This is the end, beautiful friend

WARNING – GRAPHIC DETAILS WHICH MAY BE DISTURBING TO SOME

My Nige has gone. There are hollow spaces everywhere I go, filled with sad loneliness. How can I go on without him when nothing seems to matter anymore?

For our kids. It is Liam and Eva and my desire to be both a great mum, and great dad, to them now that keeps me from turning to cold hard concrete.

He was doing OK but it was evident we were losing ground. I never lost hope that we could turn things around, but the belief had grown smaller of late. In the last 2 months Nige went from being able to shuffle around the house and walk short distances to being bound to mostly bed and a wheelchair. Needless to say he hated it. He was trapped in a failing body and boy was he angry. Rightly so. We knew this chemo was harsh, and really hoped to kick back the cancer enough to give Nige some breathing space to recover from it, but it was not to be. Although the 2 scans he had whilst on Paclitaxel showed that the chemo was keeping things at bay, Nige just never seemed to regain his mojo. The steroids he was on which helped so much with appetite, inflammation and energy had turned him into a strange being neither of us recognised, with a puffed up face and weak bendy legs. The chemo took almost all his hair, and made his breathing and any exertion more difficult. We were stuck – if Nige didn’t do the chemo the cancer would consume him, but doing it was taking so much away it hardly seemed worth it.

I asked Nige if he had any regrets agreeing to this latest chemo and he said that he didn’t and that he could still find joy in his day. Who knows, it may have bought him the last 3 to 4 months. How I loved him for that, for who else could be in a situation so detested and yet find the silver lining. We were made for each other in that regard.

On the 10th of September we took an impromptu family trip up to Auckland. I had work meetings up there and Nige and the kids had been cooped up and bored for weeks, so it seemed like a good opportunity to get away. We were finally using Nige’s wheelchair, which made a real difference to his quality of life. I only wish we had started using it earlier, but it’s a harder step than you think, and all the while we thought Nige would improve. Positive thinking can be both a blessing and a curse.

That holiday ended up being our last family holiday with Nige, so of course I am eternally grateful it all came together. He got to see his brother and niece who live in Auckland, as well as tick an item off Nige’s bucket list – dinner at “The Grill” near Sky Tower. We also made it out to dinner at Denny’s on Saturday night, the Auckland Zoo on Sunday – where we had a fantastic day pushing Nige around and chatting with the kids – and out for brunch another day. It had been too long since we’d enjoyed these simple outings as a family. I imagined our Spring and Summer stretching out together in this manner, glad that the wheelchair could give Nige some much deserved freedom. But of course the cancer had other plans.

While we were away Nige noticed his ankles were very swollen. At the time we put it down to his feet pointing down more than usual after so much time in bed, and his shoes being tight due to the steroids swelling his feet. We were worried though and were going to mention it to his nurse when we got back to Wellington. Other than that the holiday went off without a hitch, and we felt we had reconnected as a family, if only a little.

The next couple of days trundled on as normal, but on Friday night some nasty nausea hit Nige. He had nausea and vomiting all weekend, which seemed out of the blue, but we thought perhaps he could have caught something on the plane, with his immune system being so low. By Monday it had improved a lot, which was a relief.

Then on Tuesday at lunchtime, Nige began feeling some low grade pain in the right side under his ribs. He didn’t mention it me until later in the day. I was sitting in the lounge late afternoon when he surprised me by motoring in from the bedroom, and sitting in his brown lazy-boy armchair. He had a look in his eyes that made we realise he was worried this time. He told me about the pain, and that it was getting a little worse. I suggested he take some pain killers and that we ring the nurse, but he was adamant that we wait and see as he just knew she would send him to A&E, which would mean a long, exhausting night. Liam had Karate and I asked Nige if I should stay home and give it a miss under the circumstances. But being Nige he shunted us off and so we left. By the time we got home at about 7.30pm Nige was sitting in bed on oxygen, not looking any better. The pain and breathlessness had continued, and even the oxygen and sitting still wasn’t making Nige feel any better. I could see this was worrying him – the oxygen machine always made Nige feel better, and he seldom had breathing issues while sitting still. I felt the familiar wash of fear and anxiety come over me as we chatted about what we should do.

A phone call to the hospital left me feeling more confused than ever, the oncology nurse didn’t seem to want to commit to any advice and suggested we call the Hospice nurse instead. I said that we just wanted to be sure with Nige’s symptoms that we shouldn’t come straight into hospital, could she at least tell me that? Finally, she said she would ring an ambulance for us, as the ambos could assess Nige and then let us know whether they thought hospital was necessary or not. I warned the kids that the ambulance was coming, but that daddy was okay, so that they wouldn’t freak out. The ambos were great; thorough, friendly and calm. But they did think Nige should go to A&E, just in case. Poor Nige couldn’t hold back the tears. At the time I thought it was because he hated going to A&E due to how tiring it was, but now I wonder whether he knew this was it. I almost think he had an inkling when the pain first started earlier in the day. Just something about the look in his eyes.

By about 3am the doctors and nurses had Nige settled with all of their tests complete. It looked like there may have been cancer progression in the lungs, but no-one seemed sure as X-Rays are pretty poor diagnostic tools. His blood tests came back fine, his heart looked OK. Blood clots had been suspected but he was already on blood thinners so they thought this unlikely and also couldn’t see anything obvious. He had a pretty good day that day, all things considered, though was still constantly on oxygen. I spent most of the day at the hospital with him, then brought the kids in for a visit, and overall Nige seemed pretty perky. He had sent out a “coffee invite” via Facebook at about 1am so had had a couple of visitors during the day, which always energised him. Later that night we kissed him goodnight and headed off home to bed. I watched Pretty Woman on Netflix and had a glass of wine, texting Nige to say that I missed him. Sleep came before the end of the movie, it had been a tiring couple of days and I felt happy that Nige had stabilised and was in good hands.

The next day I was awoken prior to 7am by a call from Nige on my cell phone. I was immediately concerned as he wasn’t one to wake people up before their alarms went off! Nige sounded breathless and was hard to understand, but I got that he had woken up unable to breath and that the nurse had pushed the emergency button summoning a bunch of doctors and nurses to his bed. It’s hard not to play parts like this over and over in your mind, imagining the fear he would have experienced waking up to this. But the hospital staff had managed to stabilise Nige, enough for him to give me a call and explain the situation. And then those fatal words were spoken, “The doctors want you and mum to be present when they come and see me this morning, you need to be here by 8am”. I knew this was bad. The next hour was a flurry of organising dad to come out and take the kids to school, letting the kids know what was happening and reassuring them that daddy was OK at the moment. I didn’t want them to go off to school worrying. They had a cultural parade at school later that day that they were excited about it. Nige had spent ages trying to find them T-shirts with a NZ flag on to wear. I had ended up going out and getting a couple printed a few days earlier because we just couldn’t find anything online. This is just one example of the lengths Nige would go to make our kids happy, the right T-shirt may have seemed like a small thing, but to Nige and the kids it was all these small details that made their relationship so special.

I made it to the hospital in time, and into Nige’s arms for a much needed hug on both sides. Before long Nige’s oncologist turned up with his entourage. The upshot was that the pleural effusion, or fluid in Nige’s lungs, had advanced again and was considerably compromising Nige’s left lung. Cancer and inflammation in the right lung was also apparent, meaning there was very little working in Nige’s favour. The only option left was to try and drain some fluid from Nige’s left lung and see if it would partially re-inflate. This could give him temporary symptom relief, however only a reduction in the cancer would lead to a more permanent result. It was a slim chance as Nige had had this procedure done previously and it hadn’t worked. Over time the cancer had made the lining of Nige’s lung stiff and inflexible, making it much harder to inflate. As Nige’s oncologist had whispered to him before he left, Nige was in a very precarious position.

Poor Nige. A patient has to sit up for the lung drainage procedure and lean over the wheelie breakfast table. Nige was so exhausted he could barely sit, but he didn’t complain. I watched as they extracted 600ml of fluid from a pocket found in his left lung. And then we waited. If the lung chose to re-inflate, we could buy Nige some precious time. The nurses were closely monitoring his oxygen saturation and heart rate, as the numbers see-sawed between acceptable and critical. Nige seemed to be trying to recover, this procedure had taken a lot out of him. But as I watched I noticed his breathing change and become very laboured. At first the nurses thought it might be his lung trying to re-inflate, but it soon became obvious that they were as concerned as I was. Before we knew it Nige’s oncologist was back and everything started to speed up as the ether whooshed around us.

Nige was dying. His heart rate was becoming erratic, his oxygen levels dropping. His extremities were becoming colder and the soles of his feet mottled. Nige and I had a tearful exchange where he expressed his desire for me to plant a Rimu tree for him after he died. As usual his thoughts drifted to the care of others, the expression on his face as he thought it through to me said “it’s OK Nige, you’ve got it all covered”. And he did. For the last 2 years almost every action had been an expression of his enormous love for his family.

The hospital staff moved us to a private room, and unhooked Nige’s monitor. No more beeping. Our eyes locked and spoke of fear and sadness and love and a desperate lack of control over this nightmarish event. Dad went to collect the kids from school, Nige’s brother arrived from Auckland. Everyone who needed to be there was. We took turns flitting in and out for several hours, between the private room and a family room they had made available for us all. Nige’s eyes flickered open long enough to be able to speak to each of his children, thoughts only for their fear and sadness rather than his own. Courageous and noble and loving until the end. Nige’s breathing became worse, and every time I turned around the doctor or a palliative care nurse was there, saying more words, more words, more words that I seemed to understand but that spun and whirled around my brain. A vortex sucking us to towards point, a point none of us wanted to reach. Various drugs for breathing, anxiety, nausea were introduced, and upped and upped. I had put Nige’s playlist on to cover the sterile hospital silence as he lay fighting. A comfortable blanket I so hoped he could cling to in this state of semi-consciousness. Fighting to live, fighting to die. My heart cracked as the kids came and kissed their daddy goodnight for the last time. Their brave little hearts dealing with the enormity of a situation they should never have had to face so young. Remaining family members took turns whispering loving secrets into Nige’s ear. I so hope the words gave him comfort and strength as he made the rest of his journey alone.

At 9.35pm Nige slipped away. Lying on his side as though sleeping, he had found his rest from an unrelenting and unimaginably cruel disease, that had stripped so much from him and yet left a soul even more beautiful than you could imagine exposed.

Earth below us, drifting falling, floating weightless, calling, calling home.

Celebrate Good Times

Nige just walked from the lounge to the bedroom with little fuss. Earlier he walked from the lounge to the bathroom with little fuss. Sunday just gone this was a major ordeal. So what is going on? Yes the scan results today have shown that Nige’s cancer is stable/slightly improved. But his breathing has the majority of the time during the last few weeks, been worse than after his previous scan. Doesn’t make sense right? Maybe this will make sense. Every Friday Nige has chemo. As soon as he exits the chemical chair his breathing worsens. It stays this way or becomes more laboured as the weekend goes on. It’s not the allergic reaction that many on Paclitaxel (or Taxotere) can experience – this would mean an emergency hospital visit. No this is something else. But the doctors can’t explain it. At first we thought it was our old friend “Mr. Steroids” (you can just imagine him right?! Huge Popeye arms, tiny……) Anyway, the level of steroids Nige took didn’t seem to make a huge amount of difference, and this explanation just didn’t “feel right” if you get my drift.

Nige explained that it felt like he could take a deeper breath, but he was getting out of breath far more easily. But then he would recover quite quickly. And consistently his breathing would improve as the week went on. By the time it was time for his next chemo, he would be feeling almost chipper (lol – not quite), but then he would have the chemo and the cycle would start all over again, getting slightly worse as each week went on. To me it seemed obvious – the chemo is causing it! The accumulated effects were making Nige more and more fatigued, and somehow, effecting his breathing. But the doctors didn’t seem to think this was the case (they didn’t, however, have any other explanations – we’d ruled out anaemia, heart issues, fluid, and lymphangitis). And then it dawned on me. Nige is an anomaly. This is his fourth line of treatment and third chemo. Stage 4 cancer patients don’t generally get this far and/or react to every chemo they’re given. Nige can’t be compared to a newly diagnosed person having first line Paclitaxel, who would have a more robust immune system, and wouldn’t have yet built up resistance to chemo.

The doctor said he wouldn’t go so far as to call it a miracle (screw him lol), but it did say he was amazed. I think he’s starting to look like a bit of legend around Wellington hospital. Thanks to Nige’s hard work, my research, the private oncologist plus many other’s input! (Too many to name, but you’ll know who you are :)). But I’ll let doc take the credit, as long as Nige is heading in the right direction I don’t really care (ok maybe I care a smidgen ;)).

I believe the juicing and staying away from certain foods is helping. I believe a strong state of mind is helping. I believe smart treatment choices have helped. I believe supplements Nige is taking have helped. I believe that numerous things we have tried have helped in some way, they are too many to list here, and some might find a few flaky to say the least. But I also believe that the cannabis oil Nige has been taking since he was first diagnosed has helped. Immensely.

While we know these “good times” may not last forever, we can at least for the moment, take a breath and feel secure for a short while. It’s what we’ve got and we’ll take it. But Nige has already kicked 4-8 months to the kerb, he’s knocking on 22 months since diagnosis. And that to me and everyone who loves Nige, is enough of a miracle to celebrate. So celebrate. Have a drink, say a prayer, smile. Because you’ve helped us get here. And don’t forget to say Hi, we love to hear from you.

xxx

 

 

 

Roller Coaster of Love

Hi everyone, well where to begin.

So that son-of-a-bitch shortness of breath came back again. Kind of makes me laugh, like Nige has ever really been able to take in and hold a decent breath during the last 2 years. But as I think I’ve explained before, cancer is just different levels of acceptance. When it’s a gradual progression each dip down is met with initial intense fear, but when nothing changes too much for a while, and life seems under control, you adjust and just get on with it. If Nige had been experiencing the symptoms he has now way back at the start I would have been a blubbering, hyperventilating nervous wreck. But time and knowledge gained means I can now mostly tell the difference between life-threatening and quality-of-life.

But hey there’s always room for more learning right?

So in the space of a week Nige went from comfortably moving around the house, and showering pretty well, to once again gasping and panting following small (for him) exertions. Really scary stuff.

What the hell huh? A week after the doc had told us the chemo was working and showed us how Nige’s tumours had shrunk and his left lung opened up. You probably have no idea how many times I’ve figuratively torn my hair out and thrown it on the ground shouting “what the hell?!!!!” But cancer doesn’t give a shit that it’s not logical or that you might be on the edge of the “spectrum” and can’t find any patterns in its behaviour. Cancer is like “whatever man, chill the fuck out, I’m just trying to live my life man, just like you”. Sometimes I liken cancer to mankind on earth. Slowly destroying everything even though we know in the end it’ll be the end of us too.

Anyway we did something we’d waited too long to do in the past, we called the nurse. And we put back up Nige’s steroids. Again. Those bloody steroids. We suspected that they once again had something to do with this latest debacle, as Nige had been trying to wean himself off again. But hang on, we have to be cautious with our thoughts here, don’t want to be attributing this to steroids when every other time it’s been, surprise, surprise, the cancer. “Surely it’s not the cancer fighting back already ” I thought. In one week? But the last 2 years have made me cynical and squashed my positivity somewhat. I always try to expect the worst so that the trip back down the depression pit is a little shorter, perhaps a little less painful. Perhaps.

My beady eyes stabbed into Nige for the next few hours, looking for signs of improvement or decline. A decline would mean a trip back to A&E. Not our favourite place to go for the school holidays. But he improved a little. And the next day we were at the hospital for chemo, so the docs could give him a good checking over. It’s funny we’ve gone from wanting to stay as far away from chemo as possible to being afraid of being turned away. It’s become a life-line instead of a poison, because it had to. There was nothing else left. Nothing fast enough and good enough. No time. No space. We know the odds we know the stats and can only hope to keep defying them. 2 years since Nige began to exhibit symptoms of lung cancer. Two long, too short, two years of a half-existence. Of living on the fringe. Watching the lives of others with a kind of wonder. That used to be us! Putting one foot in front of the other. One….granny….step…..at…..a……time.

So Nige had blood tests and an X-Ray. And guess what. His X-Ray looked great. When he was admitted to hospital a few weeks ago the whole left lung was white – filled with tumour, fluid, collapsed lung. This week the top third had opened right up. His bloods were good! a couple of weeks ago the liver bloods were a bit dodgy, this week they were better! So what was going on? First let me breath out a sigh of relief. Okay, the chemo is still working. On we go with the plan. Then questions for the doctor, why is this happening? Why is Nige still so short of breath? Well it turns out that because the tumour in his left lung is growing around the bronchial tubes that are the only source of air for that lung, any inflammation can partially block this precious source off. Cancer causes inflammation, so can chemo, and steroids reduce it. It’s as simple as that. If Nige drops his steroids down too low, the cancer inflammation starts to block the tubes. So until the chemo reduces the cancer enough to keep it away from those tubes, Nige will have to watch his steroid dosage closely. Because if the inflammation gets too bad, all his bronchial tubes to that lung could be blocked off. And that is not good. Did you think, like me, that the other lung would compensate? Apparently not so simple. Bugger.

So good news in that the chemo still looks to be working, but bad in that Nige is still in a very precarious position.

Such is the roller coaster ride at the worlds shittiest theme park. And no I don’t mean Rainbow’s End. But hey, at least we’re still riding the fucker.

 

 

 

 

 

 

 

 

2 Funerals and a Wedding

The trouble with making friends in cancer world is that you lose them. The friendships are fast and intense, the way good friendships should be, as we all should live since time for everyone is finite. But it’s a fact that those with terminal diseases are often gone from this world earlier than others. Too, too early. And they are always “good guys”.

Nige and I lost 2 good guys in 2 weeks. And I want to say their names out loud because they were and are gems in the rough.

Daniel Stamper and Ian Charman.

I didn’t know either of these men well, but Nige and I were touched by both of their stories, and through attending their funerals got to know more about why they were so loved and will be so, so missed.

I’ve been to too many funerals for someone my age, so I know the drill.  It’s always the grief of others that gets me, I can empathise. That gut-wrenching pit of loss that threatens to consume. Surviving at the edge of a black hole, until over time the immense hollow sadness loses some of its pull, and we slowly live again, altered forever and carrying tiny pieces of remembrance in our hearts.

Nige attended both of these funerals, on legs that bend sideways as he stands. With breath that falters with too much activity. With energy that isn’t ever really there. I was proud of him. They were tough, I won’t lie, being so close to the bone. But it was the least we could do to honour the magnificent battle that both men had fought. They did everything within their power to stay with loved ones as long as they could.

As Nige still does.

And I can’t help thinking, will that be us soon? The funeral and the coffin and the brave kids and the devastated friends and family. The disbelief that this has happened, even though we know it must for all. We are never prepared.

But we must focus on the now, on the what is, on the what could be. With, I believe, those who have fallen alongside us. Because I know they will be gunning for Nige.

Most of you have likely now heard the news, that Nige’s latest scan results show a reduction in the cancer again. Against the odds of an only 8% likelihood that the treatment would work. And so we gather up our hopes and press on. Pushing relentlessly against the tide. Believing what we want, not what we are told. Believing in the extraordinary.

Nike’s dad came over from the UK again a few weeks ago. He and Nige spent quite some time setting up Nige’s new computer and organising our wedding photos. It’s been a while since Nige has had a project other than cancer, and it was heart-warming to see him and his dad side by side, performing this simple but important task. Sifting through the happy memories of an event that traditionally takes place when all of the hopes and dreams of the future are laid out glittering in a seemingly endless path.

But I’m not going to dwell on that. For as long as you only focus on each glittering paving stone and its beauty and purpose, the path is always endless, right up until the day that it’s not. But that is just one paving stone. And if you imagine that each moment is a stone, you can make that path as long as you like. The beauty and purpose of each stone is up to you.

In the attached picture you’ll see Nige and I posing for a photo way back in 2001 I think. Was this a prediction of our future? The path seemed longer then, but I have no doubt it is more beautiful now. And the purpose is clear and strong. For there are 2 more faces that belong in the photo now, and for them, we will fly far higher and farther then we ever thought possible. Where I’m sure, if Eva had her way, unicorns would roam. And Liam would be a famous You-Tuber.

 

S.O.B

Hi everyone….

I wish updating you again so soon meant I had good news. I’m sick of being so darn depressing. But I’m committed to seeing this blog through so if you’re on board keep reading – it’s not all doom and gloom (?)

So now we have an oxygen machine and a shower stool at home. Two innocent contraptions I’m sure but their presence speaks volumes. They make me think of old sick people and tragic times. But they are also our shoulders to lean on at present – in the case of the stool literally!

Last Thursday the cancer nurse happened to ring. She’s got a knack with timing, previously she rang on a day when Nige couldn’t stop vomiting and we were dreading another trip to A&E. This time his shortness of breath – or SOB if you’re up with the cancer lingo – was getting ridiculous. Yes, the phrase “son-of-a-bitch” comes to my mind too when I see “SOB” so don’t feel bad. To put it in perspective, going to the toilet leaves Nige short of breath and panting, but having a shower almost makes him pass out from the exertion as he’s so oxygen starved.

This time she did suggest we go to A&E. Sadly nothing in the pocket of her nurses’ uniform was going to get us out of this one. Nige was due to start chemo the next day (which we had already brought forward a week due to how bad Nige was feeling), and she was worried if he rocked up all grey and heaving for breath and stuff that they might delay it and he’d end up in A&E anyway, except it would be on a Friday afternoon. (Cue drugged up and drunk people in soiled clothes shouting and vomiting all over the place).

The guts is that his left lung is still pretty much a useless deflated hunk of flesh. His right lung isn’t compensating enough and so any small exertion leaves him gasping for breath. To add to this he may have had a slight infection, plus a new surprise last minute entry – he has blood clots!

As you probably know blood clots aren’t to be messed with so they gave Nige a blood thinner, an eye popping dose of steroids to decrease all the inflammation in his chest, and some antibiotics for good measure. All of this did help, and he was cleared for chemo on Saturday, and then sent home this Tuesday just gone.

The machines were there to greet him – “hi there buddy, we are here to help you, but at the same time confront you and your family with the news that you’re really sick”. Ugh. TBH I’m really glad stool and O2 are here. Anything that helps Nige retain some sense of independence and dignity as he fights through this latest battle is cool with me.

And he hasn’t got any worse physically apart from being bloody tired. So I’m clinging to that. Mentally it’s a different story, of course. How does one pick themselves up time and time again with no promise of a happy ending? Through love, hope and sheer determination. Through the support and energy of those close by. By some miracle. It’s probably a silly thing to say, because you could say what choice does Nige really have, but I’m so bloody impressed with this man. To grow into an even more incredible person amongst this cancerous turmoil. To make me love him even more for his love for me and his family, his guts, his awareness, his unwavering fight. He does have a choice, he could just give up, but he simply doesn’t.

Tomorrow is chemo No. 2 and you guessed it, I’ll be making another huge birthday wish. I can’t tell you what it will be but you might be able to guess.

Xx

Just the Facts

Hi everyone, no bells and whistles today, just a courtesy update for those interested. Squeamish/Sadness alert!

Nige is no longer in remission. The cancer has come back with a vengeance. There is some good news, which is nice, but the overall picture is a little scary to say the least.

You may remember that after Nige had the great scan result in January, he began attempting to get off steroids. This was rough, and at the time we were trying not to think that it was because the cancer was still growing. Turns out, it was.

The last few weeks have been the worst, Nige’s breathing and energy declined steadily, starting with difficulty walking up hills, to walking up slight slopes, to walking on a flat surface for more than a few meters. Shit we were worried.

So roll on the scan, and while we tried to hope for a miracle, it was evident the news wasn’t going to be cheerful.

The good news is, Nige’s bones still appear to be healing, his brain is clear (thank god!) and the fluid around his heart is not doing anything alarming. The shitty part is that his entire left lung is now pretty much useless. The bottom has been down for some time, stuck together almost. The top is full of tumour, which is now encroaching on his bronchial tubes which of course lead to his windpipe. The rest is squished by what is called a pleural effusion – fluid that has collected in a cavity between the outside of lung and the inside of the chest wall. This leaves his right lung, which would be fine, however this is starting to look a tad crappy too. To top it all off, he has new pesky lesions in his liver. No wonder he’d been feeling like arse.

Nige went into hospital on Friday so that they could drain some fluid from his lung. They basically slice you between the back ribs and stick a tube into the pleural cavity, and then drain the pus-like liquid out. Nige said it felt pretty nasty – no pain but very strange. As you’d imagine, having someone fossick about in your chest like that. The guy thought he might be able to get close to 2L out, but finished up with 800mls. Still a decent amount! Sadly, Nige’s lung decided is wasn’t going to re-inflate despite having more room, and so this procedure made no difference to Nige’s breathing and energy. So home we went.

What’s the plan? Well who really knows, Nige can try more chemo and hope for the best, again. He can try alternative therapies and hope for the best, again. He can try radiation, which sounds pretty risky and horrendous in itself. He can try all three and really go to town. Or he can do nothing, and maybe pray for a miracle. All in all, not a very appetising selection. Most of us at least have the weekend to look forward to after work.

So here we are, further back then where we started. Further back than ever before. Not sad to have experienced the good parts of this journey, but just so darn frustrated that we couldn’t fly far away from those nasty statistics. Hell Nige has done incredibly well so far, and defied the odds at every step. But how much longer can he be expected to go on like this? It’s really not a life. There are good bits dotted in-between the sickness, pain, anxiety, grief and treatments, but not bloody enough. I am desperate for a few more beautiful months with Nige and the kids, making more wonderful memories. But what I really want is a lifetime.

Smiley Happy People

Facebook. Don’t you love it? Our best faces forward, selected shots of our lives displayed in a collage of how we imagine we’d like to be seen. Smiley happy people.

Or are we?

FBcat

I struggled with writing this because I do want everyone to think we’re smiley happy people and that everything is perfect. But the truth is, it’s not always that great. It may be a blessing in many ways to be confronted with death, but let’s face it, mostly it’s bloody terrifying and nightmarish. I feel like I’m always complaining about something or slapping people in the face with cold reality. But stronger then the desire to make others smile and laugh and feel reassured, is the burning belief that the truth should be told, especially when it comes to this horrendous disease.

We drove past a fatal car crash on the way back from Taupo this Easter. I’m an emotional soul, and I couldn’t help but try and put myself into the awful shoes of those experiencing the horror. Yes, it was hard, and sad and dreadful, but I felt it would be much worse to squash those feelings down and pretend they didn’t exist. To feel nothing. Don’t we do enough of that already? We have to, or how else would we cope with the endless tide of war, death, disease, starvation, destruction, and Donald Trump’s crazy hair and outdated ideas? And the plus side of being a thinking and feeling being is that we also get to feel joy, elation, excitement, relief, and LOVE.

So I’m putting it out there. Yes, we have a lot of good times, and I’m so grateful that Nige is in remission and that we have the opportunity to live such a special life. For Nige though, every day is still a struggle. It’s not like Facebook. But if I’d put up pictures of Nige bending over puking, sitting down catching his breath, tossing and turning in the middle of the night, or being racked with coughs it would have been a bit strange, and kind of mean. Who wants to be confronted with that over a morning coffee and some jam on toast?

Our family holiday to Taupo on Facebook: Posing as honey bees, yummy cafe meals, fishing, animal farms and loads of fun.

Taupo in reality: Loads of fun, but also: Buying Nige honey because it’s the only thing that helps with his persistent tickly cough; Nige struggling to walk around Lilliput farm; Nige vomiting as we walk around Craters of the Moon – we almost didn’t even make it fishing; Nige agonising over what to eat because nothing appeals; Nige writhing in agony due to severe back pain. All mostly side-effects from long term steroid use and withdrawl symptoms from trying to get off them. (Still no Popeye muscles ;))

I think as victims of cancer, people want to send out positive messages of hope, and we on the other side want to believe these messages. And I’m totally for that. I think it’s really important to have hope. But we still have to face reality, because it’s the horror of a cancer sufferer’s reality that forces us to act in extraordinary ways, to break out of the daily mould for a second, to feel, and to strive to appreciate each day and the people in it you care for.

It’s only a few weeks until Nige’s first scan since remission – already! How time flies when you’ve only been given months to live. And how easy it is to get on with things and forget to cling to each other and each moment as if it’s your last. No matter how many times I remind myself life is short, dredging back up memories of mum and how I only knew her for just under 17 years, I just can’t help glossing over reality and pretending things will go on as they are for ever. It’s a natural state we drift towards.

But the scan-monster is drawing ever-nearer. Nige’s 3 month check up scan. It’s an important one. Winding us in towards another shock wave of truth. Will the wave be warm and comforting or bone-chilling and terrifying? We can only wait and see, and hope that whatever wave comes, our family’s little boat can ride it out until the sea calms and we drift back into everyday.

This is not supposed to be a sob story or a pity party, rather a shout out to all those who smile through the pain, whilst the battle rages behind, just out of frame.

This is then a shout out to everyone – for all those suffering from the human condition.

I think we are all a bit worried that others are doing things better than us, that we missed the memo with instructions for an easier, smoother, trouble-free existence. Maybe it comforts to know that struggles are not unique. It allows us to spill forth in relief that dirty and tightly held secret that we haven’t got it all together after all. We fight with our husbands and wives, yell at our kids, don’t brush our teeth, spend more than we earn, worry that we’re too fat/thin/ugly/stupid/mean/short/tall, that we stand out in some negative and unforgivable way.

But I say fly that dirty laundry like it’s the new New Zealand flag – I bet what’s on your washing line is no worse than what’s on your neighbours.

Fly that shit, air it out and then set it free.

 

 

 

 

 

When Privates go Public

So today we ventured back to Wellington Hospital for a scheduled appointment with our old oncologist. I never look forward to these, as they are always mentally depressing. A sort of gloom hangs over the waiting room while grey shrunken souls shuffle around awaiting the next piece of depressing news. Even though Nige is in remission and we should all be happy and skipping in a circle, our doctor manages to “help us” see that in fact there is still no hope, and that we should make the most of the little time Nige has left. I agree with making the most of things but I don’t share his “you’re already dead to me” attitude. I think I am right in stating that most people are aware of mind over matter, and the power of positive thinking. Well there’s one great reason to stay well away from the public health system if you have terminal cancer!

He hadn’t seen Nige’s latest scan so wasn’t aware of his remission. It turned out later that the email to him from our private oncologist was in his “pigeon hole” and “oh yes that looks familiar”. Pretty much sums up how he treats all his terminal patients – the pigeon hole of no hope, no fight and certain death. I mean why bother reading a terminal patient’s notes before a scheduled appointment? That would just be over-kill (excuse the pun).

Nige has been feeling rough the last few days – he actually vomited the night before last which he hasn’t done in ages (sorry TMI). He’s been trying to cut down on the steroids as his guns are getting too intimidating (LOL not that kind of steroids!) Knowing that steroid withdrawal could be the cause of Nige’s un-wellness, we asked the doctor for his opinion, really just to give us peace of mind incase something more sinister was at work. The oncologist shrugged and said “don’t know”, just take more steroids and if you feel better that was probably the problem. Sounds scientific……..

As a recurrence of brain tumours is one of our biggest fears, we asked if perhaps Nige’s had grown but that the CT he had in January hadn’t picked them up. (Prior to brain radiation treatment Nige had had an MRI which is a lot more accurate). Our Doc was like “Yeah that’s a possibility but *read between the lines* you’re out of treatment options there anyway and steroids won’t keep brain tumour symptoms away forever”. So positive and uplifting I know. But Er wrong – people can have brain radiation on tumours more than once. And yes of course steroids won’t keep the symptoms at bay forever, because you won’t even bother treating the tumours properly!!! (See previous blog posts for the full story). We had a bit of a laugh (sooo funny – not) at the ridiculous back log of people waiting to use the Wellington hospital MRI machines (one of which is frequently breaking down). Nice work NZ government. Doc mentioned that even if Nige presented with symptoms they wouldn’t send him for an MRI, they would simply prescribe more steroids. Hey why find out if there’s anything that can be done when you’re already screwed right? Imagine if we had accepted that advice last year when Nige kept vomiting, he wouldn’t be with us today and our kids would have missed out on precious time with their dad. How many other kids are being denied in this way? How about saying “look we can’t do anything to help you here, but I know you’ve got health insurance, why don’t you go and get an MRI done privately to ease your mind?” Now that would have been helpful advice back in 2015.

Back to steroid withdrawal – I had read that other less addictive steroids like hydrocortisone, or other medications such as Ritalin and Focalin, could possibly help wean Nige off in a less brutal way. Doc pooh-poohed that idea without any real conviction or interest – I wasn’t convinced he actually knew what he was talking about as he usually get’s things wrong (note to self, check with private oncologist).

To finish off our cheerful appointment, the Doc decided to point out the fucking obvious and remind Nige to make the most of things while he was feeling good. Okay that’s fine, good advice, but why did he also have to add “the cupboard is looking pretty bare for you treatment wise, if it comes back there’s not really much more we can do”. Yep maybe on your watch, but hey that’s why we see an oncologist that looks for solutions rather than lying down and giving up. As I’ve told you lovely readers before, if Nige’s cancer hangs on for 6 months, optimistic Doc reckons we can try the same chemo – Pemetrexed – again and probably get similar results. Happy Doc also told us that Pemetrexed could be available through the public health system by the end of this year. Pessimistic Doc hadn’t heard anything about this. We had a jolly old chuckle when he let slip that the public system would probably receive some generic cheap version of it – oh he he he!

A couple of good things did come out of the visit to the ward of doom. Firstly, Nige started taking another half a steroid and is feeling better today. In the meantime, he’ll contact his private oncologist and make sure we are on the best course of action for Nige, because after all, that’s all we’ve ever tried to achieve for him. Secondly public Doc agreed to do Nige’s next scan publicly, which saves us some coin. Usually they don’t scan a person in Nige’s position until symptoms present – i.e. when it’s probably too late to do anything. It does make me wonder how many early stage cancers become late stage due to this non-prevention method. Sad if it’s true. Scanning Nige publicly seemed like a no brainer to me, we’re not uber-rich, we’re just doing what we can to save our Nige, but hey I am grateful because it could always be worse and in NZ we are still a lot better off than other countries. I may rant and rave here as that is my outlet and it stops me from murdering certain people (ha ha), but I am still grateful we have a public health system at all, and know there are a ton of amazing people working in it everyday doing their best to make a sick person’s day a little brighter.

However, I still can’t help but think I’d rather keep my privates in private healthcare, if I had the choice.

 

 

 

 

The Aftermath

What does one do while waiting? Sitting in the aftermath of a fight not yet won, not yet lost. The soldiers battle weary and wary. Squatting in the trenches, unsure of whether to rise and risk walking through the fields, or stay still and quiet between walls of protection.

It’s been 18 days since we found out Nige’s cancer is in remission, and to be honest, it feels a bit strange to be “normal”! It’s so weird going from a daily adrenaline burst of survival to just kind of humming and trundling along like “everybody else”. But what else can we do? We can’t keep ourselves and loved ones suspended in the strange bubble of cancer-land forever. Can we? And why would we want to? Well actually, funnily enough, some things are better in cancer-land:

We lived in the moment; We made time for loved ones; We didn’t bother with petty arguments (mostly ;)); We appreciated and were grateful for everything; We tried to live an extraordinary life; We took care of ourselves.

It’s so simple just to slide dreamily back down into the well worn rut of “old ways”. Living well isn’t easy, doesn’t come naturally, and is downright exhausting at times. Travelling extra miles to find organic food, spending hours juicing and cooking food from scratch. Endlessly researching ways to stay alive. Meditating, yoga breathing, rebounding, soul-searching. It’s probably not surprising that Nige and I feel like a break from all this healthy living! (Especially the wheatgrass shots eh Nige ;)).

It’s a bit wrong though isn’t it, why is it so difficult to live in a way that preserves both your body and your mind? Are we not endlessly instructed by the media the “right way” to live, as simultaneously more and more barriers spring up – work, money, supermarkets, social media, “the norm”? The lives we are forced (?) to lead it would seem aren’t geared towards a nurturing, peaceful, wholesome existence.

Maybe deep down that’s not really what we all want at all. Maybe a life that is easy and kind is as undesirable as the opposite. We need little dramas and upsets to keep us “alive” and stimulated. Cancer is going a bit far, I can do without that kind of stimulation on a regular basis. Bugger the way it takes magnificent people and sucks them away from us.

But we need the terrible to appreciate the mundane.

That much is true. No-one who has lost someone to cancer will find peace in that statement, there is no sense of justice in it. But it is true.

But how quickly we forget our cravings for the boredom of everyday troubles. How easy to sigh and give in to old patterns of thoughts and actions, no matter how negative.

We’re supposed to try and reverse negative thought patterns. I can see why that’s common sense. The trouble is, fighting against things can be a teensy bit tiring and downright boring after a while. Sometimes, you need to give in. Not to the negativity, but to the constant pressure on yourself to struggle against it and everything else that’s not running a perfect course through your life.

Now I’m at the ripe old age of 41, I’ve realised my life up is made up of cycles and patterns, but I always do okay in the end. I used to always strive to regain equilibrium, quite often by beating myself up about what I should or shouldn’t be doing, trying to force events and encounters to happen the “right way”. I can tell you it’s a bit like combining a marathon, self-flagellation and after-school detention living like that – i.e. not fun and/or pleasant for you or anyone in close vicinity! Now I’m mostly at peace in the knowledge that sometimes I’ll work hard, sometimes I won’t, sometimes I’ll exercise, eat well, be nice, be spiritual, and other times I won’t. I am trying to learn to trust that I’ll do what needs to be done when the right time comes. But sometimes I can think like this, sometimes I can’t – maddeningly it’s all part of it!!

So I guess the aftermath of cancer, the waiting, the slipping into old patterns, is just another “phase”, another chapter in the Ammundsen family story book. It’s no bible but it’s not the book of the damned either.

We must go into the dark to once more appreciate the light. As do the seasons of the year, a day on earth, and patterns of self and growth. All change, all the same, repeating in endless undulating waves that grow and retract along the way….frequency shifts, black holes, bright stars, turning and twisting and convoluted just like the universe around us.

How else can we be?