Sue Vincent's Daily Echo

The nurse, her eyes above the mask both understanding and sympathetic, reached out a gloved hand and squeezed my shoulder in passing. That was it. It was all it took. The floodgates opened and for the next half an hour, I was a wreck. It is one of the more insidious effects of COVID that physical contact… including such small but much-needed gestures of kindness and comfort… are now as rare are rocking-horse eggs.

When my late partner was in hospital with cancer, how many times had a nurse’s arm crept around his or my shoulders or stopped us from hitting the floor? Or when Nick was attacked and left in the coma, and friends were standing vigil by his bedside, how many… including the police officer on guard… had to be held while they came to terms with what was happening? It is, I believe, a common need to turn to another human being at such times… and the virus has robbed so many people of that simple comfort.

This is not just a ‘cancer thing’.  From those who have been unable to be there to hold a hand and say goodbye in person to their loved ones, to those who have faced trauma and treatment alone… and the families, friends and many healthcare professionals who have had to watch from a distance, wishing they could reach out and help… do something… but who have been prevented from doing so by the new ‘rules’ we are all urged not to break… while people and hearts are breaking instead. Through all those, to the people would give their proverbial eye teeth for a simple hug… it would be impossible to count how many have been affected.

But today, kindness won and tipped the balance. It had already been a fairly emotional appointment. The immunotherapy, they told me, is still working and the cancer is still behaving… which is splendid news!  But while the tumour has shrunk, the rest of me has ballooned, gaining a third again as much weight as I was carrying at the start of this.

One of the problems is simply that, with the masks, none of the staff get to know you, They have never seen you. So how, when you tell them things are getting out of hand, could they possibly know what you mean?

I took ‘before’ photos with me. Ones that show I was not elephantine a few months ago. Not spherical.

While I have tried to make light of it, the whole thing has gone way beyond amusing to painful and debilitating. I can no longer move freely, I struggle to breathe comfortably and find simple tasks like getting showered and dressed are now physically difficult, because my limbs and torso are so tightly swollen they cannot move as they should. And they don’t know why.

“Do you have much of an appetite?” asked a nurse. No, I have mirrors… including in the kitchen. And it is obscene to see anything this swollen stuffing food in its face. I’ve deliberately eaten little and healthily for the past week… and still put on yet another three kilos.

They think maybe it is a cardiovascular problem… perhaps blocked veins… I have yet another scan coming up to have a look. It could be the steroids… except I wasn’t taking them for very long. Or it could just be my body’s reaction to having to deal with the assault of cancer… or its treatment… or something they haven’t even thought of yet. Either way, it has gone way beyond vanity and become a ‘quality of life’ issue, since reaching down for the dog’s ball and falling flat on my face because I couldn’t stop myself. I just hope they can find some sort of answers.

Given the initial prognosis, though, I am extremely grateful to still be here, still ‘me’ in most ways at least. I suppose it boils down to ‘expectations’… the one thing you can be almost certain will disappoint you… and the one thing we stubbornly and blindly seem to cling to. You expect certain things when you go through chemo. The god-awful side effects are a given. You sign up for that. And you hope that the results will be worth it… that you will, by going through it end to end, ‘earn’ back a bit of time with a decent quality of life. Between COVID robbing us all of the social interactions that we need as human beings, cancer and other long term illnesses leaving so many vulnerable and isolated and the fallout from whatever is causing my body to react as it is, I can’t honestly say that on a physical level at least, ‘quality of life’ is living up to expectations at the moment…

But there are other levels and one thing that makes a huge difference is people who care… and I have been made to see that people do. From the ones who put their own lives on hold to be there for you, to the friends who lightly keep a distant eye on you by email or who share their own joys and tribulations with you… to the people like those within the blogging community, who have once again pulled out all the stops to support one of their own. For the past couple of weeks, H.R. R. Gorman, Charli Mills and the folks at the Carrot Ranch have been running a literary Rodeo. The number of wonderful messages I have received has been astonishing… and have not only helped me personally, but have done a good deal to help my sons too, as they take some pride in seeing that Mum might have touched lives beyond their own.

Your task is not to seek for love, but merely to seek and find

all the barriers within yourself that you have built against it.

Rumi.

Charli sent me that quote, seeing, perhaps, more than I could see. It should be the easiest thing in the world to say ‘thank you’, but words are never really enough and I have been struggling to find the right words for a long time. Maybe there are no ‘right’ words… except to acknowledge that without such care and kindness… which always translates as love, one way or another… there would be no real ‘quality’ to life at all.