Four trees

Over the Easter break the family gathered together at my son’s home for a shared lunch followed by the planting of four trees. The previous weekend he and I had been to a tree nursery and bought a large kauri tree, a large pohutukawa tree and two smaller pohutukawa trees in preparation for this event.

However, the events leading up to this particular family gathering had actually been set in motion over a year ago. Some months after learning I had terminal cancer, I finally made up my mind about whether I wanted to be cremated or buried. For decades I had wavered between cremation or burial, and now it was time to decide. I chose to be cremated, and I told my children that I wanted my ashes to be buried at the place that had been my home for 42 years. They thought about what that would mean for them and some weeks later came back to me and explained that after my death they would really like to have a place they could visit. This wouldn’t be possible if my ashes were buried here at home as once the house they all grew up in had been sold it would then be inaccessible to them.

After further discussion and some creative thinking, we found a way of my staying in the area. My third son and his wife live just around the corner from me on several acres of land which at various times of the year support a few pigs, some sheep and cattle, chickens, and two bee hives. It also has lots of mature fruit trees, some wonderful kauri trees and other mature trees. We decided that my ashes will be buried at my son’s place, and in order to avoid a similar scenario should my son and his wife decide to sell their property and move to a new home in the future, we came up with a plan. My ashes will be buried in a way that allows for them to be retrieved and buried elsewhere.

Having decided on the exact spot where my ashes will be buried – next to a rock that was already there when my son bought the property – a space has been created for the four trees and the outdoor garden seat that we also intend to buy. The spot has a peaceful rural outlook across a valley that has lots of trees and only a few houses.

After lunch and in between occasional brief showers we dug four large holes and planted the large pohutukawa tree near the rock, then the kauri tree and the two smaller pohutukawa trees. It was such an amazing experience being able to take part in preparing my “final” resting place in this way – and to be doing this with my children. My ashes will be buried beside the rock which just happens to look vaguely like a tombstone.

There is one stipulation – my ashes must not be divided but remain intact! And I have full confidence that my family will be able to come to an agreement on where my next resting place should be.




Pain relief

Over the past few weeks I have had an increasing amount of break through pain. At first I wondered if I was imagining it, but after a couple of weeks I realised I was not. After my body adjusted to the low dose of morphine tablets I began taking in October last year, I had come to take being free from pain and what I call discomfort for granted, but now the pain was resurfacing. Just over a month ago I decided to add another option to dealing with the pain – medicinal cannabis in the form of an oral spray called Sativex. Recent changes to the process of applying to have this as a legal option for cancer patients who are experiencing pain, loss of appetite, nausea and significant weight loss meant that it was now a straight forward process for my GP to fill in the required form and obtain permission from the Ministry of Health to prescribe it for me. Unfortunately, as with other pharmaceutical industry drugs, it is obscenely expensive. However I decided to fork out an initial dollop of money and give it a go. In New Zealand, Novartis, an international drug company based in Switzerland is the drug company making millions out of supplying Sativex.

One immediately noticeable benefit was a big increase in my appetite which has resulted in my putting on nearly 3kgs. And I feel stronger and better for it. It is also very effective in getting rid of the break through pain. The one drawback is that I am currently only able to take it once a day. Twice a day and I get horribly stoned. So it is obviously quite potent. Either that or I am extremely sensitive to the cannabis used in the manufacture of Sativex. It took my body a couple of weeks to adapt to the dramatic side effects of morphine which then disappeared, so maybe it will take me a few weeks to get used to Sativex, and I will then be able to use it twice a day.

I am now also using Sevredol as another option to deal with the break through pain, taking it once or twice a day as well as the slow release 10 mg M-Eslon capsules I take every morning and at night. My oncologist put me on M-Eslon once I had adjusted to taking morphine in the form of the faster acting Sevredol pills.

As the break through pain has now become a daily event I think I will need to increase the dose of morphine when my current prescription of M-Eslon runs out. I need to do carefully as I want to stay as alert and focused as I am now.

It is good to have options, as all drugs have unwelcome side effects, and we cancer patients have to work hard on finding the ones that work best for us. I also appreciate that the current government has seen fit to start removing the barriers to patients having access to medicinal cannabis, and that I have a GP and an oncologist who are both very supportive of my trying Sativex. I am also most fortunate that my oncologist is probably the only oncologist in New Zealand who has led Phase 1 and 2 clinical trials of Sativex, so didn’t freak out when asked to help with applying for me to try this drug.




Another milestone

On Sunday I will celebrate another milestone – 18 months of life since I was diagnosed with pancreatic cancer. After all I have been through over the past 18 months it feels like a significant event as 75 – 80% of us don’t make it past the first year. I have been busy over the past few weeks preparing for the shift of the AWHC office from my home and helping the new co-ordinator of the Auckland Women’s Health Council take over the role. We have attended District Health Board meetings and ethics committee meetings together, and she is about to be welcomed into the Cartwright Collective as we continue to make our concerns about the proposed changes to New Zealand’s cervical screening programme known to health authorities and consider organising another seminar to mark the 30th anniversary of the Cartwright Inquiry.

Last week the AWHC committee treated me to a wonderful lunch at Ostro’s which was much appreciated. Of course, I couldn’t resist the seafood entrée which came with raw oysters, my favourite food. I so enjoyed being there with these amazing women who have been so supportive during the past two to three decades and who have been there for me in so many ways since I learned I had cancer.

So here I am in what feels like my first week of retirement contemplating my future and constantly wondering how long I have got. I managed to refrain from asking Dr S. how long he thought I had left when I saw turned up for my oncology clinic appointment last week, but it is an ever present question that is part of my post chemo life. I asked him what he thought about the continued downward trend of the blood test result for CA19-9, the pancreatic cancer biomarker. He thinks this is probably the ongoing effect of the seven weeks of paclitaxel I had in late November and December last year. I also discussed one of the other effects of that toxic drug – peripheral neuropathy or numbness in my toes and in the soles of my feet. It is extremely disconcerting. As I have had several falls and many near misses I continue to have to be very mindful of my feet when I am walking. As it is now over three months since my last dose of paclitaxel it is unlikely that the damage done to the nerves in my feet will heal before I die.

I still have much to do as part of decluttering my home and preparing for my impending death, but I am actually taking my time over this and plan to make the most of the extra hours I now have, to go to movies and read some of the unread books lying around that I have not had the time to read. Such a luxury!




An unexpected birthday

Early on Friday afternoon 10 March my youngest son drove me down to Raglan to the Farmstay place the family had booked for the weekend. On Saturday I turned 67 and I was keen to treasure every moment of the birthday that this time last year I did not expect to make.

It also proved to be the best place to be as far as the weather was concerned. While parts of Auckland were deluged with rain, on Saturday morning the rain and clouds disappeared in Raglan and by lunch time we were all outside on the deck seated round the huge table enjoying a birthday lunch in the sun and admiring the wonderful view across the estuary to Mt Karioi. A glorious home-baked chocolate birthday cake with both my name and my son-in-law’s on it – my son-in-law’s birthday is the day before mine – completed the simple feast. As the afternoon wore on the clouds finally lifted from the peak of this ancient volcano.

While my eldest son took his son for a surfing lesson in the afternoon, the rest of us lazed in the sun, chatted, read, and/or took a nap. It was a totally unexpected bonus as we had come prepared to spend the forecast wet weekend inside playing board games. (There is no TV at the Farmstay but there is a fantastic sound system for the play lists that all my children appear to have). In the evening we headed off to the Orca restaurant for another wonderful meal. Of course, we all ate too much, including me, which is the added bonus of being two and half months’ post-chemotherapy and having regained both my appetite and a taste for food.

On Sunday the rain returned as we were packing up to leave. I could happily have stayed another day or two in this wonderful place. The view of the mountain from my bedroom window in the barn made my stay very special. The rest of the family stayed in the main house with its two bedrooms, two beautiful bathrooms, and one sunroom, in one of the other two separate dwellings, with my youngest son choosing to stay in one of the old caravans on the property.

It was a great weekend, made all the more special because it felt like such a bonus.




Resigning from the Auckland Women’s Health Council

In April 1995 I began working part-time – 25 hours a week – for the Auckland Women’s Health Council, taking on the position of co-ordinator after Judi Strid left to set up the Women’s Health Information Centre at National Women’s Hospital. Now, after almost 22 years, I have resigned. Friday 3 March was officially my last day, although I will be involved in many of the handover activities over the next few weeks as the new co-ordinator settles into the role.

It is going to take a while to get used to being an officially retired person, someone who is no longer in the paid workforce. I am very aware that although the demands of the job have got beyond what my energy levels will allow and it is definitely time to step down, taking such a huge step feels like a really significant milestone. While I am really looking forward to having more time to myself over the next few months, I am not at all sure what lies beyond the door I have just stepped through. I have mixed feelings about it, and my dreams are currently providing proof of my distress over the loss of this aspect of my identity.

I am also in unknown territory physically. My gastrointestinal tract is in good shape – the best it has been since I first began chemotherapy in December 2015 – and my appetite has slowly improved over the past month or so. The last CT scan suggested that the cancer is stable, and the latest blood test I had revealed that the pancreatic cancer biomarker had halved again for the third time. At the end of January it was down to 654, and the result of the blood test I had 10 days ago showed it was now 354. Given that it was 6,800 when I first received the diagnosis of pancreatic cancer, this is amazing. I am not sure what this means, so I emailed Dr S. and asked him what he thought was behind the continued downward trend. Could it be the ongoing effects of the paclitaxel I had in November and December last year, I asked. That was a possibility, he said, and if it was it was a shame that I had not been able to tolerate the weekly chemotherapy sessions. Maybe it was time for another chat, he suggested.

As my feet are still numb, and the soles of my feet feel like they have a layer of thick sponge which interferes with walking and my sense of balance – a side effect of both cisplatin which was one of the four PEXG drugs, and the more recent paclitaxel sessions I underwent – I am in no mind to consider having any more chemotherapy. But I feel as though I am in some kind of limbo land where the cancer is currently stable, as in not progressing or spreading, and I am feeling reasonably okay.

So it’s time to think about adding a couple of things to my bucket list.




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.

dav

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.

dav

dav

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.




Hospice services

At the beginning of August last year I was visited by two people from the West Auckland Hospice who explained the services that the Hospice provides. Like most people I was completely unaware of the many services the hospice provides for patients and their families throughout the end of life process, including all kinds of social care services. I decided to try the art therapy sessions which is described as “a creative process that helps people managing changes in their lives. It offers time with a qualified Art Therapist and provides a space for reflection and expression to help you understand your feelings and coping skills.” Best of all – no skill in art necessary!

Having become totally alienated from my body during the first five months of chemotherapy I decided to see if these sessions could help me overcome my discomfort and disgust with what my physical body had become and how hostile it felt to me. It was actually quite exhausting living inside a body that I felt completely disconnected from. I was also encouraged to take advantage of the free fortnightly half-hour massages on offer. But I repeatedly turned down the offer as I simply could not imagine anyone wanting to touch me.

After several art therapy sessions in which I drew raw and simple pictures of my body complete with my hostile digestive tract and the cancer (drawn in black crayon) and talking about my feelings, I felt a shift starting to occur. Some weeks later I felt ready to try a half hour back and shoulders massage. The very first massage was just amazing. For the first time since my diagnosis I reconnected to some positive feelings arising from my train wreck of a body. These positive feelings continued to grow and after three sessions I realised that I was now comfortably living in my body again. What a relief that was!

I continue with fortnightly art therapy sessions as I get so much out of being able to express myself on paper. The fact that I can’t draw and I am not creating works of art is not an issue. Nor is it the point of the exercise. These sessions have seen me through some really tough times as I work on expressing my feelings through my crude but immensely satisfying – and revealing – crayon drawings.

The hospice also provides many other free services such as counselling for patients and their families, carers information services, nursing and social work clinics, as well as sessions on grief and loss, and things that matter.

These services help the living make an art of dying. For me they have contributed to my well-being and to my ability to stay positive even as I approach the end of the line.