Freedom

“I thought you had a couple of ablations to sort your crazy heart rhythms out”, my surgeon said as his fingers gently probed around my recently implanted defibrillator. “They didn’t think about putting it on the other side?”  Mr Daynes had asked me to consider having an equalizing mammoplasty at my last surgical appointment & I had decided that yes, I would. But a lot had changed since that appointment. In September 2023 my “crazy arrhythmias” necessitated the implanting of a cardiac defibrillator / pacemaker in my upper left chest wall, just where he needed to create the long incision to reduce the size of my remaining left breast.

“I don’t ever want to see this when I’m doing it”, he emphasized, nudging the generator box. “The last thing you need is an infection going down that lead into your heart if I touch it during surgery … I’m not sure we should even do this …. look Marie, you’ve had a hell of a health journey these last 10 years … I took half your large bowel out with that cancer in 2013 … and then 2 ablations and G _ _ knows how many cardioversions … look at that trauma on your leg … and 2 breast cancers … that awful chemotherapy experience  … radiotherapy … all that pacemaker/defibrillator stuff … your husband with Alzheimer’s. And now you’re finally good with your heart rhythm and feeling healthy.” He took my hand and our eyes met. “I think you should just go and be healthy and enjoy your retirement. Let’s not do this. I’m going to hand you over to your GP now.” And with that my breast cancer surgical journey is done.

“I’m going to give you an exemption”

I will have 24/7 cardiac monitoring & surveillance for the rest of my life via my Medtronic home monitor. I keep an eye
on my cardiac rhythms with my Apple watch.

Waka Kotahi (New Zealand Land Transport Agency) regulations are very clear that a person who has an implanted cardiac defibrillator should not drive for 6 months … and that’s what my medical certificate on discharge said too; “Marie must not drive for at least 6 months”. I explained in my last blog how difficult this has been, especially with Jim’s increasing health and support needs.  How I longed for March 19^th 2024 to arrive, when I could finally drive. I did everything I could to stay well and collected proof of a stable rhythm since discharge. I rode almost 500km on my eBike getting groceries and doing regular chores without any problems. I recorded the occasional episode of atrial fibrillation on my Apple watch, but my Medtronic home monitoring device relayed evidence daily to cardiac physiologists in Wellington revealing stable sinus rhythm. I was energetic and felt truly well for the first time in years, free from troublesome cardiac arrhythmias. This ban seemed so stupid and pointless. I spent hours formulating convincing arguments in my head that I could present to my cardiologist on the 29^th January to allow me to drive … 7 weeks early.

I arrived at my his office wearing my cycling clothes and carrying my helmet & gloves, ready to explain that I had ridden over 500km on my bike, had not experienced any arrhythmias and felt really well.

“Dr Ramadan, would you mind just listening to me for 2 or 3 minutes please”, I asked after initial pleasantries. “I think I have a solid case to present to you …. both physically and emotionally for allowing me to drive …. because ….”

“Marie, I am going to give you an exemption”, he interrupted with a very calm and empathetic tone.

“ … because I am absolutely fine and I am more fit and energetic than I ….”

“Marie, I am going to give you an exemption”, he repeated, beaming broadly. “I can see from your home monitoring data to Wellington that you are in a stable cardiac condition and ….”

I burst out sobbing, head in hands …. “Oh thank you, thank you, thank you” ….. I sobbed and sobbed, shoulders heaving, completely overwhelmed with relief and gratitude.

“No! Marie, don’t cry!”, he beseeched, “Don’t cry! I thought you would be happy that I am allowing you to drive again”.

“Oh I am, I am, I am so happy”, I sobbed, unable to contain this uncharacteristic outburst of emotion. “I am, thank you so much….”

With the sweep of his pen a letter was written giving me permission to return to driving on the 29^th January 2024. One week later Jim and I set off in our motorhome, along with my brother and sister-in-law in their caravan, for a fabulous 16-day trip around the East Coast of the North Island. It was a wonderful holiday and celebration, made all the better by the joy of that wonderful 7-week reprieve. I followed my surgeon’s advice and relished the luxury of driving our motorhome, being healthy and enjoying being retired!

Jim on his new mobility scooter – March 2024

My husband Jim’s decreasing mobility and increasing care needs are now presenting significant challenges for us. I am so glad to be free from debilitating cardiac arrhythmias and breast cancer at the moment. This helps me to more effectively support him through his Alzheimer’s and Lewy Body Dementia journey. We purchased a second-hand “travel” mobility scooter last week. It is small enough for me to lift in and out of the car by myself and to fit on the back of our motorhome. During the last week we have enjoyed scooting alongside the Manawatu River and Esplanade, around the Rural Games in Palmerston North watching the National Timber Sports (wood chopping), fencing competitions and dog trials. Jim loved being back in the farming scene. We’ve browsed and issued books from the library,  collected things we’ve needed from Mitre 10 hardware store, and enjoyed scooting to our local bar/restaurant for  an evening meal. What a joy and blessing it is for both Jim and I to be more independent and mobile.

The Gift

My last dose of Zolidronic acid, Palmerston North, December 2023

Almost immediately after biopsy and diagnosis of the first invasive ductal carcinoma in September 2021, I felt God saying to me that this journey was to be a gift. I was surprised but chose to accept what He had said and look for whatever these gifts were going to be. Several days after the initial lumpectomy surgery my Surgeon and Nurse Practitioner broke the news that one of the sentinel nodes biopsied from that surgery was packed full with Triple Negative Breast Cancer. This was very unexpected for them too. It was very bad news and would require urgent radical mastectomy, chemotherapy and radiotherapy. It was Grade 3 and could be life-limiting. I had never faced an existential crisis such as this before. I wasn’t sure how this could even remotely be considered a gift. “God … what are You doing?”

Waiting for my daily radiotherapy session, February 2022

I’ve been reflecting back on the gifts of this two-and-a-half-year cancer journey. The 2 unexpected diagnoses in September 2021 caught me completely by surprise. Suddenly I felt incredibly vulnerable, realizing that I could be dead within the next 3-5 years. Psalm 139 verse 16 in my Bible says, “You saw who you created me to be before I became me. Before I’d even seen the light of day the number of days You planned for me were already recorded in Your book” (The Passion translation).  But I didn’t realise my days were to be cut so short. Who exactly did God create me to be? Was I doing whatever He planned and designed me to be? How would I know that? I had never specifically looked for “gifts” in my everyday circumstances before. Suddenly I felt thrust into a much-bigger-than-me experience. But now I can see that this experience has changed and enhanced my life. It has truly been a gift.

• When I had no hair and looked terrible, I learned not to worry about what people think; put a smile on your face and be friendly. Say what you really think and be genuine.
• I began looking for and noticing the beauty in my surroundings and in the people I was with.
• I imagined and then began feeling the wrap-around love of God with me every single day and I talked to Him about everything. I heard love in His voice and warm presence of the Holy Spirit.
• I read the Bible voraciously, looking for whatever He wanted to show me. It was and is always so encouraging, affirming and life-giving. I am reading and believing the whole Bible now, not just cherry-picking nice or familiar bits.
• I am much more likely to consciously imagine what circumstances might be like for others and reach out to offer help and support, having received so much myself.
• I am more willing to try new things and not worry about being amazingly knowledgeable or competent. I will be a success just by participating and enjoying.
• I am discovering the incredible life-giving power of gratitude.
• I can see God in my suffering and discomfort. He is growing me, not punishing me.
• I realise that my situation is a win-win. I win if I survive and get to become more of the person God made me to be; to embrace and love others. I win if I die because I will be forever healed and free

Enjoying being healthy and retired with husband Jim, February 2024

It feels surreal that my 6-monthly surgical appointments are all done and I am emerging from this journey that has presented so many life-changing gifts. Thanks to regular infusions of Zolidronic acid my bone density has significantly improved, reducing my risk of future bone metastases. I will continue to have annual mammograms and oncology follow-ups plus another 3 years of regular aromatase inhibitors to reduce the amount of oestrogen produced by my body. This will help to prevent recurrence of breast cancer. Now over 2 years on from the trauma of the diagnosis of both breast cancers, painful & disfiguring surgery, chemotherapy, radiotherapy, numerous appointments, investigations, follow-ups, and cardiac crisis I am emerging strong and grateful.