Surveilled & surrounded by linear accelerator Rongo mã Tãne March 2022
You can breathe and swallow but don’t move
“No … no … don’t try to help … we’ll move you”. The 2 radiation technicians focus intently on the alignment of laser lines with the 4 tiny radiotherapy tatoos on my chest. Everything needs to be millimetre perfect. … important measurements are discussed, identified and agreed. A couple more minor tugs and maneuvers and my position is declared to be “perfect”. Knees are nicely supported, arms and hands are immobilized well behind my head. My bald scalp sinks into & sticks to the vinyl donut beneath, forcing my gaze upwards towards the beautiful koru pattern on the ceiling.
“What is this big gel pad called”, I ask.
“You are full of questions today”, she replies as my warm chest is shocked by having the large cold gel sheet applied, smoothed to the contours of my chest and taped into position. “It’s called a bolus”.
“Why do they call this a bolus?”. I just can’t help myself wanting to know how things work. This must be annoying for technicians who churn through dozens of patients every day, but these two take it in their stride.
“This is to fool Rongo (my linear accelerator) into delivering radiation more closely to your skin, which is where your Oncologist wants it … there are lots of different types of boluses … this one is called super-flab”, she said, smile lines intensifying around the edge of her mask.
The irony of that statement wasn’t lost on me. “Oh, very appropriate for me then”, I quipped, joining in the banter. That was both funny & embarrassing … super-flab … heck, that’s a bit close-to-home
“OK Marie, breathe away quietly”. As they retreat inside their lead-lined viewing room there is a firm parting instruction, “You can breathe. You can swallow … but DON’T MOVE … not even 1 millimetre. See you in about 6 minutes”. Feeling sufficiently warned, I concentrate on relaxing every muscle in my body and breathing quietly using my diaphragm, not my chest. Yes, not many millimetres chest rise … good … I celebrate my ability to relax and completely surrender to the machine.
My view beyond Rongo on the ceiling, March 2022
Join the club
My radiotherapy club uniform, March 2022
“OK, that’s all for today”. A cheerful voice emerges from the protected control area. “I’ve left a RAT test by your bag for you to do at home before your appointment next Monday, OK? … Your appointment is too early for anyone to be downstairs when you arrive. I put your timetable for next week there too”.
Yes, it’s all routine now. I’ve done my week one apprenticeship as a radiotherapy patient & I am now trusted to arrive slightly early for each appointment and to perform my own eye-watering RAT tests before leaving home on Mondays and Thursdays.
Once Rongo & the 2 scanners resume their resting positions, I pull myself upright, slip into my gown and jandals & head back out to the waiting room. Radiotherapy patients are like club members. We’ve all been issued with one green patient gown that we are responsible to wash, and a cream-coloured cloth bag to put our belongings into. I briefly sit with 3 or 4 others as I check next week’s schedule. “How many is this for you?”, someone asks …. “How are you finding it … you OK?” … “Looks like you had chemo already”. My bald head is a dead giveaway to that. All comforting and supportive club chat. I find it surprising that I haven’t yet met anyone else who is bald following chemo in the waiting room. The all seem to be having radiotherapy only. As I walk back to the car I spot a white cloth bag clutched to the chest of someone heading towards their own cell-damaging dance with one of the 4 linear accelerators upstairs. There’s an unspoken sense of solidarity as we acknowledge each other in passing.
Click on “The Gift” below to read about the gifts Marie has identified…
Dancing with the machine – the gifts.
I wasn’t expecting to start radiation treatment until I had finished my 6 sessions of chemotherapy sometime in May. Unfortunately the Oncology team had to cancel all of the 5 remaining doses after my kidneys, heart and gut took such a huge hit with the first dose on 4th January. I knew I wouldn’t have survived 5 more infusions of those vicious poisons, but I had pinned my hopes on it to eradicate any remaining triple negative cancer cells. Radiotherapy is not effective for triple negative breast cancer. This radiotherapy is a follow-up for the first malignancy found in September; the grade 1 infiltrating ductal carcinoma, for which I had a wide excision. This is now very much a journey of faith and hope for me. I may not know how to come out of this on top by myself, but I believe that God has gone into my future and knows what’s coming. He can heal me if that is in His plan for my life.
Clinical trial comparing chest protection against radiation burns March 2022
Gift. I don’t under-estimate how fortunate I am to live close to the Regional Cancer Centre in Palmerston North. I feel vulnerable now that chemotherapy has been withdrawn. I am consequently committed to getting maximum gains from radiotherapy. I have enrolled in a nation-wide clinical trial comparing the effectiveness of 2 products in protecting skin from radiation burns. Half of the irradiated area on my chest is covered with a clear Mepitil film. I apply a flexible silicone cream dressing to the other half every morning and night. My research nurse takes photos and meets with me each week to monitor changes in skin condition and sensation during my 3-week course of radiotherapy. She will continue on with me for a further 4 weeks. I guess it’s a bit like having trainer wheels when you are learning to ride a bike. I don’t mind that … am just very grateful for the extra 4 weeks of support and surveillance, especially after the awful chemotherapy.
I understand what this feels like. March 2022
Gift. The fact that I can write this blog and authentically share my experiences, joys and tears with you is a gift. I have a story to tell. In my vulnerability I find that I am developing a new sense of security and confidence in my own skin which is a welcome development. And who knows, I may be able to support or help someone else going through something similar now or in the future. I’m sure we will look back and appreciate that all of these experiences had a purpose.
I received a letter in the mail today from my Radiation Oncologist Dorothy outlining the things I might reasonably expect from the ongoing effects of radiation treatment:
Don’t feel sorry for me because I am heading for a long-term purpose-driven, love and joy-filled life. Remember that precious metals get their strength from being heated and put under pressure. There is a saying that a woman is like a tea bag …. you don’t know how strong it is until it is put in hot water! This is a time of great personal strengthening for me, which is a gift to be treasured. Joyce Myer, a well-known Christian teacher writes that we must understand that no other human being on the face of the earth can develop our potential for us. We must each discover our own God-given gifts and talents, what we are truly capable of, and then put ourselves to the task of developing these gifts, talents and capabilities to their fullest extent.
Jeremiah 29: 11-13 in The New American Standard translation of the Bible says, “For I know the plans I have for you, plans for welfare and not for calamity to give you a future and a hope. Then you will call upon Me and come and pray to Me, and I will listen to you. And you will seek Me and find me, when you search for Me with all your heart”. What an incredible gift from God.
Hi Marie you write so eloquently. I feel like I am right there with you standing in the room and watching the rays go in. In my mind I see beautifully colored rays headed to give you healing.
I do need to take a very positive message from you. I have just recieved a cpap machine and need to look at it with joy not fear. For me it is absolutely the gift of life (apparently an oxygen level of 83% is not great while I’m sleeping). I shall look upon Henry (my name for my machine) as my gift from God and not the uncomfortable piece of machinery sent to make my life difficult at night. Thank you for reminding me how blessed I truly are.
Upwards and onwards for us both.
A positive attitude is always going to allow you to overcome difficulties Wendy. It may not bring a “cure” but it will help us identify good things every single day, no matter what the medical outcome is
We will keep praying for you each morning
Thanks Peter. God is unmatched in His power to protect us. I am really grateful for your prayer support.
Well, the technicians may well see many patience daily but they are not you with your enquiring mind. Fascinating reading your story beautifully written. Thanks Marie. Love you xx
Love you too Moyra. Yes, that’s me, always wanting to learn more
Such a descriptive piece of writing. We are so lucky to have Rongos. Great way to look at it, dancing with a machine.
I am feeling more confident with Rongo every day. I found myself silently welcoming & talking to him yesterday & today. An incredibly versatile & intriguing machine
Love the analogy, Marie, but so glad we’re not dancing with a machine in our journey with the Creator of the Universe!
“Arise, my darling! Come quickly, my beloved. Come and be the graceful gazelle with me. Come be like a dancing deer with me. We will dance in the high places of the sky, yes, on the mountains of fragrant spice. Forever we shall be united as one!” Song of Songs 8:14 (TPT)
Isn’t that so beautiful Barb. My limited human mind is mostly earth-bound … the heaven described & eternal close relationship with God is mind-boggling. With this in mind, I’m not worried about how long I live this life because it is only a small part of so much more. It’s a win-win situation
Thanks for soldiering on Marie. You may never know how much your example is an inspiration – a gift- to us all. May God richly bless you and keep you both.
Thanks Ann. Being in difficult situations is good for us … gaining insight into aspects of faith, priorities, people & other things that are absolutes. We learn that we cannot get through by ourselves and gain a much greater appreciation of our purpose in this life. I am very grateful for this exerience.
Thank you for your writing Marie, I so much appreciate your depth of honesty and authenticity. We’re praying for you through all of this, that you continue to know your Father’s peace and care every step of the way 💗
Thanks Lynn. I really appreciate your love & support through this journey. Just about to spit out the other end of the 8-month diagnostic & treatment journey
Dear Marie, I have just caught up on all your blogs. So very interesting and inspiring to read your journey and the gifts you are finding on the way. I have just shared your website with a very dear friend who has just been diagnosed with cancer so I know she too will be really blessed and encouraged as she reads your blogs. So great to see you and Jim making the most of every opportunity to get away in your Motorhome and enjoy the walking and biking you can get done. Many blessings and love to you
Thanks Mary. I’m glad you are enjoying my blogs. I try to make them as authentic as possible, hoping that they might be an encouragement or source of information for those reading. Sending blessing and love to you