I know the taste of victory

I’ve been having some timeout to recover from the surgery but felt that the end of the year deserved to be marked in some way. The recent death of George Michael made me think back over some of my favourite song lyrics, so here is a status report in song:

Well I guess it would be nice
If I could touch your body
I know not everybody
Has got a body like you (Faith by George Michael)

Unfortunately almost everybody who wanted to touch my body had either a needle or a scalpel in hand (we are trying to forget the bone saw thingy). I know it’s important but sometimes all the invasion of what used to be your private space gets to you.

Oh, rhythm of my heart
Is beating like a drum (Rod Stewart)

Well I think it is. Before surgery I could take my pulse by putting a hand almost anywhere on my chest, abdomen or neck. I could hear my blood pulsing through my ears. Now there is just quiet. It took a bit of getting used to but I love the peace and quiet. I can now hear the weird noises my bowels are making! I am now on annual checkups for my heart which is fantastic. The cardiologist said the only way my heart could be better would be to have my original heart with no illness. For those who are interested my new heart valves are made from the heart of an American cow, stitched into a new valve in Vietnam. I am NOT an old cow or Born in the USA although both have been suggested.

Hello, I love you, won’t you tell me your name? (The Doors)

Classic chat up line from my youth. Another brilliant lyric. I am still a bit vague in the memory department. The more tired I become the worse my memory gets. It’s become an indicator that the family is getting used to watching out for! I think it’s just the deep seated fatigue due to the operation and having a large tumour in my liver. It doesn’t help that I get frustrated when I forget something the moment after I have been told it, although some friends assure me it’s just old age! Particularly if I have been introduced to someone and then can’t remember their name.

These boots are made for walking,
And that’s just what they’ll do (Nancy Sinatra)

I’m enjoying walking again and can walk around the shops, to a cafe or just round the house all day doing basic housework again. With good energy levels I can do everything I used to – washing, shopping, cooking etc. The only things I struggle with are heavy lifting, reaching for high or low shelves or long periods of driving.

I’m never gonna dance again, guilty feet have got no rhythm (George Michael – Careless Whisper)

One of my favourite lyrics (who didn’t swoon over George singing Careless Whisper?) but now I need to substitute “tired” for “guilty” feet. I can sing again now the breathlessness has gone but dancing is a bit beyond me at the moment. We have the dance party at our church camp coming up in early February so that will be the big test. Generally tiredness is still an issue, but a different sort. I am tired now because I am more active so it’s just a matter of getting used to what I can manage each day.

So 2016 is a year which I would like to forget in many ways, but a year that restored me to an almost normal life. 2017 will be another challenging year as we look at options for treating the cancer. I’m on holiday and having a rest from testing and making decisions about how long or how well I want to live. I’m going to take a break from writing on this blog for a couple of months but I know it’s valuable for many of you who don’t see me on a regular basis and communication is more fun when we can talk about other things. So I wish you all a Happy New Year and leave the last words to George Michael and Aretha Franklin:

Like a warrior that fights
And wins the battle
I know the taste of victory
Though I went through some nights
Consumed by the shadows
And was crippled emotionally
Somehow I made it through the heartache, 
I escaped
I found my way out of the darkness, kept my faith
Kept my faith

And the river was deep I didn’t falter
When the mountain was high
I still believed
When the valley was low
It didn’t stop me
I knew you were waiting
Knew you were waiting for me

I know the taste of victory

Looks like we made it

Looks like we made it
Look how far we’ve come, my baby
We mighta took the long way
We knew we’d get there someday
(You’re still the one by Shania Twain)

The last fortnight has just been a blur and while some of you may have kept up with my progress I’m sure others have missed out. This could be a longish read so make a cup of tea/coffee, sit back and relax……

First of all a quick summary: I have been to Auckland and had two heart valves replaced which had been damaged by my cancer. The surgery was a huge success and I feel 20 years younger. Thanks to everyone for all their kind support, prayers, messages, a few visitors and of course my family, particularly Andrew who was a trainee nurse for part of this process! He did very well but has thankfully returned to being an engineer and home based caregiver.

Now I’ll fill in some gaps. As most of you know we were pushing to have this surgery considered by my specialists. There are only 3 – 4 operations exactly like mine done each year, all carried out by a specialist team in Auckland. One thing you learn having a rare or
uncommon disease is that there is a much higher number of people who have rare or uncommon diseases than you think. So the specialists who see them can be dealing with several different rare diseases in a single day, hence the need for different hospitals to focus on different highly specialised areas. For me it was a massive relief to arrive in Auckland and hear doctors talking about my NET cancer and carcinoid heart disease as something they dealt with all the time.

I was booked for an MRI scan late on Tuesday afternoon, at the University which has the best scanner in the country. The cardiologist identified a large amount of excess fluid sitting on my chest and I was admitted straight into hospital. Without going into details, I
became very familiar with the toilet and lost about 4 kg (of fluid) in about 18 hours. I’m not quite sure what is meant by “excess fluid” but I now know that a lot of my recent problems were caused by it. My ankles were completely normal (the usual sign of excess fluid is swollen ankles and legs) but my abdomen was bloated and tight, I felt like I had an elephant sitting on my chest and I had been having trouble swallowing food.

I don’t remember much of the next couple of days although sometimes bits of memory come back. (Andrew swears I came out of the anaesthetic and told him what a wonderful husband he was and then suggested we build another house!). As I started to come round the first thing I noticed was how well I felt. The MRI scan had shown that the only damage was to my valves and there was not any damage to the actual heart muscle, meaning that replacing the valves solved the heart problem. I felt enthusiastic, healthy and active compared to the recliner-chair-potato I had become. When the surgeons were operating
they noticed that my liver and other organs were also pulsing, almost as if my whole body was trying the help my heart do its job. This stopped when they replaced the valves. It explained a lot of the odd sensations I had experienced, the constant sound of blood pumping in my ears, the pulsing sensations in my abdomen when I was trying to rest and at times a weird feeling that my body was like a metronome or clock with an annoyingly loud tick every second.

I recovered quickly and was ready for discharge on Thursday, exactly one week after surgery. We had our plane tickets and were ten minutes away from leaving the hospital for the airport when Air NZ rang to say a recent policy change meant that I couldn’t fly with them until at least ten days after the surgery, in spite of having clearance from the top cardio thoracic surgeon in the country. I don’t want to dwell on this but we drove back to Christchurch and will be eternally grateful to those of you who provided practical help and moral support during this time.

I continue to heal well and am now nearly the same weight I was on my wedding day! Not a weight loss plan I recommend but it is so good not to be carrying around all that excess fluid and to have a heart that WORKS!!! It will be New Year before I officially finish the three month healing period, mainly due to the need for my breastbone to completely heal (no, I still haven’t asked how they cut or broke through it. I’m sure it wasn’t a chainsaw as suggested however.) Then there will be a longer time of strengthening my heart muscles and regaining the stamina/energy I used to have.

For us, as Christians, there is the underlying question about faith healing and the impact (or not) the thousands of prayers made on my behalf has had on the outcome. Here is how I see my experience:

  1. The medical and surgical team I had are the best in the country. They were professional, skilled, articulate and reassuring towards us as circumstances required. Their expertise played a huge part in the success of the surgery and my quick recovery.
  2. The timing of the surgery was perfect for me to receive the most benefit from my new valves. We had been asking about a review of my treatment plan by the Auckland specialists for a number of months, there had been communication breakdowns and no-one in the Christchurch cardiology team was supporting my request for surgery. Immediately following some very specific prayer, the communication gap was fixed
    and I was referred to Auckland. A delay of a few more months would have meant I may not have been accepted for surgery or that I would have received a lesser benefit from the surgery.
  3. I had become very anxious and panicky this year as I could feel my heart deteriorating. I had a panic attack with a simple CT scan and was staying at home more and more to avoid unfamiliar situations. I struggled to make very simple decisions. The moment the surgery was fully confirmed I became relaxed and calm. I’m sure there is a logical explanation for some of this but I have never felt more peaceful than I have over the last few weeks, which really should have been the worst few weeks of my life. Coming out of surgery I sensed that I had been given a new life to live and have been buoyed by an excitement and zest for living that has surprised me. People have been stunned by how quickly I’ve recovered and how well I look.
  4. I still have an incurable cancer but, now my heart has been repaired, treatment options are open to me that mean living with cancer for many years is entirely feasible.

I firmly believe that God can completely heal me anytime He chooses to. I also know that medical skill and knowledge are important in my treatment. What this experience has shown me is that God will walk with me through my whole life, no matter how scary or difficult the circumstances are. I found that prayer is important because it builds a community of people united in one purpose and this makes them stronger. That God hears all our prayers and answers them, sometimes in a different way to what we expected but always with a better outcome (as parents did we give our children all the things they asked
for? No. But we gave them what they needed and wanted, always being there for them and loving them). I learnt that no-one deserves or can earn the “right” to demand that God heals them. Healing is a gift that He can freely give but His love is a constant that stays with us no matter what.

Obviously we will continue to pray for a complete healing from the NET cancer but are open to however God wants to do it. My experiences have given me an empathy and understanding that can encourage and support others going through similar circumstances, which a miraculous healing may not have done. I have not become a saint overnight but I do believe I am a far better person than I was. And after all isn’t that our life goal?

Looks like we made it

I’ve heard the tender whispers of love in the dead of night

I’m not sure where the last week has gone but tomorrow afternoon we’ll be on our way to Auckland for my heart surgery. I don’t have much to say today except that Tuesday (MRI scan at 4.30) and Wednesday will be meetings and further tests before the surgery on Thursday (8am). A post-surgery update will be posted here but it may not be for a couple of days after Thursday depending on what’s happening.

So today you can have a whole song, one we sing often in church. Sometimes it’s only when we go through hard times that we are quiet enough to hear God’s tender whisper of love in the dead of night.

Oh, I’ve heard a thousand stories of what they think you’re like
But I’ve heard the tender whispers of love in the dead of night
And you tell me that you’re pleased
And that I’m never alone

You’re a Good, Good Father
It’s who you are, it’s who you are, it’s who you are
And I’m loved by you
It’s who I am, it’s who I am, it’s who I am

Oh, and I’ve seen many searching for answers far and wide
But I know we’re all searching
For answers only you provide
‘Cause you know just what we need
Before we say a word

You’re a Good, Good Father
It’s who you are, it’s who you are, it’s who you are
And I’m loved by you
It’s who I am, it’s who I am, it’s who I am

’cause you are perfect in all of your ways
You are perfect in all of your ways
You are perfect in all of your ways to us

You are perfect in all of your ways
You are perfect in all of your ways
You are perfect in all of your ways to us

Oh, it’s love so undeniable
I, I can hardly speak
Peace so unexplainable
I, I can hardly think

As you call me deeper still [3x]
Into love, love, love

You’re a Good, Good Father
It’s who you are, it’s who you are, it’s who you are
And I’m loved by you
It’s who I am, it’s who I am, it’s who I am

You’re a Good, Good Father
(you are perfect in all of your ways)
It’s who you are, it’s who you are, it’s who you are
And I’m loved by you
(you are perfect in all of your ways)
It’s who I am, it’s who I am it’s who I am

I’ve heard the tender whispers of love in the dead of night

My little calendar girl….

Yeah, yeah
My heart’s in a whirl
I love, I love, I love my little calendar girl
Every day (every day)
Every day (every day)
Of the year (every day of the year)

But especially on the 29th September – yes I now have a surgery date. We’re still waiting to confirm dates for pre-op testing and for post operative care so we can book flights to Auckland etc. We have accepted an offer of accommodation from a friend who lives just a few minutes from the hospital, so thank you to everyone else who kindly offered us a bed. That is all the information we have at the moment but I’ll let you know more when we get it.

Today’s song was brought to us by Neil Sedaka. Who? Exactly! Here’s a starter question for ten points: name one other Neil Sedaka song. Having just annoyed you all I think I’ll sign off for today before I get into any more trouble.

My little calendar girl….

The first cut is the deepest….

I would have given you all of my heart
But there’s someone who’s torn it apart….

The first cut is the deepest
Baby I know the first cut is the deepest

This is a classic sung by Rod Stewart and many others. I’ve been saving it for an auspicious day…. Yes my heart surgery in Auckland was confirmed today. We got a letter yesterday and I’ve spoken to the actual surgeon today. He’s answered all my questions and so now we move on to scheduling the surgery.  I’ll be in Auckland probably within the month, we’ll have a couple of days meeting doctors and having tests then the surgery.

Its been a big day so I’m off to bed. Just wanted to let you know and say thanks for all your prayers and kind words. I’m not sure how much visiting etc I’ll be up to in Auckland but I’ll fill in some details closer to the time.

The first cut is the deepest….

Operator….. Information….. Please give me Jesus on the line

I listened to this classic song quite a lot as it was on a favourite Manhatten Transfer CD (Java Jive was my favourite song on that CD). If you have no idea what I’m talking about, Google it! You young ones missed out on some great music. I haven’t heard anything from the Auckland cardiologist and so I’ve decided not to worry about it. My oncologist reminded me that my heart damage is only one of the problems I’m dealing with and I am still quite healthy, reacting well to fairly low doses of medication. He suggested trialling a new system where I let him be the doctor and I could just be the patient for a while. Radical thought, but it is nice not to have to look up all those big medical words for a change.

Anyway, the whole experience of the possible heart surgery has got me thinking about the different layers of a long term illness. People often ask how they can pray for me or support me and so far I’ve not really organised my thoughts sufficiently to give a helpful reply. Here goes:

Layer One – the terminal or incurable disease. The person who suggested that we should “live each day as if it’s your last” has probably never faced that actual reality. While coming to terms with the slow growing, long term nature of my illness I did have days when I felt that the next day could be my last. I’m sure my Christchurch friends know exactly what I mean when I say that you cannot live your life with that level of stress continuously present in the back of your mind. You need to have sanity breaks and a plan. Here is my plan:

  • find friends who can chat without dwelling on your illness
  • think about other things – I find watching TV and chatting in the afternoons/evening with family is a good distraction. We have several series that we watch regularly, but I’m not telling which ones! Books are also a good time filler and help me when I need to be resting but don’t want to fall asleep.
  • thinking about others – I attend a prayer group and together we pray for all sorts of people and events around the world and this helps to keep me focussed on other people’s needs.
  • regularly seek specific prayer for complete healing. You can’t just forget about your illness, so setting aside specific times to focus on it can help. Doctors appointments, injection schedules and similar medical commitments are appropriate times. Because there is no known cure for my cancer, the only hope I have is a miraculous healing. So I intentionally set aside time at church and at my prayer group to receive prayer for healing.

Layer Two – the daily grind. No, not the coffee but the effort involved in living with the aches, discomfort and sometimes pain that each day brings. Some days a headache can be more than I can cope with. You would think that, compared to my other problems, a headache would be a minor thing. All day, every day something in my body aches or is uncomfortable. I’m not complaining but just trying to describe for you what it feels like. A result of my illness is chronic fatigue, so I often wake up tired and spend the whole day that way. So here is my plan:

  • listen to my body and try not to push things too hard. I feel a lot better when I can eat the right food at the right time and keep adequately hydrated. (Note: it is always the right time for cake!) I also now have pills for diarrhoea, fluid retention, stressful situations and good old Panadol. I know how far I can walk and how late I can stay out at night. I know how many people I can cope with and when it is safe for me to drive.
  • I have friends who pray for me during the day, just for peace, strength, comfort and wisdom for that particular day. Looking back I can see many answers to these prayers at times when I just needed an extra boost. One I remember was when I was having a scan and the nurse was having trouble getting a line in my vein. I texted a friend who prayed for someone with angel fingers to guide the line in painlessly. The same nurse came back (cue panic attack!) but this time the same needle slid in with no pain.

Layer Three – the Big Events. The decision to refer me to Auckland for potential open heart surgery was a Big Event. I went into a state of shock for about a week, then was in a lot of discomfort following the angiogram and then stressed out to the max waiting for a phone call. This seemed to wipe out any benefits I was receiving from my medication and a lot of my symptoms returned. The Big Events are different in that often all you want to do is crawl into a safe place and hide away from the world. At times like this it is difficult to communicate and so usually only a small group of people will know what’s going on. Here is my plan:

  • crawl into a safe place and hide!
  • get my lovely husband to cope with phone calls and visitors
  • text one or two people and ask them to pray specifically for what is happening or to visit me.

Obviously everyone is different but until I was diagnosed with cancer I hadn’t understood the “structure” of a long term illness. In many ways I am experiencing a lifestyle change similar to someone diagnosed with advanced diabetes or severe asthma. All I need to do now is work out a good answer to the question “how are you?” If I say I’m fine it generally means there are no Big Events occurring, I’m not thinking about having an incurable illness and bowels & bladder are in harmony!

Operator….. Information….. Please give me Jesus on the line