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.

17 October 2016

I’m sitting here alone. Brian is out at a Men’s Shed night, the rain is pounding on our flat roofed house (as it has done frequently this season) and I’m trying hard to be interested in eating. I’ve discovered that with the variety of heavy drugs I am on, it takes very little to upset the equilibrium so if it’s not minor nausea, it’s far more likely to be either constipation or diarrhoea – or even all three. Today happened to be the day of my CT scan – and because this involves some fasting, then drinking a litre of rather unpleasant liquid, not to mention the injecting of iodised contrast fluid – my body’s been decidedly offish all day. It’s the means to the end I guess and as it’s been over 12 months since I have had a review of my left hip I’ll be interested in the results, and also to check the progression (or rather lack of) the disease. I’ll get the results back later this week which will be helpful as I have an appointment next Monday with an orthopaedic surgeon from St Vincent’s. This will either close the door to any future hip restoration or open it all up to who knows what possibilities. However I’m sure CT scans are different in Portland compared to anywhere else. Today the nurse assisting was a friend from church, and as she led me to lie down for the scan, the protective pillow cover had hand-written on it “My Presence will go with you, and I will give you rest. Exodus 33:14” Now where else could you get such personalised service??

In the meantime, Brian and I have been quite busy of late with work on our various committees, attending meetings and appointments, enjoying the company of Simon and Caitlin for the weekend, and having a lovely birthday chat with our grandson Liam on his 11th birthday today.