Stories from our friends
It’s hard to fit my story on a single page because there is so much to say.
Almost 4 years ago now, when I was 44 years old, I was told I had inoperable metastatic lung cancer. This came as a massive shock because, apart from a small cough and shortness of breath, I was otherwise fit and healthy. And I had never smoked a cigarette in my life!
I could go into all the details about my diagnosis, how we broke the news to our children and the reactions of my friends. Why I couldn’t cry, how I felt about having to put my eldest child, (who I’d be home-schooling) back into school, how I felt when the Social Worker came to my house. And how amazing it was to be supported by the people I met along the way.
I had always strived to be a ‘glass-half-full’ kind of person. I realised that I had achieved that goal when I had that meeting with my Oncologist. You know, the meeting where she tells you that yes, you’re going to die. And when you ask how much time you have left, she tells you 3-6 months; maybe more, maybe less.
And I’m sitting there thinking of all the positives;
‘At least I won’t ever have to go to the dentist again.’
‘At least I won’t have to go through menopause.’
‘At least I won’t get old and wrinkly.’
‘I really had become a glass-half-full kind of person. Go me!’
After 4 weeks, I saw my oncologist again, and she had amazing news for me. My biopsy’s had tested positive for the rarest mutation. Only 2-5% of people with lung cancer have this mutation, and they tend to be young non-smokers. My oncologist told me that she had been successful in getting me compassionate access to a targeted therapy drug. This drug was unfunded in NZ and worth hundreds of thousands of dollars. But I could get it, for as long as it worked for me, free of charge! She made it very clear to me that this drug therapy was not a cure, but would hopefully, give me extra time.
My friends and family had been praying for a miracle - now here it was!
Eventually, my cancer became resistant to this drug therapy. My oncologist told me that she had bypassed all her usual channels in Australia and the South Pacific and had applied straight to the drug company’s head office in Switzerland. She had been successful in getting me compassionate access to another, different targeted therapy.
I started the new drug therapy early this year and recently had a CT scan which showed that everything is still stable. The only side effect I really struggle with on this drug is fatigue, which has been really hard.
I can honestly say that I hardly ever feel down about my situation. I know I’ve been incredibly lucky. The support I've received from friends, family, the community, and Cancer Society has made all the difference. It is also hard to feel down when people continually do nice things for you.
I have so much to be thankful for and every day is a treasure. I am getting to see my kids grow up!
I won’t get to live as long as some people, but I’ve lived a lot longer than others in my situation. And I have had, and am still having, the best life!
In 2011 I was diagnosed with Triple Negative Breast Cancer. At the time I was 35, and my daughters were 5yrs and 10mths old. I had no family history of breast cancer and didn’t know anyone my age who had cancer either. I remember my husband and I sitting in the specialist’s room trying to take in all the information that we were being told and feeling terrified of the possibility that I might not be here to see my children grow up.
Nothing can really prepare you for how you’re going to feel when you get given a cancer diagnosis. I liken it to suddenly finding yourself in a parallel universe where everything looks the same, but everything feels different. It’s a club that no one wants to join, and no one signs up for.
My cancer treatment consisted of two surgeries, 6 months of chemotherapy and 6 weeks of radiation. My treatment took the best part of a year. I was fortunate enough to be able to give up work during this time so I could concentrate on getting better and being well enough to look after my young family. I had amazing support from family and friends, and it’s true when they say that you really find out who your “people” are when something big like this happens.
Living in Waikanae Beach and having to travel to Wellington Hospital for treatment added a lot of time and cost into an already stressful situation. We were able to park for free at the Cancer Society for all these visits, which was such a help. The Cancer Society also helped enrol me in the “Look Good Feel Better” initiative, gave me information about a wig subsidy and put me in touch with other breast cancer patients on the Kapiti Coast. They had a huge amount of resources available, and I knew that they were there if I needed them.
After finishing all my cancer treatment, I had figured that I’d just to go back to work and get on with my life, but my mental health had other ideas. While having Chemo and radiation, I felt like I was fighting cancer and doing something proactive to prevent it coming back but once I was done I suddenly felt very vulnerable, scared, and my anxiety around this went into overdrive.
It is very common to suffer depression and anxiety after fighting cancer but I wasn’t really aware of this until I was in the thick of it. Nowadays I’ve been told that they include info about this in lots of handouts for cancer patients, which is fantastic.
I really believe it is a huge positive to talk about this side of a cancer diagnosis and I certainly am more than happy to speak about my own experiences with anyone who finds themselves in that position and wants to know more.
One of the things I discovered helped my anxiety was learning to paint. I have always been creative and during my recovery I decided to give painting a go which I absolutely loved. I’m an active relaxer so painting totally took my mind off my worries and left me feeling de-stressed and relaxed.
In 2017 I was approached by a friend who works at the Cancer Society in Kapiti who asked if I might be interested in creating an artwork for them as part of their fundraising. I was really pleased to have been asked to do this and I was also chuffed to be able to give something back to such a great organisation.
I am Emma. I survived bowel cancer in 2017, and here I am one year later at 34 years of age looking back at the experience and thinking “that really happened to me!”
I received amazing support not only from friends, family, my local community in Alfredton, but also the Cancer Society Wairarapa – which is why I want to acknowledge publicly the work that our local Society does.
I knew that the Cancer Society was a safe, friendly place to go and discuss what came as a big shock to my husband Brian and I. Hospitals are okay and were very efficient, but I don’t like hospitals, and I wanted to ask what seemed like stupid questions and for someone to treat me in a caring way. The nurse at the Cancer Society spent time talking us through the many issues facing us as a family. She invited us to join a one-day workshop demystifying bowel cancer.
I felt lighter after leaving that workshop, as many of my questions were answered. It was great timing as we were just about to start treatment and I was able to understand some of what was ahead for me. My husband also connected with another carer from that workshop and they were able to discuss the impact on them of having wives with cancer.
I know now how important it is to be aware of changes in my body and just how difficult it can be when you don’t fit the demographic for bowel cancer. I am too young for the typical diagnostic age, which is between 60 and 74. I never thought I would get cancer.
Following my intensive treatment which took about 6 months, after surgery in Masterton Hospital and chemotherapy, I joined the Bowel Cancer Support group at the Wairarapa Cancer Society. It was so good to talk with people who have been through the same experience and receive their support.
My support in recovery through the CANSURVIVE programme funded by Cancer Society, has helped me manage my fatigue, diet, and other issues facing me now in this early post-treatment phase. When you survive treatment you feel like you want to climb a mountain but your body tells you otherwise. Jacinta, the nurse, is helping me with a gentle fitness regime post chemo.
When you are going through treatment, you forget that at the other end, there is a journey into surviving this disease, and you want to do everything you can to prevent the cancer coming back. Having a nurse and a counsellor available to talk to and help me, particularly in adding new skills and ideas to my basket/kete to cope, has made me feel valued as a person and more confident in managing my recovery.
I have everything to live for and am grateful for everyone’s support. I now say to people, “don’t be fools; check your poos! Who do I wear my Daffodil for? I wear my Daffodil for me!”
In 1974, Raju Badiani left Uganda. “I wanted to start a life somewhere peaceful. I couldn’t have chosen a more beautiful place to bring up my family”. Now he has become part of our family. If you pop into our Newtown office during the week, chances are you have spotted him on our exercycle! His smiling face makes our place great. Read on to find out how Raju came to be with us.
“In 2009 I was diagnosed with Prostate Cancer. It was hard at the time, but my colleagues were very supportive of me when I was going through this, and my boss was considerate during this time.
“I got along with life until 2015, when I had my second cancer diagnosis. It was a different scenario this time as I was retired and had more time on my hands. Julie Holt, the Supportive Care nurse, became a major support person for me. She’s terrific, I can’t say enough about all the nurses! They are very easy to approach, and the empathy you get from them is vital. All you just have to do is ask – help is always available!
I ended up becoming part of the yoga group there with Naena– her classes are very easy. The sessions gave me more physical flexibility and helped me with my breathing. I began to look forward to my yoga every Tuesday… my late friend David Ryie and I never missed a session. Fellowship and friendships developed with a cup of tea afterwards, and I always felt energised for the day ahead.”
Raju became a regular at our seminars and workshops that are available for patients and their supporters. “I would attend the Prostate Support Group regularly (until November last year). These are meetings of like-minded individuals, who are hungry for information… which is shared with love and confidentiality, and the trainers make a special effort to select relevant topics. They keep it as enjoyable as possible.
I am really pleased to use the exercycle at the Newtown Office that is available, and I ride it two to three times a week. I like being a good role model for a healthy life!
You know, it is like a family here. You feel like you belong somewhere and you are always encouraged to come back. People draw on that positive energy of being supported. All the regular drivers, volunteers and staff are part of the culture there. I too, enjoy being part of their culture at the Cancer Society Wellington. It is an important place that helps everyone move forward with their lives.”
“My cancer journey started when I was diagnosed with breast cancer in Nov 2010.
What followed was a mastectomy and removal of some lymph nodes under my arm. I had months of chemo and five weeks of radiation therapy, and during my treatment, the Wairarapa Cancer Society was very supportive. I attended a Look Good Feel Better workshop hosted by the Cancer Society Wairarapa, and it was very useful in helping me to cope with my changed image.
The Cancer Society were great because they provided me with support when I developed lymphoedema in my arm and the Support Nurse assessed me and referred me to a specialist lymphoedema physiotherapist at Wairarapa DHB who fitted me with a compression sleeve. One of my passions is now finding out ways to manage lymphoedema if you live in the Wairarapa. Alongside the supportive care coordinator at Cancer Society, I have recently started a new group at the Centre supporting those with lymphoedema.
Cancer Society Wairarapa offers a wide range of services such as therapies, transport to treatment and peer to peer support such as cancer connect and local support groups etc.
The Wairarapa Centre offers a one-stop shop approach to breast cancer management in that I had pre-surgical support and information, and post-surgical support with fittings for prosthesis and bras and ongoing symptomatic education and support by a nurse into survivorship.
I also attended a course at the Cancer Society which was held over four weeks called Life After Breast Cancer, and I found that very informative and I met others on a similar journey.”
I was fortunate that I have family in both the Wairarapa and Wellington, but it was very reassuring knowing help was there if I needed it by volunteer drivers. It was an easy decision becoming a volunteer going forward because I am grateful for the support I got on this journey from patient to a survivor from Cancer Society Wairarapa. I give back because I can, and helping with support groups and as a volunteer at Relay for Life in 2017 enabled me to do just that and to see how far I have come on this journey.”
Originally from South Africa, Cecily came to Kiwi shores 25 years ago and settled in Wellington. “I have loved Wellington ever since I arrived here... there are memories on every corner. It’s not my turanagawaewae but it is a great home for me.”
“When I was diagnosed in February of 2016, the Mary Potter Hospice came to me and suggested that I pop into the Cancer Society Wellington. So I did, and I was delighted to see such fantastic services on offer! I come here to use the yoga and t’ai-chi classes, and I also use the counselling service. I take advantage of the massage service too.
Having those services available to help one navigate through the various emotions that one is going through is amazing. You know, it is so different from when my mother died of lung cancer... which was such a clinical and hospitalised process from the minute that she was diagnosed. Whereas I love the approach here, the support, especially as someone with a terminal diagnosis, that has empowered me to get my head together, make my own decisions about my treatments, allowed me time to give up work (I was a workaholic), and then have this openness to discuss and be free to find the support. And there is a smorgasbord of support to choose from. Not just for myself, but also for my son. These services that the Cancer Society have on offer, they help me to deal with the mind, the body and the spirit.”
Cecily has led a life working in education, and she says this is the first time she has really started to become in touch with her body. As a self-proclaimed ‘thinker who lives in her head’, Cecily finds her diagnosis an opportunity to self educate. “This is a learning journey for me... and I just love learning. It is my work, it is who I am. So I am trying to embrace this new learning process.”
“I have felt blessed to have this time to prepare myself for death. I feel lucky to be able to put things in order, to prepare myself and those around me. I feel lucky that it is this way, rather than being hit by a bus or something sudden like that. After the initial shock I actually feel rather positive about it. For me it is about looking at oneself, and knowing answers will come. As my son said to me “Mum, if you feel your work here is done, then maybe it is your time.” That is the best thing he could have said to me. It is just another step I need to take on my journey. Death is but a veil, it is never a chasm.”
It all started with a lump in my left breast. A mammogram, ultrasound and biopsy confirmed cancer and the need to have a mastectomy. I was overwhelmed with information and medical jargon but luckily a Cancer Connect pamphlet was included in the pack from my specialist, so I called the 0800 number. I remember being able to talk to real women who had had the same procedures I was about to have, and how good it was to get their experience and perspective.
Fast forward a couple of years after my surgery and I wanted to make use of my own experience to help other women. I now volunteer as a Cancer Connect caller, with the Cancer Connect nursing team matching me with women wanting to know how I felt at the time, what my experience was, and how I feel looking back on it. I’ve been making calls to people for the past four years and it is so rewarding. Each time I pick up the phone to talk to someone I remember being on that end of the line, wanting to know all about how it felt to have surgery – not just what was going to happen in a medical sense, but the emotional side of things and what was going to happen to my body.
I love the chance to talk to other women, to hear their stories, and to learn from them. Volunteering fits in well with my work, and I can make calls when it suits me and the women who ask for support. It’s sometimes weird reliving that time in my life, but it’s satisfying to know that my story can help other women feel better, calmer, or more armed with the information in order to make a decision. I have also enjoyed the connection with the nurses at the Cancer Society, the work they do makes going through cancer and treatment so much less scary for people who use their services.
My cancer journey started when my sister developed breast cancer in late 2009. Over the next year our family rallied around her and helped her through surgery and then treatment. I remember being very impressed, both with the professionalism of the doctors and nurses and with the amazing assistance provided by the Cancer Society Wellington. They had so many helpful resources, and best of all a team of wonderful staff who knew just how to help us support my sister.
In many ways this prepared me for my own experience with breast cancer. I remember completing the mammogram and biopsy, and then going to see the surgeon who told us not to worry about it over Christmas and to come back in early January for an actual diagnosis. I will never forget her words when we saw her again, “I’m sorry, but it is cancer…and I’ve pencilled you in for surgery on Thursday.” The surgeon was so amazing, she had known it was probably going to be cancer before the results came back and had already made the arrangements for my mastectomy – needless to say her name features regularly in our prayers. And of course, I knew the kind of support the Cancer Society Wellington could provide to help me through my recovery.
Since then I’ve become a lot more involved with the Cancer Society – but as a volunteer, helping other people access the same services that helped me. A couple of years ago I became part of the board of the Cancer Society Wellington.
One of my passions is helping Pacific women who have cancer. Often cultural misunderstandings can create barriers to these women receiving the support they need. In 2016 some friends and I developed a pamphlet resource to help Pacific and Māori navigate their cancer journey effectively. I also help run Fesoasoani – a support group for Pacific Island women with cancer. We provide a safe place for Pacific Island women to share their cancer experiences. Most importantly, we reinforce to these women that with agencies like the Cancer Society ready to help them, they are not alone.
“I lost my ability to talk, but as a result - I found my voice.”
Nancy Thompson gave a moving speech at Relay For Life, Wellington this year. We wanted to share it with you, to show the kind of brave individual that your donation is helping.
"Kia ora tatou - hi everyone.
Firstly I would like to congratulate Dawn Almanzor and her team for this amazing event.
This is my first time at Relay For Life. I’m not used to standing on the stage talking to competitors and supporters. I’m usually competing – athletics, at the gym training for body building and more. Recently I’ve been doing 10 kilometer walking races.
I came under the care of the Cancer Society five and a half years ago when I was diagnosed with a five centimeter malignant tumour in an unusual place in my throat. After all the radiation and chemotherapy treatment I unfortunately needed to have radical surgery to remove my voice box, disconnect my nose, and remove a muscle from my neck to save my life.
I believe that without the incredible support of this organisation and the amazing team of people, both paid and voluntary – yay for volunteers! – I would not be standing in front of you today.
I tapped into everything I could to help me pick up the pieces and continue my life. I went to art therapy sessions with Mary and massage with Bobby-Jo - that man is so talented! I attended head and neck cancer workshops, and had countless support sessions with the magnificent Marg Alve. That woman got me through.
For me the value of an organisation is always found in its people – you! Quite frankly I think the Cancer Society is a taonga in this country; a priceless treasure.”
Meet Gaye Davis. She is one of our residents at Margaret Stewart House - our on-site accommodation at Wellington Hospital. Margaret Stewart House is dedicated to out-of-towners needing cancer related treatment.
When Gaye Davis and her family moved from their farm to the streets of Masterton, they envisaged a new beginning ahead. So when she was told that she had a brain tumour that needed to be removed, her new start turned into a journey of healing.
Gaye was told that she will need four weeks of radiation therapy, and chemotherapy down the track. So
naturally the mum of four was wondering how she was going to manage her appointments. In comes Margaret Stewart House (MSH).
“I don’t know what I would have done without MSH. Masterton is quite far away, someone would of had to drive me in to Wellington once a day. Or catch the train in and back again… which is not ideal... especially when you have just received treatment and your feeling exhausted. It would’ve been way too much for me.
My room here has beds for my kids to stay in, which is fantastic. For them to come down and spend a day with me… well it’s helped them to be able to understand what’s going on” says Gaye.
But it is the people who have truly made MSH feel like a home away from home. “I met a woman here who has the same thing I have. It was so good talking to her. The best thing here is all the people… and meeting others on a similar journey, we are all in the same boat. There is a sense of camaraderie. The staff are so amazing and the volunteers too. I call it my little Motel.”
Gaye has been making the most of the library, and the “awesome scones on Wednesday, with cream and jam”. She also loves the location based in Newtown, New Zealand where she can jump on a bus to go into the city, walk to the zoo, the shops and our famous Wellington Cafés.
We wish Gaye a full recovery for the journey ahead. Your donation goes towards providing a range of services that include Margaret Stewart House. Without your help we couldn’t support people like Gaye. So from the bottom of our hearts, we say “thank you”.
Thank you all for sharing your stories with us. We wish you well as you continue your journey.