29 August 2015 Saturday

I'll log a quick blog this afternoon, though there is not much change to report.

I am continuing to take life pretty easily here at the Portland hospital. 
Each day I think I get just a little bit stronger, and I am now off all my 'heavy' drugs (except for the steroid drug which is being slowly reduced). I am pretty much back to being on what I was on before everything 'blew out', and I will continue to reduce pain medication as my back continues to heal. Pain release was a major factor in this surgery and that seems to be happening a bit more each day.

There is a set of light exercises that I have been given and I try to do these every time I look up and see the whiteboard in front of me (sometimes my eyes deliberately turn the other way!) However the better I can do the rehab the quicker I am out of here. It is basically a case of being able to move around independently from one device to another, and when I can do it all without help I will be able to return home. I am getting there slowly - not sure how long in hospital yet. There is still a personal goal to attend a family wedding in Melbourne in two weeks time (on 12 Sept) and I believe that is still a firm possibility. So here goes!

Brian has managed to catch up on a lot of the daily duties of returning to home. Although it looks quite cool outside he has gone for a therapeutic drive into the bush this afternoon - perhaps there will be some green hood orchids out or an elusive bristle bird to photograph. I keep looking out the window just in case  a Southern White whale happens to swim into the harbour - which it did last week. 
I seem to miss them every time!

Well, time for me to pick up my little 1 kg dumb-bells and have another go.
Until next time!

27 August 2015 Back to Portland... with a twist

Well I'm sitting in bed back in Portland hospital, and whenever I look up I see more of the lovely Portland harbour vista before me. How nice! That is not to say I haven't appreciated being at close proximity to the specialist care in Melbourne, and particularly the loving ministrations of siblings, Simon & Caitlin, and chaplaincy support. 

Yesterday was transfer day, and a long day it was too. 
It began early in the morning with the news that an ambulance was not yet organised so probably wouldn't happen. Grrr. Before long the news changed again and I was informed that I would leave at 1pm, bound for Portland - approx a 5-hour journey with a minor detour to pick up another patient from the Royal Melbourne hospital to drop off at Geelong. 
In due course, two lovely, caring ambo ladies arrived and I was strapped into the ambulance, and off we set - one lady at the wheel, one poor soul with a terribly tickly cough most of the journey, and one stirring around with reflux, and a full bladder (guess which was me?)
So off to the RM hospital. 
This is where the plan changed, as the transfers from hospital to ambulance never only take a few minutes - and each end extended the trip by an extra hour. The 5-hour trip to Portland had now blown out to 7 hours. 

But as this prospect was getting more daunting to me by the minute, a most unexpected intervention occurred. The gentleman patient beside me began to chat and we exchanged our personal stories. All I know is that he is Lindsey from Grovedale, a Christian, and I wouldn't know him by sight as I didn't even see his face. During the ambo journey we began to pray - hands clasped beside each other - and there was a great sense of peace over the ambulance. 
One of the ambo girls turned around and said, "Oh that was so lovely" - and it was too! I will never see this man again, but what a blessing to share such an intimate moment!

After the 7-hours I finally arrived in Portland at 8pm, and what a welcome to smell the sea air, and to relax into the familiar kindness of the local staff (not to mention relieve an aching bladder!)

Today has been spent seeing all the local specialists, the pharmacist, my oncologist and the like, and I have been happy to relax and do very little. My back is a bit sore (hardly surprising) but also because I am now off all the heavier medications. I'm glad to be off them, though I certainly acknowledge their role in pain management. 

Brian too is happy to be home - getting back to normal things in the house, washing the car, shopping and visiting his dear wife!

25 August - Lorraine again - with a plan!

A plan... yes!

This morning I was awakened soon after 6am with a troupe of some 10 people from the neurosurgical team- not the best time of day to get your head straight with questions etc you want answered with bleary eyes and bed hair!

Never mind, the head surgeon came around later with his apologies and we have negotiated the following plan.
1. The neuro team are very happy with the progress of this operation and all is going very well. They have basically done their job now, and unless I (or my specialists) ask anything more, we will simply get the reports and are done with this team.
2. Orthaepedic Team: The disappointing news is that there are changes in their thinking regarding future treatment. Firstly, they have expressed NO weight-bearing on my left side. I had been doing a little bit as it gave me no pain, but it is clear this can no longer continue. This means I am definitely wheelchair-bound. They have also said that the less-impact procedure they originally suggested (involving injecting cement into the bone gap in the acertabulum (space above the hip joint) is no longer appropriate or able to be done. This leaves them saying that the only way I could improve this joint is by a complex total reconstruction - again not appropriate because of the complexity of the procedure. Disappointing , but that's just where things are at. 
3. Rehab: As I recuperate from surgery I will also get back into rehab, with a strong emphasis on upper body strength. The good news is that I do not have to remain at St Vincent's hospital for this, but am expecting to be transferred by ambulance to Portland tomorrow! That's pretty exciting, and great for Brian to be able to be back home again. 

So that's it  - a plan to be back home to Portland again soon! The step from Portland hospital to back home will depend on the rehab progress. 
So far all is going well!


 

24 August - Back to Lorraine!

Yes it's me again, and how good it is to come out of the onslaught on body and mind!
The effect of the surgery has surprised me, particularly the confusion after a lengthy spell under anaeshetic. But it's over now, and I am very thankful for the prayer coverage over this operation, as all has gone well. One major risk factor (and prayer point) was the need for bleeding to be curtailed and the surgeon said he was delighted at no need for a transfusion. He also said it was the longest row of stitching he had ever done, and was quite proud of his handiwork! 

My progress is going very well, and each day another tube has been disconnected, until today there are none left. Yay!
At this stage the plan (subject to change of course) is to leave St Vincent
's hospital on Wednesday or Thursday, and be transferred closer to home, either Warrnambool or Portland. Yay again! I can then get stuck into more rehab. 
Before I leave this hospital, I expect to have some sort of a plan in place, regarding continuation of treatment. We'll see, as teams of different treating specialists are notorious for their lack of communication with each other.

So thanks for your love and concern, felt in a timely so often just when it was needed. Today I had a shower - a quite gruelling experience - but on coming out I had received a text with just the right words awaiting me. That's God for you!
Love to everyone Xx

21 August 2015 - More Post Surgery

Brian again

Found Lorraine this morning sitting in a chair preparing for a face-wash and change of bedding. She had seen the surgeon earlier and was told that all they had hoped to do had been achieved, including removal of most of the tumour at T7.

Nothing more to report at this stage.

Thanks once again for all those continuing to pray for us.
Brian

20 August 2015 - Post Surgery

Brian here again

As planned Lorraine went into surgery at 8.00am this morning, was in Recovery at 3.00pm and back in her Ward bed at 5.30pm. It appears that all went well with the operation and other than being still very drowsy and sore Lorraine seems to have coped well. I cannot expand on how the operation went as I have not seen any doctors yet. Hopefully I will get some more information tomorrow which I will pass on.

Lorraine is now in Ward 9 east wing Room 19, she was moved on Wednesday.

We would both like to thank you all for your prayers and hope you will continue to pray for Lorraine's recovery.

18 August 2015 Lorraine's Surgery Plan

 Brian here again

For those interested in medical details read on :-

Lorraine’s Surgery scheduled 8 am Thursday approx. 6 hours

Surgeon will insert 2 rods on either side of back of spine, above and below the collapsed discs

 T7 and T12 and will insert screws except where discs are collapsed

He will do laminectomy inside T7 to relieve pressure on spinal cord, and remove what tumour they can get out (which can’t be seen on the MRI). He won’t do laminectomy on T12 as the operation would take too long ( up to 12 hours)

Result:-

That section of spine will be straight and locked in position but that’s  an OK compromise as most movement is above and below those points.

The back pain should be relieved from this surgery, and laminectomy on T12 could take place at a later date if needed.

We’d appreciate prayer for:-

1. Against bleeding during surgery

2. Protection of spinal cord

3. Steady hands and clear minds for surgical team.

4. Lorraine’s recovery

Thank you for your continuing prayer.

17 August (B)!

For some technical reason, I wrote up a small blog a short time ago and it has situated itself prior to the 15 August instalment!
So if you want more info and a couple of pics, just scroll down a bit!

15 August - Lorraine again

Back to Lorraine again...

Well here I reside at St Vincent's hospital, quite comfortable and undergoing continual obs and 'plan' making. 

We had a comfortable trip to Melbourne - mainly because my back pain has lessened dramatically since I was put onto a strong dose of the steroid drug Dexmethsane.
Last night I spent around 2 hours being ultra scanned, xrayed and MRI'd. On the basis of these tests, I have had discussions with the neurosurgical team who plan surgery early this coming week, don't know exactly when. The two affected spinal vertebrae have further collapsed, one more than the other, so they cannot be left unattended, though the prospect of the surgery is quite complex. They are still determining the pathway, and of course the fact that it is a weekend makes everything a bit slower to organise. .
Something positive that has occurred is that yesterday I had a visit from a member of the orthopodic team, to let me know they are also reviewing the scans to determine possible options for my hip - who knows, I may be able to throw away the wheelchair yet! At last some communication is happening between these teams and I am thankful for that. 

So the plan that I currently know of is that I will remain in hospital until they have finalised everything for spinal surgery. As I said, I am comfortable, and spending time quietly, doing sudokus, a bit of reading and enjoying some visits from Brian (who is staying with Simon and Caitlin - thanks guys and also for your visits). 
I appreciate your love and prayers, and particularly ask for prayer that the spinal team would be given wisdom to determine the best possible procedure, and that God's hand is over the whole process. I still feel at peace with all that is happening, and if that's not a 'God-thing' I don't know what is!

 

13 August - What a difference a day makes...

What a difference a day makes indeed!

It seems that whilst we are still packing to head away for a few days the destination has changed.

Sadly – no rolling mountain ranges and delightful Grampians fauna and flora to be found. Instead it might be a few traffic jams and high-rise concrete – from the vantage point of a St Vincent’s hospital window.

It all changed quite rapidly.

Over the past weeks I have been experiencing more and more back pain, and been given increasingly high doses of medications to combat it – including fentanyl “lollipops”, which are very effective in the relief of severe pain by ‘rolling’ them around the inside of the cheeks for up to 20 minutes (when they run out). They have a not unpleasant flavour – and I can say they do really help as pain relief begins within approx 5 minutes.

Other than pain, I have also been experiencing a general ‘wobbliness’/unsteadiness and weakness of the left leg as well as some tingling in the right – all possible symptoms of spinal cord compression.

But it was the Warrnambool GP who visited us today that got the ball rolling in no uncertain terms, and the upshot is that after her communication with the Melbourne neurologist, we are now leaving first thing in the morning bound for St Vincent’s where it is expected that I will be admitted. After that who knows – but I have been advised not to eat during the morning in case they want to get stuck into surgery. I can’t really believe it would all happen so quickly – but we’ll just wait and see, and keep you posted too. As for me, I’m in a bit of a daze, just wondering what needs to be packed (and what needs to be charged up!). 

I feel at peace about it all, knowing that I am in the best of hands – and I’m not talking about Mr Tiew Hann either! Please pray that this peace continues, whatever may come about. Pray also for Brian who is fortunately well enough to drive again following his recent foot surgery. What awesome timing!

Just by the by, if anyone chooses to leave a comment at the end of these blogs, I have had some settings changed to make this easier. I THINK you just need to click on the post title of the blog entry and then type in your comment at the end of the entry. Hopefully that works.

Blessings to you all!

Yep... this is what it feels like at times

10 August 2015

I’m sitting here trying to work out why I am so mesmerized by ‘The Great Australian Spelling Bee’ (not surprisingly, Brian’s preference is Top Gear.) I must be missing the school environment more than I thought!

It’s been a pretty ordinary week, but that’s quite good really.

I’m relatively stable and have been participating in the usual weekly programs of exercise and trying to manage daily household tasks as best I can. Back pain continues to haunt me, making some activities a bit more challenging. Later this week I will have a home visit from a Warrnambool GP who specializes in palliative care and pain management. I will be interested to hear of her suggestions, and what she has to say about priorities in my case management.  

On Saturday I will also spend some time with a local Psychologist, who happens to be in our home bible study group. Amongst his areas of expertise, he offers pain hypnotherapy - I am happy to try anything for relief that doesn’t necessarily involve dosing myself up to the hilt. Who knows?

But whenever I have felt the going a bit tough, it never ceases to amaze me how a timely card, a letter, a text message, a bunch of flowers or even some gluten free muffins just arrives out of the blue. You may never know how much this ‘lifts the spirits’ and what it means to us. Thank you!

Today it was Brian’s turn to have a Specialist appointment. Because of his Parkinson’s Disease he is under the care of a neurologist from Geelong, and today for the first time we had a remote appointment via skype. What a saving in time and effort – a 7-hour round trip for a 10 minute appointment reduced to driving just 5 minutes down the road, and with his GP present as well. Why aren’t there more such appointments?

However Brian continues to baffle his specialists with some of his symptoms, so he is being changed to a different Parkinsons drug, starting tomorrow. Hopefully the possible 3-week period to adapt to this drug won’t bring side effects.

The other day I checked our calendar and to my surprise discovered that we have a whole week coming up with no significant appointments! This seemed too good an opportunity to waste, so we have decided to go away for a short holiday break next week to Dunkeld, staying at a holiday house that has been purpose-built for wheelchair access.

How lovely to look forward to a few days away, no medical tests, just time to relax and take a few drives into the Grampians should we choose! Perhaps Brian might even find an orchid or two to photograph?

I’ll let you know how we go…

If we can't get to band practice, band practice comes to us!