Lecretia & Matt in Bariloche, Argentina, 2013
Travel is a lot harder than it used to be. Between 2013 and 2014, Lecretia, despite her various cancer treatments, was able to travel to some fairly exotic locales with me – in particular Morocco, Bermuda, USA and Argentina. That’s not to say getting around was ever simple – Lecretia has a lack of movement on her left side which makes walking more difficult than it should be – but in recent weeks that creeping paralysis has become more pronounced. Where once she could lift herself out of a chair, or a car seat, or climb a set of stairs, she now needs assistance for all those things.
This Friday we headed to Tauranga to stay with Lecretia’s family, and boarding a flight now involves a wheelchair from the check-in desk, followed by the use of a disabled passenger lift to get Lecretia on to the plane. There’s a short walk to the seat, and then waiting for the other passengers to disembark at the end of the flight which is not easy when the chemotherapy and accompanying drugs have rendered your bladder as weak as a mouse and as insistent as an alarm clock.
Lecretia is now three days into a new chemotherapy regime of carboplatin, which has about a 20% chance of working but is still worth a shot as it’s one of the last remaining chemotherapy options available to us in New Zealand. We’re currently exploring private and overseas options but there are no obvious next steps – everything is largely experimental long-shots, expensive, or both.
We’re quickly finding out that the late stage chemotherapy options can be nasty. Yesterday Lecretia spent the morning half asleep until she finally collapsed from weakness and nausea. I had a panicked call to Lecretia’s community cancer nurse who listened and gave me some advice to deal with the nausea, but once Lecretia developed a rash we were told to get to hospital so we raced to Tauranga Hospital’s Emergency Department to get it checked out.
I doubt the nurse knew exactly what was going on – but anything unusual like that you have to jump on quickly. It could be an early sign of an infection, which in Lecretia’s weakened state, could be extremely harmful. Thankfully we were put through to see a doctor relatively quickly despite being warned about ‘horrific’ waiting times due to five ambulances arriving immediately before us. Once a bed was found for Lecretia, bloods were taken, fluid given (as the nausea was a suspected result of dehydration) and Lecretia was prodded and examined to see what might be wrong with her.
In the end, the doctor didn’t know either. The rash had subsided, along with Lecretia’s nausea, and the drip had got Lecretia’s hydration back to where it needed to be. So we were sent on our way.
Because of the way the brain works – just how this tumour might affect Lecretia is a mystery – so anything unusual needs to be treated with care. A millimetre of growth in the wrong direction could cause blindness, or the loss of the ability to speak, or loss of movement, or even death. More likely she’ll experience a gradual loss of function over a long period of time. And whatever happens, it’s likely that there’ll be not much that a doctor can do except make her comfortable with whatever the cancer throws at her.
Until then, we just have to take things a day at a time. Last night after being discharged we went straight from the hospital to one of Tauranga’s better restaurants after having had to push the reservation back twice. Lecretia still had a swab taped to her arm to stem the bleeding from where her fluid line went in. We had a three-course dinner with some of her closest family and chatted late into the night.
What else can you do?
Enjoy your time in Tauranga with family
Agree, what else can you do ….close family, good food and talking late into the night. Well done on making the best that you could on the day and thank you for sharing.
That must have been very difficult to write as you are documenting a decline, however incremental. Respect and love to you both.
Reading your blog here in the UK Bob and I would like to send all our love to you both and, of course, the family. What can you do-that says it all and rest assured you are all doing the best for Lecretia. She is an amazing lady as are all of you and we are privileged to have met you. Thinking of you each day.xx
It has brought me to tears because of your tenacity and your courage to live with dignity. In our law school we have had moot topics on the sensitive issues on dying with dignity intact. I am never gonna be the same reading your daily,moments of struggles… I truly hope your success with the application in court. despite my innate of wish of your gracious existence to continue.. you have brought changes in my life and those around me. Life is so precious it has to be lived through dignified grace. Thank you
I have started this with no idea of what to write. This must be so incredibly hard for you. I saw my Mum persuaded by doctors to have radiotherapy at the age of 77 so we could have “another 6 months” well that was bullshit and she ended up passing in an undignified fashion in 6 weeks. I hope beyond hope that you are able to have the final days that you want. There must be a better way.
God bless and love you.
Thank you for sharing Matt. Your love and compassion shines through. Thinking of you and Lecretia.
I hope Lecretia is feeling better now. Glad you could have a nice dinner out. Fingers crossed the chemo helps!!
I am behind you 100%. I have a father suffering from Parkinsons who has been in my care for 12 years and I lost my mother three years ago to lung disease, further I have watched my partner endure successfully treatment for cancer of the larynx, not to say that’s entirely over. Losing one’s dignity is horrific, suffering insurmountable pain is unbearable for the sufferer and for their loved ones. I believe my mother’s death was assisted within ACH, what I didn’t know was that with the drugs administered not only would it make her more comfortable but she would no longer be able to communicate therefore a lot remained unexpectedly unsaid, information sadly lacking from ACH!
My mother would support you over and again in your quest and as my father’s disease progresses I am damn sure he would also support you as he continues to lose basic functions and feels humiliated by that.
I hope you are successful in your quest through the court system. You deserve this right, you deserve to preserve your dignity and quality of life. Thank you for your strength and courage, I wish you nothing but the best.
From Canada: Our thoughts go out to all of you fighting the fight. To everyone who has made this decision & to those who support you, Bless you. It is our fundamental right to choose. Love & Hugs,
What an awesome life partner you are to Lecretia, Matt. So glad she has someone like you.