DECISIONS, DECISIONS - and ‘AN UNFORTUNATE DISTRIBUTION OF DISEASE.’
By: Alison Napier
It is ten days since Diagnosis Day and we are back at Perth Royal Infirmary. It is 1pm. Susan walked from her work, I cycled from home.
My - our - Medical Oncology Consultant, Dr Fiona Macleod, meets us in reception. She is taller than I remember and elegantly dressed. In case she does not remember Susan from two years ago I say to her as we go in, ‘And this is still Susan.’ Already I am making no sense. ‘I remember you both well,’ she replies.
She asks what my understanding of my situation is and I rattle off the diagnosis and the lack of viable treatment options and she listens and says that we will unpick what I have said and look at where we want to go next. She is kind. We have her full and uninterrupted attention for over an hour. She must be exhausted but she does not waver.
She acknowledges that the options we have are very limited and offer no significantly improved prognosis, and that this is because of the spread to the brain. The brain is ‘critical’ she said but I do not really know what she means. It is certainly critical to me and I will miss it when it is gone.
Her Option One is Whole Brain Radiotherapy (WBRT). We were immediately surprised as we had done some reputable research already and were aware that most evidence suggested that there was little benefit to be had from this, particularly at this stage. Hiroshima and Nagasaki didn't end well. We also knew that side effects can include (fasten your safety belts, readers):
Headaches. Radiation-induced permanent hair loss and dermatitis, nausea and vomiting. Somnolence (sleeping up to 20 hours a day). Hearing loss. Cerebral edema (fluid build-up). Acute encephalopathy resulting in death of the patient (rare). Nightmares. Decline in memory. Fever. Impaired language skill. Anorexia. Unclear speech. Irritability. Leukoencephalopathy. Radiation necrosis. Poor appetite. Worsening of your old symptoms. (Huh?) Personality changes.
Dr Macleod repeated that there was no guarantee of this making any difference whatsoever. But it might - might - permeate (damage?) my Blood-Brain Barrier sufficiently to allow the chemotherapy drug Carboplatin, her Option Two, to have some impact. That was its positive. Its only positive.
‘Fiona,’ I said, ‘You’re really not selling this very well, are you!’ I was sitting shakily on the edge of my chair and Susan was beside me taking notes.
‘It’s an option,’ she said. ‘We can offer it because you still have 3 months to live. This could add to that. It would start immediately.’
‘And add how much?’ I asked.
‘A few months. Perhaps. It’s hard to be precise.’
I thought about our wedding and how I would need to be pushed into the Registry Office in an Aldi supermarket trolley and spend the ceremony bald and deaf, irritable and half-asleep, scratching my head and slurring my vows, and throwing up all over the Registrar. This was not my vision for my one and only wild and precious marriage.
If I opted for the Whole Brain thing and my brain was successfully punctured then we would start on the chemotherapy drug Carboplatin, while still managing the side effects of the radiotherapy.
Side effects from Carboplatin include (and keep that seatbelt fastened folks):
Low red blood cell count. Decrease in white blood cells. Increased susceptibility to infections. Decrease in the number of platelets in the blood. Nausea. Vomiting. Loss of strength. Kidney problems. Decrease in liver function. Loss of hearing. Diarrhoea. Peripheral neuropathy. Constipation. Rashes and itching. Fever. Alteration in taste. Loss of appetite. Visual disturbances. Flu-like symptoms . Tightness of chest. Difficulty breathing. Bone marrow failure.
All for the extremely slim chance of another few weeks or months of life. Ah yes, life. Other definitions of life are available.
In a gentler parallel world, far away from profit-driven pharmaceutical companies that normalise trauma, it will be possible to make three brain tumours miraculously vanish by gazing deeply into the warm heart of a vibrant sunshine-yellow sunflower, by looking across a whole dazzling endless vista of joyful waving tournesols under the heat of a southern Provencal sky, and yes, I would do that in a blink. Brain-fry with a side of leukaemia-type symptoms? Not so much.
And if the Whole Brain Radiation ‘worked’, and the Chemotherapy ‘worked’, a final type of chemo would be added on called Eribulin. Side effects from Eribulin can include (and you can loosen the seat-belt now as this is going nowhere):
High risk of infection. Breathlessness. Loss of appetite. Numbness in fingers and toes. Headaches. Severe coughing. Feeling or being sick. Constipation or diarrhoea. Hair loss. Pain in different parts of your body. Fever. Weight loss.
These were our three options. At some point I said to Dr Macleod that this must be a horrible part of her job. She, I think, said something like if she could offer a cure for the brain mets then she would retire tomorrow knowing her work was done. She looked really sad. She said that I had a very unfortunate distribution of disease. Susan looked up from her notebook and smiled at the phrase. She repeated it. ‘Write that down,’ I said. ‘We’ll put it on a T-shirt.’
Dr Macleod handed Susan some leaflets. I was staring at my shoes, my bashed and battered North Face hiking shoes, noting that they were marked and worn and faded and wondering if I should get a new pair (although they are very comfortable and their last big hike was on Kefalonia, up the hill through the cypress trees behind Sami in absurd heat, to the ancient castle walls where we sat under an olive tree and ate our picnic to the sound of goats bells and the calls of far-away inter-island ferries) and also knowing that there was perhaps little point in replacing them now.
More was said including a conversation about a DWP form called DS1500 which is provided to patients with under 6 months to live and enables immediate access to swift and high-rate services and benefits. Dr Macleod told us her funny anecdote about being harassed by the DWP because a patient of hers was still going strong 4 years after the issuing of the form. I think we smiled. She will tell that story to all her DS1500 patients and rightly so.
We all stood up. She passed us onto the nurses in the chemo suite for a blood sample, told us to ‘scarper’ after it was done, and a nurse took blood for reasons unknown. Outside, we leant against the wall and looked across at the distant Cairngorms. Susan suggested not cycling so we walked together down the hill and back to the house, in a slow-motion dream, me using the bike for support, waiting patiently at the pedestrian crossings, and reached the flat. At one point I said, apropos of nothing, ‘I love my bike.’ ‘I know you do,’ said Susan.
‘I have a plan,’ I said, as we climbed the stairs to the front door. ‘We will have tea, and toast with butter and honey.’ So we did. Tea is our friend. Sitting side by side on the sofa, two frightened children who have seen the future. Eating our toast.
A decision had to be made by the middle of the following week and we were to let Dr Macleod know. But we both knew that the decision had already been made. A no-brainer. Three days later we met my GP and discussed end of life care at home. She supported our decision and made a referral to the Community Macmillan Nursing Team. I emailed Dr Macleod and explained our plan. She posted me a lovely personal letter of support and said our wedding day was in her diary and she would be thinking of us.
Life is good. We still breathe.
‘Tell me, what else should I have done?
Doesn’t everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?’
[Excerpt from ‘The Summer Day’ by Mary Oliver, 1992]
EDITOR: You can read the first part of Alison's current blogs here.
Read Part 3 here.
Read Part 4 here.