My mum, 65, was diagnosed with lung cancer and brain mets at the end of January. I live in Brisbane, but I flew home to the UK when I heard this news.
Mums initial symptoms were a cough, shortness of breath and weakness on the right side. In the fist week after her diagnosis mums weakness got worse, but she was able to get around with a walker with assistance. We were waiting to hear the official diagnosis and a treatment plan. We were still hopeful at this point.
Mum hated hospital so much she discharged herself against all advice. So me and my two sisters cared for her at home. At the end of that first week, she had a seizure in her arm and was hospitalised. From this point on, her weakness was much worse and she could no longer move her right arm or leg at all. She was bed bound, unable to even get into the bathroom, and we had to help her with all tasks. It was completely overwhelming.
In her next, and turns last, appointment with her oncologist, mum was told over the phone it was stage 4 and there were no treatment options and she has 2-4 months. My sister and I met with the oncologist privately and were told mum likely only had weeks left. I had to turn into a carer/councillor/nurse overnight.
The next few weeks seemed to last an eternity. It felt like living in a nightmare, and each day the nightmare got worse. I didn't sleep, we were on call to help mum at all hours. We had some assistance from carers and a community nurse but mostly we were left alone. It felt like mum had just been left to die.
Mums symptoms got gradually worse, it was deeply traumatising. Symptoms from the lung cancer included breathlessness and anxiety around the breathlessness and she got horrible bed sores which were agonising.
The worse symptoms came from the brain mets though, which were truly horrific, she never regained any movement in her right side. I was in constant fear I would find having a full on seizure or worse. Mum gradually began to forget words, she forgot her pincode for her phone, password to her laptop, couldn't use a TV remote. She got aphasia, which made communicating very challenging. She completely changed personality, her voice changed, and I could not recognise her as my mum. She consistently challenged her caregivers (me and my sisters), asking us to to things all the time, we were in and out of her room every 2 mins. She got so weak she was unable to get to the commode so she had a catheter put in. She was confused about what it was. She was repeating phrases and wanted to be moved constantly every 10 -20 mins (her body position or the bed).
There was no loving moments, no sharing of memories, no nice conversations - nothing. No medical professionals warned us what to expect. We were kept in the dark. I look back now and think if only id known about brain met symptoms before I would have known that this wasn't mum it was just the disease. It would have helped me process things.
During her last week of life, we were noticing changings every day. She was hallucinating, and was in constant distress, agitation and extreme mental anguish. It was so hard to see her writhing around her bed in absolute horrific and constant distress. Mum refused a syringe driver and no medication would really help. She needed constant reassurance. Her terminal agitation lasted a whole week as her body shut down. On her last day, we were unable to wake her, but she was still in continuous distress. It was only then she had a syringe driver put in and she died in the night. There was nothing peaceful about it.
Throughout the whole experience mum was in complete denial about her diagnoses, it happened so fast that there was no time to process it before the brain mets symptoms took hold. She didn't want to die. She lasted 7 weeks from diagnosis.
I am now back in Australia and struggling. I am finding it difficult being around people. I feel like a different person and can't even explain how traumatic the whole experience has been to others. Its hard not having anyone here who shared any part of this horrific experience. I only recently moved to Australia so I don't have a huge support network.
I wanted to share my story, in the hopes of hearing from others who have experienced, or are currently in, a similar situation.
Thanks for reading.
