MarySmith’sPlace ~ Life dribbling out – Cancer dairy #21

Wednesday 27, January: Last week’s update was very late, appearing on Wednesday instead of Monday so when Monday came round it felt a bit soon to do another cancer post. And here we are at Wednesday again – perhaps this is going to be the update day for now.

There’s not much to update really. The pain on swallowing is still there – no worse than a week ago but no better. This morning when I woke I lay for a few moments before trying a tentative swallow, promptly curling into a ball at the pain. It’s so depressing. All pleasure in eating and drinking has disappeared. It hurts, whether I’m swallowing a mouthful of mashed potato or a mouthful of milkshake. Sipping or gulping – it hurts.

The ‘sunburn’ is still burning and is puffy with fluid. A friend kindly sent me gel-filled cooling pads which have been bliss to use. My skin is so hot it soon heats up the gel pad until it’s like a hot water bottle – then I swap it for the pad cooling in the fridge.

Worst of all, though, is the loss of energy. The oncologist warned me about fatigue, as did the specialist nurse in Edinburgh and the radiographers but although I expected to be tired – after all I was tired when having chemo – this is a whole different level of tiredness. This is dress, come downstairs for breakfast – need to go back to bed. This is sleep for a couple of hours, reply to two or three emails – need to go back to bed. Sleep again. I think I’m possibly awake for about six to eight hours a day.

I know – it’s one of the first things I learned since having cancer – every single person with cancer is different (even if they have the same kind of cancer) and their reaction and response to treatment is different. My friend Sue, while continuing her cancer treatment, posts on her blog several times a day – I think I’ve done really well if I manage two posts in a week – and she’s working on a mammoth editing task at the same time.

I’ve more or less abandoned attempts to finish my annual accounts, had to give up this week on Pilates and a Burns evening. I’d been so looking forward to seeing and listening to other people (on Zoom) as now my treatment is finished I see no one apart from the DH and much as I love him…

When I was first diagnosed with lung cancer I had so much energy and drive. There was much to do, to sort out and to organise before my demise and I had the energy with which to do it. Right up until I started treatment. By the second round of chemotherapy I was already jaded and faded and letting things slip. Now, after all the chemo and the radiotherapy sessions there’s a deep exhaustion. I know my throat and my burnt skin will heal – probably – but I don’t know if the tiredness will ever go away.

If not – if this is as good as it’s going to get. If the ‘extra time’ the treatment has bought me comes along with this level of no energy and tiredness – then it was dearly bought. Although, I rather enjoy the seductiveness of my bed, of slipping under the duvet – morning, afternoon or evening – and leaning back against the pillows, book in hand for a page and a half before sleep takes me.

Is it a healing sleep or is it a sign on life dribbling out?

And on a day when it would have been quite good to speak to someone involved in my care, the new specialist nurse failed to call.