“Happy New Year. How are you?” We never know quite how to respond to this. People want to hear good news – now more than ever. The honest truth is “We don’t know. We’re waiting for blood results.” We are always waiting for the next set of results. Every 3 months when things are good, 2 months when the docs are a bit concerned, weekly or more often when things really aren’t great. Currently we’re on 2 months and today is the day. Husband feels pretty good. He’s had a couple of nasty headaches (but refuses to take pain killers). He felt so rotten one night that he took a Covid test at 2am – fortunately negative. He thinks it’s dehydration, lack of sleep. He hopes so.
The appointment is any time after 1.30pm but it comes at 11.30am. Husband frantically gestures to me to run for a pen and paper. The doc starts with some results that sound pretty good and I feel encouraged. Haemoglobin is down a little from 152 to 148, the platelets are down from 405 to 352, white cells up to 8.5 but “all normal”. Except the things that aren’t… Here’s the kicker: “The proteins tell a slightly different story.” They’re up from 5.6 to 13.8, “rising fairly sharpish” according to the haematologist. So here we are again. I half expected a rise but I didn’t expect the proteins to have shot up so quickly.
The doc tells us that they need to do something about this but that it isn’t urgent. What is a bit disconcerting is that we don’t yet have a treatment plan or even an idea of options. The specialist told us that the WM is so rare that it’s hard for them to know what to do and they need to ask experts elsewhere. The doc explained “There is no automatic right thing to do so we’ll ask the experts and get back to you as soon as we can.”
So Husband’s case will be discussed at an MDT at some point in the next month or so and we should have some answers in the next 4 – 6 weeks. That seems like a long time to wait but waiting lists for everything are exceptional at the moment due to Covid.
We do have an answer to one question though: get the Covid booster as soon as you can. Great. We rang to make an appointment. Husband is booked in as soon as he’s eligible, 3 months after his third primary.
The doc tries to be encouraging, telling us that Husband might not need treatment until the autumn but privately our guess is that it will be before this. The doc suggests another 2 months before the next appointment, hesitates and corrects, “Looking at the numbers let’s make it 6 weeks.”
We seem to be caught in a holding pattern determined by cancer and Covid, endlessly circling as we run lower on fuel, without clear instructions on where to land. Sometimes we discuss future plans as if we’re people with real options. But are we? Will cancer and Covid allow us to exercise choice in the coming months?
It’s all a bit overwhelming to me. But God is not overwhelmed. He knows exactly where I am and where I’m going and He won’t leave me. So my job is just to do what I can, right now, where I am, with what energy and ability I have now. Husband acknowledges to me that the results are “disappointing but not really unexpected”. He’s taking it in his stride as much as anyone can. My heart bleeds for him. This is so hard. Again.
I am fed up of cancer, fed up of Covid. If it’s not one getting in the way of life it’s the other. But Husband is still here, 6 years after diagnosis and he feels good. Treatments are available. We can access treatment because of the NHS. We do recognise that these things are blessings which much of the world would not have in our situation. It’s just that it would be even better not to have cancer.
But God is still here and He is still God, not limited by our circumstances. Because of that I can keep going, step by step, or I can ‘stand on my knees’ like a Lord of the Rings Hobbit: “We may stand, if only on one leg, or at least be left still upon our knees” and propped up by coffee!
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