The Last Word

It has been an amazing week and one that this time last year I wasn’t sure I would live to see. On the evening of Monday 13 February, my sister drove me into the city to attend the book launch of Ron Jones’ book Doctors in Denial: the forgotten women in the ‘unfortunate experiment.’

There were around 200 people at this auspicious event, a veritable who’s who in the community of people who have continued their involvement in various ways in the health field post-Cartwright. For some of us it has been a 30-year battle to ensure the radical changes to the health system brought in in the wake of the Cartwright Inquiry that took place in 1987/88 were maintained. We have lost some battles, eg New Zealand’s ethics committees, the four that are controlled by the Ministry of Health, no longer have the protection of research subjects at the heart of their work, and are now focused on expediting research trials in New Zealand due to the fact that the research industry is big business these days. And New Zealand’s National Cervical Screening Programme, another significant outcome of the Cartwright Inquiry, is also in danger of being weakened by changes in the process of being introduced. But over the past three decades we have kept the faith, gathering at the Spirit of Peace statue in front of what was once National Women’s Hospital on 5 August each year to remember the women who died as a result of Herbert Green’s ‘unfortunate experiment’ at National Women’s Hospital, as well as those who survived but were seriously harmed.

Ron Jones wrote this book in order to set the record straight following ongoing attempts by some doctors and academics to rewrite the history of what happened at the hospital in the 1960s through to the 1980s and who continue to maintain there was no experiment and Herbert Green was an innocent man falsely accused by a bunch of anti-doctor feminists. Ron Jones is a retired obstetrician and gynaecologist who worked at the hospital over several decades and was one of the authors of a paper published in 1984 in a prestigious medical journal that blew the whistle on what was happening to the women who were unknowingly part of Green’s experiment and were developing cervical cancer.

Reading Ron Jones’ book was on my bucket list. And attending the book launch proved to be a hugely emotional event due in part to the fact that after almost 30 years the College of Obstetrics and Gynaecology finally fronted up with a public apology to the women and their families –

http://www.stuff.co.nz/national/health/89373585/doctors-college-apologises-decades-after-unfortunate-experiment

Clare Matheson, who was one of Herbert Green’s “guinea pigs” who developed cervical cancer, was also at the book launch and she described being there to witness the apology as one of the most moving events of her life. It also had me and a number of others in tears.

Doctors in Denial makes for a riveting read. It is definitely a must read. So go out and buy a copy.

 




The Investiture Ceremony

During my January appointment with Dr S. upon hearing about my being included in this year’s New Year Honour list he urged me to explain to Government House that I had terminal cancer. I was extremely reluctant to do this, but he was insistent. He was willing to support a case for my investiture ceremony being held earlier than the late April event being planned for those receiving their medals in Auckland. He wanted to ensure that I would still be in as good shape and spirits as I am now and would be able to enjoy the ceremony with my family, rather than being unwell and arriving in a wheelchair. My eldest son agreed with him and joined in the efforts to persuade me.

Eventually I agreed to do this. I subsequently responded to the letter I had received from Government House asking me whether I would be attending the Auckland or Wellington ceremony, and explained that I had terminal cancer and my oncologist insisted I advise those organising the ceremonies of my life expectancy issues.

I received a phone call from a lovely woman at Government House a short time later offering me a special investiture ceremony for me and my family in February. I was also told I could bring 10 – 15 family members with me instead to the usual six. Given that I have five children most of whom have partners and six grandchildren wanting to attend the ceremony this news came as a welcome surprise and was great cause for celebration.

So at 2pm on Thursday 9 February the Williams/Wilson/Ballantine/Bhamra/McGrigor family tribe (the amount of surname changing that has gone on among my family of four sons and one daughter is a whole chapter in itself) assembled outside the gates of Government House and once the roll call had been completed we were allowed inside the gates. We were ushered into the main reception area and then into the room where the ceremony was to take place. The Governor General, Dame Patsy Reddy and her husband, Sir David Gascoigne came downstairs in due course. A brief ceremony took place with Dame Patsy reading out the citation and then pinning the Member of the NZ Order of Merit (MNZM) medal on me. Official photos were then taken followed by afternoon tea being served while we chatted. I introduced the whole tribe to Dame Patsy and told her how thrilled I was to be being presented with my medal by a female Governor General who her husband told me proudly happens to be only the third female Governor General; Dame Cath Tizard and Dame Silvia Cartwright being the first two.

It was a very emotional event, much more emotional than I had expected. One of my sons told me later that they were moved to tears during the presentation and they were all so very proud of me. It will be something special for them all to remember me by.

After the formalities were over we were taken on a tour of the grounds by two of the military people there and at 3pm we were ushered back through the gates. After a spending a brief time under the trees at Albert Park so the grandchildren could run around and play, we then migrated down to the Viaduct where we had the most sumptuous meal at Ostro’s restaurant. It was a fabulous end to an incredibly special day. And one that would not have happened if my children had not intervened during our weekend stay at the Tongariro Chateau in June last year.




CT scan result

Despite my misgivings Tuesday’s appointment with the oncologist went very well. As Dr S. was on annual leave I was aware that I was going to be meeting with a different oncologist. Fortunately it was someone I had seen once before and had felt comfortable with.

The CT scan I had two weeks ago revealed that there had been no visible change to the tumours or to the amount of ascites fluid in my abdomen since the CT scan I had in October last year. After discussing the side effects I had experienced on paclitaxel with the oncologist he told me he supported my decision to discontinue having any more chemotherapy with this drug. As there are no other chemotherapy drugs available for pancreatic cancer this means I have come to the end of the line as far as treatment – which was always palliative anyway – is concerned. It was time to say goodbye to the oncology clinic and the day stay unit and face the next phase. For me this appointment represented a very significant milestone as I was consciously and firmly closing the door on treatment options. I really appreciated the oncologist taking the time I needed to go over the issues (sometimes I needed to return to a particular issue more than once) I raised with him and to answer all my questions as well as those of my son and ex-husband.

So what exactly is the next phase? In answer to this question the oncologist said that hopefully I would experience a few months of feeling as good as I do now. Any ongoing care will be provided by my GP and the West Auckland hospice. And then? No, we didn’t go there. And then the cancer takes over I thought to myself, and I become progressively sicker and weaker. I just hope that the final phase doesn’t last too long..

So it’s now time to put a few more things on my bucket list and tick them off.




A wonderful weekend

The first long weekend of the summer was a really special weekend. For a start after three warm sunny days with no gusty winds it felt like summer had finally arrived. Then there were the family events we had planned. On Saturday I got to tick off another event I had recently put on my bucket list – go with my children and grandchildren to Coromandel town and go on the Driving Creek Railway. I had imagined we might do that during our wee holiday in Whangamata but it was too far to travel for the grandchildren.

So upon returning to Auckland my third son investigated the possibility of us all taking the ferry to Coromandel and returning later the same day. On Saturday that is exactly what we did. As none of the grandchildren and all but two of the adults aside from me had not even heard of the Driving Creek Railway, it turned out to be a really worthwhile and magical trip for all 16 of us. The weather was perfect. We arrived in Coromandel, had a bite to eat for lunch and then got the bus to the Driving Creek Railway. The adults were just as excited as the grandchildren as we slowly wound our way to the top and the magnificent views from Eye Full Tower.

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Once we were back again in Coromandel we settled on The Pepper Tree restaurant and bar as the place to relax and chill out for the next couple of hours until it was time for the bus to return us to the ferry. It was made even more special when a waitress unexpectedly appeared with half a dozen freshly gathered raw oysters in the shell and placed them in front of me – ordered by my son-in-law. I fell asleep in the ferry on the way back after what was for me a really long day.

Sunday was my dad’s 90th birthday and my sister had prepared a birthday lunch for him at her place for family and friends. When it came time to light the candles on the birthday cake, we sang happy birthday and my sister read out a wonderful and very emotional email from our brother who lives in Perth and was unable to make it over the ditch because he was at sea. It was another very special occasion, and one that this time last year I did not expect to make.

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Monday was spent relaxing at home, pottering in my garden while my youngest son mowed the lawns, and having a friend come visit me. It was good to spend time with her and voice my feelings about my appointment at the oncology clinic and getting the results of my CT scan two weeks ago.