Waiting

Everyone warned us that this bit of the process sucks.

Guess what? They were right.

DorkyDad is five weeks out from the end of treatment, and he’s making incredible progress, but it is so much slower and more gradual than we had hoped and imagined.

I imagine this is how the second lockdown felt to everyone in Melbourne. Your reserves – of patience, of positivity, of bright ideas – are already exhausted, but there’s no option except to keep doing it, day after day after day.

After the end of treatment, DorkyDad continued to lose weight. Despite being able to eat more, the radiation continued to affect his body and the kilos kept on falling.

Now, after more than a month of huge effort, he is up to three small meals and a couple of snacks each day. He is off the dreaded Sustagen, and instead has started to drink smoothies made with vanilla ice cream and the fresh, sweet strawberries that are just coming into season here. Despite his fond memories of childhood concoctions we have drawn the line at the addition of raw egg.

The radiation side effects have not lost their ability to take us by surprise. His mouth is still sore, and the foods that he can tolerate are entirely unpredictable and often change from day to day. Crusty bread with ham and mustard is fine. The addition of cheese is not. Two days ago, he declared cucumber his new favourite food, but at lunchtime today it was a struggle. Berries and watermelon are fine. Apples, bananas and stone fruit are not. Nothing too sugary seems to work yet – a square of dark chocolate sets off a painful tingle – but he is craving cake. A towering slice of light sponge with frosting. I am making daily trips to the city’s bakeries, trying in vain to find one that will work.

This is a recovery process that is unlike anything either of us have experienced before. It is not like getting over a sports injury, where you can get straight into physio and rehab. Instead, it requires a lot of rest and patience and waiting.

All the things he wants to do – golf, gym, long hikes – still use up too much energy and require muscle strength that has not yet returned. So it has taken a mental and a physical adjustment to find the activities that will heal rather than harm. Yoga is okay. So too are short walks, long novels, and the occasional potter in the garden.

Thank goodness though for work, for poetry, for little tasks around the house. We built a wine rack this week, and have been laying down nice bottles of Tasmanian chardonnay so when the taste for alcohol comes back – assuming it does – there will be something there worth waiting for. We built a shoe rack too, finally tidying up the hallway and getting all those thongs and gumboots off the floor. We’ve had the leaky roof fixed, and ordered replacement blinds, and hopefully at some point a new kitchen tap is going to show up so we can replace the constantly dripping one that has been driving us all a little wild.

So, things here are both very normal, and not at all normal. The diary is full of business meetings on Zoom and follow-up medical appointments in-person. Our minds are on Christmas gift shopping and on DorkyDad’s post treatment PET scan. We try hard not to talk too much about the lingering fear that we might have to steel ourselves for round two – but occasionally we will exchange a glance and I can tell that in that moment it’s where our thoughts have settled.

But we are also making a point of celebrating the small things. The first day where there is just one nap instead of two. The first beach walk where we do the full route instead of a shortened one. The first sandwich where he can taste every mouthful – a tiny brioche slider bun, mayonnaise, salt and pepper, slices of wafer-thin roast beef. It still hurts, but judging by the smile it tastes pretty amazing. It gives us hope that there are more good things to come.

DorkyDad’s greatest wish right now is a burger and a beer at The Standard. It’s getting closer… it’s definitely getting closer. If it doesn’t happen by Christmas then perhaps by the New Year – along with the first round of golf, the first hike, the first workout session at the gym.

For now though, he sits on a stool by the herb garden, gently pulling out weeds. He works for fifteen minutes, then stops and rests for five. There is a bottle of water always by his side, and a wide brimmed hat to protect him from the sun.

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Photo by Ümit Bulut on Unsplash

11 responses

  1. You so graciously put into words the walk so many face without a way to express it. Thank you for your generosity and courage to face what you do each day. Sending you all so much love.

  2. What a marathon this is for all of you. Glad to read the DD is enjoying some food. Has DD thought about Qigong as an exercise – similar but different to Tai Chi but very, very gentle and excellent for the body’s energy system…. XXX

  3. I am full of admiration for the courage with which you and DD are facing this. It’s such a long road and rare to read an honest account like this. I wish you, DD and DS all the very best for each step of the way.

  4. Pingback: » On Dorkymum | Stories from Tasmania

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