experience some breathlessness and have a distinct lack of energy. I'm to have a follow-up chest xray on Friday, so we'll see if that reveals anything further. If the fluid has continued to build up, I will probably be referred on to Geelong for a procedure called pleurodesis, to reduce the space around the lungs where the fluid accumulates, and hopefully stop the build-up of fluid. 

Some people don't like cancer being likened to a 'journey'. Well I can certainly see some relevance for myself, as one never knows what new symptoms requiring new procedures are waiting around the corner. This, however, does not mean that I sit and contemplate the negatives of what might happen next. Rather, I do know that if I do begin to experience some new symptoms, well I know that other people have had this before me and so doctors are now able to offer new ways to help.

 

Meanwhile, the pace might be slow, but I'm still anticipating the wonders of the Christmas season, and know that the birth of Jesus has made all the difference to my life - and I look forward to celebrating this with family and friends very soon.

1 December 2016 Ups and Downs...

A recent text asked the following - "When do you think life will become boring and predictable?"
Hmmm not this week anyway. 
It started like this - the weekend was pretty uncomfortable with increasing back pain and breathlessness limiting my movements. I was hanging out for a visit from my support nurse first thing Monday morning, and sure enough she set things into motion and organised for me to be admitted into Portland hospital where I was promptly diagnosed with pleural effusion on my right lung which appeared filled with fluid. This was dealt with by a minor procedure to drain out the fluid, and to my shock they drained out 3.8 litres! No wonder I was breathless - even talking was tiring! The draining took a few hours, and I immediately began feeling less breathless, though it took my poor right lung a day or two to recover and get used to having some space around it again. The back pain has also eased. When I got home yesterday I discovered I had lost 2.5 kg in weight in one foul swoop! 
Throughout all this, there have been numerous phone calls to and from St Vincent's hospital where they took this quite seriously as they had just booked me in for hip surgery next week - on 8 December, but anyway yesterday I had confirmation from St V's that all would proceed next week! 
So I was released from Portland hospital feeling good - fluid drained, back pain eased and a date set for surgery to enable me to walk again. Brian and I immediately began making plans for this, because the period after surgery will be a long recuperative process as I basically haven't walked for 2 years. Pressure pressure to complete the Christmas shopping!
Now remember that bit about wondering when life will be boring and predictable? 
Today I had my routine appointment with my oncologist - and... the plans have changed. Basically the build-up of fluid on my lungs is indicative of the cancer becoming more active, although there is no way yet of knowing if this is happening slowly or if it will move with a bit more vengeance. Therefore to my disappointment, the surgery has now been cancelled for the time being!!!! The oncologist didn't rule it out as a possibility perhaps in Jan/Feb, as by then we will know more about the progression of this dratted disease. 
So yes, I am disappointed. 
Yes, I'm disappointed that there is less likelihood of walking.
No, I'm not sorry to miss the grueling rehab that was always going to follow the surgery.
Yes, I am glad I have more time to anticipate Christmas - its importance and also the wonderful traditions, music and services to prepare for. 

But just now I'm going to sit at the front window and enjoy the colourful vista of bright red roses and yellow proteas - the product of a creative God and a wet winter. 

 

26 November 2016 A Short Holiday and another trip to St Vincent's

Over the past week we have managed to fit in a few days away. 
It was months ago when we explored the possibility of a short break away, courtesy of Cancer Council Victoria (and the wonderful owners of accommodation destinations in Victoria). 
Our only prerequisite of course was for this to be wheelchair accessible, and we ended up at WorldMark Wyndham Resort in Ballarat. 
The original building (in Sebastopol) dates back to the gold rush era, and was built in 1878 by a wealthy landowner who lived there with his family of 11 children for 33 years when it was sold in 1911 to the RC church and became St Joseph's Boy's Home for 70 years. Different buildings were added over the years, until they were completely renovated some 14 years ago to become the amazing holiday destination it is today.  

The buildings are set in 55 acres, and that includes a small lake, lots of paths, activities and BBQ area - and that's not counting all the inside activities of a pool, gym, library and the like. Unfortunately the cool Ballarat weather was not conducive for much in the way of outdoor activities, but we managed a drive further north where Brian kept a sharp lookout for any native orchids.

(unsuccessfully)

 

 

 

Whilst in Ballarat it wasn't too far to drive to Melbourne for one more day of appointments at St Vincents' hospital - one more physician and an anaesthaetist. As before, they were very cagey about offering details of when my hip surgery might take place, other than saying 'very soon'. I would not be a scrap surprised if the phone call comes for me to present to hospital "early tomorrow" so I guess the bags will need to be packed and ready. 

Meanwhile we're now back home again, catching up and attending to the washing etc. 
Healthwise, we have been ok, though I have been a bit frustrated by back pain and Brian continues to be up and down. However we are very thankful for the positives in our lives, and for the opportunity to take a few days away thanks to Cancer Council Victoria.

A step closer...

Yes - things are a step closer!
We're thankful to have spent a night in Melbourne last night - and had the chance to catch up with Simon and Caitlin - and wow I can highly recommend a meal at 'Up in Smoke' if you want some tender Am'r'c'n-style BBQ meats.   

Then there was the 3 hours (including much waiting around) spent at St Vincent's hospital to be poked, prodded, tapped, bled, and swabbed, all the while answering a myriad of questions by 2 physicians and a nurse. At this stage all is looking good for surgery in the near future, though the date of 1 December has yet to be confirmed. 
Brian meanwhile spent the time reading the paper and having a doze in the car, before we finally were able to watch the high-rise buildings disappear from the rear-vision mirror and make our way home.

And now to repeat it on Tuesday of next week - where we need to return to St Vincent's to see one more preoperative physician along with the anaesthetist. It seems that in a big hospital like St V's, they have certain preoperative clinics operating only on specific days - for the convenience of the hospital and certainly not the patient. Then again, perhaps I'm just the lucky one that has to see every single one of these specialists. 

Meanwhile on our way home we received the very sad news of the cancer-related death of another dear friend, Brian Hill. I have special memories of Brian - as he started 'going out' with my house-mate and fellow teacher Anne, just after I started going out with 'my' Brian - and it seems some locals were a bit confused as to which teacher was going out with which Brian! Brian was an inspiration to others in the way he dealt with his illness, and the great confidence he shared of his future heavenly home. He will be sadly missed.
 

7 November 2016 Another appointment at St Vincent's

It's the end of another long day, having not long returned home from our latest appointment at St Vincent's.
The surgeon (Claudia Di Bella) had a slightly different story for us today, following her discussion with the team of orthopaedic specialists last week. She has now 'offered' me a procedure that would give my hip more stability than the cement alone, but that of course comes with the flip side of it being a longer procedure (3-4 hours instead of 1 hour) with a few extra risk factors thrown in. She called it a 'Harrington's Procedure', and this would involve a standard hip replacement augmented by steel rods, along with cement ('poly-'something'). It is a procedure specifically designed for hip/pelvic damage from tumour, and would give me more stability than the original procedure proposed. Now, however, we have to be in Melbourne next week (17 Nov) for a 2-3 hour appointment at St V's, and this will confirm (or decline) that I am a suitable candidate for all this to take place. If all goes ahead, I then need to return to Melbourne for an anaesthetist's appointment the following week before heading off to Melbourne yet again the week after for surgery. 
Goodness me, what a lot of fritzing around! It's hard for the 'system' to understand that we are making a 10-hour round trip each time we meet them in their convenient office. The only thing keeping me going along this path is the potential outcome - firstly 4-7 days in hospital, then perhaps 6 weeks of recuperation and rehab - and then confidence in being able to walk again! (My sister Jeanie says "oh well, more pain, more gain!")
But there's still those hoops to go through first, initially for the next appointment to ensure that I am suited for this procedure. If I'm not, then the surgeon could still probably do the less-invasive procedure of injecting the cement, though this would give me less chance of longer-term success. 
Your prayers would be appreciated as always.

 

26October 2016 YES!!!

I have just heard from the Orthopaedic Team at St Vincent's, and have an appointment for Monday 7 Nov, to discuss the procedure and sign the consent forms etc. Then I'll go on a waiting list for the procedure,
YEEEHAAAA! Perhaps I'll soon be able to do the 'air-kick' that goes along with this expression!!!

24 October 2016 A breakthrough (fortunately not through the hip... but concerning the hip)

At last – a breakthrough (or should I cautiously say, a possible breakthrough).

It’s unbelievable that it is 2 years ago that I first experienced pain in my left hip and began to limp. It took around 3 months before the staggering diagnosis came to light of a metastatic Stave 4 kidney cancer. Because the hip was severely compromised, I have been unable to weight-bear, hence I haven’t walked for almost 2 years, and have been wheelchair bound for most of that time, apart from some careful hobbling around with a frame. This has been quite a millstone for me to bear, as it has severely compromised my independence – especially things like independent driving. It has also placed a lot of extra responsibility on Brian’s shoulders, and there’s so many extra things I’d like to be doing for him too.  

So I was very disappointed in August last year when the Orthopaedic team at St Vincent’s decided that hip surgery was too invasive, and a less invasive procedure of injecting cement into the hip to stabilise the area of tumour was also not considered appropriate.

Ok – fast forward 12 months.

Here I am, responding well to a Targeted Therapy Drug, and feeling well in myself.  So much so, that I have questioned my oncologist as to the possibility of reviewing my left hip, and this has gone through all the processes of referral until I landed back to the same orthopaedic surgeon as before at St Vincent’s. When I updated my GP regarding this impending appointment, I commented to her that I’m not expecting a miracle, but just want to ensure that all possible options have been explored. I was heartened to hear her response, “my dear, you already are a miracle”! I say this because it is a reminder in whose hands I am in – and that God has indeed given me more earthly days than was ever expected at my original diagnosis. Thanks God!

Anyway my appointment was this morning, and I had no expectation of a successful outcome, so it was lovely to instead enjoy a catch-up in Melbourne last night with some of the family. After navigating our way through the end of the morning peak-hour traffic, we made our way past a series of very crowded waiting rooms, before presenting for our appointment, and after a short wait (that’s a miracle in itself) in we went. To my shock, the surgeon was very sympathetic and supportive of my request. After a careful review of last week’s CT scan, the surgeon pointed out areas where the bone has actually increased and pushed back the tumour (other areas showed tumour presence that has ‘eaten’ a chunk of bone, though this area has not increased).  Verbally, the outcome is that she recommends the non-invasive ‘cement’ procedure, and even asked ‘now are you available to come back here on Thursday, or how about Monday?’ (Actually, no I’m not as we are heading instead to a Renewal Conference at Mt Barker!) Basically, if she does this procedure, there are some risk factors, but the intended outcome is that I would be able to walk!!!!! Now that’s a total miracle to look forward to!

So I basically walked (wheeled) out of this appointment walking on air, wondering if I had truly heard correctly. Really? Walk again? Perhaps with the aid of a stick… but then again perhaps not? Would we sell the wheel-chair?

However – now comes Brian’s sense of reason, and perhaps my natural caution too. There are some hoops to go through first, the major one being that the surgeon needs to first discuss this with her colleagues (this will happen on Wednesday). There are also risk factors to be considered.

But for now, please allow me my excitement and also pray for God’s will to be done regarding my hip.   

I’ll update this blog when I know more – maybe as early as Thursday.