Blog 18 – All request time, pop pickers.

Blog 18 – And some mental re-alignment needed now.

Another huge dollop of touchy-feely stuff in a minute. But first it’s question time. I didn’t take you lot to be shy – but no-one is asking any on-line questions about the topic. Next week is my last week of treatment – which means I won’t need to research anything more – so if you want to know why veins turn black and blue or strawberry red when you inject them, or why my mask is green rather than white or purple, now’s the time to ask.

So what’s this about pop pickers?

I was about to have my final glass of Dunton Waterworks water – not quite the same ring to it as Echo Springs, Heaven Hill Distillery Black Bourbon – but sure tastes nicer at the moment – before putting on my coat to head for Mount Vernon last Sunday, when the door-bell rang and there was Julia with ANOTHER pressie from the Potton and surrounding villages crew. A professionally produced CD of 17 tracks that they’ve lifted from an extraordinarily eclectic set of juke boxes. Each track prefaced by a message from the person who chose it.

Recognising the massive emotional explosion about to happen – the love of my friends sent forward as I was about to endure another night of torment in the hospital – I would have soon been reduced to quivering tears if I hadn’t just dashed out, got the said water and dived into the car – I am sorry Julia for such an abrupt exit.

I hadn’t figured on the following week being such a tough one and so it has taken until today to be able to say “thank you” friends, for your CD. You’ll have to see the facebook photos for the track list and the CD cover art – thank you Jules for this treasure. If you don’t do facebook, I’m sure you know someone who does who will be able to show you – otherwise pop round and I will.

Mental re-alignment. 

People have said that they think I’m brave. My way of dealing with this condition is to understand it, to consider what the worst might be, to consider what the best might be, to place myself along that journey at a point where I would suffer but not too much. To think that I was fit enough and strong enough to be able to get through it. To trust the medical staff in their judgement about my illness, my treatment and my prospects. And last but not least with your support, to face this head-on. 

This week saw some light shed on the worst. And I am now in the process of shifting my view of where my journey will take me. It is time to be somewhat a-feared – but I will work out, over the coming days, how not to be.

The latest bunch of needles left me bruised. 

On the good news front, the top up of blood needed to increase the haemoglobin count done half on Monday evening and half on Tuesday morning was a success – well, in terms of the procedure – I had a fresh blood sample taken yesterday, Friday, and will know the result on Monday.

The latest game of golf left me exhausted – it was warm and windy on Wednesday with some very steep slopes on the Rickmansworth Pay and Play golf course – Bill and I had a dreadfully poor game. By the evening I was feeling very unwell – could not eat – and next day was much the same – but also feeling nauseous and flu-like – indeed it was just like having sunstroke. When I weighed myself on Friday I’d lost quite a few pounds, and when they fitted my mask they were worried by the amount of room there now was – they may need to do a refit next week.

The latest food and drink taste sensation is truly awful. Luckily the Ensure two-cal drink is palatable and at 400kcals per 200ml bottle (2 kcal per ml), I should be able to get that weight back on over the next few days.

One of the things I did fear seemed to come a bit nearer -  my hearing reduced on Friday when about to get in the shower. It seems to have returned now. But the frequency of tinnitus bouts is increasing.

I’m now on 50% more Fentanyl pain-killer patch – and so have been able to reduce the morphine from 4 times a day to one or less.

But I think some strange things are creeping in – I suppose it is a form of hallucination.

If I close my eyes when working on the laptop (often!) A second-long bright light flashes on in my head. 

If I close my eyes – or just blink slowly – when being driven to an appointment, the car in front suddenly appears to be just a few feet away – but the scariest is a kind of Pop-Art effect that pops up momentarily on a surface – so it might be a picture of a postcode appears suddenly on top of the curtain or newspaper or tee-shirt that I’m looking at. Or a page from the beano might replace a piece of pine-panelling in the bathroom. 

Mostly this has affected my sense of sight, I suspect it has popped up in my hearing but haven’t isolated that yet, but the chilling one is the sense of touch. 

When on the radiotherapy bed on Friday I could swear that someone was touching my arm and then my leg when I dozed off momentarily – and again yesterday when I was laying on my Easy-boy chair listening to the CD it felt like Lexie was nuzzling me even though she was in a different room.

I don't think I'm turning psycho, though. Visitors are still welcome. Especially after next week when I shall not be going out once my treatment stops - apparently this is the loneliest time when it appears that all medical support just drops away.

Cheers

Frank