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Scanxiety


We are back in the waiting place and it’s not an easy place to be. Last Friday, Robin had the next CT scan and we are again awaiting the results. This Thursday is the next oncologist’s appointment, which is when we will find out the results and the decision will be made for what’s next.

We are hopeful that the current Keytruda treatment (immunotherapy) can continue, as this gives the best possible outcome. Robin has a huge fear of the alternative treatment option, chemotherapy; in the first place, his type of cancer has not shown to respond well to chemo and secondly, everyone knows it is a very tough treatment regime and thirdly, and most significantly, at best it is expected to give him a maximum of 4 more years.

We are learning that cancer is as much a mental battle as it is a physical one. Physically, Robin appears to be doing better most days. The pain and fatigue have lessened and he is able to do at least some work most days. Mentally, it is still very much a roller coaster for both of us. Something that helps tremendously is knowing that so many people are praying for us; we are so grateful for your support and for those who are keeping in touch regularly. It has not been easy isolating ourselves for so long and knowing that others are thinking of us means so much. There is a saying in Dutch which a dear cousin reminded me of recently: kanker krijg je nooit alleen (you never get cancer alone), which is so so true.

In the meantime, Robin is having weekly blood tests, mostly to carefully monitor his liver function. The concern is that further liver function deterioration could make chemotherapy no longer possible. The last few results of these have been promising and showing that liver numbers have plateaued, which makes us all feel hopeful. What we now need is a scan result to match this and at last give us an indication that treatment is actually working.

The question of the last few weeks has been: is this real? Is the lessening pain, fatigue and improved liver numbers an indication of shrinkage of the tumours? Can he expect to live another 20 years instead of at most 4? It feels like the end of your exams and the anxiety you feel, except this is not just about a grade but life.


Robin has been requesting all his blood test results (not what your usual patient does) and plotting all his results to monitor what’s going on. “I’m going to have to science the s**t out of this” (Matt Damon in The Martian)

He and Haidee are researching extensively and sending scientific research papers to the oncologist to keep him on his toes. Thankfully, Will (the oncologist) is open to this (although he did caution us that he may not always have time to read everything fully). Robin found an interesting recent paper reporting on a particular blood indicator that suggests effectiveness of the keytruda therapy and he is tracking along that pathway. Will had not heard about this study and was very interested, it’s great to see that he is keen to learn, especially considering that Robin’s cancer is very rare with only around 50 cases per year in NZ.

This next scan result is causing us some anxiety but we continue to hope and pray for a good outcome and will let you know later this week. I will finish with a poem I wrote last time we were awaiting scan results:

I know and yet

I know there is a reason

I know God has a plan

I know he works all things for good

And I am safe in His hands

I know nothing will happen

That He does not control

I know He loves and deeply cares

For me and for my soul

There is no need to worry

I know I need not fear

Even my hairs are numbered

And He is always near

And yet, despite this knowing

The pain is always there

And oftentimes they surface

The sadness, worry, fear

Help me trust you more and more

Even when it hurts the most

Give new strength for every day

Always find me when I’m lost

Christine

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