All I Need

Today is my birthday, and all I want is for Nige’s cancer not to have spread beyond his lungs. In truth I want far more than that, I want him completely healed, but I’ll take what I can get. It’s funny how your priorities change. He has a PET scan today. It will tell us the true extent of his cancer, how much and where it is. I am terrified that his body will light up like a Guy Fawkes display, and reveal secrets we don’t want to know. But we must know, we must face this with truth and trudge on.

Sometimes I feel so weary it’s like I’ve already lived 80 years, at other times I am a child, scared and unsure of what to do, searching for a more adult, adult, to take over. The scenario is familiar yet so incredibly different. How did my father cope as my mother lay ill with ovarian cancer? I am in awe. And he is still here for me now, always there comforting and assisting. An amazing man. As are all the incredible people in our life.

We saw a specialist in Auckland last week, to find out once and for all what was going on with Nige’s tumour and what could be done. It was a successful if very frank meeting, with an overall positive outcome, but a real motivation to get things started as soon as possible. Nige has a Pericardial Effusion, basically fluid around his heart that more than likely contains cancer cells. If this surrounding fluid grows too much, there will be no room for his heart to pump, and well you get the picture. But there are things that can be done, fluid can be drained, the cancer treated, it is not all lost hope. But we must act now. 

The good news is, Nige can receive a different, and better chemo privately than he can publicly. One that is more targeted to his type of cancer – adenocarcinoma. One that has shown good results. The downside is the cost, but what price do you put on a life? The father of two amazing kids, the husband of one spectacular wife (LOL). The brother, son, son-in-law, brother-in-law, uncle, nephew, grandchild – and friend to so many. If we truck on with this and support with all his natural treatments, I truly believe we can make a difference. We would love to have avoided chemo, but as they say it is “crunch time” and I don’t have it in me to gamble on my man’s life. I wish my faith was that strong, but there comes a time where you must listen to those in the know. And the difference is, I trust this doctor. He doesn’t fob off my questions or make up replies, he admits it if there is something he doesn’t know. He is a lung cancer specialist and has access to the best available treatments in NZ, as well as contacts overseas. I need to put my faith in someone, we can’t stumble down this road alone forever. And by alone I don’t mean without support, it’s just that there is no clear path when you are following alternative treatments. No-one to call in the middle of the night when you suspect a negative reaction. No one that can tell you for sure what you are doing is right or wrong, and what may or may not work. I admire those who continue down this path without fear, their self-conviction must be incredibly strong.

So there we are, an update on the situation, with much more to come. I will try to keep everyone informed as best I can over the coming days. I am also dying to tell you all more about Bali – that story kind of got cut short, but it is well worth writing about the rest of our experiences, and I hope you will enjoy reading about them.

As I sit here, on my 41st birthday (crikey how did I get that old?!), I am amazed at how grateful I still am, for everything I’ve had and have. Nige is in good form today, his energy and sense of humour high and intact. It will be a good birthday. Because he is HERE. And that is truly all I need.

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“Yeah, Hi……Um, where’s my tumour?”

Okay so it’s time for me to write again, “Yay” you all cry. After Nige’s most recent results there was a lot of confusion, anger, and sadness. It was a time to reflect not communicate, so we were silent in our grieving and fear. But not even cancer can keep me quiet for long.

Nige and I have been in a spin. Our minds are ever changing, convoluted, twisting, turning. Everyone we see offers us a new piece of the puzzle. Often it feels overwhelming, each person truly believes their way is correct. It is Nige’s task to learn what his body will respond to best. To pluck out what advice makes sense to him from each person and lesson. If only it was anywhere near that straight forward. The pressures of time and money mean we cannot try each thing for a couple of weeks, just to “see how it goes”. After Nige’s first 2 rounds of chemo we went as hard as we could, throwing EVERYTHING with a good scientific basis, as well as other less orthodox methods into the mix. And it didn’t work. Well not to the extent we expected or wanted anyway. Truly, I believe some of it must have had an effect, or things would be a lot worse by now. It was hard to “see” that following the results, but after chatting with others and gauging their expectations, and examples of other cases it seems we haven’t done too badly. But WHAT worked? That is the dilemma we face every day. Are we doing the right thing/mix/dosage? And to make matters even more difficult, the hospital can’t seem to decide where in his body Nige’s main tumour is. That’s right. They’ve lost it.

If you read my last post and/or Facebook comment you would have seen we were waiting for further clarification. We finally got this during a very successful meeting with our oncologist that went on for a good hour. This had previously been unheard of, at least in our experiences. Many (but not all) of our questions were fobbed off defensively or brushed over casually, the answers indirect or not meaningful. The air of “I’m the Doctor just listen to what I tell you to do” was so dense it was tangible. Doesn’t a patient have the right to get all the answers they need in order to make an informed decision regarding their own life? It seemed not. So what had changed? A flash of understanding and empathy for us? Or was it the fact that we had mentioned we were off to see a private oncologist soon? I guess we’ll never know.

There had been many inconsistencies between the Radiology reports following Nige’s scans. It has felt as though things that were ignored directly after chemo were, following our 3 months of alternative care, now pinpointed. Were we imagining it, going mad? Perhaps not. People working in the public health system are so time poor it seems they are encouraged, even forced, to do the bare minimum, and we are just supposed to trust and believe everything the health professionals say. Okay fair enough, I get it, they ARE the experts, and they haven’t educated themselves using Google as I often do. But here’s the kicker, they have now “misplaced” Nige’s original primary tumour, the one that they made such a song and dance about when it shrunk following the first blasts of chemo. Ok it hasn’t exactly been misplaced, but apparently it has moved. What?

When Nige had his first CT Scan shortly before the initial diagnosis, we went privately so that we wouldn’t have to wait so long for the results. The findings showed an ill-defined area of increased density within the “left upper lobe” of Nige’s lung. This was Nige’s “primary tumour” they thought. And it measured 55 x 20 x 23mm. Following this a biopsy was performed, where at the hospital, a couple of chunks of tumour were grabbed from Nige’s lungs. As we understood it, one of the samples was taken from this “primary tumour”. Okay all reasonable so far, and the tests obviously came back positive for cancer.

Leap forward to Nige’s second scan, completed through the hospital. This was the one directly after chemo which showed the excellent result. Main primary tumour, LEFT UPPER LOBE, reduced by 50%. There was also mention of a partial lung collapse in the left LOWER lobe, probably due to reduced blood flow caused by the primary tumour. THIS WAS NOT MENTIONED TO US AT ALL DURING THE FOLLOW UP APPOINTMENT. 

Flit forward again to the latest scan result, where progression was shown. There is no specific mention of the primary tumour they got so excited about last time. In fact it wasn’t until we prodded for more information that the report was revised to say “likely primary in left LOWER lobe is difficult to measure”. This was because of the partial lung collapse in this area. HANG ON A SECOND!! Wasn’t the primary tumour always in the UPPER left lung? And the partial lung collapse in the LOWER left lung? We pointed this out to our oncologist, only to be told no it’s definitely in the LOWER lobe, it always has been. Even though their report back in January clearly mentioned a reduction of primary tumour in the left UPPER lung. WTF?!!! We left in shock, not even thinking to push him to investigate further, after all isn’t that his job? Instead he seemed unconcerned that all our measurements and comparisons that show either regression or progression don’t line up.

So now we’re not really sure where Nige’s main tumour is or what it’s up too. I rang the private radiologist and they were adamant that their initial findings would be correct. Let’s hope private care is a little different. After all, this is a man’s life we’re dealing with, not just number EU***16.

The Scorpions Sting

Well that shook all of our faith. Nige’s cancer has grown again.

Apparently the full moon was in Scorpio the day we received this news. And boy did it sting.

Dark despair, anger and confusion followed. This has led us to the reality we didn’t want to face – it is even more uncertain now that Nige has the possibility of being cured. The usual rants ensued, why us, it’s not fair, I’m sick of this etc etc. We are not extraordinary after all.

But we mustn’t give up. Although we drag our feet and shuffle with the burden of fear, there is no other choice in our eyes – we must carry on and keep on trying.

Conversations go round and round, spinning faster and faster, skirting around the same point. We are back to square one, potentially even further back, and must deliberate over Nige and our children’s lives all over again.

Again, we know the chemo will probably extend his life, but to what degree of quality? On the other hand it seems crazy to carry on as we are, we have already established that repeating patterns that don’t work is madness.

We are at an even bigger tipping point than before, Nige could go downhill fast without extreme treatment. But with chemo as his treatment, we know for sure he will become weak, bald, nauseous, even poisonous.

What would I do if I were him? I cannot honestly answer this question, and don’t feel like I should. But on the other hand why should Nige suffer the terrible responsibility of this decision alone?

Do we have regrets? No I don’t think so. There is no way our family could have had the experiences and adventures we have had if Nige had continued on with chemo. And at the end of it all, the outcome may well have been the same. We shall never know. But we’ve made our decisions with eyes wide open and will not second-guess or place blame. It is our journey, our path, our reality.

I hadn’t really cried since we heard the bad news, and it was a Brussel sprout that undid me. I peeled off the top layers of not one but two of the little buggers, only to find they were rotten and eaten away underneath. And it was just so f*&#$n unfair. I had bought them in good faith. I felt lied to, cheated. This was not how dinner was supposed to go. Then Nige came over and told me to keep going, the rest would be okay. And they were. So we’ll just be grateful for the ones we have, and get on with it.

It’s not bloody over yet.

Bali Part 2: Monkeys, Buddhas, and a Shaman

The first morning in Ubud, our curiosity got the better of us and we decided to take a look at the famed Monkey Forest. After being dropped at Ubud Palace – which squatted casually on a street corner as if it always had and always would fit in – we were sucked into the vortex of a nearby market place. Just 20 minutes later we were the proud new owners of a wooden “Happy Buddha” statue, purchased for a measly 300k IDR (about NZ$30). Although we loved our new friend, he weighed a ton, and didn’t fit at all neatly into our backpack. Nevertheless we carted him all the way to and through the monkey forest, out to lunch (he ate nothing despite his appearance hinting at a different story), and then back to Ubud Palace, where we collapsed with relief into the resort’s shuttle.

I tried not to like the monkey forest but it was actually pretty cool. I quite like monkeys, maybe it’s the shared brazen cheekiness, I don’t know. They soon hoovered up our measly bunches of bananas and started to grasp unsuccessfully for such delicacies as my silver necklaces, sunglasses, forest map, and (gasp) our new robust wooden friend! Highlights were watching a smart little monkey trying to work out how to open a stolen water bottle, the cuteness of the babies, and the sight of several monkeys taking a refreshing dip in a water feature at the entrance to the forest.

From here we managed to find the meeting place for lunch (the “Bali Buddha” funnily enough) with our good friend Kirsty, who it turned out would pretty much be our guide for the duration of our stay. Lucky us! Nige still wasn’t feeling very flash. In fact prior to breakfast a very audible vomiting session had taken place in the restaurant bathroom. Unfortunately for Nige everything is rock and tiles, so the cacophony of his intestinal problems was easily overheard by the server on duty. He very kindly and tactfully offered us a pot of ginger tea “to help with nausea” and from then on we felt a certain fondness for our slightly buck toothed and chubby cheeked saviour.

After a nice catch up with Kirsty, we decided a rest back at the resort prior to the Shaman’s arrival would probably be a good idea. As we cooled off in our private pool (:D) clouds rolled in and thunder and lightening boomed and flashed. It was such a novel experience, no rain, no cold winds, just a stormy orchestra creating the backdrop to yet another fascinating conversation with Kirsty about life, the universe, and everything. These storms and conversations would continue to be a theme.

And then it was time. Tino the Balinese Shaman had arrived. Nige was up first, so I had a tortuous hour to kill. Then it would be my turn. Tino was a young Balinese man, very cool, straight up, funny and a good guy. He could swing his balance from caring and empathetic to matter of fact and practical with the ease of a trapeze artist, and had a sort of “pumped up” energy, as though he was about to participate in a running race. I liked him immediately.  

Most of you probably know a little bit about what a Shaman is. Basically they are the “medicine men” of tribes that go into a trance to heal people, physically, emotionally and spiritually. From Wikipedia:

A shaman is a person regarded as having access to, and influence in, the world of benevolent and malevolent spirits, who typically enters into a trance state during a ritual, and practices divination and healing.

Nige’s Shaman healing experience:

Normally I am a bit of a sceptic when it comes to experiences such as magical healing. Probably because I have never experienced anything to reference to and also as I was brought up to believe in science and facts that could be proven logically…..I was about to be enlightened!

When Tino (the Shaman healer) turned up at our resort room I saw a normal looking young guy, in his jeans and jacket. He was very friendly and cracked a few jokes which broke the ice, he seemed confident, friendly and just seemed like a good guy.

I really didn’t know what to expect next but decided to just go with it and see where it would take me. I took of my shirt any lay on the bed, we talked about my cancer briefly in terms of where the tumours where and of course where the big one was. He explained that my tumour was like a hard mass, like a rock and that he was going to soften it so it would make it easier for my body to get rid of. He told me he was going to concentrate my tumour with healing light energy and that he wanted me to focus on the tumour as well and imagine white light coming down from my head chakra that would flow into the tumour at the same time as he was working on it. I have done a bit of meditation over the last few months so had experienced white light and felt I could do as he asked. He put his hand over my lungs and moved straight to my upper left lung where the main tumour is, he described the position and size of my tumour perfectly. He started to apply a firm pressure directly on the spot and then asked me to do my bit and to imagine the tumour on fire, burning and melting away. After a while he asked me if I could feel the heat in my lungs, I tried to feel this sensation but couldn’t feel much beside the immense pressure he was applying. He continued for longer and asked me again, this time I could feel this warmth consuming my left lung which then flowed across to my right lung. He told me I had a strong energy and that this was working well, the spot where he was applying pressure was hot, like really hot! He continued…..I then felt the most amazing sensation, I could feel my lungs full of warmth and energy and they started to shudder or vibrate, it was quite an amazing sensation. As he finished he told me that it was good and that we had softened up the tumours in my lungs. He told me to drink what he called “king bitter” tea 2-3 times a day for the rest of my stay in Bali. Then he jumped on his scooter, returning 5 mins later with a handful of this shrub and told me to put 10 leaves in a cup of hot water and drink. It definitely had earned its name, it was incredibly bitter and was hard to drink but I managed.

During this whole thing, which lasted about an hour, Tino kept burping and spitting which was him expelling all the crap he was taking out. I asked him and he said its better out then in and suggested I do the same, it’s the body just getting it out anyway it can.

That night I woke up at 5 in the morning and vomited due to the King Bitter. It didn’t bother me much as I am used to vomiting now and figured it was my body just trying to get the shit (cancer) out of me………..

I found the whole experience quite enlightening and very believable. It was something I had never experienced before and I found Tino filled me with belief due to his confidence and actions.

Julia’s Shaman healing experience:

“Open your eyes”. 

I will never forget those whispered words, spoken while a Shaman healer pushed down on key pressure points in my neck. I felt like my sense of sight was enhanced, almost like my eyes were protruding from my head. I felt like a snake. Were Tino and I in a trance together? Well yes, it kind of felt like we were. We had slipped into it without me even noticing. There are many types of healers in Bali, and Tino seems to work mostly with emotional release through “massage“. I place massage in inverted commas because it was like no massage I’d ever had. He was rough, probing, unrelenting and merciless in his pursuit to release any trapped tension he encountered. There was no embarrassment or shame, there was certainly nothing sexual about it. But at the same time it was incredibly intimate. He had asked where my main issues were, and at the time it felt like everything was up in my head. I’ve always been a “thinker” and lately I had been finding it difficult to clear the buzzing energy from this area of my body. I mean it’s always been a problem, but at that moment is was particularly irritating. Other than this, Tino knew nothing about me other than I was Nige’s main support person with regards to emotion and information, that Nige had lung cancer, and whatever else had come up in Nige’s session. I was dying to ask Nige about this but there was no time in between our sessions! Tino focused mainly on my neck and head, getting rid of all the knots, and looking for trapped emotions, mainly it seemed relating to the loss of my mother from cancer at 16. I had not mentioned my parents, he picked up “parent issues” and that it was very strong on my mother’s side without any information from me. He said that although I had many, many sad stories, I was very strong inside, like steel. Tino picked up a lot of energy in my head, which didn’t surprise me at all, it’s like a little boiler room in there. He also mentioned the tension, sadness and anxiety in my neck, which is where I do tend to hold stress, I’m always massaging it because it’s sore. He found a lump on one side of my neck, and asked me to feel it, which I did. Apparently my neck was out of alignment! Again this didn’t surprise me, as I have always felt a little lopsided. He cracked my neck 3 times before pronouncing that my neck was straight now, and sure enough the “lump” had disappeared. Tino told me he believed Nige could heal, which was nice to hear. Lastly he effectively “rebooted” my brain using pressure points, which earlier had appeared very resistant to his attempts. When I mentioned this Tino said “Oh yeah? Let’s see who wins” which I found very funny. He was extremely confident and able, and at no time did I feel unsafe, despite the intensity of the session. As with Nige’s experience, Tino  burped constantly as he worked on me. 

After “switching me off” he left me to it. “Just enjoy, you haven’t felt this for a long time”. He was so right.

Afterwards I felt strange, detached from body. My neck felt 2 inches longer, my eyes relaxed. I felt a little unsteady as my neck was so spongy, and my body perhaps not used to being in alignment. Tino really had switched my brain off! After the initial fear and learned habit of trying to control everything with my mind had worn off, I felt very calm and relaxed, and after a meal, quickly fell asleep, exhausted.