As a woman, one of the greatest gifts that we have within our power is to conceive and give life, experience that life and offer that life to the world. In so doing, we honour that child, ourselves, our loved ones and our ancestors.
As a woman, one of the greatest gifts that we have within our power is to conceive and give life, experience that life and offer that life to the world. In so doing, we honour that child, ourselves, our loved ones and our ancestors.
Viviena (Viv) Pole is the Manager of Service Development and Integration (SDI) at Alliance Health Plus Trust (AH+), New Zealand’s only Pacific Primary Health Organisation (PHO). Tongan by heritage and birth, she is a passionate advocate for Pacific and High Needs health populations. With a team of equally committed, community focused clinical and non-clinical staff, the SDI team provide on the ground support to GP practices, NGOs and Church communities through a range of Pacific programmes including; Rheumatic Fever Prevention - Pacific Engagement Strategy (8 providers), Parish Nurse programme (14 Pacific churches), Pacific Provider Development (11 providers) and Pacific Integrated Services (4 providers). AH+ is the ideal vehicle for Viv to impact on a number of population groups, being itself a strong and committed supporter of Pacific and High Needs services, working across Central, South and West Auckland, with 34 GP practices and over 105,000 enrolled patients. Viv started her career in the health sector with South Seas Health Care Trust, a general practice within the AH+ Network of Providers, over seven years ago. It was during this time that she pursued and completed her MBA degree from the University of Auckland. She moved to the PHO four years ago, and finds it an inspiration and a blessing to work with staff and providers who have the heart and strength of purpose to improve health gain and achieve health equity for high needs populations and, in particular, for Pacific families. It was the same passion that led her to support the Gynaecology Cancer Foundation community initiative. The real challenge is to understand the community and find the right level of engagement that will encourage people to take ownership of their health and commit to behavioural change that will improve their well being. Prior to health, Viv had 21 years in the banking industry. She is married to Taitusi Pole and they have two children; Hala Jordan (21) & Suzanne ‘Etina (16). They are very family centred faith driven and are active members of the United Church of Tonga in Grey Lynn.
Brogan Ramsay is one fit women! Brogan set herself the courageous goal of running a 100km loop around Christchurch which she completed on Saturday 13th August 2016. She chose to fundraise for NZGCF for a number of reasons, including having personal ties to those who have fought a gynae cancer, but in particular because she feels the work the Foundation does is incredibly important and it has shocked her to find out that we are not government funded. In undertaking this amazing goal she has helped raised over $3000 and most importantly helped NZ women by spreading the word about looking after your gynae health.
I am 48 years old, and am married to my wonderful husband Louie of 12 years, we have a 9 yr old daughter Sienna, who is the joy of our lives. I feel very honoured to be able to share my Ovarian Cancer story as part of Getting Glam for Gynae 2016.
Two points I wish to highlight by telling my story are;
1 - Know your body
2 - Appoint a GP who knows you well, who you trust and keep them for life.
I will go into more detail during my speech this evening but it’s those two points that keep coming back to me when I am quietly thinking about my situation. I couldn’t believe it when I was diagnosed and if I’m very honest it still doesn’t feel real. I was running my own home based beauty therapy business which I loved with a passion. We had just lived through the incredibly unbelievable Christchurch earthquakes and were genuinely counting ourselves lucky, especially since others around us had been hit devastatingly hard.
I was always aware of ovarian cancer, however in the back of my mind I felt more concerned about breast and cervical cancers, never in a million years did I expect to be told I had ovarian cancer (stage 4 to be exact). I have had chemo and surgery and I am now focusing on living, and I’m pleased to say that I am definitely living better and I am truly grateful for every day, such a cliché I know, but it’s true.
Rachel is a 25 year old from Hibiscus Coast, Police Constable based in North Shore also serving the community for the past 4 years. She is the 2014 Molokai Surf Ski World Champion, 2013/14/15 NZ Surf Ski World Champion and last year placed 3rd at the Surf Ski World Champs. Everything was going great until she had a scare after visiting her GP.
After the final World Series Race in Perth Sam and I arrived back in NZ and finally summer had arrived! Back to training in bikinis and weekends spent venturing in the sun. With no ocean racing until early February it gave me the chance to have a bit of a break from the long paddles and ocean ski. It has allowed me to get back into the clubby season for the summer. Most nights are spent down at Mairangi Bay Surf club training on the spec ski, board and ironman sessions. Included in training is getting back into the gym about three times a week, running and the odd recovery swim. So far I have had two life saving competitions where I have raced pretty well coming away with some firsts and seconds. Im happy with where I am at but always loads to improve on going into the main competitions like Eastern Regional Champs in late January and NZ National Champs in March. I am really looking forward to racing at these bigger competitions and seeing what I can do. The surf season really allows me to refresh my mind and really think about my 2016 goals in Ocean paddling and which events I want to target. One of those goals is heading back to Hawaii for Molokai in May. This will be the main event for 2016 I am targeting which means 30-50km paddles for a 12 week block leading up to the race. Molokai is definitely a mental race not just physical I think laying off the pressure over the summer for a couple of months with ocean paddling will be good for my preparation going into Molokai more focused and determined than ever.
Over the past couple of months I have had something else very personal on my mind, In October 2015 I went of a cervical smear test which came back as abnormal. In December I had to get a biopsy done to see to what level the cells were. The Doctor advised me my results came back as what they call CINN 2 & 3, these are called pre cancerous cells where if not taken out can turn cancerous over time. I then had to have whats called a Lletz procedure where they remove the cells under a local or general anaesthetic. This means no swimming or strenuous activity for 3-4 weeks. This is a huge set back for me and to be honest I don’t know how I’m going to do it with no paddling, running or even going in the water for that long! But if I look at it another way I think a few weeks break may actually do me some good before the Molokai training kicks in! One thing I do want to say to all you females out there please go and get your Cervical checks done because it could save your life before it’s too late!
On a more positive note I am extremely happy and honoured to announce that i’ve partnered up with AUT Millennium based on the North Shore. I’m very excited to get into the gym and utilise their facilities to improve my training! AUT Millennium has top of the line facilities in the gym, outdoor tracks and 2 x 50m swimming pools. Also at AUT Millennium is Healthzone which is a great Family Practice to keep your health in check or even have some of those sports injuries looked at! Check out AUT Millennium’s website here: http://www.autmillennium.org.nz
Jo-Lea was diagnosed with stage 3 ovarian cancer at just 19. This is no easy task for any young women, but Jo-Lea is a force to be reckoned with and continues on with life like a true fighter.
In February 2016 Jo-Lea bravely shared her story on national tv, and just how far she has come. She featured on TVNZ Breakfast show with NZGCF Ambassador Sharon Hunter to help shine the spot light on Ovarian Cancer Awareness Month.
(Written by NZGCF - June 2016)
When I mentioned it to the doctor, she said” It could be nothing or it could be something- we’ll check it out”. So began a roller coaster ride- first a pelvic ultrasound, then a hysteroscopy- endometrial exploration, then a scan. After the biopsy, when I was slowly coming out of the fog of the anaesthetic, the surgeon very kindly came up to me and told me that “she had seen worse! “ It’s astounding how these sort of expressions stick in your mind! The CT scan that followed showed that I did indeed have endometrial carcinoma. It wasn’t until the night before my operation for the full hysterectomy that the surgeon (another one thankfully) told me that I had a grade 3 C carcinoma. In other words, a very fast growing bloody great malignant lump on my uterus. In his subsequent letter to the doctor and other professionals involved, he said that Ali seemed surprised when I told her this!!! Having never been to hospital apart from having babies, my anxiety levels sky rocketed. Thankfully the surgeon is a wonderful man with a good combination of skills and empathy. He was very good to me the whole way through, and personally rang my husband straight after the operation. He ended up removing lymph nodes where the cancer had spread. It was also all through the wash and at the top of my cervix. (my cervical smear test results had come in the mail just a few weeks before- all healthy!) I was asked if I would like to participate in a cancer treatment trial- PORTEC 3. It seemed that I would be well looked after by the absolute crème de la crème of health professionals if I took part. It would also mean flying to Christchurch for all checks which didn’t seem to be too much of a problem. If I got into the control group, I would have 5 weeks pelvic radiation followed by bracchy therapy (Internal radiation). Anyway, with the PORTEC trial, the experimental group involved having chemo as well as all this. In hindsight, thankfully, the computer in Holland that made the selection put me into the control group. Having been a person who has lived by natural remedies for most of my life, I was all set with lists of supplements to take when I was having the treatment. My doctor prescribes alternative therapies as well as traditional medical practice. One of the important lessons I have learned is that there are many “experts” on cancer treatment- some of them contradictory. I have learned to use my own research, professionals I trust, and gut feeling to guide me to what I need to become well and to keep surviving. It was a difficult time, despite all the good moments- those times when we made the most of everything- my wonderful husband and daughter looking after us. I am so thankful to the wonderful people who provided me with stacks of books to read over that period. There would always be a book in my bag with me. Sometimes the radiation machine would have a hissy fit, or they would be behind in their appointments, so my books were a saviour. As too, were the ukuleles that my husband and I bought down there. Roger found good music at the local library, and in my good energy times we would sing and play. We still play together. They are such wonderful forgiving instruments! Most stories I have heard or read about people’s experience with cancer include the ones of finding out who your true friends are. Indeed, that has been such an interesting experience, but I guess that any productive and healthy garden needs a good weeding every now and then. I feel very much closer to my real friends now, who still want to know how I’m getting on. Over a period of 6 months I had experienced a diagnosis of cancer, had a radical hysterectomy, 5 weeks of pelvic radiation, 20 hours of internal radiation, been alongside my sister in her journey through illness and death, and had been celebrant for 5 funerals of people close to me. Enough is enough! At that point I became somewhat obsessed with buying native trees to plant on our land. I had no energy to plant them, but they symbolized new life for me. It’s amazing how many people tell you that you must keep positive in this cancer business. I’m not sure if positive means positively hurling some objectionable books about cancer across the room- or being positively furious with some people in my life and indeed, letting them know, or being positively terrified that I was going to be the star role at the next funeral . I made a conscious decision that being authentic was more important to me than trying to be positive- that felt real. I have had my first annual checkup. I didn’t really believe them when they said I was doing fine, and that I was looking well. I struggle with the fear of death still, but I am adjusting my diet and am now learning- very slowly, how to meditate, with a great group of people – a group set up by the cancer society with a fantastic teacher. I have decided not to work over winter, and I spend my time doing things for myself, making yummy food, gardening, doing music lessons, practicing meditation, walking, spending time with family and my dear friends. I shout myself massages sometimes, read a lot, and on better days, (which are coming more and more frequently) truly appreciate the richness in my life. I have even managed to plant all my native trees with the help of my wonderful grandchildren and my husband. I guess that can be seen as both positive and authentic!
Who would have thought that so much could happen in 21 months!
Finally after three years of trying to have a baby, one round of IVF with a positive test then a miscarriage, my husband and I did it. We were going to have a baby all on our own. This was to be the start of something new for us. My pregnancy was just wonderful with no hiccups along the way. Then on the 29th April 2010 our beautiful son Jonty was born. Our dreams had finally come true. Little did we know that Jonty was to be a life saver in so many ways?
Due to Jonty being stuck I had to have an emergency c-section. I was told by the doctor that I had a 6cm cyst on my right ovary. Since I have had cysts before and endometriosis I thought nothing of it and was told to have a scan in 6 weeks’ time. The next six weeks went fast as all my energy was on Jonty so didn’t even give the scan a second thought until I was trying to change my health insurance and needed my results.
This is when the roller coaster began. I was told that the cyst had grown to 12cm in 6 weeks and that it would need to be removed. So off to my gynaecologist I went and was informed that I had grown something different and that was the reason why I still looked 6 months pregnant!
When Jonty was 14 weeks old I went to have my cyst removed and what was to be a simple operation ended up with my right ovary and fallopian tube removed as well as a 25cm cyst full of 1.5 litres of fluid. At this stage they were thinking that it was just a benign tumour as nothing had shown in my blood. However a day after I got home we got the call to come in, it was cancer!
The tests began to determine what type of cancer it was. This was to see if what they had removed was a secondary form or the primary source of cancer. Luck was on my side and it was primary cancer they had removed. They couldn’t be certain that it hadn’t spread as the tumour had ruptured as they removed it. I was sent to meet a wonderful gynaecological oncologist who told me it was ovarian cancer and my treatment would involve a radical hysterectomy, removal of my appendix, lymph nodes and chemo.
In an instant my life had changed! At 32 I had another major operation that would mean I couldn’t look after my baby without help, I could no longer have children, five and half months of chemo resulting in the loss of all my hair, eye lashes, major weight gain and no self-esteem! During this time I had major ups and downs but with the support of my husband, Jonty, family, friends and people I met along the way I made it! I had my last chemo on the 21st April 2011 and Jonty had his 1st birthday on the 29th April 2011.
It is now 21 months on and I am cancer free. I have a wonderful family and a wee man that makes me smile every day. If it wasn’t for Jonty they would not have found it so early and I may not have been here today. Cancer has changed my life and in a funny way it has made me a stronger and a better person. Now I look forward to giving back and helping others. My first attempt is to get fit and run the Triple Peaks in March with friends to raise money and awareness for ovarian cancer, so keep your chin up as you will have bad days but you will get there in the end. I DID!!!
In 1990 at the age of 25 I read an article in a magazine about Endometriosis and self-diagnosed myself. My gynaecologist initially disregarded the idea until an ultrasound confirmed that I did indeed have Endometriosis. For the next five years I endured countless laparoscopies and a laparotomy to remove the offending cysts and adhesions, but sadly they kept coming back.
In 1995 I headed to the UK to live and my Endometriosis went with me. I continued to be plagued with back pain, very heavy periods, passing of large blood clots, and irregular breakthrough bleeding. I gave up going to Dr’s for treatment as nothing seemed to work and I’d had it instilled in me from the moment I started menstruating that heavy periods were just part of a ‘woman’s lot’.
Then one day I was admitted to the Royal London Hospital suffering from anaemia and requiring four units of blood. On further investigation they determined that I had a large fibroid hanging from the top of my uterus and protruding through my cervix. This unwelcome alien was the cause of my by then constant bleeding, which I had attributed to my Endometriosis. After treatment to reduce the size of the fibroid, it was removed some months later and sent to the lab for testing. I returned for my post op check-up and the gynaecologist informed me that due to an abnormal pathology report I would need a hysteroscopy.
At the next visit post hysteroscopy my gynaecologist told me I had Endometrial Stromal Sarcoma (ESS) and would need an immediate hysterectomy. I was 33 and my partner Andy (now husband) and I were trying for a family at the time. Sometimes our minds work in strange ways as all I could think about was that we wouldn’t be able to have our own children. I seemed to miss the other point entirely – I had cancer. I debated with the gynaecologist as to whether the hysterectomy could be delayed until I’d had a baby. Neither my gynaecologist nor the oncologist that I was later referred to would be deterred from their decision, so in September ’98 I had a TAH (Total Abdominal Hysterectomy). My ovaries were not removed as the cancer was confined to my uterus. I recovered quickly, continued to be monitored by the oncology team and life went back to normal. I had no radiation treatment, no hormone treatment and no chemotherapy, just regular ultrasound checks with the hospital. I was told nothing about the type of cancer that I had, and I guess due to the limited information that they had about ESS at the time, I wasn’t told that it could re-occur. So, I got on with life thinking that the cancer was a freak occurrence and that Andy and I were going to grow old and grey together, albeit without the children we had both dreamed of.
Well, it’s now 2012, 14 years on in my journey. I had seven years of being cancer free, and then in 2003 an ultrasound revealed two growths in my lower pelvis. As they were not changing shape or size and didn’t act like cancer it was determined by my gynaecologist and the radiologist that it was Endometriosis. I wasn’t being seen by an oncologist, although I now know I should have been. I refused to have the growths removed as they always came back and a biopsy was never suggested – oh how I wish I had pushed for one, but at that time I was still incredibly ‘cancer naïve’ even though I had had cancer. It wasn’t until mid-2005 that I started to feel tired, constantly bloated and generally unwell and it was then that a scan revealed that the growths might not be Endometriosis after all. After further tests I was finally diagnosed with a recurrence of ESS. This time though the tumours were unresectable, therefore my cancer was incurable.
It was a huge shock for Andy and I but we were optimistic that hormone treatment would keep the tumours under control, and it did for a while. After 18 months and a very stressful time at work my tumours became very aggressive and I was quickly signed up for my first chemo. That was when I realised I carried a ticking time bomb everywhere I went, and so the fight really started.
Over the last seven years I have completed five chemotherapy regimens to fight the tumours and three different hormone treatments to block my body’s production of estrogen. I’ve lost my hair four times and once lost my eyebrows and eyelashes as well. Then there are all the very private issues that I have had to deal with. Not only can I not have children, my first chemotherapy put me into chemically induced menopause at the age of 42. Since then a total lack of estrogen has meant that I suffer from very dry skin, a total lack of libido and atrophy of the genital area. The treatments for the last two issues involve estrogen which of course I have to avoid. It doesn’t stop there; because I have large tumours at the bottom of my pelvis I also suffer from very painful intercourse and painful orgasms. This affects me far greater than having incurable cancer, but having an incredibly loving and understanding husband gets me through.
The upside to all of this (there’s always an upside to everything in life) is that I am no longer ‘cancer naïve’. I learnt quickly all that I could about my cancer and the treatment options and have taken a very active part in my treatment and management of my symptoms, which I am sure has helped me deal with my overall prognosis. Although I am no longer on treatment, I am still doing well. My main problem is that I suffer from Ascites (fluid build-up in the abdomen – I constantly look pregnant) and occasionally Pleural Effusion (fluid build-up in the lining of the lung). I am having abdominal drains every 7 days and a lung drain when needed. Andy and I have had a number of instances where we thought ‘it was the beginning of the end’ for me, but now we have no idea how much time is left ticking away on the time bomb, so we just get on with enjoying life together and worrying about the things we can change, and ignoring those we can’t.
What my journey has taught me the most is that any changes to your menstrual cycle, unexplained bloating and unexplained abdominal or pelvic pain, should be investigated immediately by your Doctor, and the investigation should be continued until a plausible cause is found. Don’t just assume like I did that it’s just a ‘woman’s lot’.
Alison registered as a RN in 1981, completed Midwifery in 1983. Came to NZ as a Midwife for a years working holiday in 1986. Alison started work in a Gynae Clinic in 2003 as a RN and became a Clinical Nurse Specialist in 2010.
Alison was unable to join us at Getting Glam for Gynae 2016 Charity Fundraiser:- below is her acceptance speech.
Kia Ora from Northland.
Firstly I would like to thank Dr Ai Ling Tan for nominating me for this award. I must apologise for not being able to attend tonight. In accepting it, I would like to acknowledge the others in our team, clinicians, booking clerks and nurses that work extremely hard, enabling women to attend appointments in Whangarei and Auckland. Working alongside these women, helping then to navigate the complex raft of tests, investigations and appointments is challenging but also rewarding.On a more serious note, as you already know the cancer statistics for Northlanders are horrible, particularly for Maori women. We see Gynae cancers diagnosed too late with subsequent poor results. Raising the profile of Gynae cancers is important. They are still very much a 'silent' cancer because women are too shy and embarrassed to seek help early. I was pleased to see that Erica and the NZ Gynaecological Cancer Foundation came to Whangarei this month, spreading the word about what signs and symptoms women need to look out for.
Finally, I hope you have a memorable and glamorous gala evening.
Thank you, Alison Carlin
Dedicated, hard working, supportive, always at the end of the phone and nothing is too much trouble. Jan is the backbone of the Foundation and has worked tirelessly within the organisation since 2009 and is an integral part of the NZGCF team. In addition to her significant volunteer work for the Foundation, Jan and her husband, Nick, run their own successful Auckland plumbing business. Jan is a very capable accounts person, working in the family owned business for more than 25 years and has a vested interest in helping the New Zealand Gynaecological Cancer Foundation because of her experience with a woman's cancer and having lost family members and close friends to these women's cancers.