11 April 2016

Once again, I am delighted to report that I have been feeling remarkably well over the past few weeks - with virtually no pain. I am so happy about this that I asked the nurse overseeing my medications if she thought I could reduce some of my considerable number of pain relief medications, but she quickly responded that "if it ain't broke, don't fix it". In other words, enjoy and appreciate it instead of changing anything! 
Brian meanwhile is much the same - that is, some good days and some not so flash. I guess that's better than all days not so flash...

This morning I had a CT scan - this follows 3 months of being on the new immunotherapy drug. Last time I had a CT scan done here at Portland they had a lot of trouble finding a vein, but today before starting, the radiologist and nurse (both Christians that I know well) said a prayer over me, and boom, not a problem - they found a good vein first try! I haven't got results yet, possibly only next week when I go to Warrnambool for the next infusion. 

Less than 3 years ago, I had the privilege to be part of a Compassion Insight Group to travel to the Philippines and visit child sponsorship programs in action. Included in this group of 9 were my brother Geoff and Simon & Caitlin. We met many wonderful people, including some amazingly mature young adults taking part in a Leadership Development Program. One 17 year old girl Jessa, had just lost her sponsor, and so Simon & Caitlin took over this sponsorship so that she could continue in the program. 

Here she is on the left, at one of the Projects we visited. Such gorgeous kids!

The reason I mention this is that Jessa is graduating from the Program this coming weekend, so Simon & Cait are travelling to the Philippines for her graduation! They will also visit some other younger children who are being sponsored by people from S & C's church in Melbourne, so it is all very exciting for them. They'll complete their travels with a few days in Singapore with my niece who shifted to Singapore to live 2 months ago. This mother will be saying a few prayers for them, but trust that they will all experience a wonderful 2 weeks away. 

This envelope in our letterbox recently gives new meaning to the term "snail mail".

 

 

 

28 March 2016 ...and a lovely Easter it was too

The past fortnight has been very stable for me. 
I'm not quite sure why, but over the past 2 weeks I have not had any 'break-through' back pain at all, so I am reveling in this 'freedom' and doing all sorts of extra things, not to mention being able to thoroughly enjoy the Easter season with Simon & Caitlin as house guests.
However I know things can change very quickly for anyone on a cancer journey, so I'll simply enjoy the moment. Pain is such a pain!
On 23 March it would have been my mum's 97th birthday, and despite the fact that she passed away almost 2 years ago, this was one of those moments that I really missed not being able to arrange a visit to Horsham to see her, or ring her up for a chat. It reminded me of the time many years ago, not long after Brian's mum died, that 2 year old Simon asked me who I was talking to on the phone. When I said "that was Nanna" he asked "Was it Nanna in Horsham or Nanna in heaven?" If only we could!

I thought I'd be very organised for Easter this year, so early on, Brian and I bought a few Easter treats for the family in readiness for the season. But 2 days before Easter, I had a phone call from the pathology department of the local hospital. My heart sank as I had recently had bloods taken there, but then they informed me that I had won first prize in their Easter raffle! Brian had an appointment with the Diabetes Educator (he has Type 2 diabetes) at the hospital that afternoon so after seeing her we picked up our prize and then sneaked guiltily back to the car - hoping we wouldn't encounter her along the way! Anyway all was well, I became very popular, and family and friends didn't object to being to enjoy some early extra Easter treats.

Portland was abuzz with Easter visitors for the weekend.
We went for a short drive to see the gannet colony, and Simon and Cait went for a walk along the Enchanted Forest walk - part of a wonderful 250km walk around the forests and sea views in the Portland region. We also enjoyed a short walk around the outdoor market on Saturday morning. I discovered that being in a wheelchair does have certain advantages, as people readily smile and make way for me amongst the crowds. Simon found that it was good to follow behind me as I could then pave the way for him (he was also very helpful for me whenever we came to rough bumps or uphill treks).

The season of Easter rolled along with its myriad of emotions and it was good to participate in the different worship opportunities, from Good Friday and into Easter Sunday. 

After Easter Sunday worship

It's now Monday, and the house is much quieter today. Simon and Caitlin arrived safely back in Melbourne last night, watching very carefully for koalas as they almost hit one near Tyrendarra when they travelled here on Thursday night. We've got a koala again in the tree on our nature strip. Brian watched it climb up the tree, then promptly climb back down again. Perhaps it noticed that it had already eaten out all the new growth of the tree so there wasn't much left to eat. However, this morning it was back again so the pickings in other trees can't have been much good either.  

A happy, healthy and blessed Easter to you all!

15 March - Another Month Half Done

Another month half done indeed.
Every 2 weeks Brian and I travel to Warrnambool for my treatment. I've had 4 so far, and am very blessed to be suffering no side-effects from the drug (that I know of). The infusion  only takes about an hour (Brian reckons the bag looks like it only has about half a glass of the 'liquid gold' drug in it), but I'm one of the last people to leave before lunch-time as apparently there is a lot of paperwork involved with this drug while it is still in the trial stages.
Ah well, I guess that means we have to look for somewhere nice for a bite to eat before heading home.
My back pain seems to have eased somewhat, and I am better able to manage it with the assortment of drugs available to me. Brian meanwhile still has ups and downs, and after a really good patch, he has just had a few bad days - so disappointing and frustrating for him.

Otherwise I'm going along quite well really, keeping myself occupied writing church news for the local Portland newspaper, playing/singing in a church band, pottering in the garden here and there, lots of reading including some book reviews for my good friend Nicky for 'Abundant Life Books'. Prior to this illness it had given me much pleasure to work as a volunteer in the shop, which is filled to capacity with beautiful giftware, books, music, cards and the like. Unfortunately now I can't fit my wheelchair down the aisles!   
Last week Brian and I felt pretty 'energetic' (for us) so we drove to the nearby Portland lagoon and we were able to hobble and wheel ourselves right around the lagoon track. We enjoyed the bird life and had plenty of photo stops along the way. It was very good exercise, and worth the stiffness we experienced the next day!

This small egret reminded me of myself - trying to balance whilst standing on one leg!

 We are now looking forward to Easter, to the special services and being joined by Simon and Caitlin. 

 

Marching into March

Hair today, Gone tomorrow…

Actually that’s not quite true.

It’s been hair gone yesterday, and back today… kind of.

While I was on my previous cancer drug, I was gradually ‘thinning out’ quite a bit – though most people have been too kind to remark upon it (except for our poor ensuite cleaner). However there’s always a silver lining somewhere – and for me it meant that I didn’t need to shave my legs for approx. 10 months! Now that I am off that drug and onto the Nivolumab, my hair has started to re-grow (so out with the razor again). But most noticeable has been my interesting hair colour. My hairdresser burst out laughing when she noticed the distinctive bands of colour – from brown to grey/white and now… to black! 

Hmm… I think I’ll begin a new ‘rainbow’ trend. Any takers? 

One of the 'pleasures' of having an illness like cancer (if there are any) is the surprise visitors that have made a special effort to come for a visit. Last week I had a lovely catch-up with Jenny - a friend from my early teacher training days (at LTC). I refuse to believe it has been around 45 years ago that we regularly caught the Overland train between Horsham and Adelaide, laughed our way through 3 years of study, earned the princely sum of 40c an hour for babysitting (and 50c an hour after midnight), and learned how to master the twin tub washing machine without shrinking our very limited wardrobe. However that was the beginning of a long future in Lutheran Education for us both, and we had a very nice time reminiscing. 

No Jenny, it's NOT 45 years ago that we began our training at LTC. 

 Meanwhile the last couple of weeks have been pretty much the 'new normal' for Brian and myself. Every second Monday we drive to Warrnambool for my treatment - 3 down so far. Fortunately there are virtually no side effects, unlike many traditional chemo treatments and my back pain is unlikely to be related to the Nivolumab. However I am being given support and strategies to better manage the pain. I will be given more CT scans before long but they don't want to rush them as sometimes the initial trial results can look 'worse' before improvement is shown (says the oncologist, not me). 
Brian too continues to have ups and downs. He has had a very positive few weeks, but the last few days not so flash. Unpredictable! 
Nevertheless we do as many normal things as possible: stewing pears (Lorraine), taking photos of Jupiter (Brian), involving ourselves in music for worship (both) while Brian is enjoying getting his head into St John's School Council this year. 
Today, someone said to me that I must get so sick of life in a wheelchair - yes, yes, and yes! However there are still so many things that I can do, and that's where my focus needs to be. 

 

18 February

Well the last week or two have been a bit ordinary really, as my body adjusts to the new ‘Nivolumab’ drug. Some days have been almost pain free, while others (nights especially) have been just the opposite. However I am getting better at asking for medical help, so I now have a container filled with extra pills, lozenges or patches to use if needed. Of course this all takes time as it’s often a matter of trial and error before the best relief is found.

Things I am hoping for this week:

•          that the immunotherapy drug is working, and ridding my body of every last cancer cell.

•          that the best pain relief is quickly found (or better yet, that my back pain stops completely, so that no pain relief is needed at all)

•          that the barking dogs next door come down with a severe throat virus that might bring some peace into the neighbourhood.

•          that Brian’s ‘good’ days coincide with my ‘good’ days. Then again, perhaps it’s better that one of us has a good day at a time, in order to manage the daily meals.

•          that no local druggies ever discover what there is in our house – I’m sure they’d think it would be well worth a raid if they but knew...  

Things I am thankful for this week:

•          the messages of love and the prayers that have lifted us up.

•          God’s amazing promises – a new one emailed to me daily by an amazing friend.

•          (from Brian) the opportunity to enjoy a 50 years High School reunion – and trying to recognize who all those ‘old’ people were!

•          The ‘gentle nudges’ that I receive to update this blog, even if I don’t think I have anything worthy of note to say.

•          Wishing grand-daughter Lauren a happy 6^th birthday.

•          Romans 12:12 – texted to me by another dear friend