Marg's Story
Marg’s (mum’s) Story – Elissa Bowen & Kirsty Ralph
On the 7th September, 2006 mum was concerned about some post menopausal bleeding she had been experiencing so made an appointment to see her GP. She underwent a routine pap smear but was somewhat reassured by her doctor that women her age (61 years) could often have ‘bleeds’ due to hormonal changes. The next day she was contacted and referred to a Gynaecologist – her pap smear results indicated ‘endometrial adenocarcinoma’, and further investigation was required. On the 19th September, 2006 mum had a further appointment with a Gynaecological Oncologist who recommended she undergo hysteroscopy (D & C), and this took place the next day, followed by a CT scan the following week. It was after these further tests that mum’s diagnosis of cancer of the cervix was confirmed. It was a scary diagnosis but mum was ready to fight a disease we all hoped could be cured through surgery and treatment – at this early stage we had no understanding of the ‘monster at large’!
Mum was admitted to hospital on the 7th October, 2006 for a ‘radical hysterectomy’ to remove the tumour in her reproductive organs. She did not recover well from her surgery spending 10 days in hospital, a stay we had all expected would only be 3 to 4 days. It was during the time mum was recovering in hospital that we learnt she actually had a very rare form of cancer called “Neuroendocrine Carcinoma”. The news was devastating.
Mum had always been a healthy and active person – “a real doer”! She had always faced any hardships with a positive, strong attitude, but this disease was going to test her strength. It is hard to hear that you have cancer, but even harder when you hear you have a very rare, little known cancer. Mum decided to fight her diagnosis by doing everything her doctors recommended, and with hope – we all ‘hoped’ and prayed for the best outcome.
For the two months prior to Christmas 2006 mum underwent a treatment program of chemotherapy (Cisplatin and Etoposide), and radiotherapy. She seemed to tolerate both treatments pretty well, and we spent the Christmas and New Year period feeling apprehensive about what might be install with mum’s disease, but also positive about how she was coping. We were still hopeful that her prognosis might be good. Although Kirsty had a better understanding because of her dear friend Kate Carr whom had also been diagonosed with NETs, as a family we did not fully understand what we were dealing with. There was very little information about neuroendocrine cancer available at the time, and the doctors had made it clear they were also a bit in the dark with how to treat the disease.
With the benefit of hindsight and having learnt more about NETs it was also clear to us that mum had also been experiencing some symptoms associated with neuroendocrine tumours – she had complained on occasion of irritable bowel type symptoms, hot flushes, and asthma type breathing which she had been prescribed with ventolin to treat. Misdiagnosis and the fact she had put up with these symptoms because she felt otherwise quite well, meant that by the time she had her diagnosis the cancer had already spread.
In February 2007 mum had a further cycle of Chemo, and then at an appointment with her Oncologist in March she mentioned an issue she was having with her right leg. She was feeling that at times it was very weak, and this along with some tiredness and dizziness, was concerning her. In the past mum had suffered siatic nerve problems and therefore put her leg weakness down to this reoccurring complaint. Nothing was going to stop her from going on a planned girls’ trip to Hong Kong – in April 2007 she left to spend time in one of her favourite cities with the company of some wonderful friends. It was a great trip which distracted her from her treatments, and really gave her a boost of positive energy. The cheerful and full of life Marg had returned – she embraced this trip away doing something she had always loved doing – shopping and hunting down a bargain!! She was in her element!
Unfortunately the joy of this holiday was short lived, and in May 2007 she was finding the leg problem had become worse and had started to get her down. Mum was requiring help at times with standing and walking – and by June after an MRI brain scan we learnt that the problem with the leg in fact suggested an “upper, fairly uncommon motorneurone lesion”. Mum’s cancer was in her brain. We were told that her time left with us was limited. It was a very emotional time for us all. We set up a schedule for help and embarked on making sure someone was always with mum – it was a complete role reversal for Kirsty and I as she had always our carer, our mum.
On the 7th October 2007, almost a year exactly since mum’s initial diagnosis and surgery, mum was readmitted to hospital. The following week on the 15th October mum was transferred to a palliative care hospital, and on the 22nd October, 2007 we all said our goodbyes – she died 2 days after turning 63 years old.
Our beautiful mother taken from us way too soon. Mum had taught us so many lessons in life, but the most important one being that it’s not what you are dealt with in life but the way you deal with it. She had lived a life filled with passion, joy, creativity, determination, acceptance, and love. She had lived a life with hope, and she had taught us to never give up hope. We now hope that there is a cure for Neuroendocrine Cancers, and that early detection of the disease means patients can live with a better quality of life, and a longer life.
