Helen came today, at 0930! Early turn, or that's what it felt like having had Oramorph at about 0500 and coffee an hour later. The usual how are you was met by the usual I'm fine. No you're not, you are pale, struggling to breathe, whats your poo like and how are you peeing, what about sick ..... all the normal stuff.
My wife answered on my behalf, well mostly. She had some new morph or another, not as long lasting, not as foul tasting but should help with breathing, we'll try some now. It did help with breathing but I was being wiped out slowly. After she'd left I returned to bed and crashed till 1130.
I'm getting a double dose of the night one, something else that'll be in tomorrow and a nurse will come to do bloods. Too much risk to go to the surgery but I didn't mention that I want to try to get to see dad in hospital tomorrow. There seems no end to the lengths of goodness they will go. I feel overwhelmed with care if not energy.
At 1130 I came to, felt up to a shower, donned regulation funeral wear and went to the crem. A friend who made the most wonderful sausage rolls, scotch eggs and Bakewell buns and you get the picture. She was a year older than me.
Parked in a blue badge slot I felt no guilt so that's progress and many friendships and acquaintances rekindled. Mostly thoughts kept me company, though. What music will i have? Too much choice. What would I want said, nothing. Who to say it? Doesn't matter. Seems its sorted anyway! It's not about me it's about those left behind.
These thoughts concluded my morning, they did not start it. A few weeks ago I phoned a friend who's coped with depression for years, bi polar I believe. Last week a friend came through the front door looking awful, grey, lifeless ........ stress, anxiety? On Sunday afternoon we were informed of an acquaintance, last conversed with almost a decade ago but you just pick up where you last left off, don't you? There will be no opportunity to pick up the conversation in future as he took his life at the weekend.
I'm being looked after like I don't deserve. Blood tests I've had hundreds, scans I've lost count. With cancer there's spots they can find, monitor, measure, muse over and in some cases treat. The data from a blood test is unbelievable. My C19(?) numbers were monitored weekly then fortnightly for years it seemed. Meaningless apart from slowly increasing, still slow growth and eventually no point measuring any more.
When the problem is in the mind how do you find it? You can't scan for it, a blood test won't show it, asking about it depends on whether the patient suffering this disease is prepared to engage with the questioner, open up to the professionals in this area.
But as we all know it is so easy to hide what's going on in your head, that's the nature of the disease. And it is a disease. A disgusting disease, easily hidden, covered, ignored. A terrible disease, much worse than cancer, I think. The inevitability of my demise seems pretty set, barring miraculous healing which I don't discount as with God anything is possible but I'm not counting on it. A word that morphs into a thought, becomes a desire too great to ignore, out of control and finally explodes to the point at which the diseased mind decides that the only way out is perceived to be to take your own life.
In my case a cell went it's own way, multiplied to the point of being recognised, treated as well as it could be for as long as could be done but soon it will have its way and it'll be me in a box in the crem. But what if the disease starts of as just a word.
A word that becomes a thought, that becomes an idea, that becomes an all consuming malady from which the sufferer can barely switch off for just long enough to convince, maybe only partially but sufficiently, that they are alright. How great must the struggle be to keep that which torments the mind hidden, particularly from those who know you best?
I can't hide my spots from a scanner, nor my deranged blood from a haematologist. I can't ignore the pain. I can't fight the fatigue. I can't ignore the nausea. I can't not be pale when the hospice nurse comes.
The mind is so totally different in every way imaginable, indeed in ways unimaginable. I'm fortunate, too lazy I suppose to dwell on things although I have known stress and anxiety but I've always had outlets for them. Mostly going out in boats but at a very bad time in my mental history I was allowed to buy another motor bike after a hiatus of too many years following a broken pelvis, seriously damaged right shoulder, still apparent, a not as badly damaged left shoulder, knee borne gravel rash and so on.
I should have been a better motorcyclist. I tried, did police return to biking courses, pretty good, a police advanced course, fabulous in the rain with a plod from Camborne. Keep up with me if you can, catch me if you dare, overtake me by all means but keep to be rules of the road. I could hardly follow him, let alone keep up! Later on I also paid the fines and collected the points.
It's the only new vehicle I ever had but when you get home stressed out and you fire up the bike the only thing you notice is the two or three inch width of the front contact patch and the tarmac immediately in front of it. I did hundreds and hundreds of miles like that. It kept me sane. Boats, too! Not everyone can do things like that. I had those opportunities and I could never adequately express my gratitude for them. If I hadn't how long would it have taken my brain to shut down? it did once for a couple of days and I'm still conscious of the effect it had.
The worst thing was that I had no idea how bad I was. My mates with whom I shared a beer or two on a Friday night did, though! My wife did. One colleague did. It was only me who didn't.
In a while I'll have two of these, two of them, one of those and an extra strong mint. A preloaded oral syringe will be easily accessible and I will sleep well until I wake and squirt the syringe down my throat at which point I will lie still, marshall my thoughts and pray.
I will give thanks to God that my cancer is being treated, that I am surrounded by grace and people who I love and who love me. And I will pray for those lying awake in the desperate throes of mental turmoil about which only they are aware. And powerless in its grip.
Early this morning I read Psalm 88. It is the mind of unrelenting unrest put into words. No cure is offered. You can't snap out of it, you can't get over it, can't just get on with it. You can only suffer. Like any disease it is not always fatal, some live with it to a ripe old age, some don't. What is certain though, is that it is every bit as bad as, and I think worse than cancer. You can ask why but you won't get an answer, you can scream at the injustice but it won't bring relief, self pity only makes you more difficult to be with. So what can you say?
All I can say is that my last four years have been a trial, far more so for those who love me, though and the end is inevitable but unlikely to be sudden. I have time it seems. Those around me have time but it is not always so, is it?
The other lesson that I've learned is that the God of the bible makes himself very real to you, to us. Dependably so, often in amazing ways and always at exactly the right time. We have learned things about God in the last few years that I'm not sure we otherwise would have. Does that make up for losing Paul, having T4 ampullary cancer, honestly, no. It would take a far more godly man than me to say I'd not rather have Paul back, feel well again and do whatever, but it has been truly humbling to experience and at times almost unbearable to accept.
I shall pray that a recently widowed mum and her kids would prove that God is who he says he is and does what he says he will. I will pray that soon God's goodness, his care and lovingkindness would slowly but surely saturate them. That before too long they would be able to share their experience of God's provision for them with others. That peace would infuse their lives now, eventually shoots of joy would blossom and that one day even a degree of happiness would seep back into their lives.
I shall pray also for those anxious, stressed out and increasingly tired individuals who wrestle almost continually with an enemy I can only barely conceive of. And that they would acknowledge their predicament and seek appropriate help. If they can. I will also pray that they may be given whatever mental strength they need to combat the insidious invasion of the out of control thought and triumph over it as well as the courage to recognise and accept that they may need to alter their lives in whatever way is necessary to limit the havoc such thoughts can cause.
Without doubt, though, the greatest lesson that I have learned is that no matter what we think, no matter what we wish, God does what is best. I often don't understand it but I believe it to be true with every cell in my body. Especially the not very nice ones.
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