Lynda on Radio NZ this Friday

While searching the Radio New Zealand site today for some Brexit commentary, I stumbled across an ad for Lynda’s upcoming segment on Nine to Noon with Kathryn Ryan (see below).

Auckland listeners can tune in to 101.4 FM at 10:05am on Friday 1st of July.

You can also listen live by clicking the Listen Live: National link at the top of the Radio NZ website.

I’ll be sure to come back and upload the audio to this blog post once it is published on radionz.co.nz.

Update: Here is the audio of the interview

 

Lynda Williams - 9 to Noon Radio NZ National

 

Great photo Mum 😉

 




Battling Waitemata DHB for best care

It is intolerable to still be battling the health system over its ridiculous decision-making processes and its inability to deal with the whole person rather than just focus on one of their health issues. I really resent it, as I don’t know who to contact when the DHB is behaving badly and not living up to their promise of best care for everyone – http://www.waitematadhb.govt.nz/About-Us/Our-Promise-Values

Since my visit to Waitakere hospital’s ED department on Tuesday 10 May which resulted in the lancing of the huge  and inflamed sebaceous cyst on the back of my neck, I have had to have dressing changes for the wound every other day. After several weeks it was obvious to my GP and to all those involved in the constant dressing changes I needed that a permanent fix was required as the sebaceous cyst was still oozing and would have to be completely removed, probably under a general anaesthetic.

My GP referred me back to Waitemata DHB. Weeks went by and two weeks ago I began trying to find out when I could expect to get an appointment. After several telephone calls with one of the booking staff which involved my explaining that my limited life expectancy must be taken into account, I was told last Thursday that the referral from my GP was graded as P3 and I would not get an appointment for four months! How does the doctor who made that decision know that I will still be alive then, I asked her, or that if alive I will be in a fit state for surgery? Does he or she know that I have pancreatic cancer? She was unable to answer my questions. I suspect that the decision was made solely on the basis of the sebaceous cyst, and not in the context of a cancer patient with a very limited life expectancy.

Having to have dressing changes every second day is making it increasingly difficult to make the most of the months I have left, to travel out of Auckland for more than a few days at a time, for example. The wound has now become very sore, and at a time when I had hoped to be free of the health system for a few months I am tied to having to have dressing changes for a constantly oozing and increasingly painful wound, and unable to make travel plans with my family and friends

When I told my GP I would have to wait four months for an appointment, he sprang into action on my behalf, but to no avail. Fortunately, I then received a completely random phone call from Waitemata DHB about a patient story I had done for my brother who died at Waitakere hospital in June last year – see http://www.waitematadhb.govt.nz/Patients-visitors/Patient-stories

She wanted to tell me how my story was being received, and also to know how I was doing. When I told her about the current problem with the DHB, she said leave it with me. A few hours later I had an appointment to see a surgeon on Monday 4 July.

The issue of how patients with more than one serious health problem are dealt with by the DHBs in Auckland is not unique to me. I have friends and family who have had similar problems, and friends who are currently having similar problems. The silos of different diseases and body parts that our health system is divided into doesn’t work for patients, and often works against their health and well-being. Things need to change and time is running out for me.

 




Lynda in the NZ Herald today

It’s number 1 son taking over the blog again to let you know about the article on p10 of the NZ Herald today about Lynda. In case any of you missed it, here is a scan of the article.

There is also a video in the online version here:
http://www.nzherald.co.nz/health/news/article.cfm?c_id=204&objectid=11659481

Me and my siblings are all very proud of you Mum.

2016-06-20_Lynda1 2016-06-20_Lynda2

 




Resorting to books

It’s now over eight months since I was diagnosed with cancer, and I still have not met anyone else with pancreatic cancer. This despite five months of fortnightly sessions of chemotherapy in the Oncology day stay ward where I learned to keep my head down and listen out for what drugs the others in my room were being given which would have given me a clue as to whether they had pancreatic cancer. I quickly learned that my acceptance of my terminal cancer diagnosis and my refusal to begin a battle with my cancer was rather unusual and not welcome to patients or staff. Given that people with the most common type of pancreatic cancer and the one that I have – exocrine pancreatic cancer – have already lost the battle long before they are diagnosed with it, there really is no point in fighting it. For me, learning that my life expectancy was now measured in months not years had quickly resulted in the decision to make the most of the time I have left. It definitely didn’t include climbing on some rollercoaster of a ride of highs and lows chasing miracles cures.

So I abandoned the second of the very early decisions I made – not to buy any more books or any new clothes – and took myself and some book vouchers I had been given off to the Women’s Bookshop in Ponsonby Road and bought four books and ordered a fifth. Returning to my car with my bag of books, I took one of them out of the bag and began to read and didn’t stop until I had finished the first chapter, titled “Diagnosis.” I read like a severely dehydrated woman who had just been handed a large glass of cool clear water. Jenny Diski may not have pancreatic cancer, but her description of getting her terminal cancer diagnosis certainly rang many bells for me. She describes leaving the doctor’s room after getting her diagnosis:

“One thing I state as soon as we are out of the door: “Under no circumstances is anyone to say that I lost a battle with cancer. Or that I bore it bravely. I am not fighting, losing, winning or bearing.” I will not personify the cancer cells inside me in any form. I reject all metaphors of attack or enmity in the midst, and will have nothing whatever to do with any notion of desert, punishment, fairness or unfairness, or any kind of moral causality. “

Yippee! I have finally found a kindred spirit!




My bucket list

Queen’s Birthday weekend was the date set to do the only thing I actually had on my bucket list when I first received my terminal cancer diagnosis. It proved to be an incredibly special weekend not just for me, but for all of my children and the five of my six grandchildren.

For a start the weather was brilliantly fine with cloudless blue skies which were the perfect backdrop for the breath-taking beauty of the snow covered mountains. See photos below. Some of us arrived at the Tongariro chateau just before 5pm on Friday and were also treated to the spectacle of the windows of the chateau glittering like gold in the setting sun.

None of us really knew what to expect as although we have gone skiing on Mt Ruapehu most winters, none of us had ever been inside the chateau. Also our ski trips are nearly always to Turoa rather than Whakapapa. I spend most of my time on the mountain on the beginners’ slopes and I have always gloried in being able to spend time in what for me is such a sacred place. At the age of 52 I had even managed to climb to the top of Mt Ngauruhoe, and have also been to the top of Mt Ruapehu. But sadly, I won’t ever get to do the Tongariro Crossing.

We were all immediately won over by the luxury and service provided by this wonderful place. A few days after my return home during a phone call from my mother I learned that my parents had honeymooned in the chateau in 1949. I was able to tell her that yes, the large fireplace in the lounge area was still there and it was still framed by the enormous paintings of the pink and white terraces.

I had booked bed and breakfast accommodation packages for us all, and our long and leisurely breakfasts were one of the highlights of our weekend there. We were absolutely spoiled for choice and you could even make your own smoothies.

On Saturday morning after breakfast we all headed up the mountain. Because the ski season was still a month away we were able to park at the top carpark and have fun in the snow around the buildings. It was a beautiful sunny day and we all had a great time. Some of the grandchildren had not been in snow before. Unsurprisingly the first snowball was thrown not by any of my grandchildren but by son number 3 (see video below). He scored a direct hit on son number 1 who, as usual, was busy videoing us all. And then of course we all joined in.

After an hour or so we traipsed into the café and had lunch. In the afternoon we did a short walk to one of the waterfalls. This was followed by time in the plunge pool in the basement area of the chateau for the grandchildren and repeated trips between the sauna and plunge pool by son number 4, an activity he indulged in on all three days. Sunday followed a similar pattern although some of us chose to forgo a second trip up the mountain in the morning and lounge in the luxury of our rooms instead.

We had booked the restaurant for dinner for both Saturday and Sunday nights to ensure that they would be able to cope with all 14 of us, and on both nights we assembled in the lounge at 5.30pm for drinks. The view of Mt Ngauruhoe in the setting sun from the huge arched window was simply stunning. As I have noted previously, my family tends to be a rather rowdy bunch, and on the second night as we filed in we found that we had been placed at a large table at one end of the restaurant. Juliet, our waitress on both nights, was very attentive, and coped well with being at our beck and call. I think she had been told that this was a bucket list event. However, I am sure she had never experienced hearing bits of some of the unusual conversations that occurred at our table.

On the Sunday evening, much to my astonishment, my son-in-law began by waxing long and lyrical about childbirth and it proved very difficult to shut him up. He ended the evening on one of his favourite topics – his time as an animal rights activist in his youth and the evils of zoos.

On the Monday, after another fabulous breakfast, we began the journey back to Auckland, having shared the most wonderful weekend we have ever had together. It had been a perfect and memorable weekend in a very special place with my much loved family. Another reminder of what a lucky woman I am.

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http://www.youtube.com/embed/epJ6nGJtB6A