Radiation Therapy - I'm starting to understand what's involved.

I scanned the barcode, like you’re supposed to. Instead of the “Self Check-In” machine walking me through the check-in, like it was supposed to, it printed out a slip of paper that told me I required assistance with my plane ticket and to see an Air New Zealand representative. So, I looked up and spotted a bloke, standing behind a Check-In counter with, what appeared to be, a permanent frown on his face - probably caused by the long line of passengers he was facing, all waiting to find out why they  had little slips of paper telling them they needed assistance. So, like a good little Lemming, I joined the queue.

Turns out, most of the domestic flights in and out of Auckland have been cancelled because of fog. The 10:15 flight I was booked on now becomes the 14:20 flight. Mmmm, challenging. I’m supposed to have my first radiation therapy treatment at 15:30. How do I fit a one-hour flight and a thirty-minute shuttle ride into the forty-five minutes I’ll have between arriving in Auckland and my appointment time in Epsom. After pondering this for a while, and applying my High School maths to the question, I decide I’ve either got to use my superpowers to make the plane get to Auckland faster – or – phone the Radiation Lab and let them know what’s going on. End result – my first radiation session has been put off until the next day.

I never realised – “Unaccompanied Minors” has become a big thing now. Apparently as a result of the huge increase in modern day “blended families”. While I was waiting for my flight, I watched a couple of other flights come and go, and each of them had four unaccompanied minors on them. The flight I took had five as well. Anyway…

Because Auntie Arben had been staying with us in Hawkes Bay, Denise decided to stay behind and come up to Auckland with her later in the week. For some reason, known only to females, she’d liberated a heap of Pam Ayres CDs from the library and the girls listened to them all the way from Hawkes Bay to Auckland. 

Glad I was flying.

Next day and I’m off for my first session. According to the famous explorer, Mr. G Maps, it should take about fifteen minutes to get from our hotel to the hospital. But I thought I’d better take a leaf out of my wife’s book and leave an hour early – so I arrived at the hospital an hour early. But that’s OK. Turns out they’ve got all the latest Reader’s Digest magazines in the waiting room – so…

Why does a man twist his wedding ring on his finger?

He’s trying to work out the combination.

They call it the “Bunker”. It’s where the Linear Accelerators are. There’s three in this facility. Four months on from my surgery (almost to the day), and despite all the appointments and scans I’ve had, this is the first time I’ve seen one.  They’re pretty impressive machines. These three are the latest and greatest and have CT scanners attached to them. Remember how I was going to have this treatment in Palmerston North with a “not very nice” outcome? Apparently the CT scanners and the newest software are the things that are going to save my eye.

The “round” bit above my head is the “business end”. That’s where the radiation beam comes from. The flat plate opposite, is the CT Scanner. The way it works is that after they’ve bolted your head in place, the head of the machine rotates around you while a CT scan is taken. They compare this image to the planned image and small adjustments to the machine and table are made by the software to make sure they deliver the dose to the exact same place every time.

Ever wondered what it looks like to the experts?

This is me.

The yellow line defines the area that cops the full radiation dose. The green line is like a cliff. The radiation dose drops to “bugger all” (that’s the correct technical terminology) when it gets to this line. The outer blue line defines the total area affected by the treatment. Each day the CT scan, combined with the software, makes sure that the dose is delivered with an accuracy of less than one millimetre. Pretty fancy, eh?

So, two down, twenty-eight to go. We’re staying at the Alexander Inn in Newmarket. We tried to get into Domain Lodge (run by the Cancer Society) but for the six weeks that we’re in Auckland, they only had a week’s vacancy. Given the increasing numbers of patients requiring accommodation and the plans to centralise more of the treatment facilities in Auckland, I wonder if it’s time for them to think about expansion, or another facility?

Anyway, this place is nice. We’re in a large studio room at the moment – bedroom, kitchen and lounge combined – but we’re probably going to move to a one-bedroom suite in a few days. The management here have been very accommodating. I’m pretty sure they had to move a few other guests around to get us in on such short notice. (Two days).

After the treatment today we walked down to Newmarket on a bit of a discovery tour. Found a Yoga Studio, so Denise has signed up for some classes. Lots of nice shops and plenty of places to eat. No supermarkets. There was one in the Westfield complex but it’s being done up at the moment, so the nearest one is about a thirty-five minute walk. 

Quite a way to go for a loaf of bread.

No treatment tomorrow so we’re going to try our luck with the buses. We’re planning to try to get to Castor Bay. Could turn out to be an adventure, but if we get stuck there’s always Uber. Let’s hope the rain’s stopped by then.

So... Here's what I think.

After reading my last Post, a friend replied by sharing a News Article from RNZ and she asked this question…

“I've been thinking a good deal about what you've shared in your last two blog posts. I can see from your experiences that there are some profoundly disturbing aspects to the randomness of treatment & consultation processes that you have experienced. And the lack of coherent flow of information is woeful & unacceptably stressful & burdensome to patients. So... I imagine that this re-frame (see link to article below) would be a very good move. Would that be true?”

You can read the article here…

https://www.facebook.com/100000828565998/posts/2266951403342456?sfns=mo

Catherine, thank you for this. I’ve been thinking about how to reply for a few days now, and while I don’t normally express my own views and opinions in a public forum, this question is probably a good excuse for me to tell everyone what I think.

So, paring back the article to a fundamental question…

Should there be a National Agency to oversee Cancer Care in New Zealand?

My answer would be – Probably Not.

My reasoning…

I’m not sure what the formation and operation of such an agency would contribute to improving a cancer patient’s pathway. While walking my own path, I continue to meet others on their journey who have experienced confusion, frustration and ongoing costs due to “disconnects” between services. I don’t think a National Agency would alleviate these issues to any great extent.

If I was King of New Zealand, I would establish a Health Service Patient’s Advocacy. Not just for cancer patients, but for all major medical events where a person requires ongoing interaction and care from the Health Fraternity. Within this Advocacy would be people who have some experience with “The System”. They might be ex-patients, or ex-medical professionals, but they would need to have some form of experience with the Medical Treatment Pathway and know, without reservation, that they are to act in the best interests of the patient. They would, with the patient’s permission, be given access to information to assist each individual as they navigate their own course. They would also be able to create bridges to remove the “Disconnects” that patients face.

In my experience, there are two different types of “Disconnect” that occur. One is between Departments within a DHB. For example; Ophthalmology and Radiology, where delays and miscommunication seem to be almost the norm. In my case it took the intervention of an ORL Nurse, advocating for me, to get me back onto the right path. Even then, instead of having a CT Scan of my head and eye, I received a “full body” scan. Gotta say, the Eye Specialist was a little surprised to be looking at a scan of my abdomen.

The other type of “Disconnect” is between different DHBs. There doesn’t seem to be any ongoing communication pathways between DHBs whatsoever. In fact, quite the contrary. Staff within each DHB seem to almost go out of their way to ensure the least amount of information possible is shared with their counterparts at other DHBs.

Case in point: I was under the care of a Medical Team in Hawkes Bay who referred me to a Medical Team in Auckland for treatment. While in Hawkes Bay, the level of communication between all concerned, including my GP was excellent. While under care in Auckland the level of communication diminished noticeably. I sometimes didn’t have a clue what was going on, nor what the plan for me was going forward. At one point I asked some of the Auckland Team members if they were keeping the Hawkes Bay Team appraised of my progress. The short answer was: “No.” It seems the protocol was that information was only sent back to the Hawkes Bay Team at the end of my treatment. It turned out that, after being treated for an infection for two weeks, then undergoing an eleven hour surgery, followed by a period of recovery, the information that was sent back to the Hawkes Bay team and my GP was a two page summary of my treatment.

When I got back to Hawkes Bay, there was no one in “The System” who knew what had happened to me while I was in Auckland, nor did anyone know what further treatment was required going forward. It took weeks, and a weekend trip to the Emergency Department, for me to get the attention of people in Hawkes Bay who, in my mind, should have known what was required, even before I was discharged from Auckland. This wasn’t just a single incident - it involved the Maxillofacial Clinic, the Ophthalmology Clinic, the Physiotherapy Department, Radiology and my GP.

It would be great to have someone to act as a “go to” person. To make sure there were no unnecessary delays in appointments or treatments, and to act as a liaison between different DHBs and departments. As a patient, it would be very reassuring and comforting to know that there was one person you could “go to” for any and all issues relating to your treatment.

After reading Trevor Flood’s story, I really wonder what his outcome might have been had there been someone in “the System” acting on his behalf, and being able to intervene when things became “too hard”.

To read Trevor’s story, click on the link below…

https://www.tvnz.co.nz/one-news/new-zealand/builder-suffers-brain-damage-after-receiving-pain-relief

Somewhere in these words is my answer to the initial question. I think the creation of a National Cancer Agency would simply add another level of ineffectual and expensive bureaucracy that wouldn’t address the needs of patients. But taking a broader view, I believe there is another issue in New Zealand that is having an ongoing detrimental effect on patient care - being, the ludicrous number of District Health Boards we have in this country. But perhaps that’s a discussion for another day.

And me – I’m still sitting around at home waiting to find out when and where I go to from here. Is it Palmerston North for Radiation, probably followed by more surgery on my eye? Or is it Auckland for Radiation, after which, hopefully, I get to keep my eye.

I wonder who I should ask to find out?

No!! Not that way - Let's go this way.

Well, this is becoming a real trip. Last week, the Palmerston North (PN) Radiation Oncologist decided he wanted to see me again before the radiation treatment started – so, Tuesday morning, and we’re off to PN – again. We tried to get the Nurse who set up the appointment to ask the doctor to phone us but, he said no. So here we are again, driving for five hours for what’s probably going to be a thirty-minute face to face.

I couldn’t sleep last night. I spent the night composing a rant to deliver to the Oncologist for wasting our time and money. Problem is, he’s such a nice guy, and so well meaning that it’s hard to get upset with him. Anyway, it seems the reason for the appointment was to tell us that there’s no way he could plan the therapy without causing more damage to my eye, so we went over the CT Scans again while he explained why. Then we started talking about options… Seems there’s two…

Option 1 – Take my eye out before treatment starts – which means I wouldn’t be able to start the radiation until I’d healed from the surgery.

Option 2 – Leave my eye alone, put me on pain killers after the treatment, and sometime in the future, when the pain becomes too great, give my right eye the flick.

After a long discussion, that seemed to go around in circles, he rings my Eye Surgeon to get her thoughts. While I couldn’t hear her side of the conversation, from his responses and demeanour, and after quite a short conversation, it seems Option 1 is off the table – the eye’s not coming out.

So, we all agree on Option 2.

But wait – Let’s see what Dr. G has to say at tomorrow’s appointment.

So, next afternoon we go and spend some quality time in Hastings Hospital while we bring Dr. G up to speed and – he rolls out Option 3.

He knows there’s a radiation machine in Auckland that’s way more advanced than the PN ones, and this would be able to target the problem area much more precisely. Then, straight away, he’s formulating a plan. He’s going to talk to “someone” in the HBDHB to make sure it can happen – He’s going to talk to “the guy” that runs it, to see if he’s confident the treatment would be more successful – He’s going to talk to someone in PN to make sure everyone’s happy there – and, next thing, he’s telling us to go home and not worry.

So we do.

Two days later and I get a call from Dr. G. It’s all sorted. The Radiation Oncologist has reviewed all my data and is confident they can protect my eye during treatment, but he wants to see me before the treatment is planned. As Dr. G is telling me this, I’m having a bit of a mental mind explosion and start asking stupid questions. Eventually I get my brain to start functioning again and after listening to me asking questions that don’t really make any sense, Dr. G asks me straight up:

“Do you want to keep your eye, or do you want to go ahead with the treatment plan in PN?”

After me replying with an emphatic “Yes, I want to keep my eye”, he puts on his Travel Agent hat and tells me they’ll sort out all the logistics and call me again early next week. So, then I wander out to the kitchen to tell Denise. Her immediate reaction – a word comes out of her mouth at quite a volume that kinda confirms she’s got a Potty Mouth.

Now, here’s a question…

Suppose your name is Joe Average and you’re in a similar position to me. If you haven’t got someone who knows the “System” and is working in your best interests, how do you find out about stuff like this?

If I hadn’t had an appointment with Dr. G the day after our PN visit, I would have “blindly” gone ahead with the Radiation Technique in PN, never knowing of a better path. And… if Dr. G wasn’t looking after my interests and fighting on my behalf, had I found out about the machine in Auckland, how would I have gone about getting access to it?

So, I guess through next week I’ll find out a lot more. Here’s hoping, anyway.

 A couple of weeks ago I saw an Event posted on Facebook for a fundraiser for the Cancer Society. I wandered along yesterday to have a nosey. What an eye opener.

A group of teenagers from one of the local High Schools had decided to organise and run a fundraiser because cancer had affected a number of them over the past few years, and those not affected wanted to show their friends their support. These young adults, in their early to mid teens, showed those who attended what it means to offer tangible and practical support to those travelling along the cancer road. From the boys and girls cooking the sausages and selling cakes, to the young artists who performed to entertain the crowd, watching you showing your support in whichever way you could was both humbling and gratifying.

And then – some of the youngsters got up on stage and told their stories. This took things to a whole different level and showed a level of courage and strength that I can only hope to emulate. It also reinforced the idea that – no matter how hard your day is, always look for something positive to focus on.

Congratulations to all those involved. Feel proud – because you should.

Now, back to me -

It’s some ten days since I started writing this. I’ve been hanging off posting it, waiting to find out what’s happening. I found out the outline of the plan this morning. Denise and I are going to Auckland on Friday or Saturday to meet the team at Mercy Hospital. This is where the “Flash Harry” machine is located. If the Specialists at Mercy think they can save my eye, they’ll start formulating a plan. This’ll probably take another couple of weeks, and then Denise and I will be staying somewhere in Auckland for about six weeks after that.

If they can’t protect my eye, then it’s back to Plan A and Palmerston North. I wonder if I’ll have to go to the back of the queue? I hope not. It’s already been three months since the operation. According to “everybody” I should be well into my treatment by now.

Anyway, there’s so many unanswered questions now that I’m at a point where I’ve stopped asking. I’m quickly coming to realise that, for a lot of them – no one knows the answers. If I step back a bit and think about this, it’s probably the way it should be. Is it better to wonder what’s going to happen, rather than have someone create an expectation in your mind that may or may not eventuate?

I think in my case, it’s easier for me to not have some questions answered. This lets me twist things in a positive direction in my mind – then if things do go pear shaped, I’ll be able to deal with them from a positive point of view. I realize that Medical Professionals have a responsibility to warn you about all the things that could go wrong, but sometimes, I just want them to stop talking. I think if people keep reminding me of all the negatives, it’ll just do my head in.

See, even now, after knowing just a little bit about Auckland and the treatment plan, I’ve created a scenario in my head about how it’s all going to unfold. It’ll be interesting to look back later to see how my imagination compares to the reality.

But for now – I think it probably time to go and watch one of the British Panel Shows. They’ve become my “go to” when I need a laugh. I think Taskmaster is probably my favourite.

Take care of each other, and make sure to be kind to yourself.

"I'm Special" - that's what they keep telling me.

I wonder why staff from different DHBs don’t talk to each other when they have a patient in common?

I also wonder why, when you suggest to someone that they do, the person your're talking to can immediately find any number of reasons why they can’t, or why it’s not a good idea.

For a whole host of very good reasons, of late I’ve been involved with three DHBs: Auckland, Hawkes Bay and Mid-Central. At various times during appointments at each of these DHBs, I’ve been asked questions – or I’ve asked questions - about procedures, tests and scans that occurred at other DHBs. In pretty much every case, the question’s gone unanswered. A lot of times, I’ve been very tempted to explain to the person I’m talking to, how phones, texts and emails work. But, to my credit, I’ve held my tongue.

Now, even though I’ve been involved with the medical profession in New Zealand for a long time, my actual knowledge of medical processes, terms and nomenclature is less than zero. I know this ‘cause just about every time I try to use a medical term, the person I’m talking to corrects me. So, not only don’t I know the correct terminology, I use incorrect terminology. I wonder if this is causing me to ask less questions then I should.

Turns out; getting rid of the cancerous tumor in my face was the easy bit. Even though the surgery was a big deal (I was worked on by two surgical teams for eleven hours) all the stuff that’s come after is proving to be much more of a challenge. Both to me and to Denise.

Last Tuesday we had to go to Palmy to have the Radiation Mask made and for a couple of scans – one of which was a CT Scan of my head - and then last Friday, I had to have another CT Scan of the same area in Hastings. Now there are probably any number of good reasons why the same CT Scan can’t be used by both doctors, but I’m buggered if I know what they might be. It’s not that I’m worried about the number of CT Scans I’ve had. According to Dr. Google the compound effect of multiple CT Scans is negligible. It’s more that it seems to point to inefficiency and waste in our medical system.

Listen to me! I wonder if getting my brain fried is leading to me growing a social conscience. Let’s all hope not.

Anyway, I had two appointments last week. The first one was with the Hand Therapist to have a special glove fitted.

Now just to backtrack a bit – it seems you only get to see the Hand Therapist if you are referred by someone. Interestingly, no one’s ever said anything about this, so I can only assume that the referral was done by the Physio from Auckland that fitted me with a wrist support soon after the operation. But if you want a referral apparently you can just ask your GP for it.

It’s basically a compression sleeve that’s used to reduce the scaring and the swelling from the donor site. It does this by forcing the blood and other fluids away from the site. It seems to work quite well. After wearing it for a couple of days the swelling just below my elbow reduced quite a bit.

The Therapist used a special paper “thingy” to measure the circumference of my arm every four centimeters from my elbow to my wrist. This was sent to “Stralia” and a week later the glove turned up.

You can see how the inside of the sleeve has little “bobbley” bits. These apparently do most of the work.

So, then it’s on to the next appointment. This one with the Eye Specialist – and, guess what? We found another Gremlin in the system. Turned out that everyone – the booking clerk, the receptionist, the nurse at the clinic – all knew about the appointment. The only person “they” forgot to tell was the Specialist. Gotta say, she looked a little surprised when she called into the clinic about three-quarters of an hour after our appointment time and saw us sitting there.

Anyway, after a while rearranging some things we got to talk about my eye. Now, to be fair, we actually already knew how the discussion was going to go, ‘cause we’d received the CT Scan results before the appointment. Thanks again to “Manage My Health”. (This really is a great tool for doctors and patients.) It seems one of the major issues with my eye – but not the only one - is that the lower eye muscle is “catching” on the mesh that makes up the lower orbit of my eye – or, there’s scar tissue catching the muscle as it tries to move. Either way, it’s a problem that doesn’t have an easy fix. So, the next step – an appointment with the Maxillofacial Surgeon. Hopefully between the two of them they can work out a way forward.

As if things aren’t complicated enough… I’m supposed to start Radiation Therapy next week, but that might not be a happening thing now. We got a call from the Radiation Centre in Palmy the other day and they want to see me again before they lock in the program. Apparently, the Oncologist is having trouble with the planning – whatever that means. I guess I’ll find out soon.

Hopefully the Radiation Therapy won’t be postponed. Seems it will cause damage to my eye anyway, so, it would be good to get past this so we know how bad things will actually be, rather than just guessing what’s going to happen.

Do you know how confusing it is to buy an eye patch? There’s any number of patches you can buy for kids, from Jack Sparrow types to Frozen types. Not so much available for big kids. I picked up a couple of cheap cardboard ones from the chemists. But seems there’s not much call for them, unless you’re into Cosplay - I wonder if I could get one from the King of Asgard. He probably won’t need it anymore.

Anyway, I think I’ve found one on Fishpond, so we’ll see what turns up. When I’m inside I can use my glasses with the right side covered but when I’m outside, any sort of breeze gives me grief, and it’s looking more and more like it might become a permanent, or semi-permanent, thing.  

So, now looking forward to another big week of appointments. Maybe by the weekend I’ll have a better idea of what’s going to happen. Time to stand tall and just shrug it off. I’ve decided if I don’t have control over things going forward, what’s the point worrying about it.

I know you are already, but remember to keep being kind.

A Guest Post by a Head and Neck Cancer Survivor

The Post below was written by an inspirational lady from Auckland who has traveled the cancer road for a long time. The subject she is writing about is important to everyone, not just those of us who have fought cancer.

Please take five minutes to read her wise words, and please follow her advice and share this with your family and friends. Awareness from reading this could save your life as well as your loved one's lives. 

If you would like to read more about "Maureen's Journey", please click on the link in the panel  to the right.

I’m older than you, please listen

Campbell’s Bay Primary School was closed for a while in the early 50s because of the polio epidemic and when the vaccine became available we were first injected with the Salk vaccine and some years later (1962?) lined up at school and made to drink the famous Sabin vaccine from little paper cups.

There wasn’t much objection from the anti-vaccination brigade. Children were being paralyzed and placed in iron lungs. There was a worldwide panic. Beaches were closed.

People of my vintage might remember reading classic novels where there was always a character whose life was changed forever by smallpox scars. I read that smallpox was so bad in London that the vaccination became compulsory for a while in 1863.

What about TB? Katherine Mansfield.

Measles was milder but also dangerous. I think I was about 9 when I got it. I was in bed for two weeks with the windows covered in dark gray army blankets. Children’s writer Roald Dahl lost his nine year old daughter to measles. Anti-vaxers seem hellbent on letting this scourge return.

Now I’m in the cancer support volunteering business after several brushes with head and neck cancer which has disfigured and disabled me a little bit. My cancer was not HPV related but similar in its treatment to those that are.

HPV related head and neck cancer responds better to treatment than non HPV but a lot of patients still suffer a world of grief. Four of my head and neck cancer friends are currently facing awful long term effects of treatment and one has metastases to the lungs.

Guys, this type of head and neck cancer is almost totally preventable!

When it was realised that the HPV vaccination could prevent throat cancer it started to be offered to boys as well as girls. It has been very effective in preventing cervical cancer in women.

In our little circle of similar countries it was first offered in Australia where the inventor of the vaccine is from and then NZ and the UK.

Sadly the uptake has not been stellar in NZ since it became freely available in 2017. Vaccinations are optional and parents might vaccinate their kids against measles, mumps and chicken pox (some don’t) but fail to have their 12 year olds vaccinated against HPV.

Why? The sex stigma probably, as well as the loud voices of the anti-vaccination brigade, now amplified by social media.

It’s hard for some parents to admit to themselves that their babies are going to have sex and indeed probably oral sex which is the main way the type of HNC caused by the HPV virus is transmitted.

It’s hard to admit that for herd immunity you have to vaccinate everyone at 11 or 12 before they are sexually active. Maybe this fact will help: they need to be vaccinated then for best results because that is when the body takes up the vaccine best.

I haven’t been squeaky clean when it comes to vaccinations. I’d heard vaguely of the shingles jab being funded for people over 70. Did I take up the offer? No. I was invincible.

How wrong I was as my friends on Facebook told me last night. Shingles in AWFUL. I have an appointment at 11.45 today.

Vaccinations have changed the face of health care since the late 1600s. The world waits for vaccinations against the Zika virus and Ebola. We can only dream of a vaccine against cancer.

But wait, there IS one! HPV cancers like cervical cancer, anal cancer and throat cancer CAN be prevented. There’s a VACCINE.

Get your kids vaccinated now to prevent them from getting this horrible cancer in their young middle age!