Charlie's good tonight, isn't he?

Thus states Sir Michael Phillip Jagger (I must commit to this blog the fact that in the summer of 1975 whilst staying in Chippenham I had tea with Joe, Mick's dad) as he introduces Honky Honk Women on Get Your Ya Ya's Out one of the best live recordings ever which begins with the statement "the greatest rock and roll band in the world, The Rolling Stones". No argument. This morning I played it as 0s and 1s in our back room. Very clean, very precise quite lovely. I turned it off when friends arrived.

Tonight I've been listening to it by dragging a lump of rock through a groove cut in a piece of plastic over 45 years ago. Magnificent doesn't do it justice it really is something special and I apologise to the neighbours. Streamed or CD is so impersonal as to be throwaway but vinyl? The instant Mick began the sleeve in my hand took me back 45 years and to a couple of cards sent a few months ago and totally unexpected.

Both from friends with whom an often damp halls of residence was shared. I'm not sure that my frequent sharing of the Stones had any influence on one but I think it did on the other. Two cards, one just said "Hugs" and expressed the thought that but for geography dropping in would be a good idea. The other was a rather classy and stylish drawing of a place of some significance with words of pertinence. For both my gratitude oozes like water through a landing into the lampshade bowl below.

Not much to write about, then? Well, the Hugs card came from one who has an easy smile, charm, I'm told and most definitely far more a people person than I, although that's not saying much at all. But huggy, touchy feely? The other from one with whom stylish and classy would not be words that immediately sprang to mind. I conclude that another thing we share is that we married well, so well, in fact that our wives have had a profound influence for the immeasurably better.

Sat here, knowing that once the next few minutes have passed Sticky Fingers will be next and then Let it Bleed for no other reason than they always are. If there's any wakefulness left the Hyde Park concert will end the evening but that's a CD. In the meantime I reflect and conclude that the most important aspect of a life are the relationships we develop and cherish.

The ability of artefacts to render polish to relationships is what makes the clutter we collect over a lifetime more than just stuff. I hope my records don't end up in a charity shop too soon but really they are only precious to me. I know which ones have concert tickets in the sleeve, who I went with, why this album is special and so it goes on. 

On my bedside cabinet under a book lie a number of letters, two written in an instantly familiar flowing script as only a fountain pen can manage and one from a lady on the south coast written just after she'd lost her mum but all came at just the right time with just the right words of encouragement and inspiration. To be known well enough for friends to meet such needs is the outworking of a relationship which has no price. It is also very humbling.

Writing cards or letters, phoning, txting or whatever is such a wonderful thing to do that I'm conscious that I ought to do it much more, especially as I realise far too often that it's the fact of the communication more than the content but that's the inevitable result of dilapidation. I'm feeling guilty now and rightly so. 

The fact that so many of our relationships straddle so many years, so many miles and so few meetings is a testimony to their depth and value. There are no words to describe them which is just as well because no words are required. If we met tomorrow, some not met for decades we'd just pick up where we last left off.

Sorry, Sticky Fingers next, it's Let it Bleed now because I feel the need to hear Country Honk although there's not a poor track on either of those studio albums.

The last night of 2019 leads one to recall, reminisce and revel in the memories of those we've had the privilege of having spent time with over a lifetime. There are no adequate words although I confess that the evening would be enhanced with a Guinness or two, alas although my liver is good my stomach can't cope with any quantity of merit but I may just open one and sip it slowly . . . . 

How glorious are the relationships we enjoy? Far more than mere words can express. That's what music is for.

Cheers.

XXXIX

We are surrounded by the most beautiful flowers.
Thirty nine years ago today we made vows in the presence of God and in front of witnesses, vows that will last as long as we both live. With divine grace and in his providence we have got thus far intact if not unscathed.
It's all pretty good to be honest.

 So lovely are the flowers we have that I considered it churlish to add to their number especially as none that I chose would be as lovely as what we already have. When I say "we" I may be stretching it a bit. Thank you Rosie, thank you Becky, the flowers are lovely. I'll not seek to add to them!

I did make a card, though. Moet courtesy of an over generous daughter, glasses courtesy of friends who never cease to go above and beyond and who gave them to us in a blue box with a similar bottle thirty nine years ago today.

So I didn't provide flowers. I didn't provide either champagne or the flutes from which to drink it. I didn't bring much to the party at all. What have I to contribute?

Hiding unpleasant things is never good. It's far easier to cope with reality when it's out in the open. The help we have received in getting this far is unimaginably greater than anything we've any reason to have expected. Inexpressible gratitude ........ 

Been a pretty good XXXIX years, though. I have no complaints although I'm only one half of this marriage and not a very competent half at that but I have been put up with far better than I have deserved. 

In fact, to quote Paul Hewson, "You're the best thing about me".

One of the reasons I love her, totally, absolutely, unconditionally.

XXX X 

Christmas Day. Thank God.

Christmas Day 2019 draws to a close. In the back room the fire's lit and a bunch of midwives perform, here in the front room Diana Krall makes me feel all warm and fuzzy in a nice way and nowhere near as warm as I would be in the other room. It's been a great day and I just overflow with thankfulness for the day currently passing.

Christmas Day continued where the eve left off. From about 2200 I'd had a bit of a turn, dizzy, light headed and nauseous.  Pretty unstable in all my ways. I'm told my  pulse was waaaaaay too high. Racing, thready and I'll call an ambulance. No, let the drugs work. If your pulse doesn't slow soon, etc., etc.. Fortunately it did and after much thanks sleep took over.

Until 0230ish. When the pain kicked in. It always does, only the timing and intensity varies. This was a full on Oramorph pain. This is dispensed in very accurate doses and administered by my chief administrator. It also requires her to be woken and the light put on. Thank God for her.

It takes a while for the effects to be felt and until they do it helps to keep the light on. Im not sure why but when its intense it helps to have a visual focus. On the chest of drawers in direct line of sight are photos of those most precious and every moment looking at them I find myself thanking God for every precious memory especially for last weekend when they were here and in my mind i find myself composing letters to each and sort of running them past God for His opinion.

As the pain continues the group gets widened to the wider family and friends but there comes a time when the pain becomes secondary to the elusiveness of sleep. At such times my eyes stray to a large photo on the wall and from there I spend hours retracing holidays, trips, revisiting the visited and remembering with whom. I thank God for every memory.

This morning the last awakening was about 0630 and only merited a couple of codeine. I can self administer these without waking the delight of my eyes. No sooner had I taken them when I was asked if I was ready for coffee. I wasn't but after 40mins or so I was. Coffee duly arrived.

The depth of gratitude for this is immense but the giving never stops. This morning it was accompanied by the news that my friend Terry in NZ had emailed and that, too was news worthy of much rejoicing. He's been hospitalized again but is being taken off his current chemo and put on gemcap or gemcit that I had. Currently at home with his wife and kids. Thank God for that. I did.

The curtains looked a bit odd so stretching out the opened gap revealed a dawn with something missing. Clouds. Moments later as the sun approached the horizon a cloudless blue sky was revealed. Wow! What joy. Thanks abounded and thoughts were lifted away from the offer of porridge to a consideration of the tin box on the drive.

This is rather special once thawed out. It's rapid, comfy, handles beautifully and makes all the right noises. Early Christmas morning and once warmed up we pootled off. There was some traffic but not much and none that interfered with our progress. Horsepower, torque, heated seats and airscarf combine in perfect harmony. It's quite economical too, for what it is. Today economy suffered as our pace was determined by the noise. The rumble of six cylinders gives way to a gentle grŕrrrrrowl, then the note gets angrier and then deeper and much louder before screaming in delight. Maybe that's me! But today the noise was sublime and the fuel gauge responded accordingly. The feeling was wonderful and I can't help but to thank God for the privilege of having a wife who owns one! We enjoy all manner of experiences and speed is just one of many, isn't it?

We ended up here. Haytor. It was not planned but only yesterday Lesley phoned to make sure all was well. Asking about our plans I offhandedly remarked that I was hoping to walk up Haytor but seeing as going up a flight of stairs needed copious puffs on the puffer it wasnt going to happen so I guess it was subconsciously in my thoughts.

But then I suppose it's never far away from them. We used to take the kids up here on the last day of the summer term and contemplate the next six weeks as we drank fizzy stuff and ate pasties. This continued until they were of an age when the answer to most everything that involved parental accompaniment was met by a largely unintelligible negative response.

One year they went up there and left me hobbling alone in the car park on crutches having broken my pelvis coming off a motorbike.

The last of the consecutive trips was shared with my sister and her family on the day we retired. Cold, grey drizzle, good Champagne from plastic cups and pasties. We've been back at times since most memorably on a wet evening as dusk settled on the Sunday after Paul had died.

Today I didn't expect to get out of the car but I did. One step after the other and we got to the usual spot at the base of the tor. Why should I have been surprised to be offered my puffer, pain killers, anti sickness pills and a bottle of water?

From here the view is a bit special. I've watched Hercules and jets from above as they blast through the Teign valley, I've heard a Maserati on full bore split a dawn apart, watched the Tour of Britain pass the KoM line, watched mists lift and fogs descend but today was special. The unexpected always is.

I can't put into words the weight of raw emotion or the depth of gratitude except to say that tears were shed on both counts.

Today the view reminded me of a quote from a Sister Catherine

One of the more useful consequences of having an incurable or terminal illness is the way it tends to change one’s perspectives. So many of the things we tend to worry about or waste our energies on become unimportant or, at any rate, secondary. Family, friends, community, and for the religiously-minded, God’s judgement — these are what we really value and sometimes fret about in the small hours. With energy at a premium, there is none to spare for self-indulgent moaning about what others are doing or not doing. Every moment is precious because we are living on the edge of eternity.
www.ibenedictines.org/2019/12/16/living-on-the-edge-of-eternity/

Walking back, pressing the roof switch and firing it up for the return was pretty much silent, apart from firing it up, obviously.

It didn't take long to get home and coffee followed, a phone call from my sister, then my brother and speaking to dad. Txts and photos from the kids, a fabulous dinner, a video call from a 3 3/4 yr old and his mum and then a phone call out of the blue from a dear friend who I was at school with half a century ago.

I thank God for all of it, every single thing. It's wonderful and we haven't got to the best bit, namely that today is when we remember the time when God became a man, lived perfectly, died awfully and rose spectacularly so that you can look at the edge of eternity and delight in the view.

The only thing I puzzle over is when you are overwhelmed with unsolicited and unmerited goodness to whom do you address your thankfulness if you dont believe there's a God?

Amazing, ridiculous, sublime

At 1030 this morning the postman rang the doorbell and in return for a signature I am now in receipt of a blue badge. It's such a strange thing, so often associated with others, their age and ailments it feels a little awkward having your own so suddenly.

Right up to the moment you park by the hotel door and find yourself wheezing by the time you've got to reception.

It is truly amazing and testimony to just how efficient Lesley at Hospiscare is. What a lady, thank you. Somehow I assumed that it would take ages and yet here if is in use already.

Rather wonderfully my management consultant suggested a couple of nights in a hotel with sea or harbour views at the other end of The Jurassic Coast.

I felt pretty good as the late night codeine seem to be doing their stuff rather well so it seemed a good idea. Last minute telephone dot com and it's all sorted. Two nights, first evening meal thrown in and a harbour view. Sounded good.

 It was good. Keeping the English Channel as close as possible and telling the Sat nav that a ferry trip was a good thing we gently bimbled our way along the south coast. Lovely, utterly lovely.

Which is more than can be said of the harbour view. I know this harbour well and I wasn't impressed with their ridiculous idea of a what a harbour view looks like. The side of the adjacent hotel wall between your window and the harbour does not a harbour view make. I didn't mention the clanking of a chain ferry and car disembarking suffice to say that two nights listening to that would be beyond codeine.

Ever resourceful, my management engaged with their management and our view became proper.

I have sat here all afternoon watching. AIS never far away, binoculars poised but I didn't even think to bring a scanner. Sublime or what?

There have also been almost endless streams of these type of boats coming going and stopping outside the window.

I could get to like this, may be a struggle to just sit around watching the tideflow and boats come and go but I'll give it a go, till Friday when we'll have to move the blue badge again and head back west.

Thank you, Lesley. You were right. It does make life easier, much easier for both of us.

New chapter, same as the old one ..... just different

A couple of weeks ago I had a bad day.

The morning didn't feel good, nor the afternoon either, the evening gave the opportunity to all that was in me to come out. The opportunity was accepted and acted upon and with a degree of malice. It felt like my innards were at war, which indeed they are.

The next day was altogether calmer but different. Appetite reticent. Comfort negligible. Symptoms strange. Breathlessness noticeable. Head confused. Clarity absent. Peace mercifully intact.

It was a relief to know that my next appointment would be with a Hospiscare nurse.
The letter had arrived and it contained a very familiar form to be filled in prior to the appointment!



Lesley is a delight. After a very generous ninety minutes all was calm, all was bright and many burdens lifted. I think I passed the interview!

We began with Hospiscare ..... Yup, I know them, did PR photography with my mate Mike for years but he manages on his own now! Oh, and my mate Alan is the man who looks after the Hospice hardware, a very efficient maintainer of all he sees.

Then, what the hospice does ....... Yup, my mum died in St.Julia's, Hayle, our son in Ty Olwen,  Morriston, Swansea. I want to die in one, too, if possible, please. If not a hospice then a hospital will do but not at home. I know that one day there will be a cannula into which a driver will force ever increasing pain killers until such time as my body whispers, enough.

I want this house to be where I lived, not where I died. Makes no difference to me but it makes a world of difference to those who live on.

Do you have a faith? Oh yes, we're Christians so our faith is a big deal. The biggest. Faith doesn't make anything easy but it does make everything possible.

Then began the business. I've lost count of those forms that I've ticked but for the first time someone referred to them, our job, said Lesley, is to try to move some of those ticks to the left and to try to slow down the rightward migration of others. Excellent.

Drugs, opiates, morphine, as and when, other pain killers for now, blue badge to make life a bit easier, forms to be filled in, doctors to see ref. prescriptions, etc., etc., etc..  Lesley would see to it. All of it. Burdens lifted from both of us in her presence.

The new chapter has local phone numbers 24/7 for help, advice, the allaying of anxieties. Not so many good days, more like good bits in most days, strange tiredness after eating accompanied by cold feet! The discomfort felt since surgery of such minor import that its been all but totally ignored is no longer mere discomfort. At times its quite sore, enough to wake me up usually between 0400 and 0600 and once it's kicked in it takes a time to manage it but once manageable it can be coped with. The nausea is not quite constant but like everything else once under control its far, far from intolerable.

In reality not so much has changed, days away in nice hotels with views are likely to be nights away and within an hour or two but we live in a lovely place so it's no hardship. Less doing stuff, though and when I mentioned my bike Lesley said to eBay it.

Another chapter but some things remain constant, the last few days have been ones of total delight, burdens lifted and I've lost count of the mugs of coffee/tea that have been made for all our visitors.

It's all about people and we've had so many through the door that it's made life the joyous delight that it is.

All in all we have so much to be so thankful for. And we are. We really are.
Thank you.

Inexorably moving to the right

Every time we visit our Oncology team I have to fill out a form, tick boxes mostly. We are into double figures of forms by now but today I think I did it for the last time.

It seems only yesterday that all my ticks were on the left.
A couple of times ago I noted the migration and today there were more further to the right than previously and the left hand side mostly vacant. I am thankful that my migration has not yet fully populated the extreme right but it seems that I'm on the way there.

As today's consultation drew to its end I was passed from my cancer nurse to a palliative care nurse. From Lizzie to Keith, in fact. No ceremony apart from the fact that for the first time we left Oncology without an appointment for a next visit.

Keith was calmly spoken, real and a gentleman, after all, he recognised me, in so far as he remembered that in a previous life I had helped "rescue" him. However, as I explained, when you are far from shore and your boat has broken down but is otherwise in no immediate peril you don't need rescuing, you just need a tow! It's obvious, really.

Now we will have form DS1500 to fill in when the palliative team pay us a visit.
And I qualify for a blue badge so now I can park wherever I like on double yellow lines and annoy people but at least it should spare the Jazz from Tesco dents. If the Merc had a boot worthy of the name I could take that shopping, eh?

... and summer is over officially.

Aberaeron... Wednesday 2nd October. Calmish. Greyish. Cold. Single figures of °C. The shorts were not even considered. 200 miles east and south its sunny and well into mid teens of °C.
Home tomorrow then.

A trip to New Quay first. Not to be confused with Newquay. An email to answer before anything else, though.

Cogitating as one does when not at home I'm not really surprised to conclude that the highlight of my summer was a wet Sunday night in a Methodist church in Keswick. Furthermore, the Methodist church that last time I was there I'd opined that I'd never go there again.

This ticket is a link to the talk given. It should open in a new window.

The ticket is pretty self explanatory, the event isn't.

I was wary of going to Keswick this year. I looked forward to the trip, the place and the trip back but the event, not so much.

I love the event which we've been attending for years but two years ago I was en chemo, as they may say, last year I was conscious of how little of it I was able to get out to. This year I wondered why I was going but in reality going was nothing to do with the event but all to do with the people we share this event with.

Almost immediately after our arrival my organiser noted the Sunday evening seminar and collected tickets on the assumption that if able I would go. I was. I did.

Dominic Smart, very, Yorkshireman living in Scotland. Suddenly struck with terminal cancer about a year ago. Sounds familiar.

Listening to him explain how he dealt with the news of the diagnosis, the effects of the treatment and the trials it added to his life was just about the most reassuring talk I've ever had the pleasure of hearing. You may be in a hall with a hundred or more but the talk is to you, just you.

You can witness all this, you can experience it, too but the tendency is to compartmentalise it and assume that the way you deal with it is unique to you.  It isn't. It's always those closest to you who suffer most. I've said it before but enduring suffering is far easier than watching ones you love endure suffering. 

I said to my wife earlier that one of the worst days of my life was barging into the chemo suite in Singleton hospital in Swansea. I was afraid I was late to take him home hence the rush. Hence the shortness of the visit and the mirth generated as I stood in the doorway in a dusty, dirty boiler suit having been up a ladder doing stuff 20 minutes earlier. 

I quickly understood the nurses desire to see me elsewhere immediately but even immediate was far too slow to diminish the sight of Paul in the NHS chair, bags suspended and tubes joined into his PICC line.  A sight I shall never forget because a few months earlier I had been there. Typically he found my boiler suited presence more than a trifle amusing. As he understood my anxiety to be there in good time to collect him. What's in an hour anyway?

Dominic Smart put into words what we needed to hear. He said it as it is. The common experience manifest individually. His low point was being sick in a drain in a car park. Mine was being unable to push a fork into a fish finger. Such events force you to confront what we wish we were spared. But we aren't and looking back I find a degree of amusement to be had. I wonder though if our wives look back at these events and see any thing worthy of mirth. Their experience is so far removed from ours but no less conjoined. But theirs will continue long after we have gone. And that is a cause for sorrow, far more than feeling a bit nauseous, a bit sore and a bit tired. Besides I've now got pills for two of those and a reclining chair in front of a pair of speakers for the other.

Dominic Smart, thank you.

New Quay, another place, another lesson. Parked up above their lifeboat house and a delightful wander down to find a Mersey. There can't be many of them left. A wander around the town, then? No. I struggled to get back to the car. Seriously struggled for breath, leaden footed, uncontrollable yawning.

Another moment in which life changed as it dawned on me that I could be struggling to get up Meor hill, let alone Windsor! Another taken for granted part of life gone. Like summer.

Makes you think.

How firm a foundation, you saints of the Lord,

is laid for your faith in his excellent Word!
What more can he say than to you he has said,
to you who for refuge to Jesus have fled?

“Fear not, I am with you, O be not dismayed;
for I am your God, and will still give you aid;
I’ll strengthen you, help you, and cause you to stand,
upheld by my righteous, omnipotent hand.

“When through the deep waters I call you to go,
the rivers of sorrow shall not overflow;
for I will be with you, your troubles to bless,
and sanctify to you your deepest distress.

“When through fiery trials your pathway shall lie,
my grace, all-sufficient, shall be your supply;
the flame shall not hurt you; I only design
your dross to consume and your gold to refine.

“E’en down to old age all my people shall prove
my sovereign, eternal, unchangeable love;
and when hoary hairs shall their temples adorn,
like lambs they shall still in my bosom be borne.

“The soul that on Jesus has leaned for repose,
I will not, I will not desert to his foes;
that soul, though all hell should endeavor to shake,
I’ll never, no never, no never forsake."

Anonymous

Dominic Smart blog:
https://paracetamolissounderrated.wordpress.com/

Life goes on

A year ago Today I walked down a chilly corridor in a single storey outhouse in a hospital car park at the end of which I was made to glow in the dark, so to speak.

This morning my view was far better at the start of the day.

 Looking West from Aberaeron Beach, not quite like most beaches but there's stones and some sand but only at LWS!

Actually, not quite the start of the day as it began with an email from my friend, Terry in NZ who had his Whipple a couple of weeks ago and awaits the start of chemo imminently.

Today we drive some 60 miles and plant crocus bulbs on a hillside overlooking Mumbles Light and lifeboat station. The bulbs will lie directly in front of his headstone the back of which depicts a copy of a tattoo and a verse from the book of Proverbs which sums life up most eloquently.

Today Paul would have been 37.

Once the bulbs are planted we will adjourn to here, Ripples. An ice cream shop on the seafront next door to where he once lived as a student with great friends and even more bikes.

Appropriate, too that the name is on a bike and that his son has developed his Dads liking for ice cream ...... and flakes, of course.

A far better day than a year ago.

We will then drive back to Aberaeron

Not all pain responds to pain killers but life does go on and for that I am thankful.

I must reply to an email. But not tonight.

All at sea

Fowey Lifeboat, O.N.1222 Maurice and Joyce Hardy, Trent Class 14-18, launched on service Monday 10th December 2018 1420.

Didn't think that on Tuesday 20th August 2019 at 2230 she would be launched on service to a position 11 miles south of Fowey to rescue me.

But she was.
And she did.

Thank you.

Resurrection Sunday ......

..... or Easter Day as it is now generally known.

This morning our church service began with our minister stating,

Christ is risen!

to which we replied,

He is risen indeed

Then he stated,

Jesus is the resurrection and the life

to which we replied,

Those who believe in him shall never die.

A year ago about this time of day and in this weather, although a little less warm we stood on a hillside overlooking Mumbles light and buried Paul in Oystermouth Cemetary.

The memory has not dimmed but nor have the words spoken by Steve Levy, Pastor of Mount Pleasant Baptist Church, Kingsway, Swansea. He recognised the sadness of the event but elevated the reality of what we believe. Look around, he said, and see the new life in the grass, the bushes, trees and flowers. New life is what Christians see as the ultimate reality. Paul will be raised because Christ rose again and we who believe will be too.

How appropriate that the first anniversay of Paul's funeral is Easter Day, Resurrection Sunday.

Paul. April 6th 2018

Evening all,
This is likely to be my final blog update. Chemo has officially finished. From the details of the last CT scan it was clear that the chemo wasn't doing what we intended it to do.  I am now at my final earthly abode in Ty Olwen hospice and as 2 Timothy 4: 6b-8 says:  “The time of my death is near.  I have fought the good fight, I have finished the race and I have remained faithful.  And now the prize awaits me – the crown of righteousness, which the Lord, the righteous Judge, will l give me on the day of his return.  And the prize is not just for me but for all who eagerly look forward to his appearing.”
Thanks all for reading.
Paul

Paul. March 14th 2018

Good morning all,
Time for another update. I’ve been slightly ill and it gave us an amazing week! It’s amazing how sometimes God uses things you’d rather not go through to let you have an absolute blinder of a week (well, few days at least). So a few weeks ago while my parents were still staying in their holiday let (gotta love cheap winter rates, was great to have them so close by for a bit!) we decided to do a house-swap for a night. They looked after Boaz and got up with him, we, well, slept! Only it wasn’t that simple… I was feeling a bit odd when we went to bed and sure enough, barely got any sleep. I woke up not feeling much better. Turned out the reason I was feeling so rough was because I had a mild bout of the runs, delightful. Sure enough, after clearing some passageways I felt much better and so got on with the busy task of breakfast – a lovingly prepared porridge (litres of the stuff mind!) by my dear father ready for microwaving, which I duly did. And I have to say, it was awfully nice, lots of jam was involved however the sheer volume beat me in the end. Enjoying my now significantly improved start to the day I thought that it would be good to use the parents TV license (we let ours expire so no live TV, sad times!) and watch some winter Olympics, a delight that I’d rather missed. This was going swimmingly except for a familiar feeling from late last night/this morning that was rearing it’s head again… oh dear. Sure enough, more trips to a small room were required…
Now this was a significant problem because this was Thursday. Thursday was chemo day. Chemo absolutely ruins ones immune system. So you can imagine if you have illnesses which are even a little bit contagious they’re not too keen on having you rock up as per usual… so we phoned, left messages etc and eventually had a phone call telling us to stay well away, which was what we expected. What we did not expect however was that before the chemo could be restarted we had to have another meeting with my (exceptionally over-booked and no doubt over-worked) consultant. This proved tricky as the only time we could be squeezed in was on Monday morning, Monday morning a week later…. So no chemo for a couple of weeks all in and a week ahead with no chemo effects and no hospital appointments… oh what to do?
There is a great charity called the Willow Foundation who organise “special days” for people with serious (read terminal) illnesses between the age of 18 and 40, an absolutely great charity. We’d already had a hotel booked with them for a few weeks later however after a few phone calls and they’d managed to move it to 3 days time! Hurrah! We figured my “issues” would be OK by then (fortunately it was something I ate rather than an illness so I was right as rain the next day) and I should be feeling good having not had Chemo for a while. Right on all fronts amazingly!
To be brief, St Brides hotel is amazing. We had a complimentary room upgrade and had the most fantastic view over the bay (which I was grateful for as I spent a considerable time soaking up the vista between naps, which were plentiful), Jo had use of the spa facilities for 3 days running, often entirely to herself and, quite unexpectedly, Willow had provided us with an £80 (yes EIGHTY!) voucher for food. How much were they thinking an advanced cancer patient could eat?!  😊
When we went down for the first meal and looked at the menu however we realised that £80 would be quite a tall order for a 2 night stay – the food was exceptional but you certainly paid for it! Fortunately due to it being the off season their lower-rate casual menu was available in their posh restaurant so that kept us happy – although I did venture into the gourmet menu once and had the most beautifully cooked steak with some of the weirdest flavours that I’ve ever experienced – far from unpleasant, extremely cleverly done, but I’d not have it again. The steak really was cooked beautifully however it was garnished and marinated in some incredibly strong fish—type flavours which only really worked in the provided “pepper” sauce which had zero pepper in it but a lot of lime (yep, lime).. all of them separately were almost entirely unpalatable, together though were really quite fantastic. Not ideal when you want to dunk your chips in the pepper sauce though! (I’m a simple man…)
Sadly our delightful 2 night stay came to an end, it was utterly fabulous and I was so, so glad we could make it. The wonders of cancer mean that often you have no idea how you’re going to feel from hour to hour let alone for 3 days! Needless to say we were both extremely thankful that my health held out for the duration. Especially because it nose dived after that.
Due to having missed a couple of chemo sessions and my treatment now being on a Monday I had to have my bloods on the Friday. No problem. Until I got a phone call later in the afternoon from one of the senior nurses saying that my blood count really was very low indeed (75, should be north of 100) and that they were working like crazy to get me a bed in the ward over the weekend. This continued for much of the afternoon but no beds were available so I was told if anything, *anything* changed over the weekend that I should ring the 24h number straight away. Nice way to start the weekend!
The few days after St Brides were pretty awful, I figured it was just my body catching up with having exerted a decent amount of energy over those few days so thought little of it. Friday actually wasn’t too bad so when I had the phone call I didn’t think too much of it, figured I was on the up again. Then Saturday rolled around and I realised that “up” was very much the wrong word! Lying on the bed, completely out of breath having done…nothing, well, that was new. After a bit of deliberating my wife kindly told me to stop faffing and ring the triage number, so before long there we were, back in hospital again.
By late afternoon we were on the ward and I was having the first of 3 units of blood dripped into me. It was quite a relief to know that before too long the breathlessness and exhaustion would be a thing of the past, temporarily at least. By some point in the middle of Sunday morning (4am I think) all units had been administered and I was knackered, back to sleep. We were checked over the next morning, had (another) blood test ready for Monday and then free to leave. I have to say I love the NHS!
Monday morning rolled around and it was meeting with consultant time. This was interesting because my blood count, rather than having gone up by 10 per bag had gone up by around 2. I was expected to have a blood count of around 100 and I had 81. Not ideal. When I asked the question it was because the type of cancer I’ve got rather than attacking the organs themselves actually affects the blood vessels within the organs, makes them all a bit leaky. So basically most of this blood I’ve been given has just been leaking out into the myriad tumours that I’ve got floating about in my abdomen, very interesting. Explains why I’m getting bigger when the chemo should be preventing the cancer from growing! The upshot of this was that it was decided to add another 2 units of blood after my chemo treatment that morning.
And that’s when the fun really started.
Chemo was fine, no problems there but as more of the blood was dripped in the pain in my abdomen just got worse, and worse, and worse…. There wasn’t a huge amount of concern at the time but when I got home and things didn’t get better a call to the palliative care doctor was in order. The theory was that due to the increase in blood it in turn increased the pressure on my abdomen causing more of the bleeding which in turn resulted in an increase in pain. Unfortunately until we get the results from the CT scan scheduled in for this coming Monday after my Chemo treatment we’re not going to know conclusively but the doctor was very much in agreement that it all was far too coincidental for it not to be linked.
At least I had the chest drain to help alleviate some of the pressure on my lungs and help with the breathing. So on the Wednesday we trooped back into hospital ready to have a needle shoved in and a load of gubbins drained out. However (there’s always a catch, right?) when the chest chaps had a good look with their ultrasound machine it became apparent that actually there wasn’t much fluid there, barely any in fact. Although they might be able to get a little out the danger of accidentally prodding a lung or a lining or something that shouldn’t be prodded was far higher than any benefit of getting such a tiny amount of fluid out. In fact, both doctors who were performing the procedure agreed that my main problem was that my diaphragm had been pushed up by the cancer to somewhere north of my nipples, a long way from where it’s supposed to be. That greatly reduces the volume that the lungs have to actually do anything which is the primary reason for the breathlessness.
So combined with not being able to cope with much blood (less than a week after having 5 units of blood my count was back down to 70, 5 less than where we started) and my lungs not having much space to actually perform their duties due to the ever increasing size of the organs affected by the cancer it appears that medically, we’re pretty much done. We can’t be sure until we get the results from the CT scan in a few days but it very much looks like there aren’t really any options left other than to let the palliative care team administer painkillers to keep the (not insignificant) pain levels under control (at which they’ve been superb) and to let the oncology team manage the cancer and appropriate blood levels to keep my breathlessness and energy levels as good as they can be.
It feels a little like we’ve been running the race on a running track with lots of corners and obstacles, hurdles and all sorts of unexpected turns. We’ve just turned the last corner and in front of us now is the finishing straight, the tape fluttering in the breeze in the distance. We don’t know how long it’ll take to run the straight, we don’t know if there’ll be hurdles and other obstacles along the way (I’m sure there will be!), but it very much feels like it’s a straight road from here. No more attempts to fix things, just make things as comfortable as they can be before I reach the tape and Jesus takes me home.
I think one of the most amazing things that I can say about this whole journey is that I’m still here. I mean that honestly, the way the cancer has developed and how it has been described by multiple consultants over the last 6 months have all pointed to me not being around at the moment and yet here I am. And I am so grateful for that. It was Boaz birthday yesterday and although I spent more time locked up in bed than I’d’ve liked, I got to enjoy Boaz enjoying his 2nd big day, and let me tell you, it was the best day of 2018 by a million miles, even considering our St Brides holiday. Absolutely brilliant. How has that happened? By chance? Maybe some think so. There are over a thousand people who have been praying for me and my family over the last 6 months, many of them every single day. I have had peace and joy throughout this whole journey. Apart from one occasion in hospital over Christmas I haven’t worried once. I am amazed by God’s goodness that through everything that’s happened I can still enjoy life, albeit in a very limited form compared to what most are used to! And to be able to be a part of Boaz’s birthday has been just incredible. And to add to that the hope I talked about in my last post, I find myself just incredibly thankful for all that Jesus has done for me and my family over the last months. He is a kind, loving and gracious God, and whether he keeps me going here for another few months or merely a few more days I’m content with whatever he brings.
Psalms 73:26 NLT
My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.
Psalms 71:20 NLT
You have allowed me to suffer much hardship, but you will restore me to life again and lift me up from the depths of the earth.
Isaiah 59:1 NLT
Listen! The Lord ’s arm is not too weak to save you, nor is his ear too deaf to hear you call.
Isaiah 51:11 NLT
Those who have been ransomed by the Lord will return. They will enter Jerusalem singing, crowned with everlasting joy. Sorrow and mourning will disappear, and they will be filled with joy and gladness.
Revelation 22:17 NLT
The Spirit and the bride say, “Come.” Let anyone who hears this say, “Come.” Let anyone who is thirsty come. Let anyone who desires drink freely from the water of life.

Paul. February 21st 2018

Afternoon all,
Going to be a long one this week, plenty has been going on! I feel like I should offer a prize for anyone who actually reads this essay to the end, you've more patience than most!
So let’s start with last week; over the last couple of weeks I’ve been getting really rather tired, like, dog tired, no, worse than that, cat tired? It turns out there’s a side effect of cancer/chemo called Cancer Fatigue which almost impossible to explain to anyone who’s never been through it and equally as difficult to deal with if it affects you. I tried to explain it a bit in my post on the 21st of January but didn’t do a great job. So this has been the primary affliction over the last few weeks, the sudden removal of all the batteries, the flick of switch and the body can do no more, the need to go for a nap and sleeping for 5+ hours without there being anything you can do about it. And boy was it getting old. So when I was speaking to the cancer nurse about it during my chemo a couple of weeks back they agreed that a blood transfusion would be a very good thing, so that was scheduled in for the following Wednesday at 0830, ideal (well, a little early but hey, I’m not really in a position to complain!).
So we arrived at 0845 (fashionably late right?) and it turns out we weren’t booked in at all. Nothing in the book. Hmm, problematic. It was spotted by the eagle eyed lead nurse (I’ve no idea what their official titles are so forgive me those in the know!) that I had been incorrectly noted down for the following day, Thursday. This was a problem as Thursday is chemo day. The long and short of it was that the lead nurse moved a lot of bits and bobs to accommodate me and my blood needs for Wednesday, the only immediate problem being that the blood hadn’t been ordered up, and that takes time.
This time thing was a bit of a problem as we had an appointment at 1500 to see the prof and it was quite an important one as we had quite a few questions to ask… but we figured God’s on the throne, he knows what he’s doing and so Jo and I settled down, enjoyed the 5th floor view and spent a few extra hours in one another’s company, all very pleasant.
Anyway, the blood transfusion went well except it obviously started late and then the second unit took twice as long as the first to navigate its way into my being, which meant we missed the appointment with the prof. Which was a problem as there were other problems afoot which I really wanted to chat to him about. As the day went by there were some other quite bonkers events that shone a bit of a light onto some of the ailments of the NHS as it navigates current staffing and funding crisis but the way that through every single issue that arose (and some were serious) the senior staff members continued to epitomise the very term “professionalism” was an absolute privilege to experience, this incredible organisation really does have some of the most amazing people working for it. Anyway, we went home happy at least that I had more red stuff in me than before and hoping that the fatigue that had been plaguing me would be a thing of the past.
But it didn’t quite work out that way. That night was the first where I couldn’t actually keep up with my breathing – I went to bed, lay on my left side and realised that although I was puffing and panting away I couldn’t keep up, my lungs couldn’t force enough of that oxygen stuff into the new red beans and so I found myself getting more out of breath, not less. Anyway, once I was sat up, lying on my back and had caught up with myself sleep lingered a while but eventually kicked in which leads us nicely to Thursday, chemo day…
Prior to every chemo “shot” (I say shot, they’re such small doses with this new treatment it feels like it compared to before!) the nurse always asks how things have been, so I explained. And I explained it all. Everything I wanted to ask the Prof, my breathing issues from the night before, the lack of difference that the blood had made, the extreme tiredness, the lot. To say she was brilliant was an understatement, she got the doctor in to make sure I was fit for treatment, scans were looked at (and painstakingly explained to those of limited brain power such as myself), my consultant was consulted, other teams were contacted, there was a hive of activity from a plethora of (already very) busy medical staff all working to make sure that the needs of my sudden expulsion of cancer related ailments could be addressed in a suitable timescale, I was even offered a bed so that I could be treated faster (inpatient vs outpatient), it really was like anything they could do they would do to get me seen to. Another reason why I will forever sing the praises of the NHS as long as I still have breath – because without them that breath is a lot harder to come by!
So, the outcome of all this was that I was fine to have treatment, I would be seen by the chest team to see about draining some fluid from the outside of my left lung which would give it more space to …. breathe (sorry, sorry) and the nurse herself suggested that 2 units of blood was probably nowhere near enough considering the cancer I’ve got, the treatment I’m on and the various other ailments that have chosen to afflict this poor, failing body that my soul currently calls home. So I’m awaiting to see if they’ll give me another 2 or maybe 3 units to see if that perks me up to a suitable level to enjoy life a little more.
I hope that explains a little to everyone I've been trying to meet up with why it's been a little tricky to do so - I just tend to be asleep!
I Just want to say thanks again to everyone who has continued to pray for us (and I realise that’s an awful lot of you!) – through everything that’s been going on we’ve known complete peace about it all and have managed to enjoy more than our fair share of good times together for which we’re supremely grateful. Specific things you could pray for over the next couple of weeks would be the draining of the fluid on my lung and some more blood. Hopefully those two things should make the biggest difference to me which would be amazing. I also have a doctor from the palliative care team popping over on Friday to see if there’s anything they can do regarding pain relief (sleeping has been a little sore recently) so it would be great if you could pray they’d come up with something to help with that. It’s nowhere near as major as the other things but would help nonetheless.
A verse from the book of Luke was shared with me by a friend this afternoon which pretty much blew my mind. Bear in mind over the last 24 years or so of being a Christian I’ve probably read the book of Luke dozens and dozens of times but for whatever reason I’d never seen this before, and it is just awesome! As a bit of background before I share it, the great hope for Christians is that when this life on our amazing but rather broken planet is done and dusted the Christian doesn’t die – they just change address. Jesus himself on the cross says to the dying thief next to him “Today you will be with me in paradise” – today! The moment your body gives up the ghost the real you moves home to heaven, to somewhere with no more pain, no more tears, no more broken, cancer infested bodies to contend with – just life as it was supposed to be lived in the first place. It’s a pretty awesome hope to have! One of the ways the Bible explains it is that it’s like a wedding, Jesus is the groom and his church (i.e. the likes of me and everyone else who trusts him) will one day have that perfect relationship with no sin/brokenness/etc in the way, and although that relationship happens the moment you become a Christian it’s not until you get to heaven that it all becomes clear and can be lived the way God intended.
And because it’s a wedding there is food. Oh yes! Being someone who has zero self control and has to gorge himself on any edible morsel left unattended I am quite excited about this prospect! The bible describes this immense meal that it calls “The wedding feast of the lamb” – Jesus being the lamb. Now, back to that verse…. Bear in mind that Jesus is the saviour of the world, the one who went through hell for all who trust him, the one who is in complete control of everything that goes on in this universe (hey, he even created it just by speaking) and the one that DELIGHTS in his people, just listen to what he does when the time for the wedding feast rocks up:
Luke 12: 37 – The servants who are ready and waiting for his return will be rewarded. I tell you the truth, he himself will seat them, put on an apron and serve them as they sit and eat!
So it’s Jesus who whacks a pinny on, gets the serving plates and dishes up the (literally best) meal the universe has ever seen to the likes of me, a sinner who decided Jesus knew what was best for his life when he was 11. That’s pretty amazing no? And it’ll be proper food too – there’s nothing metaphorical about it, new bodies that won’t ever get ill, a physical place, proper food cooked and prepared and proper satisfaction at eating something a 3 star Michelin chef could only dream of (and I bet there’ll be a few of them there too!).
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I find as a follower of Jesus, when you look at what he promises is to come even the darkest days here on earth don’t seem quite as bleak, don’t seem quite as desperate. I’ve had a few of those days and believe me, those days suck. People ask me how I cope, and in one sense it’s pretty straightforward. When I became a Christian I asked Jesus to run my life and to give me help. And he did. What do I do now? I ask Jesus to run my life and to help. And he does. One of the ways he helps is to remind me of what’s to come, the glory that’s coming, that one day all pain will cease, the constant discomfort will seem a distant memory, the constant battle to live a life following him when you’re surrounded by a society that pretty much universally hates Jesus and those who stand for him – it’s going to end. “Look at what’s coming” he says, “it’s worth the pain and I’m using your hardship to achieve things you don’t know the half of yet!”.
Having lived a “normal” life with job, house, family, wife etc as well as being plagued by incurable cancer and being not a huge distance from the end of my earthly tenancy, being a Christian has been the most incredible thing I can imagine. To know guidance on how to live from the author of life, help in work from the one who specifically placed me there, to know hope in the face of death which isn’t far off, to know not even the very best that can happen in this world can even come close to what awaits me once Jesus calls me home… I am content with my lot.
And my lot is to suffer from cancer and die.
And have my address changed to somewhere with no pain, suffering or hardship with life lived as it was supposed to be in the first place.
And have the loved ones who know Jesus follow me there when Jesus calls time on their lives.
I’ll take that.

Paul. February 1st 2018

Good afternoon all,
So having just had round 2 of the latest batch of treatment I thought it was probably a good time to put a quick little update together for you all.
The effects of the chemo last week were interesting, Thursday immediately after the treatment was a case of sleep all afternoon and most of the evening, generally not feeling too bad. Then Friday arrived. Friday was, well, not good. At all. Worst day I’ve had thus far I would say, really not pleasant effects and I was out of it for much of the day. After that however it was back to a bit of good day / bad routine where the bad days were largely defined by exhaustion and sleep and the good days with much less tiredness. Both good and bad had a distinct lack of a chemo-y feel about them though which was a very well received change, tiredness on its own isn’t such a bad thing after all.
The slight trouble with that was that it wasn’t entirely just tiredness on its own. Somewhere along the road I’ve picked up a cold (I blame Boaz personally  ) and that is starting to wreak some havoc – don’t get me wrong, I’m not expecting to be back in hospital again with it but it’s causing far more issues than the chemo is at this point, preventing sleep and so on. Delightful. Because the chemo knocks out the immune system even mild colds can prove rather unpleasant and this one has been hanging around for weeks now. If those of you inclined to pray could do just that and ask that this cold would clear out of my system soon I would greatly appreciate it – even being told that I could have basic cough lozenge things today was a big relief (you’ve got to be so careful what other drugs you have when you’re on chemo, bonkers) so at least that should lighten things a little, would be good to get shot of it though.
So all in all, I’m not really sure what this week will bring. I’m not feeling the swell of exhaustion which brought on last Thursday’s afternoon sleep so maybe things will be a little mellower this week, we’ll see. The big ask with this new treatment is that I would actually improve, that my quality of life would increase and that the cancer wouldn’t just be stopped but that it would start to reduce a little. We know the treatment cannot cure it but it has reduced the spread in other patients which is what we’re aiming for (I think! My memory is not something to envy and my PA is absent…!).
Having said all that, this week has been a little…tricky. The cold has been probably significantly more problematic than I made out above, the tiredness has been pretty extreme and combine it with the ever present effects of cancer/chemo and things have been hard. However, one verse in particular has really helped provide a little perspective on things:
2 Corinthians 4:17 – For our present troubles are small and won’t last very long. Yet they produce for us a glory that outweighs them and will last forever!
I know that God is using this period of my life to do amazing things, to encourage people, to show off how great he is, to reach people with a message of hope even in the darkest places who have never heard such things before – but it is solid because I don’t see it most of the time, I’m perplexed and sometimes overwhelmed by the now. It’s good to be reminded that as a Christian I know that one day God will call time on my life, these things won’t last long (genuinely, what’s a few months in the grand scheme of things?) but the results of them – they’ll last for ever! God has a plan and he’s working it out. He loves people and somehow, I don’t know how, he’s using cancer, 3 different types of chemo and some cough sweets (amongst one or two other things I’d imagine!) to reach out and encourage, save, build up and help people through what he’s doing in me.
Mind. Blown.
It’s quite something to know even the darkest paths Christian’s walk have purpose that God is using for the good of his people. It’s been a tough week but truths like this really, really, help.

Paul. January 24th 2018

Good afternoon all,
So it seems there are quite a few eagle eyed of you that spotted in the last update that I had a meeting with my consultant – frankly I’m amazed that many of you even pay attention to what I write!
Anyway, leading up to the meeting I had generally been feeling pretty grim and the chemo had been heavy. Nice combination. So in light of that it was actually quite a relief to be told that the chemo I’ve been on has basically achieved nothing other than making me feel decidedly sub-par. So, onto plan B. More on which shortly.
When we first had our meeting with the consultant back in Exeter way back at the very beginning of November we asked roughly how long he expected me to survive. His answer was *if*, and only if the chemo worked, perhaps up to 12 months could be possible but this was very, very unlikely. If the chemo did not work, a couple of short months should be what we plan for. The idea confirmed that it we should not expect a happy Christmas and probably not much merriment over the New Year either for that matter.
When we first saw Professor Wagstaff upon coming back to Swansea on the 4th of December we asked the same question and had the same answer, a couple of months.
Today, the 24th of January we asked the same question. A couple of months. Now this may well be a default response to this sort of question, preparing the patient for the worst while allowing leeway in case progress is better than expected, either way, we’re a long way past our initial estimate of Christmas, albeit the effects of the cancer are doing a good job of becoming more and more pronounced as we trundle along. I am so thankful that as we go deeper along this journey God continually gives us a little more time. I am so grateful to have had this time to be able to spend with the incredible family that God has given me who I love so much – to celebrate Jo and I actually went to the cinema for the first time in, er, possibly years this afternoon (saw “The Post” – absolutely superb film, well worth a watch). Now I know this time will be exhausted at some point but again, God speaks truth that gives great confidence in my time left here:
Job 14:5 - You have decided the length of our lives. You know how many months we will live, and we are not given a minute longer.
I know that God has planned my life from the beginning and he knows exactly when he’s going to promote me to Glory (read that in an obituary!). Means I don’t have to worry about it though, another thing he looks after on my behalf.
Anyway, Plan B: there is an experimental drug combination which is becoming more mainstream that has primarily been developed in France over the last few years. Indeed, when you start reading about it and some of the scientific journals that the treatment process has been published in (yes, my wife is pretty much incredi-woman) they conclude with lines such as “This could be the greatest step forward in treating angio-sarcoma (what I’ve got) in decades”. My consultant also said when asked that most patients have zero side effects. None. Encouraging.
So yesterday I started the new treatment. There are two different chemo drugs as well as some beta blockers that I have to take twice a day. Turns out that the chemo drugs are a little different to what I’m used to, they only take a few minutes to infuse, one 10 minutes the other about 3-4 in syringe form, however in both cases the cancer nurse had to sit by me, watch me like a hawk and if there was *anything* that felt wrong, different or otherwise not normal I was to tell her immediately and the treatment would stop. Apparently it’s pretty beasty stuff.
Then came the second chemo drug in the form of a liquid in a syringe that was injected into the saline solution being pumped through my PICC line. I didn’t ask any questions but it is a bit unnerving when your cancer nurse puts on proper safety specs before even going near the syringe… goodness knows what those two drugs are doing to my innerds but it seems they’re pretty potent things.
One thing I was incredibly grateful for was that I didn’t react to the new treatment, most of you are by now aware how useless my body is when it comes to this sort of thing so I was rather relieved when all was said and done and I could go home – bodes well for the rest of the treatment. Having said that I did get home and sleep for the rest of the afternoon, goodness knows what was going on in there but it properly knocked me for 6!
An interesting side note to my earlier point about life expectancy… the full response from the Prof was something along these lines “Yes, still looking at two months or so….” So far so normal… but then he continued “…unless the new treatment works in which case that could change things entirely.”
Entirely.
When he said that I was struck, I may have a significant increase in the time I have left on this planet to spend with a lot of wonderful people. But the cost is getting higher daily; when was the last time I had a full day where I felt just OK? How about a morning of more than 3 hours? Do I really want to be kept alive for months while feeling evermore like an oversized turd?
There is a song, the first verse goes:
“I am not skilled to understand
What God has willed, what God has planned
I only know at his right hand
Stands one who is my Saviour”
I do not know what God will do in my life, I do not really understand what is going on. Do any of us understand everything that happens to us, why we say certain things, why we behave the way we do sometimes, why we get ill, why we face horrendous suffering? All I know is that there is a God in heaven, he is described as love, he delights in me (and you for that matter, ever thought about that?) and he saved me when I called out to him (at the foot of the spare bed in my grandparents house when I was 11 if you’re interested), and at his right hand is the one who took all my pain, all my wrong, all the things I’ve ever done that fall below his standard of perfection. And he replaced them all with his perfection. I am clearly not perfect, you guys know me! But he forgives everything wrong I do, and as a result from his perspective, I’m perfect. Pretty mind blowing. He is my saviour, the one who gives life to the full and I will trust him, because he *does* know what is going on in my life. He *does* understand the illness I have and one day he will call time on my life here. And then I will see him, face to face. No more cancer. No more pain. No more suffering. Life as it is supposed to be, lived to the full.
So I don’t know how long He’ll keep me alive, whether I’ll continue to feel rubbish or if the new drugs will improve things, but I also know that isn’t for me to worry about – he’s got it under control, he knows what he’s doing and even though things are getting tough now I have even more reason to leave all these things in his hands and make the most of every day he gives me.
Which is a relief!

Paul. January 21st 2018

Hi all,
Thought it was about time for another update, keep you up to speed with what’s happening in Perkin Chemo Land…
So, this is the end of week 2 / start of week 3 and it’s been mighty strange. Tiredness doesn’t cover it really, nor does really fatigued but at the same time I’d not say I was utterly exhausted, somewhere between the two. Somewhat irritatingly too this can come out of the blue. Take last Monday (I think?) as an example, woke up relatively early (like 7am or something), felt pretty good, took my pills, made myself porridge (for the first time in my 35 years on this delightful planet) and was planning to go for a gentle walk (read drive on a rather underpowered scooter) with Boaz and Jo, lovely. Shortly after breakfast I said to Jo I needed a bit of a nap and woke up at 1:30pm. What is going on there?! I have to say more than most things that really got on my nerves, your body conning you into thinking a nice normal morning was on the cards only to dash your hopes at the last minute by being useless. Ah, the joys of chemotherapy! Fortunately this was a very short lived phase so my sanity wasn’t completely ruined…
Other than the copious amounts of sleep (often out of the blue) it’s actually not been too bad a week. There were a few days between week 1 and 2 which were great, got lots done etc, but this week has been mostly spent doing very little. The last few days have felt like being dragged out of the sleep induced chemical coma back to something slightly more normal but I’m still getting out of breath ludicrously quickly, par for the course I think. Yesterday (Saturday) was a great day, finally actually got out on the scooter, made it to within a whisker of Verdi’s before the wind arrived and so we battled the biting cold back to the parents rented house on the mumbles waterfront (as you do). Boaz enjoyed a few episodes of fireman Sam while Jo and I warmed up before heading home to a cosy woodburner an hour or so later. Delightful. Earlier in the week we’d enjoyed a delightful night seemingly a world away amid the endless glamour of the costa-del-Aberavon, the rain leaving red holes in the back of your head, the wind screaming through the security fencing, ah, nothing like it. Fortunately the hotel was not only waterproof but windproof too and so we enjoyed a quiet few days away from baby monitors and a kitchen, unbroken sleep and letting other people cook, very pleasant. Dare I say it though, 1 night away from home and we’d both missed the boy, his tantrums and all, gluttons for punishment the pair of us.
I think the next few days are going to be as good as it gets so we’re going to try and make the most of them, it does all rather depend on the random nature of what chemo brings though, hopefully a bit of consistency for 4 days…. I fancy I’m being a touch optimistic on that front though. On Tuesday I’ve got bloods ready for chemo on Thursday and then a meeting with the Prof on Wednesday. That will be an interesting meeting as he now has another up to date CT scan from last week so he’ll have a good idea on how the cancer is spreading, how fast, and perhaps a better idea of how long the Lord is going to give me before calling me home. We’ll wait and see on that one. I’ll try and pop another update together late next week once we have some more info for you.
Again I just want to thank everyone for everything they’re doing. I can’t praise the people who have made us meals enough, I’ve eaten delightful bolognaises, fantastic curries, pies of almost all size and variety and I thank each and every one of you who has taken the time to make those and the myriad other meals I haven’t mentioned – Jo and I really do appreciate it more than we can say. I also want to say a mahoosive thank you to those who just relentlessly continue to pray, and I know there are hundreds (thousands?) of you out there – thank you so much. Even when things have been pretty grim over the last few weeks to have that assurance that not only is Jesus with me but he knows my every need and is intensely interested in everything I go through is incredible. To have such peace when you’re awake at 3am (again!) and are able to pray about people, situations, etc that people have mentioned is such a privilege; I can’t ever remember being so at ease and having such peace so consistently for such a long period of time even though things have been hard – that’s because you’ve all been praying and I thank you immensely. Please keep at it – and if you could find a few extra minutes to pray for my parents as well I would greatly appreciate it, they’ve been incredible but what a trial to go through, the Lord is asking a lot of them and they need his help to be able to have that same peace and joy as they go on consistently looking after and supporting the three of us.
Finally I’ll leave you with this verse that has stuck with me for the last few weeks. I’ve read it probably dozens of times before but it’s never stuck in my head like it has this time:
Proverbs 20:24 (in the NLT):
“The Lord directs our steps, so why try to understand everything along the way?”
It is so tempting to try and think about why I’m going through what I’m going through, why there is injustice, why things go wrong when we least need them to etc etc. The thing is Jesus knows, he’s planned this out from before the beginning of time and with very good reasons, who am I to argue with God?! I’m quite happy to just trust him and lean on him for the help he gives every single day. We know that sin has right royally screwed up this entire world, we know that the reason things go wrong is because we chose to ignore God and try and run the joint our way, the joy of trusting Jesus is that as a Christian I know that he’s already written the story of my life, it’s the best story for me and as long as I trust and follow him it’ll work out for the best, even if it really doesn’t feel like it sometimes. The job I’ve got to do is look to him, take one day at a time, don’t worry about tomorrow and enjoy everything that’s he gives every single day. And he gives a lot. For the things that are hard he offers huge help, peace, guidance and reassurance. That’s not to say it’s easy, but it’s a whole bucketload easier than doing it on your own. Jesus says in Matthew:
“Come to me all who are weary and burdened and I will give you rest”
I know the time for rest isn’t here yet (it’s coming!), but the burden of going through cancer is most definitely lifted with Him on your side.
Jesus says in John 10: “My purpose is to give them a rich and satisfying life”
That’s something that not even cancer can ruin.
Cheers all!

Paul. January 11th 2018

Hi all,
Apologies for the lack of updates recently, life happens and all that. So, to very briefly bring you up to speed…
Christmas week was a little different than planned, I spent a week in hospital with an infection which was particularly unpleasant (the infection rather than the hospital I might add!) however they did deem me well enough to grant a day pass for Christmas day, boxing day and the day after that which was great. Christmas was awesome, we had both sets of grandparents as well as my sister up and it was great to have everyone together at Christmas for the first time. Boaz enjoyed himself too which was a bonus as it gave us hours of amusement.
It was interesting actually, I felt utterly awful pretty much the whole time and yet there was so much to enjoy over those few days that I barely remember the bad bits, funny how even when things are really not going well God can give great things to enjoy. I enjoyed it immensely I have to say  😊
Post Christmas led to chemo a week ago today which went well, but good grief it knocked me out his last week. Horrible week. But, here we are a week later and one is hoping he’s over the worst of it. Yesterday I even managed to get the inaugural journey in on the new mobility scooter! (I say new, it’s very much refurbished but new to us…). Was a great laugh, made me realise what a cushy ride Boaz gets, it was such a doddle, just push a lever and you’re effortlessly propelled along the sea front, enjoying the views, enjoying the conversation, very nice. I was slightly (read very) disappointed that you just could not get it to wheelspin on gravel, no chance of a powerslide anywhere and my word, so slow! I was at least expecting a bit more than walking pace, oh well. Anyway, it was all going swimmingly until I noticed the burning smell and the dear wife informed me that there’s smoke coming out of the back of it…! So it seems I can’t even ride a mobility scooter without setting it on fire, typical! Fortunately we purchased it from a great guy running a business out of Martyn Ashton’s old hunting ground so he’s going to take it back and sort it out for us, lovely. See if I can make the new and improved version last more than 15 minutes… ha!
So on the whole things are OK overall, we’ve been blessed with a great Christmas, family have been utterly incredible (and continue to be), each day we find things to enjoy, things that bring us joy amongst the exhaustion and rubbishness and now we’re finding that we hope we’re coming out of the other side of the worst of the chemo effects. The trouble is, you never really know so we’re just making the best of each day.
That’s the main reason I’ve not updated this blog thing for so long, I sat down to do it last week and my brain just said “no!” and that was that. Good to be feeling in my right mind again for once, let’s see how long it lasts!
I trust you’ve all had a great Christmas/New Year, have caught up with family and friends and had a great time during the break. I’ll try not to leave the next update so long!
Cheers all!
Paul

Paul. Decemberv14th 2017

Hi all,
Short update today: saw the prof on Monday and was put on a different type of chemo, the same drug just presented differently and formulated specifically for lightweights like me that react to the normal treatment.  Well, today it was administered with no effects at all and one is extremely happy!  Massive answer to prayer so thank you to all who prayed.
One of the differences with this treatment is that it is administered on a 3 weekly cycle rather than weekly, which means I’m not in hospital again until January!!  Hopefully the initial effects of the chemo will have worn off for the 24th/25th but hey, we’ll wait and see about that!
It was good to chat to the consultant on Monday, we asked the question about life expectancy and to be reminded that we’re talking longer than weeks but certainly no longer than months brought it home again that actually what I have is serious, what the following weeks and months will bring won’t, on the whole, be great and we know the outcome isn’t what, in our heart of hearts, we would much prefer.  It also reminds us that the only way to find joy, the only to find peace and contentment as we’re facing this is to keep trusting Jesus, that his plans really are perfect, that his reasons really are bang on, even if we find it hard sometimes.

We’ve been reading Psalms recently, a couple of verses that I just find incredible:
Chapter 34, verse 19:  “The righteous person faces many troubles, but the Lord comes to the rescue each time.”
Chapter 32, verse 8:  “The Lord says, “I will guide you along the best pathway for your life.  I will advise you and watch over you.””
Chapter 4, verses 6-8:  “Many people say, “Who will show us better times?”  Let your face smile on us, Lord.  You have given me greater joy than those who have abundant harvests of grain and new wine.  In peace I will lie down and sleep, for you alone, Lord, will keep me safe.”

Let me say this, I am not and have not been worried about anything that is happening to me.  I lie down and sleep in peace without being anxious or stressed because I know God will keep me safe.  These verses aren’t just token nice phrases, they are truths that mean I really do know God guides me and protects me.  Being a Christian is awesome!
Thanks to everyone for your continued prayers, lovely messages and comments.  I don’t have time to reply to them all (sorry!) but I read all of them and really appreciate them.
Until the next update......
Cheers!
Paul

Paul. December 10th 2017

Hi all,
Been a bit quiet on the update front for a few weeks, sorry about that! "Rollercoaster" is a good way of describing things, we're gradually learning that trying to plan *anything* when cancer and chemo are involved is a fruitless pastime and so here we find ourselves a few weeks down the line with a lot of water having passed under the bridge. The key moments for you:
So almost two weeks ago we came back to Swansea, initially just for a "holiday" for a few days in the house but that quickly changed when we discovered that all my treatment had been moved up here too! So we're now permanently in Swansea which is just amazing. In the intervening two weeks I've had an overnight stay in hospital, a move of GPs, and more things that I can't remember! In fact I'm just going to skip to the important bits as my brain ain't what it used to be (which is worrying as it never used to be up to very much anyway!).
So, I went in for Chemo last Tuesday. The issue with that was that the Swansea team weren't aware that I'd had a reaction to my chemo the last time out in Exeter! Not a problem, I was sent home with some anti-reaction pills and the whole process started again on Thursday. (Including a LOT of steroids, I was totally expecting to be superman for 3 days but nothing happened, gutted!) It's funny how different hospitals run their various departments, Swansea is excellent but is also utterly different to Exeter which took a bit of getting used to. So I was hooked up to the pump and the pre-meds were sent in which were quickly followed by the normal chemo treatment...which was also quickly followed by the now obligatory reaction to the chemo. Joy! Cue a whole load of medical professionals, oxygen mask, a flurry of questions, pagers and so on - which was quite surreal as although my abdomen wasn't enjoying things the rest of me was completely calm and at ease so it was quite impressive to see all these people calmly, professionally doing exactly what they needed to do to get me back to normal. For those of you who are interested, it was a completely different reaction to before, I recognised my kidneys catching fire but they were extinguished almost immediately and my core was unbelievably uncomfortable for about 20 minutes or so, not pain per-se but just
extremely intense discomfort. All a little strange.
Anyway, once the immediate requirement of getting me back to normal had been completed the additional medical staff melted away to where they were needed most, my nurse continued unplugging all my appendages - interesting story here, when my nurse was in training she lived in a shared house, upstairs room. In the room directly beneath was a chap called Paul Perkin who hadn't seen her since the day he moved out about 12+ years ago...! I recognised the face but when she introduced herself I couldn't quite believe it to be honest! Another example of God going before you reassuring you that he knows what he's doing, these little "coincidences" providing comfort and reassurance that this really is all planned from long ago and that God's purposes and plans for our lives are well made, perfectly timed and bring great peace
even through situations that we find, in this case at least, a little tricky. There's a great verse in the book of Isaiah from the bible
that says:
Isaiah 14:24 - The Lord Almighty has sworn, “Surely, as I have planned, so it will be, and as I have purposed, so it will happen.
Everything I'm going through and therefore many of those I love has been planned and is for our good, in this case the outcome is that clearly this treatment wasn't the one for me and so it's all gone back to my consultant whom I'm seeing again on Monday morning, a little quicker than he'd have liked to have a catch up I'm sure!
This seems a particularly good moment to digress for a second or two; when we were down in Exeter there was always the thought in the back of my mind of "Will the treatment in Swansea be as good as we've had here?", "Will it all transfer correctly?" etc etc. Well, when I was taken in overnight last weekend the consultant who was looking after me asked me after whose responsible care I was under, when I replied "Prof Wagstaff" a small gush of recommendation almost involuntarily rolled across the ward, a good sign I thought. When she came back later she told me how her father, a long time Swansea consultant was also going through chemo under Prof Wagstaff and it was his strong opinion that he was the best consultant he had ever had the pleasure of coming across. Funny how when you're in the middle of something a little unpleasant (who likes being tucked up in hospital due to crazy abdominal pain?) God just reminds you that he really does know what he's doing, that he's absolutely got your best interests in mind and that you really don't have to worry about anything... it also turned out that because I needed a CT scan and XRAY over the weekend when we did see Prof he had absolutely everything he neeeded for an up to date
view of what was going on with me. All of a sudden my overnight stay that came out of the blue looked a lot more like it had been planned an awfully long time ahead...
Anyway, back to it. So I'm off to see Prof on Monday morning where I'm sure he'll have a plan for what's to happen next, as for us at the moment we don't have a clue! We wait to see which direction we take on this road of life next, what joys God will bring as well as which pains. Once we find out I'll try and get another update up in slightly faster time than this one...  :)
Thanks all!