In hospital after first chemo for fluid & electrolyte replacement – January 2022
“You’ve had a torrid time”. My Medical Oncologist reacted in an affirming manner as I plonked myself down next to her desk. “We’re not doing chemo”, she said.
“I’m OK with that” I responded wearily. The diarrheoa that had hospitalized me a week earlier had continued and I was exhausted. I had trudged out to the car that morning light-headed and with legs that felt like rubber, wondering how I could manage chemo again the following day. I knew that I didn’t have the reserves to receive another poisonous cocktail, starting from a position of such weakness.
“We are not doing chemo”, she repeated.
I had expected her to say that. I was stressed and unwell. I anticipated having to delay for a week before having the second infusion, giving my body time to recover. It was a relief to hear her say we wouldn’t be doing chemo the following day.
“Are you saying that I am not having chemo tomorrow? Or are you saying I am not going to have any more chemo?” I just wanted to make sure I understood what she meant.
“You are not going to have any more chemo”.
Just in that instant my beautiful caring Oncologist may as well have said, “We’re just going to let you die”. My heart froze and thoughts raced as I blurted out, “But isn’t chemotherapy the only thing I have left for Triple Negative Breast Cancer?” (TNBC). Everything I had read emphasized that surgery and chemotherapy are the only effective treatments. TNBC is aggressive and mopping up any potentially migrating cells with chemotherapy enhances long-term survival.
“I understand your concern Marie. You were very sick when you were in hospital last week and your body is still struggling. You know that. It would be irresponsible of me to continue, knowing that the effects of chemotherapy are cumulative and your kidneys have been injured. Your heart rate is not controlled. We want to kill the cancer cells not you” Significant dehydration had aggravated my pre-existing cardiac arrhythmias, my blood electrolytes had not yet normalised and the ongoing nature of the diarrhoea, 3 weeks after administration of chemo, had introduced an element of doubt in her mind. “I’m going to order a CT scan to rule out any other cause”.
“Do you think I might have another bowel cancer? My original bowel cancer in 2014 manifested like this, with significant diarrhoea”. That was the first thing that I thought of.
“Let’s just get the CT and see. You are going to have radiotherapy under the armpit where the positive lymph nodes were removed from. That should provide some cover there”.
As you can imagine, this was not what I wanted to hear. Disappointing … scary … I felt incredibly alone and vulnerable in that moment. I needed God to show up.
What else is hiding?
Preparing for CT scan February 2022
How could a CT scan possibly capture all that information so quickly? I turned up in the Medical Imaging department at 9.30 this morning expecting to be there for quite a while. My Oncologist had ordered a CT of chest, abdomen and pelvis … casting the net a little further afield, looking for any potential causes of my diarrhoea, shortness of breath and consistently elevated heart rate.
The staff were kind and attentive as I perched on the large plastic-covered chair. “I am not used to seeing you like this Marie Henderson. You don’t have any hair”. He was stating the obvious! My nurse looked familiar to me … his face crumpled in a huge smile and body language was that of a friend glad to be catching up. It turned out I was his nursing lecturer when he first demonstrated competence as an Internationally Qualified Nurse in our Simulation Lab at UCOL in 2012. “You were my favourite lecturer. I am sorry I am a little nervous”. Unfortunately his cannula insertion was unsuccessful and he called his equally friendly colleague over. Scrubbing my arm furiously with an alcohol prep swab, her face was a study of concentration. “Do you always have this much trouble getting a line in?” The third cannulation was successful and I soon had both nurses recalling their experiences with me at UCOL 10 years ago! Gosh … a visit down memory lane. One fetched a big tumbler of water. “Try to drink as much as you can … it’ll help with your scan”.
“Breathe in … hold your breath”. The CT scanner whirred ever-faster and soon my body was being propelled through the noisy donut. “Breathe away. Contrast going in now”. I’ve had CT scans with intravenous contrast before so I knew I wasn’t wetting my pants as the familiar warm feeling crept up my neck, across my forehead, down into my feet and fingertips and throughout my pelvis. It is a bit like peeing in your wetsuit when you are scuba diving in a very cold ocean … that insidious creep of warmth. “Breathe in … hold your breath”. More whizzing and gliding, retracing the initial move. “Breathe away. That’s it. All done, thank you”.
I was amazed at how quick it was. Really? How could my chest, abdomen and pelvis possibly have revealed their hidden secrets during those two brief passes through the CT scanner? Waiting for the results will not be so brief, unfortunately. I am becoming practiced at waiting. Waiting for appointments … waiting for scans and tests … waiting to meet key clinicians … waiting for team meetings and decisions to be made … waiting for surgery …. waiting for recovery … waiting for medications to work or side effects to occur … waiting to discover God’s gifts in this ever-changing, challenging journey.
In a previous blog I stated that in my vulnerability I am feeling more secure. That was then … I have to admit that the withdrawal of chemotherapy and wider search for malignancies is challenging my equilibrium at the moment. I was counting on my chemotherapy as a proven strategy to squash any remnants of TNBC. Having said that, though, I am incredibly grateful that my Medical Oncologist is actively pursuing anything else that could potentially be lurking, waiting to wreak havoc. I am also amazed at how many ex-UCOL students I am being cared for, all saying such beautiful, encouraging things. One thing I am certain about; this journey is a gift. No matter how vulnerable I feel, I am going to face whatever comes with gratitude and faith in the Gift-giver.
Follow the link below to read about the gifts Marie has identified through this…
It took several days before I was able to process and accept my Medical Oncologist’s decision to discontinue chemotherapy. I have read widely about the limited options to treat Triple Negative Breast Cancer (TNBC) and have steeled myself to put up with whatever discomfort it will take to give me the best chance of long-term survival. The withholding of chemotherapy felt like I had been cut free from my lifeline of hope.
At the end of each day as I relax and let my mind focus on the individual events and people that have touched my life, the gifts that God pours out on me become so obvious. I have always acknowledged the words in Philippians 4:6-8 in the Bible as being a great strategy for living a really fulfilling life. But these words have never been an absolute necessity for me until now. I love the way this strategy is expressed in the Passion translation. Think of my situation as you read, and you will see why I am wanting to live this way.
Speaking at GNV rally February 2022
v 6. “Don’t be pulled in different directions or worried about a thing. Be saturated in prayer throughout each day, offering your faith-filled requests before God with overflowing gratitude. Tell Him every detail of your life V 7. Then His peace which transcends human understanding will guard your heart and mind through Christ Jesus.
V 8. Keep your thoughts continually fixed on all that is authentic and real, honorable and admirable, beautiful and respectful, pure and holy, merciful and kind, and fasten your thoughts on every glorious work of God; praising Him always”
It would be so easy to allow panic and the feeling of extreme vulnerability dictate how I respond and what I allow myself to think about at the moment. I just can’t afford to allow fear to take a grip of me, and I don’t need to. There are so many aspects of this experience and journey that I cannot control, but I can control what I think about. I was gifted the opportunity of sharing this aspect of my cancer journey with a beautiful bunch of ‘Good News Vanners’ at our bi-monthly weekend rally at Rangiotu last weekend. The response to this bald, single-breasted old grey-head sharing her story was really beautiful; warm, accepting and appreciative. I was nervous about telling it like it really is, but I think my honesty and authenticity helped. The opportunity to share like this was a gift. I could see that my story positively impacted the lives of others. In my vulnerability, I felt stronger.
Relaxing between bouts of diarhoea January 2022
Our motorhome is such a gift. Between the many hospital appointments Jim & I are able to get away for days or weeks at a time, relax & enjoy our beautiful country. Living alongside ongoing diarrhoea is a challenge, but our eBikes have been a real blessing. We can mostly get out and explore the local bike trails and towns for an hour or two in between the bathroom calling. It feels great to be “normal” and not be defined by a bowel that is very attention-seeking or by being a bald cancer patient. When I am out there having fun it feels like such a gift, being immersed in nature, gliding along effortlessly on assist level 1 or 2, sometimes easing past people with ‘real’ bikes slogging up hills. Yes, that has got to be one of the highlights … not worrying about upcoming hills, just feeling the joy of cruising up at 18km/hr or whatever it is, hardly a drop of sweat or effort.
Another really unexpected gift has been the validation of my professional impact on nursing students and others. My career was really important to me. I wanted to do a really good job as a nurse and latterly as a nurse-lecturer. The most important thing to me was to be caring. It was a thrill to meet the two internationally qualified nurses yesterday who seems so pleased to see me 10 years after their experience at UCOL, remembering me as a really caring lecturer. I had some emotional roller-coaster rides during my almost 48-year career, as we all do, and it is very healing and affirming to be remembered in that way. There is a Maori saying, “He tangata, he tangata, he tangata … it is people, it is people, it is people”. We will not be remembered for how much money, beautiful houses or possessions we had, but by our love. The greatest gift of God is love.