This piece was submitted to Final Chapters, as part of Dying Matters Awareness Week in March 2012. I include it here, today, on the first anniversary of Mom's death, in tribute to Vivienne Mackinlay, wife, mother, granny, friend. Gone, but never forgotten.
Mom was dead before she was even diagnosed. The Russian roulette of small cell lung cancer had held a gun against her head, and pulled the trigger. By the time she knew what it was, and treatment started, she was already so ill we knew there was no hope. How do we go from here to find inspiration and a positive end to this story?
Mom’s story still stuns me when I tell people. Mom was sixty-six years old, enjoying her retirement. She was full of life and very active. A smoker in a past life, she had given up twelve years ago, but the damage had already been done. She and Dad were looking forward to spending Christmas with my brother and his young children in Australia. We put Mom’s feeling of being unwell down to her excitement and anxiety at making the long journey to Perth. Two days after she arrived in Australia, Mom collapsed and was taken to hospital. Two days after that, several blood tests, x-rays and a CT scan later, we had the dreaded diagnosis. I remember the feeling with numbness. The prognosis was six to eight months. That’s no time at all to prepare your self for dying. Our lives changed on that day.
Picture the scene
Britain was facing an unprecedented snowy winter. It started at the end of November and within days the airports were struggling. Mom was very anxious that their flight to Australia would be cancelled, so when she fell down the stairs, we all thought she was being a ‘flopsy bunny’. She fell three times in the days before her trip, but the GP was reluctant to stop her flying. So in spite of the weather, and with two black eyes, Mom and Dad set off on their trip to Perth.
Looking back now, I don't know how she did it, but within days of their arrival Mom felt so awful that blood tests were ordered and she was admitted to hospital with low sodium. On its own, this is potentially life threatening, but I had already been warned that this could be a sign of something really nasty. And it turned out to be extensive small cell lung cancer with paraneoplastic symptoms, such as low sodium.
Get your ducks in a row
That's what Mom always said. She was a wise woman, right to the end. And her clarity and comprehension of her situation helped us to help her. My wonderful husband was pro-active in getting Mom to decide where she wanted to die, and the GP helped us achieve this. I believe that this was absolutely the right way for Mom to go, but it took our family to raise the question with the doctor and push for the help we needed. But, it's still a taboo subject to ask someone how they want to die. It takes a lot of courage on both sides, and it's a topic I passionately believe in. I know it's a difficult conversation to initiate, and I wish I hadn't had to do it for Mom. I hope it doesn't happen to you, but if it does happen, be brave. It does make a difference, and getting things in order is very important for dying in peace.
Talking about grief
If I'm brutally honest about my grief, it's that I started grieving for Mom when we found out she was ill. I discovered the power of my mind, being able to separate myself from the horror of her situation, and still carry on with my own life. Going to work, being a wife, lover and friend. This detachment was my coping mechanism, my way of making sense of everything and ensuring that Mom and Dad had the very best treatment and support, whilst preparing for life without her.
Grief is a powerful emotion, even when you know it's coming, it punches you in the head, shakes you about and puts you down in another place. The straight lines of my ordered life were swept aside, a chaotic mess with no obvious way out.
The doctors say that they won't treat grief with drugs, as in a significant bereavement it isn't always possible to know what is grief and what is clinical depression. So they play a waiting game. And in most cases it turns out OK.
I don't know exactly when things started to get better, but it was a slow process and now seven months since Mom died, I know I'm not grieving.
It's a different story for Dad though. His grief seems more intense now than it did at the time. His health is suffering, too. I think he may have shrunk a little, or perhaps it's just that I'm standing a little taller. I’m more grown up. More responsible. I don't want to, but someone has to and I have a duty of care to ensure that he is safe, well and not vulnerable. They don't tell you this when your Mum dies. They don't tell you what to do about Dad.
The positive power of people
Isn't it funny how some people have such positive insight? Throughout our experience of Mom's illness I have been amazed, delighted and encouraged by strangers. Sometimes, it's easier to tell a stranger how you really feel, perhaps we sub-consciously choose the people we talk to.
I met someone recently who asked after Mom and was saddened to hear that she had died. This (almost) stranger told me that the loss of a parent is such a significant event that it is quite often life changing. She's right. I could never have gone back to my old job and sat in the same office with the people I never told about Mom's illness. I had to move on, look for new challenges, like a re-birth she said. Wow, what an important fifteen minutes that was.
Make time
I never realised how much I could do before Mom got ill. My comfortable life was snatched from under my feet and overnight, my time was not my own. And yet, I still had to go to work, do experiments, teach, be nice to people, be nice to my husband! And believe me, there were days when I was exasperated with people around me, days when I wanted to yell at them 'Don't you know my mother is dying of cancer?'
One day I burst into tears as I was driving to work, and thought 'This is ridiculous, you need to get some counseling!'. To which I answered 'I would, but I don't have time for counseling, now pull yourself together'.
The last year has made me think about priorities. There are clearly some things that are more important than others, we just have to keep a clear head, focus, and make a list! But above all, and I believe strongly in this, make time for loved ones. Its no good seeing somebody once a year at Christmas and presenting them with an extravagant gift that they don't want. Rather, make time during the year for a visit or a phone call. Keep in touch. None of us know when it will be too late.
Let’s talk about dying
I have been looking at cancer blogs and forums and have noticed something quite disappointing. They are filled (quite rightly) with inspirational survivor stories and battle cries, but are lacking in discussions on death and dying.
When I first started talking and writing about Mom's death from cancer I was amazed at how many people wanted to talk to me. Many had questions they had been too afraid to ask, too afraid of the answers. I had encouraging feedback too from a letter I published in the local newspaper, in praise of local end of life care services in our area.
I set about writing a blog, to document my own thoughts and to provide a forum for other families. The thing is, we still don't like to talk about death. And we sure as heck don't like to think about our own mortality. Cancer is a different disease for everyone but the one thing that all cancer patients have in common is confronting their mortality. And that is devastating.
So let's talk about dying, it helps us prepare and it can ease the pain of bereavement. Whilst there are incredible success stories in cancer treatment, many people still die from cancer. It would be wrong to avoid talking about death in order to not upset those brave and hopeful people going through treatment, but for many people there will come a time when the brave thing to do is to talk about dying.
Mom’s angels
Mom was not ready to die. Her type of lung cancer was caused by years of smoking as a young woman, growing up in the 50s and 60s, when smoking was considered stylish and cosmopolitan.
Mom's cancer took her life in nine short months. These were desperate times for us, but Mom did come to terms with her terminal illness. And because of that we were able to plan for her death. Mom opted to die at home and we were supported by several agencies and wonderful people, who we called 'Mom's angels'. Mom signed a do not attempt resuscitation order under her GP's guidance. The District Nurse team provided a hospital bed, commode, nursing and caring skills at home. It was explained to us the options for increasing Mom's pain relief as her death approached. This included the use of a syringe driver, simply an injection of pain relief given over 12 or 24 hours. Mom didn't want this and it was never used.
Mom was helped by an incredible hypnotherapist and towards the end of her life, she was clear about her wishes, wrote letters to everyone and planned her funeral. She was also calm and pain free. I had five beautiful weeks with Mom at the end of her life, so precious, and I am so grateful for that opportunity.
On the day Mom died, she had said her goodbyes and we had all given permission for her to go. I don't think she knew how bad her disease had become, but the cancer had grown out of her back, she had lost the use of her right arm and she could hardly see. She was conscious and could hear us but couldn't speak. Her clinical team wanted to give her pain relief through the syringe driver. Mom indicated NO! to us and died quietly within the hour.
Afterwards, we picked flowers from her garden and laid them on her body.
The point is that Mom confronted her fear of dying. And through the support of her GP and District Nursing team and hypnotherapy, Mom was a delight and a pleasure to care for. She enriched our lives. I urge families to ask for help. There is another way, and it can be beautiful and pain-free and dignified.
Time to say goodbye
I know that Mom hated her illness and was so frightened of her diagnosis. But as the months went on and Mom came to accept her situation, I felt so privileged to have the time together. Of course, nothing can ease the pain of bereavement but Mom's death was uncomplicated and peaceful, at home. We had said everything we needed to say.
For more information and support to talk about dying, see Dying Matters.