CBC’s “the fifth estate” on Canada’s drug problem

On Friday 13 January Canada’s CBC’s “the fifth estate” programme featured a topic that has been an issue of concern to me for more than a decade – the high cost of pharmaceutical drugs. At the end of last year several people from CBC’s the fifth estate team came to New Zealand to investigate New Zealand’s solution to the problem – the establishment of PHARMAC – for an episode which focuses on what they refer to as Canada’s drug problem.

Canada is the only country in the world that has universal health care but no universal drug coverage. That means millions of Canadians cannot afford life-saving medication; they are splitting their pills, cutting back on their prescriptions, going deep into debt – and sometimes even dying. I was one of a number of people in New Zealand who were interviewed for this programme which can be viewed at:

http://www.cbc.ca/fifth/episodes/2014-2015/the-high-cost-of-phamaceuticals-canadas-drug-problem

UPDATE: Here is a link to the same program on YouTube:




Hassling Waitemata DHB for the next CT scan

I had a wonderful week at Pukehina beach, followed by five days in Whangamata with all my children and five of my grandchildren. The days in Whangamata began with my second son bringing me a cup of tea first thing in the morning, sitting on my bed and then chatting about things like what lies ahead, the decisions to be made, how we are feeling, our work, etc. My daughter joined us on the second morning and these conversations resulted in important and potentially life-changing discussions and decisions amongst the others. It was truly an amazing and emotionally rewarding five days.

UPDATE: A few photos of our day trip up to Hot Water beach

However I returned from holiday to find myself having to go into battle for my next CT scan. My oncology clinic appointment on Tuesday 10 January focused on whether I would be turning up for the next three chemotherapy sessions. As I hadn’t even been given a date for the next CT scan I was urged to resume hassling Waitemata DHB and not give up until I had an appointment. Dr S. informed me that he had ordered a scan for me for the first week in January 2017 back in November because he wanted to try and avoid any delays. He also had another three patients experiencing similar problems getting a scan and I think he hoped that I could get things sorted for all of us.

It was difficult to make an informed decision about having further chemotherapy without having the CT scan result which would reveal the effects of the first two months of paclitaxel. So I made an uniformed one – no more chemotherapy until I had had my next scan. And for the next three days I started my day by phoning both Waitakere and North Shore hospitals and was repeatedly referred back and forth between the radiology booking clerks at the two hospitals. On the third day, I was kept on hold for over 40 minutes, and because I was in serious danger of dying from boredom I decided to call the same number on another phone line and see which would get me through first. Much to my delight the second phone call was answered within a few minutes and within an hour I had received a call back advising me that I was booked for a scan first thing on Tuesday morning.

I just hope that the other three patients of Dr S also got their appointment times as well. It’s exhausting having to fight so hard to get what you need to make an important decision about your future treatment.

 

 




Lynda in the New Years Honours List!

It’s son number 1 again, taking over briefly to add a blog post that Mum never would.

The New Years Honours list is in the NZ Herald today and it includes Mum! She is to be inducted into the New Zealand Order of Merit for services to women’s health.

The award means a great deal to our family and we owe a debt of gratitude to many of her friends and colleagues who organised this. The submission included 13 letters of recommendation from people she has worked with over the years. It is a huge honour for all our family as it recognises the dedication and passion Mum’s has put into her craft. It is richly deserved award for a life’s work.

Well done Mum!

The full honours list is here:

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11774706

 




Another family Christmas and a holiday at Pukehina beach

This year’s Christmas meal took place at my third’s son newly extended and renovated home just round the corner from me. It was great to be there with the whole family and to celebrate us having made it through a very difficult year.

It is also a real treat to be invited back to Pukehina beach to see the new year in as I have done – thanks to my friend and her partner – for a number of years. It is always a wonderful time of reading, sleeping and eating, and in anticipation of having a three week break from my Friday chemotherapy sessions, I hope to be able to start to enjoy eating again.

On 4 January the whole family is getting together at a large bach at Whangamata. for five days. It is big enough to sleep all 14 of us. My children have become very adept at finding places that will accommodate us all.

When I return I will have some difficult decisions to make regarding whether I will resume chemotherapy. But until then I intend to forget all about it.

Update: some new photos

Grandkids water fight




A visit from my eldest grandaughter

Last Friday my second son and his eldest daughter who is visiting from Australia drove up from Ngaruawahia for an overnight stay. After several days of wind and rain the weather had settled and so the three of us headed out to Te Henga for an evening of live music, good locally-produced food from the Bethells café and a stroll down to the beach. There were ageing hippies, young hippies, ordinary folk, children and dogs all enjoying a magical early summer evening at the beach.

In the 1970s and 80s my children spent many summers being taken out to Te Henga for picnic lunches, or BBQ dinners over open fires with many of our friends, so this is a very special place with lots of happy memories for our family. It was therefore important to me to go there with my 15-year-old granddaughter.

The following morning my son took some photos of grandma and granddaughter underneath the pohutukawa tree that was planted on one corner of the section of the property over 40 years ago. This year it is spectacularly in flower which comes complete with the buzzing of hundreds of bees which can be heard from sun-up to sundown. Given it had very few blooms last year this year’s brilliant red extravagance is most welcome.

Before they left I began planning for my granddaughter’s next trip across the ditch for her sister’s 9th birthday in April, and for another special place that I would like to take them both to.

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Reducing the dose

It took a couple of days before I got a response to my email to Dr S. stating that I was having another week of feeling very tired with no energy to do anything, and feeling nauseous all the time. I simply could not continue with the chemo regime I was on. He agreed to lower the dose of paclitaxel but did not say by how much. I did not get an answer to how much until I was in the chemo day stay ward. After waiting for well over an hour – they were very short of nursing staff again – I was taken to the usual room and I began the discussion on what the dose would be. At first they thought the chart indicated another full dose, but a check revealed that it had been reduced by 20%. Only then did I agree to go ahead with the fifth round of chemo.

I am now hoping the reduced dose will give me a week which includes days of feeling okay.

I am now on two slow-release morphine tablets a day and this is keeping the pain at bay extremely well. This week I resorted to having a few puffs of cannabis twice a day which has largely dispensed with the nausea I have been experiencing that was making life so miserable. It also helps me feel hungry, a rare treat these days. I am at the lowest weight I have ever been. I have used cannabis on and off all year to try and deal with the increasing pain and discomfort, and to stimulate my appetite, but it works best for me in controlling the nausea.

Tomorrow the family is travelling down to Ngaruawahia to celebrate my youngest son’s 23 birthday at my second son’s place. I remember making the journey last year and wondering whether this would be the last time I got to celebrate his birthday. Today marks 14 months since I received my diagnosis – and I am still here, determinedly hanging on for a few more months in the sunshine.




Difficult decisions

After four weekly chemo sessions of paclitaxel, I have been revisiting some of my decisions as a result of the impact these are having on me physically and emotionally. While the side effects are not as many or as severe as those I was experiencing on PEXG, I am now finding that I have very little energy to do the things I want to do for most of the week. And I definitely need some days of feeling okay to make this worthwhile.

Last Friday I was again admitted to the Acute Oncology ward because I had been feeling terrible the day before and woke up on Friday morning and decided that I felt too ill to cope with chemo. I emailed Dr S. and told him how I felt. He asked me to come into the Acute Oncology ward. I had been admitted to this ward earlier this year following three sessions of PEXG so I was familiar with the routine. After questioning and examining me, one of Dr S’s registrars decided that there were no severe ongoing symptoms that would preclude me from going ahead with the chemo, so after trying unsuccessfully to get a shorter dose of paclitaxel, I finally agreed to the fourth chemo session of the full dose. It went without incident, and I felt okay when my friend dropped me home again.

However, after three days of feeling terribly tired and with very little energy, I have decided that I want the dose reduced, before I agree to any more chemo. While Dr S.’s plan – as he outlined it at last week’s oncology clinic appointment – was for 9 weekly doses of chemo, followed by a CT scan to check if it is working the way he hopes it will, and if it is then another 9 sessions of chemo,

I now have a different plan. It is one that doesn’t involve me spending another whole summer on chemo and all the appointments and feeling lousy that go with it. I am going to take a two-week break over the Christmas New Year holiday time so that I can take the wee holidays I have planned, and I will send Dr S. another email telling him of the decisions I have made.

These are difficult decisions to make, but my body is telling me very clearly that it is too much, and this time I am going to pay attention.




A tough week

It has been a tough week. But the chemo is not responsible for it being a tougher week than usual. Sure I have little energy on Mondays and Tuesdays, but that’s not difficult to cope with. It’s a walk in the park compared to PEXG.

Session three went without incident, apart from a mix-up in appointment times. As I headed in to the day stay unit for my 2pm treatment I received a phone call asking me if I was coming in. I was told I had been due in at 11.30am. I got out the letter and assured the caller that the letter I had been sent said 2pm. So my friend and I got a bit flustered at that point. However, once I was in there and all hooked up everything went well. I discovered that I was not the only one who had been sent letters with incorrect treatment appointment times. So I got my next three appointment times checked to make sure we were all in agreement with what the times were on their data base.

My difficulties coping with my week was caused by people. I really thought I had got passed the stage of people I know reasonably well trying to challenge or undermine the way I have dealt with my diagnosis and disease, and with the choices I have made about how I want to live the rest of my life. But I was mistaken.

It never fails to amaze me the boundaries people are prepared to cross when dealing with people like me who have chosen to accept their terminal cancer diagnosis and get on with living the rest of their life the way they want to. Making the most of each day, each week and whatever time I have left is not good enough for them. I should be chasing miracles, constantly repeating positive affirmations, living in hope, and adopting their philosophy of life. My choices obviously make some people very uncomfortable as was made very clear by the call I got on Monday. It took all my energy to deal positively with the woman on the other end of the phone who seemed totally incapable of listening to anything I had to say.

I was confronted with another person two days later when I turned up to a meeting I usually turn up to. “Lynda, what are you doing here?” she wanted to know. Now this is not the first time she has asked me this. I replied that I intended to continue with the life I had been living prior to being diagnosed with cancer.

I cannot understand why this is so difficult for some people to comprehend or accept. I have few regrets, and I feel so privileged to have been able to have the kind of life and work I have had. Why would I want to give it up and charge off chasing miracle cures or sit around waiting to die?

She then grasped my shoulder in what may have been intended as a friendly gesture which was unfortunately followed by a comment said far too loudly (I was sitting with a bunch of 10 – 12 other people) “oh, you are all skin and bone!” I heard myself responding very defensively “Yes, well, I have lost a bit of weight since my diagnosis and treatment.”

It isn’t enough that these people may mean well. Their thoughtless behaviour can cause considerable distress. Fortunately, I am now linked up with some invaluable hospice services. My fortnightly art therapy sessions (no, I can’t draw – these are one to one art therapy sessions, not art classes), and more recently my fortnightly upper body massage have helped me overcome most of the issues to do with my feeling alienated from my body that I have plainly laid bare in previous postings.

And my diagnosis has revealed that I actually have a great many friends who have rallied round me in so many ways and comforted and supported me. I don’t have the words to adequately describe how thankful I am and how loved and treasured I feel.

Then there is my wonderful family who have also been there for me, each in their own way, all the while dealing with their own grief and distress at the prospect of losing their mother.

So as we prepare to celebrate the 5th birthday of my youngest grandchild tomorrow, I count myself as one very lucky woman. I am content – and happy most of the time – and I am looking forward to really enjoying the coming summer with family and friends.




Session two of paclitaxel

Session two of paclitaxel also passed without my experiencing any adverse reactions, but in some ways I found it harder to cope with this time. At one stage I felt close to tears as I contemplated the weekly trips to the oncology day stay unit that lay ahead, the insertion of the needle that sometimes goes smoothly and without any fuss and sometimes doesn’t, and all the other activities such as weekly blood tests and three weekly trips to the oncology clinic that being back on chemotherapy involves.

It didn’t help that the unit seemed really busy and/or short staffed, everything took longer than last week, and there were delays between the various processes. It was quite crowded when I arrived, the insertion of the needle was prolonged and has left a bruise, there was no privacy which became extremely disconcerting at various times, and I felt utterly exhausted by the time I left nearly four hours later.

Next week there will be no need to begin with a slow testing of the infusion with paclitaxel so it should be much quicker. I asked my ex-husband to explain to me again (he had done this last week but I had forgotten what he said) how this drug worked as it is different to the four PEXG drugs I had earlier in the year. I find it helpful knowing how the drug is working to prevent the growth of the tumours.

As I did not have any severe side effects during the week in the lead up to the second session I am not expecting any this week either. But time will tell, and this time I will be paying much closer attention to any signs that my body is telling me “enough already.”




Two celebrations

Over the past week I have celebrated two events. The first was my daughter’s 39th birthday which I celebrated with a special lunch with her and her husband down on the Viaduct Basin in Auckland. I was able to enjoy my very favourite food – raw oysters. These are such a big treat for me. No matter how off my food I am I can always eat raw oysters. It was also such a lovely sunny day – my daughter tells me her birthdays are always warm sunny days no matter what the weather is on the days before and after her birthday. This year’s birthday was no exception.

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The second cause for celebration is that my first weekly session of chemotherapy of paclitaxel the following day went without incident. No adverse reactions. It took three hours as they proceed very slowly and very cautiously for the first two sessions due to the fact that one in four people experience an adverse reaction to paclitaxel infusions. Most are mild, but non-the-less I was very anxious. I wore my special “I survived PEXG” t-sheet to give me extra courage.

I also had three supporters with me for the whole time. It wasn’t till the infusion was almost complete that I remembered that I had forgotten to ask one of my team to fulfil one very important task! Should I experience an adverse reaction, and once the situation was under control, I wanted one of them to go back and ensure the others having chemotherapy in the same room I was in that I was okay. By the time I remembered this, I had passed the test.

I am now home and feeling just fine. I had a fortified smoothie for dinner followed by a good night’s sleep. If I can just ignore the results of the American election, life is looking pretty good right now.

I’ve also just added a new photo of me with my eldest son and daughter-in-law at the evening with Ben Goldacre to the blog post that I wrote about some weeks ago:

An evening with Ben Goldacre