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would we cope with the endless tide of war, death, disease, starvation, destruction, and Donald Trump’s crazy hair and outdated ideas?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.