The Last Post

 

My big strong man passed over to a place of peace on Thursday afternoon.

I held Russell as he took his last breath and reassured him that our love would never grow old. We would have celebrated our 8th wedding anniversary on Tuesday – March 21.

The irony was we celebrated life with friends on the Saturday night by firing up our pizza oven, cooking a protein medley of Salmon, Lamb and Pork Belly. Little did we know that this would be Russell’s last meal.

On Sunday morning, Russell woke up feeling like he was going to die, which upon reflection I realised had been happening all week. Despite this, we went to Louis’s school trip to the art gallery on Thursday and watched him belt it out at cricket on Friday night.

Through living in the moment during his two years of suffering, Russell denied his body the chance to catch up. But on Tuesday he told me it had been the worst day of his life and he wanted to just go to sleep.

Russell remained in control the whole time, directing me as to what he needed. He never left our bed so we cried, cuddled, read books, watched videos to hear the sound of his voice and stayed as a family.

Having him home was incredibly comforting. It was important to me that he wasn’t alone.

Yesterday morning before Russell’s cremation we placed him in a white coffin that had personal messages and the kids pictures. Our reflections created a place of peace.

Join us to celebrate Russell’s life on Thursday at 1pm at the New Plymouth Sailing Club at Ngamotu Beach. There will be a bar on the beach, sheep on the spit and live music – Adam will be playing The Waterside.

As Russell would say, hold each other tight as love will get you through.

Keep On Keeping On

Life’s hard but I’m not dead, that pretty much sums up the last few weeks. I’ve had periods where the hospice nurses were here every second day to inject me with morphine, days where I can’t breathe properly, days where I fear going to sleep, and days like today where the pain is under control (via a large dose of medication) the sun is shinning, and I feel OK (definitely using that as a relative term here)

So I’ll keep on keeping on.

 

Not So Good

The body has taken a pretty bad turn in the last couple of days and it definitely feels like this is the final march towards death. I have a large band of pain that circulates round the chest making it very hard to breath. I have had several visits from the hospice nurses and their take was that the tumors could start pressing on the spine and cause paralysis. They suggested that I might want to get an MRI and then go to Palmerston North for very targeted radiation on that spot (if it was the case) but this is not part of our plan. It would not hold back the underlying cause of this, rather just try to band aid fix one small part (small being relative in the paralysed/dead sense) In my view going in and out of hospital and travelling to Palmerston North provides way too many opportunities to die in a situation that is traumatic, isolated, and unfamiliar. So the last few days have been full of ups and downs, semi conscious states, drug induced giggles, and hard conversations with Kim, the kids, my parents and friends.

My pain meds have more than doubled overnight and there are regular visits from the nurses when they need to administer doses that will work faster than what I have access to. I feel nausea, pain, dizziness, fear, anger, sadness, but also calm, reflection, and quiet in what is the most surreal experience I have ever had. The closer I get to the end the clearer I understand who I am which is both intriguing and annoying as fuck at the same time. I do not want to die and there is still a small piece of me that that knows it will all be OK. I’m going to call this piece hope and keep holding on to that.

Thank you all for walking beside us through this, and sometimes carrying us when we need it. I reflect on this support daily and it brings me joy.

Russell

120 bpm

So the body has been running a bit hot lately. Specifically my resting heart rate sits at about 120 bpm, about the pace of Black Betty. This makes it pretty hard to unwind or relax at the end of the day when you have this pounding reverberation around your body. This is due to the fact that my body is still fighting whatever else is in there after the infection cleared. On the flip side my GP came round for a check up and said I was trucking along quite nicely, this was after he gave me a quick check over to see if there were any metastases in the brain causing it to swell and push itself out through my eyeballs or that my nervous system was indeed still functioning. Happily everything was fine in that respect and the headaches I am experiencing are likely from the higher morphine dose so I will start to bring that down and see what happens.

The above was what I wrote over a week ago, I started feeling quite good and my heart rate dropped closer to 100bpm, I looked at the post and hesitated writing more about feeling good as usually as soon as I hit publish some other crap comes along. With or without the publish button things did go south and I have gone through another swing of the body trying to fight off something in the last week. Fortunately this time it seemed to be just a cold and with a quick blast of antibiotics, steroids, and some inhalers it has calmed down and overnight it seems to have broken through with some mad sweating on my part. Basically I have lost 4 days in trying to manage my body through this as moving around brought on these crazy coughing fits which climaxed in feeling like I was going to spew my lung out. Anywho, saw my GP yesterday and He confirmed it wasn’t pneumonia and gave me the inhalers to control it. He took my pulse and I asked him if it was at Black Betty pace or down at 100bpm where it had been.  He confirmed it was back up at Black Betty but that 100bpm was a good goal and also the pace of Staying Alive. We both agreed that this was a good pace to aim for. For reference prior to all this crap my resting heart rate was typically much lower sitting between 60bpm (Hope for a Generation) and 80bpm (The Roots – You Got Me) So yeah, a little ways to go to get back down to that.

All of this has made planning any Christmas holidays pretty hard as the goal post shift from day to day. At this stage Christmas day will be a very relaxed affair and then we are looking to spend some time in Wellington between the 27th Dec and 14th Jan as we have had a lovely offer of a house over that time, I have no idea of exact dates for any of this as we just deal with each day as it comes to us.

I hope you are all having fun in the sun and are working on perfecting your jandal tan lines. My goal had been to go from Labor Day to Easter in only jandals but the crap weather has foiled that plan a couple of times, maybe 2017 will bring more positivity, in both jandal suitable weather and not being dead.

Much Christmas love to you all!

Onwards!

After a pretty crazy 2 weeks the body seems to be responding to the antibiotics in terms of the infection on the lung.  Pain meds are keeping things reasonably under control with a slight tweak each day to balance things out. I have some sort of stupid runny nose and a cough that has come up a bit in the last days and as everything gets questioned it’s hard to know if this is separate or related. My next plan is to catch up with ol Dr grimm and see if he’s got any brighter ideas than the last time I saw him. I have been running IV Vitamin C each Monday for about 3 weeks now and that definitely gives my system a boost in fighting this. So fight I will, as I have done every day for the past 5 years.

Thanks for the massive outpouring of support, it was awesome and at times overwhelming.

love

and here’s George in a basket

The Day I Tried To Live

As far as days that suck go, today took the cake. After feeling reasonable in my last update things went downhill on Saturday night and I had a lot of chest and back pains making it hard to sleep. Roll forward to today and I have added in fevers, shakes, high temperatures and elevated heart rate which is all coming from an infection in my chest. At this stage that sort of shit tends to be end up being pneumonia and not particularly good for you and meeting with my GP this afternoon there were such lines as “well if it’s not this infection it will be the next one” talk of advanced directives and his opinion that as far as death goes, pneumonia is a relatively comfortable way to die. I guess it really depends on your perspective that one.

I’m at home, reasonably well doped up on everything from morphine to antibiotics and getting through each hour as it comes. The nights become excruciatingly painful and the days are a mix of ups and downs, thoughts of death are never far but Macy has suggested we “focus on the positives” which is helped by our new kitten George and his crazy antics.

So what’s my plan?

Make another list with not dying at the top, focus my energy on letting the antibiotics clear the infection and manage the pain as best I can. There is still uncertainty and I guess for me that breeds some hope on the day-to-day but the consensus is that while a timeframe is unknown, things will generally get  worse.

But the sun is shining, the mountain looks awesome, and my family are an amazing support. We will share or love, cuddles, sadness and tears this day and every day and that is enough for me. Like Macy said, focus on the positives.

Fuzzy

For those that have text or called with no answer I’ve been a bit off the radar for about the last two weeks as I sort out different pain medication. The morphine works well on muscular pain but I started getting a lot of nerve pain which refers in the shoulder. This made it impossible to sleep so after a couple of visits with hospice and my GP they prescribed me some Amitriptyline. The sales pitch was “in high doses we use this as an antidepressant but in lower doses it works well on nerve pain” I think the antidepressant dosage must be a hell of a lot higher than I was prescribed as it made me extremely depressed the next day and barely functioning. So over about a week I have adjusted the dosage up and down and got the timing reasonably sorted so that I can now sleep but still function the next day. It’s a constant battle to try and stay in control of my body and mind and how it reacts to both the pain and the meds but I feel like the nerve pain is subsiding and I am a little more in balance so onward and upwards. My head is still pretty fuzzy so this isn’t the longest or most articulate post but I’m taking on each day as it comes.

That being said there has still been plenty of horsing around, pizza cooking, birthday parties, building dams and reliving my skatepark days with the family, so rather than focusing on the days I feel like I’m missing this is more of a perspective on what I have achieved.

Much love to you all

 

Ocean

So the last couple of weeks have been a mix of absolute awesomeness followed by absolute crappiness. I’ve had a blast mountain biking again with a bunch of mates, got a days snowboarding in with Blair and Dave, took the kids up to the snow, had a jam with some crazy musicians, and have had the waveski out in some cracking surf this week in the naki. But then, as with most of this ride, came the stink nutpunch. about 3 days ago my shoulder started feeling a bit funny/sore/numb, I’ve had this before a couple of times and it is basically nerve related where the unwanted mass is pressing on some of my internal circuitry and the pain refers to the shoulder joint, down the left arm, and up the side of the face. This has got a lot worse and I didn’t sleep much last night as it’s pretty painful but not muscular so you can’t change positions to take the pressure off.

What does it mean? fuck knows, could be the things growing, could be things shifting, could just be because it didn’t feel like it was being enough of a pain in the arse of late. Will it go away? I certainly hope so and it has before, but the mind is a funny place and especially at night it tends to start running away with itself and all the fears multiply. Each pang seems to signal death, sometimes you feel like the pain is coming to take you or has already taken you and you are just waiting for the body to catch up. But then you wake up, move, breath, talk, laugh, love, and it all goes away for a bit. You feel as though you can manage it, and each day you do there is more confidence that you won’t die this day.

The morphine is both the least and most helpful as it takes the pain away for a time and lets your body rest but at the same time fills your head with these trippy dreams which can feed off the current pain. In addition to feeling quite spaced out, I also have my daily mental list of shit to get done which goes something like this:

1. Don’t die
2. Update the blog
3. Hang a couple of pictures up
4. Think of something nice for dinner

It’s a beautiful blend of the mundane and the paramount.

Take care team, and do something that makes you laugh today, it’s worth it.

So long, and thanks for all the chemo

It was an odd appointment today, I met with my oncologist here in New Plymouth and it was an awkward meeting where there was nothing more that they could offer me from their area of expertise and there was nothing I was looking to them to provide. We left with a sort of “see you later, and hey thanks for the chemo”, I knew I would get to this stage with them but it kind of caught me off guard.

The last cycle of chemo (cycle 4) really hammered me in terms of side effects and the x-rays in between treatments were showing no reduction, so I made the decision to cut cycle 4 short by 2 days and  take a couple of weeks off from treatment over the school holidays so that we could have a family holiday where I wasn’t in bed sleeping every day. I won’t be doing cycle 5 or 6 and my oncologist agrees that there was not a substantial benefit and the side effects would only be worse the longer the treatments went on. One of the side effects that doesn’t get listed on the information sheet is that you withdraw into yourself and don’t want to talk to anyone. It is a particularly horrible feeling as your brain struggles to string coherent sentences together and something that takes quite a bit of time to get out of so if you have called or sent me a message and I have not replied I’m not ignoring you, I just mentally couldn’t deal with answering the phone at the time.

I have tried a lot of treatments over the last 5 years and some help me and some don’t, this is just another step of releasing something that is not assisting me and moving on. As with any treatment plan like chemo which is quite intense there is always a weird feeling when you finish it. Mentally I liken it to sitting in a glider being towed up into the sky  by a plane and the plane has just disconnected the rope, now it is only you.

So I will continue on with the things I have learn’t that help me mentally, physically, and emotionally and keep moving forward. I focus on the small steps in life like birthdays, trips we have planned, and waking up tomorrow.

Rusty

The Waterside

Hey team, short update this time. I am halfway through the chemo and riding the ups and downs. In each 3 week cycle I basically feel very hung over for 2 and a half weeks and almost back to normal for about 2 or 3 days. Happily we have booked a couple of trips away to cath up with mates and do some mountain biking in those 2 – 3 day periods so I am looking forward to that. The last xr-ray showed no change which means the energy blocks are stable. I had hoped for some more positive progress but will take that for now and focus on cycle 4 (which I started on Monday) providing the whipass I am looking for.

The above video was taken by Fay and Liv who happened to be at one of Adam’s (lead singer of The Eastern) gigs. I was luck enough to have a jam with Adam when he did a gig here in New Plymouth and he is a great story teller and musician, it was a very cool morning and I am grateful to Kim for hooking that up on the sly, coincidentally he went to school with Kim and they knew a lot of the same people so there was yarns aplenty.

Keep the support rolling in team, when in chemo (which is 2-3hrs every day for 2 weeks) I have a tendency to not answer the phone but I do get the messages and they give me a lift. I have been going through some old photos as I tidied up an old computer and though the album could be a throwback of some funny memories this time.

The Waterside

Well it seemed to her that the world was in
A state of bad decline
And every night she thought of him
Was a cruel uneven time
She would lay within the wind
Like it was soft and healing breath
But soon the clouds’d come rolling in to sing to her of death

You can put a bed beneath my window
You can put a window right through my heart
You can put a heart inside this broken old chest
You can put your head on my shoulder and rest

I arrived with a burden unkind
And I knew that
She carried the same sigh
We made a space in the dirt
Our eyes inflamed by the constellations on high
And she thought of me
And I thought of her
I didn’t bother asking her why
It was a simple brush of her hand I took to imply

And the night was soft
And the waterside cool
She walked through the moon and she cried
“But for our sorrows and fear and weakness
We’d leave all this trouble behind”
I said “I’m right here and I hear what you say”
She said “don’t panic baby I was built this way”
As she fell on her back and laughed that we tried

You can put a bed beneath my window
You can put a window right through my heart
You can put a heart inside this broken old chest
You can put your head on my shoulder and rest