22 May 2015

There’s been a little bit of movement afoot.

When I rang for an appointment with the neurosurgeon who visits Warrnambool, I discovered there are no appointments available in Warrnambool until September. The next option is to travel (again) to St Vincent’s Hospital in Melbourne and they happened to have a cancellation for next Tuesday (26 May), so that is what we have taken. Mind you, I had a phone call about an hour later from the receptionist, saying that they just had a cancellation for that afternoon and would I like to take it (in around 2 hours time…)

So we’ll see what the neurosurgeon has to say about stabilizing my spine. We are hoping to do a trip there and back in a day, so hopefully our bodies can cope with that.

Brian had his procedure on Wednesday – came through it fine, but has been sore and uncomfortable ever since, so we hope that settles down very soon. It can apparently take up to two weeks before we know if it has been effective for him or not. If he is unable to drive to Melbourne on Tuesday, we have a friend teed up with Plan B!

I had an interesting email the other day from my 9-year-old grandson.

“Dear Nan, Do you have superpowers? Love Liam”

Hmm, that one was fun answering!

18 May 2015

Several weeks have passed since I last updated this blog, and I have been getting some subtle reminders so I guess I’d better get into it! Thanks to you all for your continued interest, concern and prayers. It means a lot to know that although Brian and I have to take a quieter profile, you haven’t forgotten about us.

Over the last couple of weeks there have been some delightful surprises, including:

·         A packet of licorice tea to enjoy (nearly as refreshing as licorice ice-cream)

·         A packet of new Lindt Sea Salt Caramel chocolates to taste-test – an interesting taste sensation

·         A lovely visit from Simon & Caitlin

·         A veritable army of helpers to help us prepare for and celebrate Adrian’s 30^th birthday.

·         And even a glorious autumn day today to enjoy a drive with Brian around Bridgewater Bay and along dirt roads through the native bush at Mt Richmond.

Adrian’s birthday party provided a wonderful example of the amazing community of family and friends who surround us. All it took was the suggestion, and friend Jen took off with the idea and became my hands and feet in pulling together an open lunch after church on Sunday! The hall was decorated in red and blue (Adrian’s cricket club colours), delicious food was supplied by numerous wonderful friends and over 50 people enjoyed lunch, games and a chat, and duly celebrated the occasion. I felt so unbelievably blessed last night as I reflected on this. Perhaps I can even say I am thankful for the ways Brian and I have been forcibly disabled, because this has highlighted the generous and servant hearts of those around us. I thank God for them all.

Another proactive effort for me has been to finally get my act into gear and organize to go twice a week to the swimming pool for exercise. It must be doing some good as I am quite stiff afterwards, despite the gentle nature of the exercises. It is quite good to be in the heated pool as the water gives buoyancy and support, and I can exercise different muscles. Between swimming and my twice-weekly exercise program I have never in my life been so proactive about exercising! Considering my otherwise enforced inactivity, it must surely be helping??

Health-wise, nothing much has changed.  My oncologist roared with laughter after chatting with me about my recent visit to the orthopoedic surgeon when I commented about her possible intention to inject concrete into my compromised pelvic bone – cement is the word, not concrete! I’m on a steep learning curve!

In the meantime I am being referred to a neurosurgeon to investigate how my spine can be stabilized. I haven’t heard yet when this appointment will take place but after exploring several possibilities, we will be seeing a neurosurgeon from St Vincent’s hospital – Mr Tiew Han – who travels to Warrnambool to consult with patients. This would be a huge help for us - if surgery is required it would take place at St Vincent’s but all pre and post appointments would be much closer to home. Interestingly, Tiew Han is the same surgeon who operated very successfully on Brian’s neck 4 years ago (inserting a plate and 6 screws) so we feel quite happy about that as we were happy with his professionalism and care.

In the meantime, on Wednesday this week Brian will undergo a procedure here in Portland hospital which we hope may help with his debilitating bladder problem. It is just a day procedure, but we are praying for anything that will help relieve some of his uncomfortable symptoms. 

 

 

 

Adrian's birthday - Sonya I need you, I'm getting too short!!!

Don't photos make great cakes!

4 May 2015 To Melbourne and back

It’s been a full couple of days, beginning with the 5 hour trip to Melbourne yesterday. I wasn’t sure how I would manage the drive with a dodgy back – but all went well. I guess sitting in a car is really not much different to sitting in a wheelchair. Brian and I stayed with Marlene and David, and caught up with Jeanie and Pete, Hannah and also Simon and Caitlin – fresh back from their work and holiday trip to Europe. Lovely to see them all.

This morning’s appointment was at St Vincent’s hospital, and after waiting an hour in an overcrowded waiting room, we finally got to see an orthopaedic surgeon named Claudia Di Bella. She was very kindly, but unfortunately my left hip/pelvis seems to defy the ‘easy-fix’ scenario.

Firstly, I had hoped to get some sort of plan as to whether it is best to surgically tackle the hip first, or concentrate on the two areas of concern on the spine. I now realise that these surgeons are more specialised than I thought, and Claudia was really only able to advise me of the pelvic region, not the spine.

As far as the pelvic area goes, again there is disappointment. The main method of treatment in my scenario is to fill the ‘eaten’ section of bone on the left acetabulum (just above the hip ball and socket) with concrete. This would normally be secured with a pin from the top of the pelvic bone (the iliac wing). However in my case, she said that it is unbelievably bad luck that the top of this bone has also been compromised by the cancer. Their only way then is to inject the concrete from the side, not as secure, and with some risks.

So where to next?

It will probably be another trip to Melbourne to another hospital (possibly the Alfred) to determine what can be done with the fractures and stenosis at T7 and T12 (crushed vertebrate along the spine). This would likely be done prior to any possible hip surgery, in order to secure the spine and protect the spinal canal. If this can be secured first, it would make rehab easier and safer for recovery from hip surgery, if this proceeds.  

Sigh...

I am disappointed of course, partly at my naivety in thinking that perhaps there might be a logical and straight-forward solution. I’m also disappointed that I won’t be able to dispose of the wheelchair in the short-term. This is becoming quite a test on my levels of patience and endurance!

Meanwhile, we had a good trip back to Portland this afternoon, in beautiful mild Autumn sunshine.

Yes I’m disappointed, but tomorrow is a new day, and I will probably make a phone call to my oncologist to consider arrangements for the next referral to a spine specialist, possibly a neurosurgeon. Let’s see what that will unearth!