Sue Vincent's Daily Echo

“… knowing you are going to die makes clearing out the cupboards so much easier!”

The sound of choked laughter came through the phone. “You should write that,” said my friend, once his calm was once more regained. The sentiment had, I think, taken him off guard, but it was a simple observation. Even in such circumstances, there are up-sides.

Like, I seem to have pretty much ‘retired’. At least, temporarily. I certainly won’t be back at work until the chemotherapy is done… and who knows after that? And all my worries, although they are exactly same as ever, are now definitely finite. Except, that has always been true, I just know now that they are. And that conscious knowledge is the only thing that separates me from any other person in the street.

We are all dying by degrees, as part of the natural lifecycle… but being aware of it does make a difference. Accepting anything as a gift that can be enjoyed for just a little while gives it a different sense of value. Those few minutes when dawn glows gold or sunset paints the horizon with flame… the first time a baby looks into your eyes with that deep, wise gaze… that first snowfall by moonlight that sparkles with magic… Such transient moments are the ones you remember… and against the backdrop of eternity, our lives pass faster than a mayfly.

But no-one likes talking about death and dying. Especially when it might actually become imminent rather than some far of ‘maybe’. That I would write about it was inevitable. But where to start? I have mentioned the collapse, the diagnosis and the start of chemo and immunotherapy, the next round of which begins, blood tests permitting, this time next week. But there are other sides to it too.

“It throws me,” said my son, subjecting my steroid-rounded face to close scrutiny. “You look too… healthy!” And I do. I appear to have gained a little weight, rather than having lost it as I was doing originally. My skin looks pretty healthy… the wrinkles have softened… and, in spite of all the nurses’ assurances to the contrary, I still have my hair… at least, for now. On the surface, and unless you know me well, you would never know.

I am still doing most of the things I would usually do. Except for the heavier stuff, like mowing the grass. I am asking for help lifting weighty things. I have to rest between jobs and  I can get out of breath sometimes. But I have been doing that for months and actually feel better in many ways than I did before I was rushed into hospital. The pain levels have dropped considerably too and I can actually lay down to sleep in more than one position.

My mind appears to be still functional. Possibly too much so as it races around being busy when it should be sleeping, trying to squeeze more hours into each day, perhaps, so I can get done what I would like to do. I do not count the elusiveness of the occasional noun. That is probably just an age thing… and if it is the chemo, I can live with that. The only obvious symptom is my voice…always quiet, it has lost all resonance and volume… and speaking on the phone is nigh impossible.

The trouble is, looks can be deceiving. I find that most people who know of the situation but have not seen me recently, expect me to be gaunt and grey, or wilting delicately like some fragile flower.  The problem with looking well is that people don’t believe that you are not. Or they filter what they hear to make it a happier story. And while that makes it easier to live with, it is not always a useful or even a helpful perspective.

There are some conversations you never want to have. If they force their way into your life, you may well avoid listening too closely… you may miss things, whether because you really do not want to hear them, or because you are not ready to take them in. Or you may hear it all and filter out those things too painful to acknowledge, replacing them in your conscious mind with a version less final and holding more hope. Sometimes, especially with those closest to you, those you love, you will have to go back and revisit that conversation several times before the facts sink in.

Sadly, when you are sitting there being told that, within the current state of modern medical knowledge and barring divine intervention, there is no cure, you cannot afford to mishear or misunderstand.

And then, there is a whole new language to learn as they give you your options. ‘Treatment’ does not mean ‘cure’. ‘Palliative care’ does not mean just keeping you comfortable till you die. Hopefully, you get a medic who remembers to highlight these points.

I have metastatic Small Cell Lung Cancer, (SCLC). Without going into detail, this means there is nothing that can be done to cure or remove it. Neither surgery nor radiotherapy is an option. It is going to kill me, unless something else does first, it is just a question of when. Palliative treatment with chemotherapy and immunotherapy may buy me some useful and relatively healthy time, if it works.

As this family has already had its medical miracle with Nick, my son’s recovery, I am not expecting another. I do know how much can now be done to cure many cancers… over the past few decades incredible leaps have been made, are being made daily, in the treatment and management of the many and varied cancers.

But first, they need to catch it.

A year ago, I had a chest x-ray following an infection. It was clear.

I wasn’t well last winter and it left me not feelng right. Without COVID, I would undoubtedly have gone to see my doctor months earlier. I was already having scans in March because of the pain. We thought it was my back,  because I have a lot of spinal damage about which I have already been told nothing can be done. So, not wishing to add to the burden the virus was putting on the NHS and our GP’s surgeries, I left it. That particular pain got steadily worse, culminating in my emergency admission to hospital, six months later… and immediate relief when they drained all the fluid from my chest cavity.

It is, I think, fair to say that people were, on the whole, being ’discouraged’ from bothering doctors, even while we were being told to take emergencies to them. I am afraid that for many that fear of ‘bothering’ the health service unnecessarily will linger. While it is undoubtedly a good thing that many minor problems are being addressed more appropriately and with more personal responsibility, it does worry me that many who could be helped have and will slip through the net.

That six months wait has probably cost me dearly.

If you are worried about your health, regardless of the problems and chaos  that COVID is causing, please contact your health service provider, through whatever means seems most appropriate, from talking to your pharmacist, to online services or a telephone call to your surgery. Don’t leave it until it is too late.