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.