Living with advanced breast cancer: Diary of a broken-hearted whānau

Thursday, 25 April 2019

Wiki Mulholland, who has stage-four breast cancer, speaks to Stuff in 2018 on her fight to have a life-saving drug funded. (First published August 30, 2018)

The Mulholland family had their world turned upside down when mum of three Wiki was diagnosed with breast cancer on May 4, 2018. Husband Malcolm has charted the highs and lows, the despair and hope, in a diary, as he campaigns for access to costly drugs that could save his wife's life.

May 31, 2018: A day of shock and tears. My beautiful wife and mother to our three kids, Wiki, has advanced breast cancer. We thought she'd be going in for mastectomy, but we got the news today that surgery isn't an option. Her bad back has been examined via an MRI scan, showing metastasis. We can't believe it…our entire whānau is devastated.

June 1: Our youngest, Patrick, turns 10 today. Trying to keep it together so he has a great day with his mates for his first sleepover party.

* I nquiry into effect of health system on Māori

The Mulhollands joined a group of Manawatu breast cancer sufferers to take their protest to Parliament.

* Pharmac to review its practices following criticism of breast cancer drug funding**

June 7: Off to radiation - three appointments within four days. Need to stop the cancer on her spine. Wiki on Tamoxifen, an estrogen blocker.

June 14: A hard conversation - I've told our kids that I will do everything I can to keep their Mum alive. We've had so many family and visitors come through our doors, most with a quiche or a bolognaise in the hand. Great to have some working bees to help with our section while we spend so much time at hospital.

June 24: My saddest birthday ever – Wiki putting on a brave face.

Wiki Mulholland was one of a group of women who presented a petition calling for better access to drugs to the Health Select Committee.

July 10: Need to hatch a plan to keep Wiki alive as long as we can. Have been doing what I was told not to do – consulting Dr Google. Can't switch off my background in research. Last month a US woman was cured of advanced breast cancer. There is hope! Have learnt that the more lines of treatment a person has the better chance they have of living longer.

August 15: Terrible news. Tamoxifen is not working. CT scan and bloods show cancer has progressed to her spine, sternum, skull and pelvis. Oncologist told us to never lose hope and about a 'wonder-drug' called Ibrance. Trials prove that the drug extends life, on average, by two years. He is optimistic that the drug will be funded by Pharmac and so has proposed Wiki go on a course of 'Triple M' chemotherapy in the meantime. More tears.

August 23: First chemo day of six in the coming months. The toxicity must be bad as the nurses wear hazmat-like suits. Wiki sad from being poked and prodded with needles on a weekly basis. Like clockwork, she is exhausted the day after having chemo and days 9 and 10 she suffers from migraines and needs bed rest.

August 31: Going public about Wiki's disease. Wiki is uncomfortable discussing her body and disease but she wants to raise awareness about breast cancer and the need for the drug, Ibrance, to be funded. Givealittle page advertised and about $30k raised. Getting weird looks at Auckland Airport as we are balling our eyes out over people's generosity.

Malcolm Mulholland is fighting for Pharmac to fund life-enhancing cancer drugs.

September 1: Wiki belongs to two awesome support groups – Sweet Louise and Metavivors. Terre Nicholson from Metavivors has asked if we can help her present her petition to Parliament for Ibrance to be funded. They are also presenting a petition to fund another wonder drug, Kadcyla, for patients with HER 2+. The drug prolongs life, on average, by ten months.

September 9: I want to understand for myself why the wonder-drugs, Ibrance and Kadcyla, are not funded in NZ. I used to think we had one of the best health care systems in the world - how wrong I was. Have done plenty of research and now understand that Pharmac is one of the worst organisations in the OECD when it comes to funding modern medicines. They are chronically underfunded (we spend only half of what other OECD countries do for medicines), 124 drugs are on their waiting list, and they take, on average, four years to approve a drug. Have heard of women shifting to Australia or travelling to Malaysia to buy the drugs.

September 17: Wiki is having a bad reaction to bone strengthening medication that gives influenza-like symptoms. Five days in the hospital isolation ward as neutrophils are dangerously low and we need to be safe.

October 16: An emotional day and a great turn-out with many of the Metavivors meeting each other in the flesh for the first time in Wellington. Eighteen MP's have come to receive the petitions with over 30,000 signatures on the steps of Parliament. Have also written a lengthy researched document, calling for an inquiry into Pharmac by the Health Select Committee (HSC) and the Māori Affairs Select Committee – we need to fix the system so that other whānau don't go through what we have. Both Louisa Wall and Michael Woodhouse saying they stand with us in the call for an inquiry into Pharmac. Sadly, the Jami-Lee Ross story is the big news at Parliament.

November 7: Breast Cancer Foundation NZ have released the first comprehensive report into women with advanced breast cancer – Kiwi women die twice as fast as other countries such as Australia. They only last, on average, for 16 months! For Māori it is worse. The reason: lack of access to drugs.

November 31: Wiki's 41st birthday. Love you heaps xxoo.

December 4: Had our day in front of the select committee with Terre. Really hard to hear my wife talk about having 'angel wings' and how she feels the government does not value her life.

December 19: Received letter from PHARMAC today that under the current recommendation for the funding of Ibrance and Kadcyla women who need it now will be excluded. Gutted about the news in the lead-up to Christmas.

December 23: Our daughter, Molly Rose, told us she had written an open letter to the Prime Minister, pleading for her intervention and help. It is published in the Manawatu Standard.

The Mulholland family from left; Ihaia, 14, Wiki, Patrick, 10, Malcolm, and Molly Rose, 18.

December 25: Had Christmas in our new home that we bought before Wiki took ill. We imagine our mokopuna running around in the years to come. Had a beautiful lunch underneath the long veranda with whānau and friends.

January 1 2019: Proud husband moment - Wiki named 'Manawatu Standard Person of the Year.'

January 23: Best news ever! Wiki's cancer is stable and 'Triple M' has worked. Yippee! Kids and whānau over the moon.

January 29: Heard world expert breast cancer oncologist, Dr Fatima Cardoza. She can't believe how far behind New Zealand is when it comes to accessing cancer drugs. Quote 'Before I arrived to New Zealand, I thought you were a first world country. When it comes to cancer drugs, you are a third world country at best.'

January 31: At the 'Cancer at the Crossroads Conference.' Congratulations to Melissa and Blair Vining for telling the Minister that he has failed them with no national cancer action plan.

March 11: Māori Affairs Select Committee have announced an inquiry into looking at health inequities between Māori and non-Māori that includes taking a closer look into Pharmac. A great day! Ngā mihi Matt Tukaki and the NZ Māori Council for their active support towards achieving this outcome and congratulations to the Māori Affairs Select Committee.

March 13: Went to Wellington to support the women telling their heart-breaking stories to the HSC for the funding of Ibrance and Kadcyla. Wiki spoke and was angry at the lack of progress on an inquiry. Not a dry eye in the room with one hardened camera operator having to excuse himself. Between Sweet Louise and Metavivors, over 80 women have lost their lives since we launched the petitions. Day Two of the presentations is next week when we are away watching our son, Ihaia, play softball in Australia. We need to make the most of making memories with our kids now.

March 29: Check-up day is always filled with dread. Great news! Wiki's bloods are still stable. Triple M has continued to keep her cancer at bay.

April 3: Went to listen to Roche and Pfizer (the drug companies that produce Kadcyla and Ibrance), the Ministry of Health and PHARMAC at the HSC. It is obvious the relationship between the drug companies and PHARMAC has collapsed. The Ministry of Health revealed that only resource they have directed towards developing a cancer action plan is a Project Manager.

April 6: Ihaia's 14th birthday. Wiki in good spirits.

April 10: Molly Rose's 18th birthday. Michael Woodhouse has tabled a motion for the select committee to hold an inquiry into Pharmac. Labour and NZ First have decided not to back an inquiry. Have lost hope now. Am devastated and angry and read a statement calling for the Minister of Health to either resign or be sacked. Heard interview with Louisa saying she backs an inquiry by the Law Commission or Treasury but not the HSC, as they are 'not independent.' Very confused as the Māori Affairs Select Committee have announced an inquiry and we have been told that the HSC are the appropriate body within Parliament to hold an inquiry. It seems that permission to have an inquiry may have to be sought from the Minister of Health, Justice or Finance. Pleasing to hear the PM talk of her directing the Minister of Health to get advice into an early access scheme but disappointed she had to tell him.

I am extremely buoyed by the number of calls, texts and messages of support from people from all walks of life, some of whom I have never met, who have said to keep pushing for an inquiry into Pharmac especially from the Metavivors. Hope is back.

April 15: Have heard from several sources that Kadcyla, one of the drugs we presented a petition for it to be funded, is going to be turned down by Pharmac. This is gut-wrenching.

April 17: Have been overwhelmed with the number of messages of support from patients, their whānau, and disease advocacy groups, all of whom want more drugs funded and an inquiry into Pharmac. This includes Head and Lung Cancer, Multiple Sclerosis, and Cystic Fibrosis.

April 24: We've decided to march together to Parliament under the banner 'Right to Live' on May 7. We now have eight petitions covering the diseases Lung Cancer, Breast Cancer, Ovarian Cancer, Chronic Lymphocytic Leukaemia, Myeloma (Bone Marrow Cancer) and Pompe Disease. In total the petitions ask for over 20 drugs to be funded. Hope is not only back, it is strong.

* There are several petitions before Parliament for extra funding for cancer drugs. To find out more go to https://www.parliament.nz/en/pb/petitions/