What will you do when your life changes in the blink of an eye? When you’re facing the choice to live or die? Will you stand up and fight, or lay down, cry and give up?
Meet Stephanie Francis, your everyday housewife, mother, grandmother and worker who found through extenuating circumstances, how truly resilient and remarkable she is. She was in good shape, constantly busy and generally loving life. When she first started seeing her stomach get a little bigger, she thought it was just weight gain and part of getting older. She joked about all her life she had been skinny and now she is getting older, she has started gaining weight. Even when her stomach continued to grow, she was feeling good and thought maybe she should get it looked at, but life kept getting in the way. Now reflecting back, Stephanie says “There’s always something that a mother needs to do before she does something for herself.” Glen, her husband, had cancer and she was thinking she would deal to herself once he was better. She was also running a busy house and bringing up 3 of her grandkids. Then her daughter got married and she had to be there for that. Stephanie said, “There was just never time and it wasn’t giving enough grief at the time to validate being concerned about it. I had too many responsibilities to think about it.” Her stomach got bigger and harder, she just thought it was the way she was living life. “I’ve always been skinny and I’m thinking I’m going to get fat at the end of my life.”
Then Stephanie’s health started to deteriorate – she couldn’t shake off a cold, then she had trouble breathing. Over the next two days, she deteriorated even more and she couldn’t breathe without the assistance of a fan while sitting up gasping for air. They had to call an ambulance and she was rushed to hospital. She was rushed into the emergency department with a pneumonia-related illness, but on admission, concern focused on the large swelling in her stomach, and the decision was then made to drain the fluid from the swelling. Over the next two days, 30 litres of fluid was drained from her stomach. Unfortunately her whole body went into shock as she had two types of pneumonia and her body just couldn’t handle the stress it was under.
Stephanie was rushed to ICU and her family were informed that it was unlikely she would survive the next couple of days. Lawyers were called in and forms were signed in preparation for her imminent death. Her family sat with her and waited while preparing for the inevitable, but despite the terminal diagnosis, Stephanie clung on and after 11 days she was discharged from ICU to a ward. Two months passed and it was decided Stephanie was able to return home as nothing could be done for her. She was given a diagnosis of ovarian cancer. The tumour had started refilling and after the two types of pneumonia combined with being bedridden for so long, it was determined she was too weak to go through the required surgery to remove the tumour, which would be likely to continue to grow until it eventually crushed her internal organs. It was also decided that there wasn’t going to be an attempt to drain the abdomen again and was given the option to be referred to Arohanui Hospice or be looked after by family.
Stephanie and her family made the decision that she would be referred to the Hospice for care in her own home. The Hospice team arranged a hospital bed to be delivered to Stephanie’s home, and then the Arohanui Hospice Palliative Care Co-ordinators (PCCs) providing specialist end-of-life care and support to her and her family in the family home. Stephanie was lucky to be well supported by her family, and this allowed her to remain comfortable and happy, despite her grim outlook. Arohanui Hospice provided appropriate medication which would help make Stephanie comfortable, and were also draining small amounts of fluid from her abdomen to ease the pressure in her perceived final days. It was during one of these at-home palliative care visits that the PCC thought Stephanie was deteriorating and sought advice from of the Hospice’s doctors. This lead to a visit from Arohanui Hospice’s Director of Palliative Care, Dr Simon Allan. Little did Stephanie know that Dr Allan is a man who has more than 40 years’ experience in palliative care and is a renowned as an expert in his field and a of immense knowledge.
The day of Stephanie’s visit with Dr Allan had arrived and as he walked down her drive, all she could think of was he was coming to tell her that was her time had come and she would have hours or days to live. Dr Allan knocked on the door and Stephanie’s heart dropped as she knew this was it, her time on this earth had reached its conclusion. Dr Allan says, “I walked in and found Stephanie on her bed, she was hardly able to move and she was just waiting to die. Diagnosis shouldn’t be the end and I had to assess what rehabilitation potential there was, both mentally and physically” Stephanie likens what occurred next to winning the lottery. Dr Allan walked in and told her to get out of bed that was she wasn’t dying. Stephanie lay there in shock as she heard those words and once the shock wore off, Dr Allan stated if she had what was originally diagnosed she would be dead by now. His experience told him she didn’t have ovarian cancer, but more likely a benign tumour and she could live another 6-9 months without surgery. Dr Allan knew ovarian cancer is not a common cancer and what makes this a difficult cancer, is that by the time most women present to their doctor with symptoms, the disease has often spread and become advanced, and is therefore very difficult to cure. Dr Allan’s experience told him something wasn’t right and that after 10 years of having this tumour grow, Stephanie would of seen cancer spread throughout her body and she presented no signs of this and nothing in prior tests supported her having cancer anywhere else.
This meant Stephanie had to make a call – would she put herself through the stress and the anguish of willing her body that is weak from months of being bedridden and have the possibility of nothing coming of it, or does she just leave it and try to die in comfort? What may seem like an easy decision to many of us not in Stephanie’s situation was more difficult than we could imagine. Her family had prepared for her to die, could she give them false hope and die anyway? How much pressure will she put on their time? How was she going to physically cope while waiting, and what if something went wrong? Stephanie was confused – she was mentally ready to die, her body was weak and broken, did she have it in her to try again? Her husband, who had her support during his own battle with cancer, became her voice of reason and asked what they needed to do. Dr Allan explained she needed to become fitter and mobile or it was pointless looking at a diagnostic procedure. Glen said he would do whatever he can to get her ready and reminded her do you want to spend the rest of your life slowly dying knowing you had a chance to live.
Dr Allan left the visit hopeful that after 3 months of being immobile Stephanie would mentally be able to get herself in a position to push and will herself to try and give herself a fighting chance of living give it a go. A week later, Stephanie was able to walk across the lounge at home; this was a mammoth feat, considering how deconditioned her body was. Stephanie said, “This was one of the toughest weeks of my life, my mind was willing but my body was so weak and standing was hard. I just felt as though my body would collapse every time, I just knew, despite the pain, I had to try and after the first step, knowing I could, it started becoming a little easier” Dr Allan informed Stephanie that he had been speaking with surgeon Richard Coutts about her case, and wanted her to meet him to look at surgery options. After meeting with Mr Coutts, it was reiterated how important getting her strength back was and if they could find an anaesthetist willing to be part of such a challenging and risky procedure they could operate and remove the cyst. They found that anaesthetist in Mr Alberto Ramirez, who agreed on the strict condition that Stephanie continued to improve her fitness and strength. Stephanie now knew there was real hope, and it was all down to her now. Stephanie and her family decided they would do all they could to have her fit enough to have surgery. This meant things like her family gradually lessening the assistance they have been giving her with walking, and other simple tasks around home. This was the best thing for Stephanie, as she had to beat the mental and physical barrier, and achieving this showed her that her body was capable despite the pain. Stephanie started to regain her independence, and this perked her up mentally and physically. This then led to her and her husband going for a short daily walk, gradually increasing to twice a day and eventually three times a day over the next 8 weeks.
After 8 weeks, Stephanie had improved her fitness and strength and could walk short distances unassisted, and her breathing had improved. But was she in good enough shape to have the surgery? The day had arrived to meet with the surgeon and anaesthetist. Stephanie couldn’t keep from asking herself had she done enough. Could she do more? Will life throw one more twist at her? It was recognised at the meeting that Stephanie’s body was still weak, but not so that she couldn’t have a very well planned surgery. The specialists took the improved fitness and mobility as a sign that she had been working hard, and was mentally determined to live. It was a case of Stephanie being motivated to make the best decision for her, and showing them that she wanted to fight to live. It was decided that they would do a slow surgery to give her the best chance of success; this would involve suction followed by removal. Stephanie and her family were told the surgery would go ahead in four weeks from the appointment, and she had to keep working to contribute towards an improved chance of success. Stephanie kept her side of the bargain over those next four weeks, and the day of the surgery soon arrived. Stephanie admits she was terrified of the operation. Previous experience had her petrified of going through a draining again. Once she arrived at hospital and started prepping for surgery she felt a strange calmness come over her, and as she sat with her family she turned and said “I’ve given this my best shot and if I don’t make it, there was nothing more that could have been done. I wouldn’t be here today with hope of a better tomorrow without your support and belief, each and every one of you have shown me how wonderful my life is and I’m doing this because you have all shown me how much I mean to you all”. Stephanie recalls before she went to the surgery, with her family around her it was like they were just hanging out at a special occasion. Maybe it was because they had gone through all the stress of being told she was going to die twice already, they were now prepared for the worst. Stephanie was ready, and as she lay there before being anaesthetised for the surgery, she recalls never feeling so calm and at ease at any other time in her life.
Stephanie’s surgery involved 10 litres of fluid being removed slowly over a few hours before the removal of her tumour. After a long 8 hours of surgery, Stephanie was still alive and to the amazement of the surgical team, they had just removed one of New Zealand’s biggest ovarian cysts weighing a whopping 26kgs! What is more incredible is before surgery she weighed 78.8kgs and post surgery she weighed 42.3kgs, making the cyst before draining one of the largest ever removed in the world and estimated to be at least 35kgs! Stephanie is now very gratefully on the road to recovery. She admits it is slow progress as your body just can’t bounce back quickly from such a low point. She is grateful to her husband for his support and after 38 years their relationship is now stronger than ever. She is grateful to her family who without their support and encouragement she wouldn’t overcome the physical and mental barriers. She is also credits Dr Allan with saving her life. Dr Allan says, “Stephanie’s story is a celebration of life and perseverance. If she didn’t make it, she gave it everything she could. This is a story that shows that the mind is stronger than the body and we just need to find that inner strength. Sometimes it just takes being motivated towards what is the best decision for you.” Stephanie says, “Being referred to Arohanui Hospice was like winning Lotto, we were so lucky, we had to go through so much to get where we are and when we thought it was all over, in walked Dr Allan and gave us hope and belief at a time of absolute despair. Dr Allan is amazing and what he has done for my family and myself is truly incredible”
“Arohanui Hospice was meant to be helping me make my last days more comfortable and instead their dedication, compassion and understanding of their patients and families has given me a new lease on life. Having Arohanui Hospice in our community makes our community a better place”
