My kids reckon I will be an ugly bald man. A health update

Many of those who follow my blog are aware I have Parkinsons. Less well known is that the same year (2012) I was diagnosed with Parkinsons I was also diagnosed as having Chronic Lymphomatic Leukemia (CLL). CLL usually progresses very slowly and doesn’t need treatment for many years.  So at my last six monthly checkup I was expecting my Doctor to give me the same message I’ve heard at every checkup before – that my white blood cell count has only increased by a marginal amount and there’s no need for treatment for a long time yet. Instead my doctor told me that my white blood cell count has more than doubled in the last six months, which is the trigger for starting treatment.

So it looks like I’ll be starting a 6 month course of chemotherapy in February next year.

The timing is not the greatest. Those of you who see me regularly will have noticed my Parkinsons symptoms have grown decidedly worse over the last 6 months. I now spend large parts of each day with tremoring limbs and very tight muscles or my body in a kind of funk that I call my “drunk phase” because I sway uncontrollably and my speech can get a bit slurred. I do get periods where my body kindly cooperates and I am able to function quite effectively. These periods are however becoming shorter and much less predictable. To date I have been able to time my medications so that I would be in one of those functional phases when I had to go out to meetings, gatherings and the like. It’s becoming harder to do this.

I was due to scale up to a new Parkinsons treatment in February. This promised to give me much greater symptom control and potentially take me back to where I was a number of years ago. Unfortunately having this treatment while having chemotherapthy is not advisable and it looks like my upgraded Parkinsons treatment will have to wait until the chemo is completed. I had been looking forward to the big health boost this treatment promised, so the delay is disappointing and when combined with chemotherapy will make my life challenging (and in the process make it challenging for those around me too).

The journey so far has had its difficulties. I have sat on footpaths, train stations and ferry wharves, sometimes for hours, waiting for my legs to remember how to walk. I have exhausted the supply of good TV shows on Netflix, Stan and Amazon Prime as I lay awake through the long hours of the night waiting for the tremoring to stop so that sleep can begin. I mourn the lost opportunities to do things with Sandy and the kids. Lachlan in particular, being our youngest, has missed opportunities for doing dad and son stuff together, which fills me with regret. I grow bored at being house-bound and disappointed that I cannot contribute to my family and community in ways I once took for granted.

Yet I am in good spirits.

In the last few years I have discovered myself, life, God, and grace in ways that I never expected. In many ways my life is richer, my heart more thankful and my joy deeper than ever before.

I have brilliant doctors, a Parkinsons specialist nurse who is unbelievably good at her job, live in a country where very expensive medicines that I need are made available either free or at affordable prices, and have a form of cancer for which the survival rates are very high.

I have a life partner, Sandy, who takes my breath away with her love, generosity, kindness, care and extension of herself in a myriad of ways we never imagined either of us would need to. I have children who bring me joy, make me laugh and love me deeply (even if they insist I’ll be an ugly bald man!). I have a mother, brothers, and sister who are incredibly loyal, generous and supportive.

I belong to a church which is full of people who surround me with constant and generous lashings of love, kindness, support, and prayer. I am blessed with friends near and far who do the same.

And I have faith in my Creator,  the ultimate source and originator of love, grace, generosity, kindness,  compassion and hope, and who fills me with a sense that whatever lies ahead – whether the realisation of our worst fears or the triumph of life – that nothing can separate me and my family from love, from hope and from grace.

Blessings my friends.