Ugly Tuesdays – a comedic piece

Today I’m having an ugly day.

When I have ugly days they’re usually on a Monday or a Tuesday. Have you ever heard of “suicide Tuesday”? It’s not really funny but Nige and I joke about it when we’re having a bad day on a Tuesday, and most of our bad days do seem to fall on this seemingly innocent day of the week. My understanding is that the term “suicide Tuesday” refers to drug users coming down off their weekend binge. Apparently by this day all of the drugs have left your system, and you feel pretty darn low. I have never actually considered suicide on a Tuesday, so it’s really a bit wrong of me to flippantly fling the term around, but up until now it’s been done privately, so I guess it’s okay. I apologise in advance to anyway this offends, it would never be my intention.

Anyway back to the ugly. It’s not so much an appearance thing, although I definitely find ways to hassle myself about the way I look on days such as these. It’s more of a feeling-ugly-on-the-inside kind of day. I’m angry at everyone and everything, no-one can so much as peep without me finding a hidden insult. But it’s not them, it’s me, and that makes me even more mad. It’s ridiculous really, I mean how can I have changed so much in a day that I have crashed down from smart to stupid, love-able to despicable, attractive to hideous troll, nice girl to evil shrew, mum of the year to mummy dearest. Deep inside I know I’m being silly, throwing my toys around and stamping my feet like a misunderstood child, but sometimes it feels so good to drop the adult doesn’t it?

Perhaps I need to wallow in my pit of misery and hate on occasion in order to appreciate everything I have and am. Perhaps some days it’s just too hard to pretend I’ve got all the answers, and know what’s going to happen next in my life. That I’m always going to get it “right”. Because that’s kind of what being an adult means doesn’t it? Feeling just as scared, angry, sad, confused as a child at times but still having to maturely soldier on and keep that facade of coping up for the rest of the world to gaze upon in awe. Keeping it together and having a clue because adults are all strong and tough and stuff. But it can be so darn tiring saying “fine” or “good” or “no problem” all the time, can’t it?

I know that everyone who loves me will want to try to make me feel better, and isn’t that great, knowing that people care enough to take the time to do this for me? But that’s not what I need, so don’t anyone worry. I just need to write, and quite frankly have a good laugh at myself. Because my ugly isn’t real, it’s just an excuse to give in for a day. Feel feelings, express insecurities. Say them out loud so they no longer hold any power over me. Sometimes I just want to be an ugly, childish, stupid cow for a day. After all who doesn’t? Come on, who’s with me?

The Hippocratic Oath Hypocrisy

If you’ve already read the blog just prior to this one, you’ll know Nige now has cancer in his brain and bones. If you haven’t read it yet, you can do so here

We only discovered this because, out of frustration with the lack of consistency in the public system, we paid for a PET scan to be done privately. This act may have saved Nige’s life.

You have probably all heard of the Hippocratic Oath, some of you may even have taken it, and if so, I commend you on the path you’ve taken, it’s not an easy one I’m sure. For a recap:

From Wikipedia:

The Hippocratic Oath is an oath historically taken by physicians. It is one of the most widely known of Greek medical texts. In its original form, it requires a new physician to swear, by a number of healing gods, to uphold specific ethical standards. Of historic and traditional value, the oath is considered a rite of passage for practitioners of medicine in many countries, although nowadays various modernized versions are often used.

Scholars widely believe that Hippocrates, often called the father of medicine in Western culture, or one of his students wrote the oath.

You can read the original oath and the modern version here

Here is an excerpt from the modern oath that struck a chord with me:

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. I will prevent disease whenever I can, for prevention is preferable to cure.

Huh. Not the impression I got from our dealings the public health system. Does this oath not extend to terminal patients? Why should their rights be any less just because of statistics? (And we all know how reliable statistics are!) The various medical codes demand that all patients be treated equally, yet in my opinion, terminal patients clearly are not.

Let’s look at Nige’s history once more:

4 November 2014: Diagnosed with stage 4 cancer of the lungs, with no apparent spread to other organs.

5 December 2014: First visit with public oncologist. Treatment available chemo – Carbo/Gem combination. Genetic testing discussed and possible treatments if most common mutations present. We asked if a PET scan and brain MRI would be done, and were told no, unless symptoms presented this would not be necessary. At the time we thought this was strange, but surely the doctor would know best and have Nige’s best interests at heart? Surely.

19 December 2014 – the day before Nige’s Birthday: First chemo treatment. We fight to keep Nige’s body healthy during the chemo. Told no intravenous Vit C or green tea during chemo as it may effect it (no shit it’s trying to protect the immune system while chemo destroys it) but eating a diet rich in fruit and veg is okay and even encouraged in cancer literature (i.e. a high Vit C diet!) Apparently a consultant had come to the hospital to tell nurses to advise patients not to drink green tea during chemo as it might stop the chemo from doing its job. THIS HAS NOT BEEN SCIENTIFICALLY PROVEN! Nor is it scientifically proven that High doses of Vit C inhibit chemo.

30 January 2015: Great result – shrinkage in main tumour, everything else stable – we think – stand in doctor couldn’t really explain results very well.

26 February-2 March 2015: Trip to Rarotonga – Nige experiences bad nausea, 1 or 2 vomits, and a lack of appetite.

24-31 March 2015: Nausea and Vomiting

5 April 2015: America! Nausea and vomiting, which eased after Nige began taking the Medical Marijuana we got hold of.

17-19 April 2015: Bad nausea and vomiting, Nige not feeling at all well.

19 April 2015: Bali! Started off with BAD nausea and vomiting, no appetite, but this improved about half way through our visit.

4 May 2015: Results show progression of cancer. Nige very down after this. Doctor fully aware of Nige’s history of nausea, vomiting and weight loss at this stage. Mentions weight loss every time we see him. No suggestions made as to why this is happening, just the push for more chemo. My dad and I mention a PET scan and/or MRI, doctor makes it clear they will only do an MRI if obvious symptoms present, not as a precaution. They don’t do PET Scans at all. These seem to be standard in many other countries.

9/10 May 2015: Weekend in Auckland, Nige really not well – down in dumps, low appetite, sleepy, headaches, enlarged lymph node, lethargy, very breathless, very hoarse.

13 May 2015: Saw doctor. Told of headaches – doctor said didn’t sound like brain tumour. Acknowledged enlarged lymph node near Nige’s collarbone was probably cancerous. Agreed cancer heading up towards head. Again only offered chemo, and said Nige should get some ASAP. The same chemo as before. But I thought he had said this chemo arrangement might not work anymore since Nige took a break from it? Oh well, what has the doctor got to lose?!

16 May 2015: Vomiting all day – thought perhaps he had a stomach bug as it improved the next day.

23-29 May 2015: A weekend of vomiting, not great all week, good improvement by Monday but by end of week unwell again nausea and vomiting wise. During this time Nige finally has his first PET scan – privately.

30 May 2015: Pukawa – vomiting again, seems to be getting more frequent. This continues until the Wednesday night, when he is prescribed strong steroids which finally control it.

3 June 2015: Nige diagnosed with spread of cancer to brain and bones – the brain tumours will be causing the nausea and vomiting. Cancer in the bone can lead to an increase of calcium levels in the body which also causes nausea.

So hang on, even though lung cancer commonly spreads to the brain, and Nige has a clear history of nausea, vomiting and weight loss obviously NOT caused by chemo, and we know CHEMO CANNOT KILL OR PREVENT BRAIN TUMOURS, there has been NO offer of an MRI. Should the doctor not have seen Nige’s persistent and increasing incidences of nausea and vomiting as obvious symptom of a brain tumour and SAID SOMETHING? We were out there frantically trying to work out WHY this was happening to Nige, and it seemed no other lung cancer patients, while our SPECIALIST quietly sat by and watched it happen, going back time and time again to his standard spiel of “chemo”. EVEN THOUGH WE KNOW CHEMO CAN’T SHRINK OR PREVENT BRAIN TUMOURS. Even though we had asked on more than one occasion for an MRI. EVEN THOUGH THEY KNOW WITH STAGE 4 CANCER THERE WILL LIKELY ALREADY BE CANCER CELLS IN THE BRAIN. We were made to feel as if Nige’s nausea and vomiting symptoms were simply regular symptoms of lung cancer, and that this was to be expected if we didn’t take his precious chemo. Again we stupidly trusted that if the doctor, our specialist oncologist, thought Nige had a brain tumour, he would have done something to us. Will we never learn? Well I think we finally have now.

Nige cannot receive further treatment, chemo or otherwise, until his brain tumours are dealt with. Once again, the public system were happy to merrily push on with chemo even though there was a chance Nige could have brain tumours, however now they KNOW (thanks to us) that he has brain tumours, they agree he MUST have brain radiation first. Hmmm, can anyone else see the flawed logic that governs this system? With regards to treating Nige’s brain tumours, we decided to take the private and public routes at the same time, partly because of cost, partly so that we had 2 opinions, and partly because we were curious to see how they both played out so we could compare them.

Nige’s meeting with the private radiologist was first. It was a very positive consult, with the radiologist saying he would attempt to clean up 99% of what was going on in Nige’s head. He laid out a comprehensive, aggressive plan, using the latest technologies. After performing a detailed MRI down to 1mm accuracy, he would target the tumours in Nige’s brain. Individually first (stereotactic radiation), followed by some light whole brain radiation, using up-to-date methods which would enable the doctor to shape the radiation beams in order to avoid the hippocampus, the area of the brain which forms and stores memories. Without this protection, dementia like symptoms might present, transiently short-term, but perhaps permanently long-term. Obviously if this area is protected, there is a possibility that if there are tiny cancer cells there they won’t be treated. But in a study by the University of Maryland, which describes using this method on lung cancer patients with spread to the brain, only 4.5% of patients subsequently developed disease in the hippocampal area.

You can read the study here

Let’s now compare with the public system. Our meeting with the radiologists at Wellington Hospital seemed to go really well at first, but soon the inconsistencies started to build up. Both the doctor and his superior were very intelligent, and answered our questions confidently and with a good attitude. However when we got down to the nitty-gritty, the same old pattern emerged. Treat the symptoms, the “Band-Aid” effect. You’ll only get the “best” treatment, which more than likely won’t be available anyway, if you are deemed “worth it”, if your cancer is being “controlled”. They speak of death and how much time you have left – more statistics – rather than hope. I always leave the hospital feeling depressed and downtrodden, devoid of hope, no matter how many times I try to protect myself first, no matter how many pep-talks I give myself afterwards, the feeling stays with me for days. I can only imagine how it is for Nige.

Their plan was to start off softly and then build up only if needed, so to begin with whole brain radiation using a CT Scan as a guide (this is much lower resolution than an MRI but I guess all that is needed if you are blasting the whole brain). They would only move on to stereotactic radiation if the rest of Nige’s cancer was being controlled and managed (i.e. you’re following their plan, the chemo is working to stall or shrink the cancer, and therefore they deem you’re worth saving). They re-iterated it was not a cure, they wouldn’t even attempt to completely eradicate the brain tumours, treatment is used purely to control symptoms such as nausea, vomiting, headaches and paralysis etc. There would be no follow-up CT or MRI, they would simply keep an eye out for these symptoms. They may or may not re-treat, depending on how well you are at the time. They expressed concern for exposing patients to too much radiation at the beginning, as this may mean they could not take more at a later date. We asked our private radiologist if, after Nige’s intense primary treatment, he would be okay to receive more radiation at a later date. This doctor’s answer seemed to be sure, no problem. So does the public system have a “quota” of radiation you’re allowed? Is it truly based on protecting the patients’ health and quality of life, or does it just relate to more budgetary restraints? As for the hippocampus protection mentioned earlier, this is not yet available at Wellington Hospital, but it will be soon, and if it was, Nige would only be “allowed” it if, once again, his other cancer was being controlled. However when I asked if they had only just diagnosed Nige today, and it was available, would they use it, she said yes. What?! So once again a patient’s treatment depends on flimsy statistics and vague references to likelihood of survival and “quality of life”. My question is, why do the doctors get to decide what your definition of quality of life is? Just like why do others get to decide how and when a terminal patient such as Lecretia Seales dies? When did we lose all this control over our own lives? Once again our basic rights and needs as living breathing creatures are nowhere to be seen. Why do we continue to take this shit?

Let’s look at the NZ Medical Association Code of Ethics. Here are a few requirements I picked out that I don’t believe have been properly fulfilled in our case.

  1. Consider the health and wellbeing of the patient to be your first priority– Our public oncologist’s non-disclosure of important treatment knowledge and the Band-Aid treatments on offer already strike this one off in my opinion. 6. Strive to improve your knowledge and skills so that the best possible advice and treatment can be offered to the patient– Our public oncologist either doesn’t know about or doesn’t care to find out about or express other treatment alternatives. In fact he has incorrectly advised us a number of times as he is clearly not up-to-date with what is happening in his area. 7. Adhere to the scientific basis for medical practice while acknowledging the limits of current knowledge and contributing responsibly to innovation and research – Hmm, Green Tea consultant anyone? 8. Honour the profession, its values and its principles in the ways that best serve the interests of patients – The best interests of the patient? Why then do be never get the treatment or information we request without a struggle, or the best options available? Best serves the hospital and its budget seems more accurate here. 9. Recognise your own limitations and the special skills of others in the diagnosis, prevention and treatment of disease – Our public oncologist clearly knew we weren’t keen to head down his path, knew Nige wanted to fight this aggressively, and yet never suggested we see anyone else, never bothered to investigate any of the new information we presented him with. Never recognised his limitations, which we sadly discovered were numerous.

You can read the full Code of Ethics document here

WHAT WE HAVE HERE GOOD PEOPLE IS BLIND FAITH

We trust that the medical profession always know best, always have our best interests at heart and would never delay treatment unless it was okay for treatment to be delayed. I believe we are lying to ourselves if we trust that these statements are true. I had lunch with a lady the other day who had painful kidney stones. They were discovered early during a pregnancy, and could have been treated cleanly by a machine that travels around the country some time ago. However she was told to wait, and now they are incredibly painful and difficult to treat. She has been given an appointment 3 months from now and told that she needs to take morphine for the pain in the meantime. Morphine. FOR 3 MONTHS. I have a horrible feeling that there are many, many more stories like hers out there – feel free to comment with your own at the end of this blog!

Any who, what Nige and I have learnt about the health system over the past few months basically boils down to 6 points:

  1. Go private if you can. This means having health insurance. I don’t believe Nige would be alive right now if we hadn’t have gone partially private. It’s not one of those insurances you’ll never use, you can claim back doctors’ visits, prescriptions, dental work and more. I hate to say it, but at my age, something is bound to go wrong health-wise in the next few years. It’s great to know I can get the best treatment possible.
  2. Always get a second opinion. I don’t think I need to expand on this further!
  3. Do your own research or get a family member or friend to help you. Don’t take everything you are told at face value. Doctors are only human and therefore fallible.
  4. Question, question, question. There are no stupid questions when it comes to your health, it’s the health providers job to inform you, if you don’t understand something keep pushing until you do.
  5. Use your GP. Whether you have a relationship with them or not, in our experience they are usually happy to refer you on to a specialist, they shouldn’t refuse if you insist and there is good reason. If you don’t have a good relationship, change your GP!
  6. TRUST YOUR INSTINCTS! Your gut never lies 🙂

From Wikipedia also:

Hypocrisy is the claim or pretense of holding beliefs, feelings, standards, qualities, opinions, behaviors, virtues, motivations, or other characteristics that one does not actually hold

You be the judge.

I asked God to complicate my life, so I could write

“I asked God to complicate my life, so I could write”

The above is a one line poem I wrote in my teens. I feel the need to say I don’t believe in God in the traditional sense, but the meaning behind that one line is more relevant to this blog anyway. I DO have a complicated life, I believe I have assisted some way in making it become so. And it does make for good writing. But if I had the option would I re-write my life? Maybe if I knew the people that surround me could only stop suffering, I would. 

It feels like every time we try to zoom in on and control Nige’s cancer, a new development occurs. This time it’s a real shitter. After deciding we’d had enough of guessing where and how big Nige’s lung tumours were, and to try and get on top of any cancer we couldn’t yet see, we went private and got Nige a PET scan. Something that is routine in other countries, but too expensive for our public health system to cope with. Cancer has a higher metabolic rate than other cells in the body, causing it to “light up” during the scan – like fireworks. This makes it much more accurate when compared with the standard diagnostic tool – the CT scan. Which by the way, is still far more accurate than the tools used when my mother was ill, x-rays and palpitations!

From first diagnosis Nige has experienced nausea and vomiting to varying degrees. It’s fair to also say he has always had a “sensitive” stomach. But there was no doubt in my mind that recently his episodes had become more and more frequent. Was it the alternative treatments or the cancer? So hard to know at the time. Vomiting isn’t common in lung cancer unless it stems from the use of treatments such as chemo and radiation. And until last week no other symptoms had led us to believe the cancer was anywhere else in Nige’s body. Sadly we were wrong.

It seems procedures such as MRI scans, which are used to scan the brain for tumours, are also not suggested in the public sector until undeniable symptoms such as loss of balance or paralysis present. Basically the oncologists and their patients are forever chasing their tails, people are treated – the stable door closed – after the horse has already bolted from the stables, so to speak. This means by the time disease is discovered, a plan formulated, and treatment begun, it may already be too late to salvage the situation.

Nige’s cancer has spread to his bones and brain. At first diagnosis there would have already been tiny cancer cells in these areas, once cancer is in your lymph nodes it is all over your body. But if we had had a PET straight away, we would have known for sure if it was already big enough to be seen in his bones and brain. Instead we find out now, and see that there are multiple tiny lesions along his spine and other places, as well as 4 small brain tumours. Nige’s bones will be leeching calcium, which can induce nausea, plus there is swelling at the back of his brain brought on by the biggest tumour. This is almost certainly the cause of the incessant vomiting. Nothing alternative we have tried so far has been strong enough to control this. The only option we have at the moment is strong steroids followed by brain radiation. Not a route we would take if we had any other choice, but a brain is not something to gamble with! I kind of like Nige’s, and most of the thoughts that dwell within :).

We are not blameless, Nige and I have made mistakes, although I still believe we made the best decisions we could BASED ON THE INFORMATION WE HAD. If we had gone private right from the start, I have no doubt we would have followed a different route, and may not have arrived at the place where we are now. I just hope we haven’t screwed up too badly. Hey we gave the alternative thing a really good go, and so far it has failed to work with the strength, accuracy and swiftness we require. It’s time to go more mainstream. I am not giving up on the idea that diet, juicing, and myriad other supplements can and will help Nige over time, it’s just that we don’t now have the luxury of time. Now we must heal with both barrels blazing, using everything we have at our disposal. 

You may remember the reason we stopped chemo after 2 rounds. We had read of the many incidences of reoccurrence of cancer all over the body, just months after treatment. After as little as 4 rounds of chemo, it remains a fact that in some cases the immune system is so badly compromised that it can no longer fight the cancer at all. Then there are the many, occasionally permanent side effects, including “chemo brain”, weight loss, nausea, vomiting, exhaustion and a really lovely one – severe nerve damage. The chemo we were first offered was not even targeted, and the success rate very low. It certainly didn’t offer a cure. Once Nige had tested negative for the most common mutations, the search for genetic mutations ended. Other types of chemo were mentioned in a perfunctory manner, but not promoted or accurately explained. Immunotherapy was vaguely tossed about as if of no consequence. IT SEEMS THAT DOCTORS IN THE PUBLIC SECTOR ARE NOT ALLOWED TO PROMOTE ANYTHING THEY CAN’T OFFER THROUGH THE HOSPITAL, EVEN IF IT MAY SIGNIFICANTLY PROLONG A LIFE. This we figured out after seeing our fantastic new private oncologist. We walk away from his office full of hope and optimism, with our questions frankly and intelligently answered. ALL of our options laid out before us, not just the ones that are cheapest or more well know. It’s really quite disgusting, in this day and age, in this country, that the gap between public and private could easily equal living with cancer versus dying from it.

If we had known there was a chemo better targeted to Nige’s type of cancer, that he had cancer in his brain and bones, that there were more tests we could do that WEREN’T a waste of time, our path would have unfolded in quite a different way. We made the decisions we made because we felt pushed into a corner. We fell in the “doctor is always right” trap, even though our instincts didn’t buy it at the time. Because we really didn’t want to believe information would be withheld just because the related treatments weren’t easily available. I am an excellent researcher, but I am not an expert, and that is what we needed way back then to make informed, intelligent decisions. I feel regret for trusting someone I never felt right about from the start, I feel regret for not getting the PET scan done right at the start, for not going private right at the start. Because at that time, I didn’t know it could mean the difference between life and death. I know that now. I shudder to think where we would be now if we hadn’t gone private with the CT scan, and now with our oncologist. If we hadn’t had fantastic health insurance, and the amazing support of knowledgeable and helpful family and friends. It doesn’t bear thinking about, and it’s so wrong that in a country like New Zealand, people with less money and resources get sub-standard health care when they have a serious disease. It’s not the people working in the public health system that are to blame, it’s the system itself. Very sad.

The day after we found out about Nige’s cancer spreading, his good friend’s sister, Lecretia Seales, passed away due to an aggressive brain tumour. I’m sure you would have seen her on the news lately regarding her bid to legally die with assistance. This devastated Nige. Then there is Alex, the boy in Wellington Hospital stuck in the midst of a constant seizure while his parents try desperately to legally obtain CBD for him, as time runs out. We attended the protest in support of legalising medical marijuana, outside Wellington hospital today, and I’m so glad we did. 

On Wednesday we attend Lecretia’s funeral. All around us pain and suffering for those who can’t and shouldn’t have to wait for change. I can’t re-write their lives, any more than I can my own. But I can write, and tell everyone of our journey, as objectively and honestly as I am able. It may not be much, but hopefully it is enough.