Personal Stories

We gratefully acknowledge these wonderful women for sharing their journeys with us.

Please note that the information provided below are women’s own stories and the treatment options are not necessarily the recommendations and views of the New Zealand Gynaecological Cancer Foundation.

We recommend and support the latest and most up to date methods endorsed by Gynaecological Oncologists. We recommend that you follow your Gynaecological Oncologists or doctors advice.

Alison Carline

2016 NZGCF Award Recipient

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

Jan Barker

2016 NZGCF Award Recipient

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, running the family owned business 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.

Viviena Pole

2016 NZGCF Award Recipient

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

2016 NZGCF Award Recipient

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.  

Maria Stapleton

Maria trained and worked as a registered nurse (RN) in Palmerston North. In 1999, when her sons had grown, she embarked on further study; qualifying with a  Bachelor of Nursing; Graduate Certificate in Stomal Therapy Nursing; Post Graduate Diploma in Professional Nursing Practice with distinction and in 2010 she completed Master of Nursing degree  with distinction. Maria is committed to improving patient care and experience, in 2010 she was recognised as the Health Informatics New Zealand (HINZ) Inaugural Winner ‘Clinicians Challenge’ for the development of system tracking  a cancer journey;  in 2011 Maria was part of the Cancer Society team awarded the Write Mark ‘Plain English Award’ with a book “Bowel Cancer and Bowel Function.  Practical advice – Following treatment for Bowel Cancer” and in 2013 Maria co-authored an article “Cancer Care coordinators: what are they and what will they cost?” published in the New Zealand Medical Journal.  Maria is the national and regional treasurer of Psychosocial Oncology New Zealand (PONZ) at both a national and regional level. PONZ aims to support & educate health professionals involved with delivering psycho social care to those with cancer. In 2013 Maria and her husband Nick Dangerfield moved to Tauranga where she took up a newly established Ministry of Health role, as a Cancer Nurse Coordinator. The role of Cancer Nurse Coordinator has allowed her to peruse her passion of ensuring a holistic approach to nursing care; focusing on equitable, timely access to care for Gynaecological Cancer patients. In this  role Maria acts as single point of contact for women and their families across the Bay of Plenty region, ensuring that each woman has an understanding of the complex and sometimes overwhelming array of appointments and diagnostic tests leading to diagnosis and treatment of Gynaecological cancers  and also ensuring that psycho social supports are available to support them . This Cancer Nurse Coordinator role demands a high level of knowledge and understanding of the Gynaecological pathway and effective relationships with health professionals across several District Health Boards.  Another important aspect of her work is to support the development and refinement of hospital systems to ensure women with Gynaecological cancer receive the best standard of care and ultimately experience the best possible outcomes. On a personal level Maria has four sons and two stepsons. In her spare time she likes, connecting with family and friends, traveling, gardening, fishing, walking and enjoying the lifestyle the Bay of Plenty offers.

Christine Moverley

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 Clarke

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

(March 2016)

Jo-Lea Lawley

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)

Ali Du Fresne

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! (October 2010)

Amy Ryan

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!!!

(March 2012)

Leanne Coleman

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’.

(July 2012)

Lynne Stronach

When I was in my early twenties, I had Pap smears every six months. The Doctors did not tell me why until one day my new doctor called me in as I had an abnormal smear. He told me that my cells were on the road to becoming cancerous unless they went back to normal and that he would keep a good watch on me. "Don't go home thinking you are going to have cancer" he said. "Cells often go back to normal and besides, if it's not watched I could have cancer in my forties”.
Many years passed and I gave birth to a boy in 2000. During 2006 I felt lethargic, tired all the time and sex was becoming quite painful. Many times there was bleeding afterwards. This was definitely not menstrual. I will never forget New Year's Eve 2006, I bled every day from then on. I had just turned 35 years old. I had had a Pap smear done in November of 2006 - everything was fine. I was told to go to the hospital by my partner. There, hospital staff performed all kinds of tests and nothing showed up. Just a guess of me possibly having endometriosis.
After speaking with my GP, she sent me to have a vaginal ultrasound. Nothing at all showed and I was told to 'come back in six months for another ultrasound.' At this point I wasn't about to wait so I had my GP send me to see an OBGYN at the beginning of March 2007. There I had a colposcopy done and a biopsy. I had to wait about a week before I found out the results, but I had a feeling the results wouldn’t bring good news.
When I went in to hear the results I was given the worst news of my life. I had cervical cancer.
I was sent to a hospital in the city to see a team of oncologists. Another test was performed. I was given two options: to either have a hysterectomy or to have a radical trechalectomy. I chose to have my cervix removed as I wanted to avoid menopause at that age and still possibly have children - with stitches holding a baby there if I were ever to get pregnant. I had my surgery on Easter Monday April 10th, 2007. The surgery was a horrible process. My sentinel lymph nodes were removed as well. This was day surgery, and I woke with severe pain from the gas in my shoulders and bad anxiety. I didn't get discharged from the hospital till the evening so I was actually there for 12 hours. I was angry for not being able to stay. I had to keep a catheter in for two weeks with a nurse checking on me at home. I was grateful for having my mother look after me and my seven year old son. It did affect my family as they were emotional now and again. The day after the operation I screamed holly hell as I couldn't get out of bed. It felt like someone was stabbing me in the ribs and I had numbness in my right upper thigh. An ambulance was called and I ended up in our local hospital. Nothing much could be done accept X-ray and IV. Through the healing process I walked with a cane due to the nerve damage in my right thigh that was caused when my sentinel lymph nodes were removed. They called it Meralgia paraesthetica. It has reduced now but I have this for the rest of my life.
I thought I was now on the road to recovery but boy was I wrong. The doctors had found microscopic tumours in two of my lymph nodes. I was now given an intensive plan for chemotherapy and radiation. I had the best volunteers from the Canadian Cancer Society to drive me to the hospital Monday thru Friday. Such wonderful people to take time out of their day to take me, wait on me and take me back home. My first week into therapy was the most horrible experience - feeling lifeless, vomiting, diarrhoea, but worst of all I became allergic to Semetil. After radiation I could barely talk and was in tears. My driver said to go back in to talk to someone. What I had, which was not common, was lock jaw from the anti-nausea medication. They sent me straight to emergency. I felt distorted and I almost bit my tongue off. After countless drugs I was discharged. My oncologist had never seen this happen to anyone in all of her years of practice.
It took a long time for me to recover physically and mentally. I felt destroyed, and old. Sex was a big issue that became a real problem. I felt ruined and thought I would never be the same. I had to see a gynaecologist for advice and help regarding sexual issues. I was angry as I felt like I couldn't please my partner, myself and thought I would not be able to enjoy sex again. With lots of anger and depression I was prescribed anti-depressants.
One thing I can say that I am not proud of is not playing it safe with sex when I was a teenager. We weren't educated about the link between certain HPV viruses and cervical cancer. This link was not widely known back in the eighties. Teens today need to be educated and made aware of HPV virus and its potential to cause cervical cancer. People also need to hear the stories of survivors and how it has affected them. You don't know how much it will impact your life until you have it. Let’s teach our teens to play it smart and think safe sex.

Whilst I can't have any more children I feel blessed to have my wonderful son Liam who is now 14. This experience has changed my life in many ways and has made me a strong and determined individual. I am now 43 years of age and cancer free. I can enjoy sex again. I can be around pregnant women where previously I couldn’t as I had dreamed of having a large family. I love my life - working on my BA in primary teaching and writing children's picture books. I love children and if I can't have anymore, I want to educate them. We feel very fortunate to be living now in NZ and plan to be here indefinitely.

(July 2015)

Shanel Cornille

I am 28 years old and was diagnosed with Cervical Cancer on 23rd December 2009 - what a great Christmas present - not! I had been having abnormal smears for a few years but thought it was all under control as I was keeping up to date with 6 monthly or yearly smears and had had diathermy treatment 18 months before to remove some precancerous cells. I had had no symptoms leading up to my diagnosis and had been super fit, having just represented New Zealand at the world age groups championships for long distance triathlon in Perth two months before. So when the doctor mentioned the 'C' word I thought - 'this cant be right - I'm so 'fit and healthy'. Well apparently that didn't matter.

In the next few months my world would be turned up side down. To start with there were MRI's and CT scans, specialist appointments and meetings with fertility specialists. That was the hardest part of my whole cancer experience. Being 28 years old and single and to be told I may never be able to have children was just heart breaking. Luckily I saw the fertility specialists at just the right time in my cycle and was able to start a round of fertility treatment the next day. And I am glad to say I was a good 'chook' and now have 14 eggs stored safely away. With medical technology these days it is amazing what they can do and I hope that one day I will have children of my own. Since then I have undergone six weeks of chemo and radiation therapy.

I managed to continue working two afternoons a week as a physiotherapist right throughout my treatment and just having that routine and sense of doing something normal was a huge help to me. I got through the treatment surprisingly well which I partly put down to a positive attitude and partly thanks to the unfaltering support I had from my friends, Mum, Dad and four brothers and sisters. They couldn't have been more amazing.

Seven months down the track I am back at work full time and back into training and even though my specialist said I won't be competitive again for at least a couple years I am out to prove him wrong. I have entered the Tauranga half iron man in January 2011 and my big goal is to qualify again for world champs. AND...in the last month I have just been selected by Sam Warriner (former World #1 and NZ triathlete) to be part of her 'sweat7' team - a team of seven girls who she will coach toward triathlon nationals in Wellington in March next year. I have worked under Sam before but we had not been in touch for over a year. When I saw her advertising for applications to be part of her coaching team I thought why not. Sam had not known anything about my cancer and what I had been through so as soon as she read my story she picked me as the first girl from over 200 applications. I was over the moon - Sam is an inspirational athlete and I know that with her guidance I will get my fitness back and hopefully be an inspiration to others to show that what ever you come up against you can still achieve your goals. So I look forward to some hard training over the next few months.

I would also like to mention Fi Patterson - I was introduced to Fi through a rowing friend and she was a huge support to me throughout my treatment. We met for coffee in Cambridge a few times and she said to contact her whenever I wanted to ask any questions or just needed someone to talk to. It was invaluable to not only have someone like her- who had been through what I was going through -to talk to but also to look up to her after seeing what she has achieved with her rowing since cancer. She gave me hope that I would get back to peak performance just like she did.

In August I had a clear MRI! So here's hoping I have beaten this thing and I can put it all behind me knowing I have come out the other side stronger and even more determined. I'd like to thank the Cancer Society for all their support and to the awesome Oncology team at Waikato Hospital who made my cancer journey that much easier with their smiley faces.

(November 2010)

Adrienne Morris

I am a New Zealander by birth, but I have lived in UK for nearly 19 years, with my British husband, and loved it. (He died from MRSA in 2004, after a heart operation.) I was not intending to come back to NZ, as England had become my home, but I had recurrent ovarian cancer in March 2006.

I had ovarian cancer originally in 1996, in England, very suddenly – there were basically no symptoms until last minute. They thought it might only be a cyst, and decided to operate immediately – that same day! By that evening I had had a total hysterectomy, and a colostomy, and within 7 days they knew that it was full blown ovarian cancer. I started on chemotherapy, which should have taken 5 months, but it knocked me very badly, and overall it took nearly 7 months. There weren’t all the steroids that we have today, so nausea and sickness were quite a problem.

But I got over it, and was on 3-monthly check-ups for 3 years, then 6-monthly, then yearly. I was lucky that a year after the original surgery they were able to reverse the colostomy, but I did have another operation for a hernia 2 years later, which had developed from the colostomy site. But after that, everything was clear and in fact I have been extremely healthy for nearly 10 years. Then it suddenly returned in March 2006, literally within 6 weeks of being given the “all-clear”. I had quite a large tumour which was attached to the psoas muscle, a large muscle which controls leg movement, and sitting up and down etc, and the hospital would not operate to remove it – they said it was too big and too dangerous where it was (it wasn't in a "normal gynae area" and it was too "involved" with the muscle). So I had to have chemo for about 4 months and if that shrank the tumour to at least 50%, they would consider surgery.

It didn't - even after two different lots of chemo, which made me extremely ill. In September 2006 I was told that they could only keep giving me chemo - they don't seem to think about the dreadful effects that has, just "give them more chemo" - and on pressing the consultant was told that I had 18 months, maybe only 12, to live. When asked if they could try to remove the tumour, as a last resort, if nothing else, he said he did not think surgery would ever be an option. I asked what would happen, and he said the tumour would eventually spread, attach itself to other organs, particularly the bowel, and it would become strangulated, and eating and drinking would become a problem. It would probably be a “lingering thing”, not quick. I had no choice but to return to NZ - but I had my own business which I had to close, "sell" everything I owned (more like "gave away" really) because I would only have a "spare bedroom" to live in for what time was left to me. I came with my dog, 3 suitcases, and 8 boxes of possessions - mainly my computer, some clothes and a few very precious things.

It was all extremely traumatic. I did not want to leave all my friends. Many of them offered to help look after me when I became very ill, but it wasn’t fair to expect that. I still had to see an oncologist in Jan 07, after arriving here in Dec 06, and she was very efficient and said they would have to put my case to the surgeons. I told her it was very unlikely that they would touch it, as Leeds, the largest teaching hospital in Europe, wouldn't. The surgeon's FIRST response was "We have to get this thing out! Now!" I was then in an awful position because I didn't know if the UK was right, and I should just leave it, or whether the NZ surgeon knew what he was about and could "save my life". I emailed to Leeds to explain what had happened; they came back with all sorts of excuses, and said things like "your situation has changed and maybe it was now suitable for surgery" – this was nonsense - it had only changed in that the tumour was now 25% bigger and even more dangerous!

The NZ oncologist said the surgeon was excellent and would not say he could do it if he couldn't, and to go with it - "he can save your life". And he did!! He operated last April 16th (2007); it all went perfectly well, no problems, no side-effects, and he said it wasn't even technically difficult. He could not understand why Leeds had not done it a year before. By the time he operated, it was already starting to attach itself to other organs, and I was more than 6 months along the road from when I was given 12-18 months, so Leeds was right in that prediction. I had to have another full course of chemo again after surgery, which affected me quite badly, but I am now quite fit and well, my "tumour marker" is now "five" - basically the cancer is non-existent - I am classed as "cancer-free".

My latest scan "looks incredibly normal" and there is no sign of any abnormality near the psoas muscle and no re-growth of the tumour. It is so clear, that they are of the opinion that it may not come back again for possibly a long time. I know it will, sometime, but for the moment, it seems to have gone.

(July 2008)

Rachel Deane

Children? There’s plenty of time…
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.

I have a brief story to share with respect to fertility and ovarian cancer. I was 32 years old, a medical professional and in a long-term relationship with someone who wanted to have children. Although I had not completely resolved whether or not to make children a part of my life, I was very open to being a parent. I wanted to be in a solid emotional place either on my own or within a relationship – that would be the right time to decide. Because the relationship was not solid, this decision was delayed and having always been in perfect health, active and innately energetic, I assumed that I had plenty of time.

Seven and a half month fetus
During a training ride I injured my back and sought a GP’s advice for physiotherapy. Firstly I had to find a GP. I wasn’t registered with anyone because I was always in good health. And as I had noticed some discomfort in my abdomen over the past few months (probably just a result of the stress and perhaps a bit of irritable bowel syndrome, I thought), I asked him to check my stomach while I was there – two birds with one stone! He examined me briefly and gingerly asked me to make my way directly to radiology, that he would call ahead to let them know I was coming and told me to not stop in between. A young woman was at the door holding it open for me – “huh, what lovely service!” I thought! My ovarian tumor measured 28 cm x 12 cm and was larger than the radiologists screen, a fact that she bluntly informed me of. “This thing is the size of a seven and a half month fetus!” she exclaimed in an almost excitable tone. So life for me, my loved ones and any unborn children changed forever in that moment.

There was a substantial waiting list at the private hospital I would have attended but the public hospital could take me sooner, and I would have the same surgeon, so I was placed as high priority. However, a couple of days later the tumor got too large for my pelvic cavity to contain and it ‘popped out’. I started experiencing excruciating pain and it was thought that I was haemorrhaging internally so I was bumped up the hospital list and underwent surgery the next day. The subsequent histology report found the tumor to be malignant and so I was advised to have a full pelvic clearance – including the removal of the other ovary, my uterus and any chance whatsoever of having children of my own.

Four Options? Single Gay Woman? Doors close…
I needed expert advice. I sought the best fertility experts in the country and was given four options. The first, “do nothing, have the surgery and move on”. The second, “ovarian tissue slices cryogenically preserved” but to date not one child has been conceived in this way and the ovarian tissue they collect may be malignant. Not a winning option. Option three, “go through IVF treatment and cryogenically preserve a fertilized egg”, or option four “go through IVF and preserve an embryo”. This would mean delaying surgery to remove the cancer I now knew I had, go through the expense and uncertain results of IVF, and if there was a donor on record who was prepared to donate to a single gay woman (yes my relationship with a woman had newly dissolved and we were undergoing property separation proceedings). Doors closed. Then I also had the added disadvantage of having to undergo an Ethics Board approval process whereby a panel of ‘experts’ would asses my suitability to be allowed to seek surrogacy. In New Zealand’s history, never has a gay woman ever been granted surrogacy due to perceived ‘unsuitability’ to raise a child. Another doors closed. I didn’t have that fight in me at the time and I reluctantly ‘chose’ option one.

Choice is King
I grew up believing in and living “Choice is King”. Having the freedom to choose who I want to be, where I want to be, whom I want to be with etc is my personal mantra. Therefore, at first, I personally found choosing option one not a choice at all, but a forced choice. I spent a lot of time being bitter about my freedom of choice being taken away. For an as-yet-unchosen child of mine, the grief was overwhelming. I felt a total lack of freedom to choose anything because of this diagnosis and it was being spearheaded by my enforced infertility. I am now 3 years clear of cancer (with just a couple of temporarily elevated CA125 and CA19’s) and I still feel this grief profoundly at times. It is echoed in details like our family’s antique cameo bracelet, which has engraved on the back of each cameo, the initials of the beautiful and powerful women of my lineage – there are two cameos left, one for me and one for my daughter. For a young woman aware of her Maori heritage with its traditional and spiritual emphasis on community and family, I felt an extra burden. Interestingly, the chief of our tribe (Kahungunu, a tall, handsome and hard working man who had nine wives) was a lover, not a fighter, and known as a prolific chief with many, many children.

Discussions with my counselor, Lucy (at the Cancer Society, Auckland), have uncovered the fact that I would have indeed chosen to have children, and further that I still would like children. I may just need to be more creative. However, I am happy to say that I no longer struggle with the sense of disappointing an entire ancestral heritage, although it did take some time!

And I realise now that I actually did have a choice. Also, that I did make a choice. I made a choice for life – my own. And I’m glad I did because now I get to choose lots of things in life. One of my recent choices that I am proud of is to volunteer my service to the management of the Silver Ribbon Foundation for Gynae Cancers. In this capacity I am blessed to have met some of the most wonderfully generous, strong and talented women of any organisation and help deliver a service that enables other women to transform a cancer diagnosis from something that seems impossible to cope with into being manageable. For that, and many other beautiful things, I am truly grateful!

(May 2008) 

Shaline Das-Fitzgibbon

pureCELEBRATION

On the weekend of my 5th Wedding Anniversary I received my cancer diagnosis - stage 4 Ovarian Cancer (clear cell carcinoma with a ca 125 level of 3900) and a few years left to live. The moment the oncologist said these words she took my hope away. The pain I felt when I heard these words was indescribable and the days and weeks that followed were filled with despair. I have always been an optimist but I gave up and thought that I had to face reality. No cancer diagnosis can ever come at a good time, mine came at a very bad one. My husband is a dentist and was training to become a specialist and this could only be done in Dunedin so we had not spent much time together as a family. For the past 2 years he had been in Dunedin during the week and would fly home to Auckland for the weekends. I had spent my time working full time as a Global Marketing Manager and a single Mum during the week to our 3 year old son. I thought that my continual exhaustion was due to this situation. We felt that our lives were on hold until the 3 year course had finished, however when we received the cancer diagnosis we realized what putting your life on hold really means. Daniel came home one weekend from Dunedin and never went back.

Your life as you know it stops and a new one begins based on medical appointments, CT scans, blood tests, operations, chemo cycles, good & bad days physically, high and low days emotionally, losing your hair, etc and the ever present fear. I thought about all of my life plans and resigned to the fact that those plans would never become reality. The very worst part of my journey was the guilt that my son would have no mother, my husband would lose his wife, my sister would be without me and my parents would lose a child etc.

I can not remember exactly when my mind set changed, however I know that because the people around me would not let me give up and showed me they believed I could win against the odds - I began to believe it myself and today I feel positive and wonderful. Every card, gift, phone call, text message, email, visit, offer to cook or baby sit etc gave me encouragement, strength and meaning to help me cope with this disease and claim the life back that I thought I had lost. The written and spoken words are a treasured gift that I revisit often to keep getting me through this journey. As expected my husband was indescribably amazing and he managed to stay strong enough for the both of us. He kept pushing me to fight and would not give up, his insistence paid off and I too began to believe I could be an exception. This with the support of all the special people around me gave me the strength that I could not initially find on my own to fight with every ounce of energy that I could muster. The more energy I use to be positive, the more energy I seem to have to remain positive.

Next month it will be a year since my diagnosis and against the odds I ended my chemo in complete remission. I do not know how I got there but I believe that it’s a combination of the amazing surgeons, medical treatment, the way I chose to fight and the unknown forces. A cancer diagnosis is liked being drafted to a war that you didn’t enlist for. -you are not prepared and all of a sudden you have to find the strength in your body and your mind to fight while at the same time your soul has been damaged and the emotional pain is worse than you could have ever imagined possible. However it is possible to do this and come through feeling better than you ever have- I am living proof of this and that is why I have called my story pure celebration.

One of the most important things that I have learned on this cancer journey is that there are so many little things that are a daily celebration. The little treasures that life brings us everyday, for me this can be my son laughing, enjoying tasty food or watching the sunset and the list goes on –it’s a celebration to be here to enjoy these lovely experiences. I also make a conscious effort to do something for myself everyday, even if it’s as simple as having a bubble bath or five minutes reading a book. I make sure that I do these things and totally enjoy them. I find it inspiring to read about cancer patients that have beat the odds and survived in spite of their prognosis, it helps to keep me motivated and re-affirms my attitude that if they could do it then why can’t I. It takes daily dedication and hard work to feel so great, but it is totally worth it. My husband would say that it’s like training for a marathon, you just need to keep training to build up your stamina and then it will become more natural and that’s exactly how I see it. Because when you get into that positive mind space life feels so rewarding and enjoyable because you don’t worry about the future you enjoy today.

Believe me this does not mean that there are not times when I get down or feel scared, I have cried my fair share of tears and still need to at times. Occasionally I get sad and angry that I have to work so hard just to keep myself positive and alive, I sometimes fear that the doctors are right, and I can not count the number of times I wake up in the middle of the night scared and still coming to terms with the fact that I am a cancer patient. On those nights when I lie awake while it feels like everyone else is sleeping I re-read the survivors stories, I say my positive affirmations, I visualize my healthy body and focus on believing in my ability to beat the odds. These things help me remember that today I am here living and I love my life in spite of the cancer and every time I fall from that positive space it gets easier and easier to climb back in and feel wonderful again.

Although the medical diagnosis says that my type of cancer will definitely come back to take me away in a few years - I refuse to believe that. I choose to believe with all my heart that there are always exceptions and that I am one of them. Everything about my diagnosis has been rare, the average age for my type of cancer is 20 years older than I am, usually by the time the cancer reaches the final stages the tumors are remarkably large while mine was only 4 cm and did not appear to look like cancer and originally the oncologists thought it was endometriosis, therefore I choose to believe that the final outcome will be unusual too. I can not see how this can do harm because today I smile and laugh and truly enjoy my life. When I was first diagnosed I did not think I would ever have anything to smile about again and laughing seemed unimaginable. But I learned something very important, as cancer patients we are always wishing for more time instead of enjoying the time that we have now.

I recently took a holiday to Thailand with a group of very special people to celebrate the end of my chemo, if it was not for the cancer we would never have got around to taking that fantastic holiday together. I focus on these rewarding things that the cancer has given me rather than what it has taken from me and the amazing experiences that I have had on this journey. While in Thailand we partook in a run to raise money for children’s cancer, which is another new fulfilling experience.

Like every cancer journey mine is filled with a lot if uncertainty, but I believe it will have a positive outcome. What I do know for certain is that if people before me had not raised money for cancer I would not be alive today, so please give a donation to the Silver Ribbon Foundation. The founders, Jackie and Rachel have their own story of starting this foundation in their mother’s memory and I have nothing but admiration for 2 amazing women who are going to make such a difference in New Zealanders journey with gynaecological cancers. The reality is that funding is needed to enhance quality of life with the long term goal of ultimately saving lives.

(March 2008) 

Wendy Cook

In the winter of 2002, Wendy a fit and independent 52 year old woman who has a career first in nursing and then for many years in health planning and management in Auckland and overseas, had a cough that would not go away.
Wendy went back and forth to her GP had a gastroscopy that found nothing, and her GP suggested a second opinion.

She knew something was wrong when she couldn’t keep up with her friends and had to ask them to ‘slow down’. Her GP talked to a colleague at Green Lane Hospital.
Wendy had a Chest X-ray that showed her right lung was full of fluid, they drained it that day and tested the fluid, the following day the Respiratory Consultant told her she had cancer but not of the lung.

Wendy had Ovarian Cancer Stage IV, that had invaded her lung and abdomen cavity. Wendy had an operation to remove the tumor, followed by six doses of chemotherapy. While having her chemo, Wendy sat with a drip in one arm and a pile of papers she was working on in the other. She then had three years of ‘normal’ life.

Wendy attended the ‘Look good, feel good' sessions at the Cancer Society, and went back to work and continued to do very well.
Just before Easter 2006 Wendy presented with what looked like a nasty ear infection, staggering, nausea and the dizziness - due for a CT Scan that day her doctor suggested she call 111 to get into hospital fast. Wendy just thought this nothing other than a particularly bad middle ear infection. An MRI scan showed her distress was caused by a walnut-sized brain tumor caused by a rogue ovarian secondary cancer cell.

Wendy was shattered, at first she thought it was the beginning of the end, but then you just keep on going. Her philosophy didn’t change ‘I accept your diagnosis but I reject your prognosis’. The treatment was harder, she was advised to take 3 months off work, steroids got her in shape for another huge operation on her head to remove the tumour and surrounding cyst, followed by 25 doses of radiotherapy . At this time, CT scan showed more secondary tumors in her abdomen - post radiation chemotherapy followed for 5 cycles. This time Wendy had a potential extra weapon, the DMXAA-laced chemotherapy. A locally developed ground breaking cancer trial drug, her Oncologist Michelle Vaughan knew of. The trial involved patients with relapsed ovarian cancer. Auckland only had two slots and in the fall of the electronic dice, Wendy was fortunate to received the drug. Having this trial drug also made Wendy think about what it may do for women further down the track and what have i got to lose? With the conventional chemotherapy successive scans showed the tumors shrinking away, with the addition of the DMXAA her tumors appeared to disappear completely from sight.

Wendy was in remission until July 2007 when her CA125 started to rise, by September 2007, a further encapsulated tumour was found by her rectum. She is currently on chemotherapy and possibly will have surgery early next year, followed by more chemotherapy post-surgery. Meanwhile she continues on - “accepting the prognosis, rejecting the diagnosis”, however, she is very much aware that it will recur.

A big thank you to Barbara Dodd, for this charming, donated photo of Wendy:
Barbara Dodd | Photographer | Captured in Print

(November 2007) 

Julie Collins

Death tapped me on the shoulder
on the last day of Autumn
but I sent him away in a scurry of falling leaves
telling him not to darken my doorway
He is not welcome here..... not yet. 
Laughed in his face with my friends
my family, my support
who with despair and dismay offer unconditional love
with open arms and hearts to give me strength He is not welcome here..... not yet.
If this is meant to be, though
years numbered on my fingers
should he come again at Spring's end when roses burst
anew
then let me be prepared ~ dignified
to let him take me home to God.
(Jools, June 2006)

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