A new line in the sands

hourglass-708574_640Since last Monday, the way we’re looking at our present and future has changed again. We’ve lost an option.

Paul’s scan wasn’t the great news we’d hoped for – but there was some good. The good is that the esophageal swelling has gone down significantly. The 5cm lesion on his lung hasn’t changed and the lymph nodes are stable.   The bad news is that the liver is worse. Significantly worse.

I opened and read the overview of the scans the night before. I stayed up until 2am with this news, then went in to meet the new oncologist. I’d printed a copy of the report out and had posed questions on it.

The new oncologist is not as warm as our previous doctor. She was also not happy that I’d looked at the results. She feels that she should interpret them and present them for us instead of us looking at them. I’d rather look myself. Paul wouldn’t. Fair enough. She pushed the point and I told her that I was going to keep on looking at results as they came to hand rather than endure a tortuous wait. End of discussion thank you.

The new line of chemo is hitting hard. It includes epirubicin – which will make Paul lose his hair in a week or two. It also entails him taking chemotherapy tablets every day. He has been exhausted – sleeping  a great deal of the time, tiring easily, unable to drive until today.

It’s been a lonely week for me. I don’t know what we’re going through here. The oncologist seemed to wave away my concerns about  Paul being tired “Cancer makes you tired. Treatment makes you tired.” God, I wanted to slap her. DUH! We’ve been living with it for three months now! Is this your A game bedside manner new doc? Cuz I have never been so close to telling a medical professional to go fuck themselves before!

This is a new type of tired. For a fortnight Paul and I seemed to be fighting off a low grade virus. This new tired he’s had since the new chemo? It’s deeper, more intense – and it frightens me because I know what lousy shape his liver is in. It showed up in his last blood test. As it must have shown up in previous ones that his liver is “operating at a high level” – then really medical pros, why should I trust you when you haven’t told us this has been a pattern?

In some sick way, this is like the old age Paul might miss out on visiting us early. My pedometer registered 6,500 steps during our outing today running errands. That wiped out my 49-year-old husband. He had to take a nap – as he has to every day now. I can see his shoulder have gotten narrower – we have to buy new pants for him because he’s lost 12 kilos or so. And his handsome face is so tired. He’s just not sleeping.

This morning I was angry about it all. Angry that we haven’t been cuddly. Angry that he is too tired to go to the Royal Show. Angry that we can’t go anywhere for long periods, that we have to sell our kayaks, that cancer and thoughts of death hang over us, that we can’t make plans and feeling guilty because I feel so lonely. A five or six months ago we were going to take a wine tasting course. Now he can’t let the stuff pass his lips. He’s been too weak and tired to undertake the cooking course he signed up for too. And has very little appetite.

Throughout all this a memory comes to me of sitting with Paul on Monday as the nurse explained all the new medications and side effects. I got teary. She took my hand, looked into my eyes and said “Where there is still a line of treatment left, there is hope. You have to hold onto that.”

Hope is like a plant though. It needs something to keep it going, to feed it and to make some sunshine. It’s been a dark, cold week this week – and not just weather-wise. Some sun broke through in the form of a great morning coffee with two dear colleagues where we laughed until our bellies ached. An uncharacteristically long chat with my older sister, whom I love dearly and our relationship is getting richer and stronger as the years go on. And smaller comforts like a new book about a topic I love and a silly skirt with cats and books on it that will cheer me up when I wear it.

But this week has been a week of horrors in the world. The tidal wave of refugees pouring into Europe and that poor little boy washing up on the shore of Turkey. I can no longer deal with the pain of thinking about those horrors and my own. My own I have to deal with – the rest I need to leave to those who have deeper reserves of energy and happiness.  That makes me feel selfish. Because it IS selfish. But I can’t take care of the rest of the world and Paul too. And Paul wins that battle easily.

So I find I can’t deal with social media news postings right now. My outrage stores, my emotional well, my resilience are all at low ebb and I want to put them toward our life right now. Tomorrow I will block every single petition site that comes into my inbox as I’ve unfollowed all the outrage click bait posters on Facebook.

We’ve lost one of a handful of weapons in our attempt to dam the tide from going out for Paul. The fight is now tougher as we look at selling our beloved kayaks and give up some more dreams for now.  We’ll keep on fighting and hoping because we don’t have an alternative that’s acceptable. That much isn’t changing – no matter what the news from the next scan in 8 weeks from Monday.

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