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
Saturday, April 20, 2019
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.
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!).
---
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.
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!).
---
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.
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!
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!
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
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
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!
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!
Paul. November 24th 2017
Afternoon all, time for update number 2. So this week was the final bout of chemo for this round, 5 rounds left to go if all goes well.
It all started very much the same as usual, we got to Cherrybrook ward 20 minutes early and enjoyed reading the plethora of magazines dotted about the place. They'd had quite a few emergencies come in which had put us back about an hour or so but that was fine, Jo had the ever present supply of sugary refreshment which helped pass the time nicely.
Got in and settled in my usual bed for about 1pm or thereabouts, just in time for a free egg roll and biscuits, marvellous. I was then duly hooked up to the pump and the concoction of pre-meds was pushed through my PICC line and I looked forward to the usual extreme drowsiness which follows being given IV piriton...
So, with drowsiness well and truly set in the chemo bag was rigged up and so commenced week 3 of chemo. So far so normal. A nice doze for an hour while you're pumped full of super-aggressive drugs, lovely. Trouble, was, after 15 minutes or so I went bright red, my kidneys felt like they were desperately trying to make a break for it, hot flush doesn't even begin to cover that side of things and it felt like I was having one massive stomach cramp... apparently a pretty common reaction (with classic symptoms). The pump was stopped and I was assured that in a minute or two it'll disappear just as quickly as it turned up. Which it did. Took me a while to come back to planet earth however! Once the heat and aches had decided that they'd had enough we started again at 50% flow and everything was grand, the fatigue kicked in and sleep rocked up in a very timely manner to see me through to the close of play.
Apart from that there was nothing else of note, felt fine leaving and the next day I even drove the car for the first time in about 6 weeks! A nice walk was had at Topsham, Boaz had his first Maccy D's and a nice nap took up the rest of the day.
Then came Thursday. Or rather, didn't come. I woke at some point needing anti sickness pills rather urgently, which were duly delivered (along with the other members of the current conglomerate of drugs that is due at that time of day) and a very brief breakfast was eaten. That's all I remember until some point in the afternoon when I vaguely recall a tomato soup appearing with buttered bread - lovely! Trouble was I was no further than 1/4 of the way through the soup when the taste buds decided that hey, this wasn't soup, it was used engine oil. Metallic and bitty. Delightful. The day disappeared again after that only to make a slightly more than fleeting appearance at Boaz' bath time (7ish) where a delightful little man laughed a great deal (which really rather made what little of my day I'd seen) and was followed by chicken and chips with some veg thrown in. Very lovely. Struggling to stay awake, bed was calling and sure enough the day drifted off again.
That was my first proper "chemo day". I'd heard about it, my dad had told me about it, the nurses had talked about it, but the first time you go through it it's a big of a shock. Everything felt utterly exhausted from my fingers to my deepest organs. Really, really odd. Even the smallest objectives (rolling over in bed for instance) took not a small amount of planning, consideration and a whole load of "psyching up". The effort involved to get up to see Boaz was beyond anything I'd had to do at all in the last 6 weeks and that by a considerable margin.
Now, here were are on Friday and, apart from a little brain delay (it's still catching up poor thing) everything is largely normal again.
All in all a very strange week. And to know that chemo is cumulative and there are another 15 infusions to go, delightful...
Although we're only a day on, I'm struck by the thing that i remember most, the thing about yesterday that has stuck in my mind way above and beyond anything else... was seeing and hearing Boaz laugh in the bath. It's funny how when God puts you through trials, difficult days, there is always something delightful to focus on. Sometimes it takes a bit of looking, other times it's staring you straight in the face and you can't possibly miss it. To be frank, I'm not particularly looking forward to more chemo days like yesterday. But, knowing that God is running my life, that he's doing what's best and that his promises hold true no matter what happens is a massive comfort. Especially when they include promises like:
"Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you, he will neither fail or abandon you" --Deuteronomy 31:8
So, the one who made me, who keeps me, who does what's best for me, who went through hell itself for me will be there in the middle of whatever I'm going to go through. He'll never leave me, never fail me. That's pretty encouraging, no?
It all started very much the same as usual, we got to Cherrybrook ward 20 minutes early and enjoyed reading the plethora of magazines dotted about the place. They'd had quite a few emergencies come in which had put us back about an hour or so but that was fine, Jo had the ever present supply of sugary refreshment which helped pass the time nicely.
Got in and settled in my usual bed for about 1pm or thereabouts, just in time for a free egg roll and biscuits, marvellous. I was then duly hooked up to the pump and the concoction of pre-meds was pushed through my PICC line and I looked forward to the usual extreme drowsiness which follows being given IV piriton...
So, with drowsiness well and truly set in the chemo bag was rigged up and so commenced week 3 of chemo. So far so normal. A nice doze for an hour while you're pumped full of super-aggressive drugs, lovely. Trouble, was, after 15 minutes or so I went bright red, my kidneys felt like they were desperately trying to make a break for it, hot flush doesn't even begin to cover that side of things and it felt like I was having one massive stomach cramp... apparently a pretty common reaction (with classic symptoms). The pump was stopped and I was assured that in a minute or two it'll disappear just as quickly as it turned up. Which it did. Took me a while to come back to planet earth however! Once the heat and aches had decided that they'd had enough we started again at 50% flow and everything was grand, the fatigue kicked in and sleep rocked up in a very timely manner to see me through to the close of play.
Apart from that there was nothing else of note, felt fine leaving and the next day I even drove the car for the first time in about 6 weeks! A nice walk was had at Topsham, Boaz had his first Maccy D's and a nice nap took up the rest of the day.
Then came Thursday. Or rather, didn't come. I woke at some point needing anti sickness pills rather urgently, which were duly delivered (along with the other members of the current conglomerate of drugs that is due at that time of day) and a very brief breakfast was eaten. That's all I remember until some point in the afternoon when I vaguely recall a tomato soup appearing with buttered bread - lovely! Trouble was I was no further than 1/4 of the way through the soup when the taste buds decided that hey, this wasn't soup, it was used engine oil. Metallic and bitty. Delightful. The day disappeared again after that only to make a slightly more than fleeting appearance at Boaz' bath time (7ish) where a delightful little man laughed a great deal (which really rather made what little of my day I'd seen) and was followed by chicken and chips with some veg thrown in. Very lovely. Struggling to stay awake, bed was calling and sure enough the day drifted off again.
That was my first proper "chemo day". I'd heard about it, my dad had told me about it, the nurses had talked about it, but the first time you go through it it's a big of a shock. Everything felt utterly exhausted from my fingers to my deepest organs. Really, really odd. Even the smallest objectives (rolling over in bed for instance) took not a small amount of planning, consideration and a whole load of "psyching up". The effort involved to get up to see Boaz was beyond anything I'd had to do at all in the last 6 weeks and that by a considerable margin.
Now, here were are on Friday and, apart from a little brain delay (it's still catching up poor thing) everything is largely normal again.
All in all a very strange week. And to know that chemo is cumulative and there are another 15 infusions to go, delightful...
Although we're only a day on, I'm struck by the thing that i remember most, the thing about yesterday that has stuck in my mind way above and beyond anything else... was seeing and hearing Boaz laugh in the bath. It's funny how when God puts you through trials, difficult days, there is always something delightful to focus on. Sometimes it takes a bit of looking, other times it's staring you straight in the face and you can't possibly miss it. To be frank, I'm not particularly looking forward to more chemo days like yesterday. But, knowing that God is running my life, that he's doing what's best and that his promises hold true no matter what happens is a massive comfort. Especially when they include promises like:
"Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you, he will neither fail or abandon you" --Deuteronomy 31:8
So, the one who made me, who keeps me, who does what's best for me, who went through hell itself for me will be there in the middle of whatever I'm going to go through. He'll never leave me, never fail me. That's pretty encouraging, no?
Paul. November 18th 2017
Afternoon all, thought it was about time I put some updates on Facebook about how life's going at the moment, I know lots of you have been PM'ing me and texting etc asking for updates.
Basically for those that don't know I've been diagnosed with what is most probably angio sarcoma, an aggressive type of cancer which has a poor prognosis because by the time the symptoms are making themselves known the point of no return has long since been passed. Unfortunately that's also true of my case, I've started chemo (week 3 on Tuesday!) but it's very much to try and stop the spread of the cancer rather than cure it and at this point it's too early to say how effective it's being. If it works well and the cancer responds to the treatment then I could well be around for another 10-12 months, obviously if it doesn't respond well then that's another matter!
I'll hopefully get my act together from here on and start posting some fairly regular updates for you all, one thing that has been just utterly incredible has been how so many of you have been praying for us and the effect that's had on our lives recently. To be able to be confronted with your own death and to confidently be able to say "Death, where is your victory? Death where is your sting?" has been incredible and is down to so many of you praying. In fact I've not been worried about anything throughout the whole thing, I know that God is in charge, he knows what he's doing, his timing is perfect and as a Christian I really don't have anything to worry about - Paul reminds us in Philippians 1 that to live is to live for Jesus and have his help, guidance and comfort every day of my life, but to die and be with him in glory - well that's better by far! (Phil 1: 20-24)
To give you a little chemo update this week, (sorry for not replying to so many of you, I'm a bit whatsapped out!!) it's been amazing! I've been waiting for chemo brain to kick in and, well, it hasn't - my sleep has been all over the place but I've actually been perky for much of the week, marvellous! We'll see what week 3 brings on Tuesday.
So to conclude this slightly all over the place post, to those that are praying: THANK YOU, to those who have sent messages and the kindest of words: THANK YOU. Even though we're going through what could be described as a beast of a trial at the moment we know so much blessing, so many happy moments, so much reassurance, so much love from so many and the knowledge that God absolutely adores his people, he loves us beyond words and let me tell you, because of that I can face whatever tomorrow brings without fear or trepidation because my life and those of those I love around me are kept safe in his hands. It is just incredible to go through times like this as a Christian.
I'll update soon, cheers all!
Basically for those that don't know I've been diagnosed with what is most probably angio sarcoma, an aggressive type of cancer which has a poor prognosis because by the time the symptoms are making themselves known the point of no return has long since been passed. Unfortunately that's also true of my case, I've started chemo (week 3 on Tuesday!) but it's very much to try and stop the spread of the cancer rather than cure it and at this point it's too early to say how effective it's being. If it works well and the cancer responds to the treatment then I could well be around for another 10-12 months, obviously if it doesn't respond well then that's another matter!
I'll hopefully get my act together from here on and start posting some fairly regular updates for you all, one thing that has been just utterly incredible has been how so many of you have been praying for us and the effect that's had on our lives recently. To be able to be confronted with your own death and to confidently be able to say "Death, where is your victory? Death where is your sting?" has been incredible and is down to so many of you praying. In fact I've not been worried about anything throughout the whole thing, I know that God is in charge, he knows what he's doing, his timing is perfect and as a Christian I really don't have anything to worry about - Paul reminds us in Philippians 1 that to live is to live for Jesus and have his help, guidance and comfort every day of my life, but to die and be with him in glory - well that's better by far! (Phil 1: 20-24)
To give you a little chemo update this week, (sorry for not replying to so many of you, I'm a bit whatsapped out!!) it's been amazing! I've been waiting for chemo brain to kick in and, well, it hasn't - my sleep has been all over the place but I've actually been perky for much of the week, marvellous! We'll see what week 3 brings on Tuesday.
So to conclude this slightly all over the place post, to those that are praying: THANK YOU, to those who have sent messages and the kindest of words: THANK YOU. Even though we're going through what could be described as a beast of a trial at the moment we know so much blessing, so many happy moments, so much reassurance, so much love from so many and the knowledge that God absolutely adores his people, he loves us beyond words and let me tell you, because of that I can face whatever tomorrow brings without fear or trepidation because my life and those of those I love around me are kept safe in his hands. It is just incredible to go through times like this as a Christian.
I'll update soon, cheers all!
Friday, April 19, 2019
Not such a Good Friday
Good Friday.
I can't remember last years Good Friday and really today has been a lovely day, warm, sunny, calm and dry. Visitors for coffee, visitors for tea even bringing a (quite large) boot full of logs, phone calls from friends, too. General pottering about avoiding any form of road travel as this is a more popular area to visit than the roads can cope with but normality will resume in a few days.
But a proper Good Friday?
Not really. Normally we'd have been to church just to spend a little organised set aside time to contemplate what Good Friday is all about. Trying to spend quality time, let alone quality thoughts contemplating the events in Jerusalem when the Lord Jesus Christ was nailed to a cross. A truly barbaric act which saw the Son of God killed to pay the price of what the Bible calls sin, rebellion against a Holy God. It's the centre stage of our Christian faith. The single act in history that eternity hinges on. I know, I know, I know. But today there's only one death that I find my thoughts turning to.
But because of what happened on Calvary all those years ago I am assured that one day we will be reunited with Paul in heaven and with a whole multitude of others, too. It's what stops sorrow descending into despair. It makes life ultimately a triumph even in death.
Even in the darkest places there's light because of what Jesus Christ did, and does.
I think that between now and Easter Sunday when the sorrow of death becomes the joy of resurrection I shall post Paul's unedited facebook pages that I still struggle to read but I'd like them to be easily accessible for me and readily available to anyone.
I can't remember last years Good Friday and really today has been a lovely day, warm, sunny, calm and dry. Visitors for coffee, visitors for tea even bringing a (quite large) boot full of logs, phone calls from friends, too. General pottering about avoiding any form of road travel as this is a more popular area to visit than the roads can cope with but normality will resume in a few days.
But a proper Good Friday?
Not really. Normally we'd have been to church just to spend a little organised set aside time to contemplate what Good Friday is all about. Trying to spend quality time, let alone quality thoughts contemplating the events in Jerusalem when the Lord Jesus Christ was nailed to a cross. A truly barbaric act which saw the Son of God killed to pay the price of what the Bible calls sin, rebellion against a Holy God. It's the centre stage of our Christian faith. The single act in history that eternity hinges on. I know, I know, I know. But today there's only one death that I find my thoughts turning to.
But because of what happened on Calvary all those years ago I am assured that one day we will be reunited with Paul in heaven and with a whole multitude of others, too. It's what stops sorrow descending into despair. It makes life ultimately a triumph even in death.
Even in the darkest places there's light because of what Jesus Christ did, and does.
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| Lyme Regis. |
Thursday, April 11, 2019
First Anniversary
"I will consider my earthly existence to be wasted unless I can recall a loving family, a consistent investment in the lives of people and an earnest attempt to serve the God who made me. Nothing else makes much sense."
David Cook. Keswick. Monday 30thJuly 2018.
Thursday, April 04, 2019
Second Anniversary
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| Mumbles Fog |
Not the best two years of my life but what I've learned is best summed up by Alec Motyer,
“In life's storms we encounter God's waves and in our fears his terrors. That sovereignty which does not explain itself, which is brimful of infinite wisdom, love, power and justice, which is, therefore, far beyond our grasp and sight – that sovereignty is our pillow when all is darkness”
Wednesday, December 26, 2018
A wooden espresso machine and a plastic chainsaw.
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| The view from the front door, January-March 2018 |
Christmas Day 2017 began with coffee, ably assisted by a 1 3/4 year old apprentice. His gran and I were sat with him in his kitchen anxiously awaiting news from just down the road. The building, large, white and centre is Singleton hospital. Top, right is ward 10. Oncology inpatients.
The hope was that post chemo blood infusions would allow my helpers Dad to come home for Christmas.
He did. A selfie sent about 1000 showed a less pale Paul with a wistful smile.
Late morning till about tea time Paul sat uncomfortably in front of the fire, struggled to have Christmas dinner but managed as well as he could.
It was, I think, quite a party in a subdued but far from Joyless way. A wonderful day in its way, even if I was required to don certain clothing of a seasonal nature and distribute the contents of a sack! At least it gave Paul a suitable subject to focus on so that maximum embarrassment could be extracted!
Presents were exchanged, opened and pressed into use rapidly as only a 1 3/4 year old could manage.
Precious time.
The struggle had to be acknowledged and a return to ward 10 was delayed but not past (very) early evening.
Those practicing on ward 10 are amazing people. The sequence was repeated on Boxing Day and gradually time at home increased eventually allowing chemo and blood to be given as an outpatient.
Singleton hospital was very much the focus last Christmas. This year the focus was elsewhere.
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| The view of the front door Christmas Day 2018 |
Christmas Day 2018 and the view from the front door couldn't be more different.
Some things were very similar. "Coffee, Granda" as my 2 3/4 year old able assistant offers his services in the caffeine cause. I say offers but in reality its more of a demand and we're getting quite good at extracting espresso and steaming milk. He's pretty good at it although he'll improve when two strikes of the grinder dispenser stay at two rather than continuing to three and unless I'm quicker, four. He delights in pointing out the mess to his gran and explaining whose fault it is.........
This Christmas one of his presents was a wonderful wooden espresso machine complete with coloured coffee pucks, properly fitting portafilter, cups and spoon.
Once he'd examined it closely and ascertained that batteries were not included or needed the noises of coffee extraction were mimicked to a tee.
He was right in there. No instructions needed. He had it down to a fine art, everything in the right order, almost. But not quite. "Frothy milk jug for the steam wand, Granda." Not a question, really, not a demand just a look of one with expertise wondering were such an important part of the process was. It was probably as fast as I've moved in recent days but a suitable plastic frothy milk jug was found and pressed into use.
Proud doesn't begin to describe it. His aunty and uncle were inspired in their gifts, as always.
Next to see the light of day was a Bosch Chain saw, complete with batteries this time so it made all the right noises. After some experimentation it was found able to make the unwrapping process even more fun.
His dad would have been so chuffed and immensely proud. His dad's dad was doubly chuffed and proud enough for all of us. Now, if we could convince his wonderful mum of the delights of caffeine extraction!
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| The only view that really matters. |
I'm so glad it was Christmas Day. I could have a shower, whether I needed it or not.
Tuesday, December 04, 2018
Led Zeppelin two, Linn and a life
Last night, Monday, I sat here and listened to Led Zeppelin 2 streamed at 24bit 192hz from a hard disk. It won't stream over the network as there's insufficient bandwidth. From a USB HDD it sounded glorious. I love that album, it is the best example of bass and drums in perfect harmony that I know of. John Henry Bonham and John Paul Jones in perfect sync. The control, the power emphasised and enhanced because of the control. The precision, the speed, the definition, the soundstage, the separation. I could go on but you get the idea. It was wonderful. . . . and yet.
0s and 1s are amazing and the data being passed, processed and presented makes the mind boggle. I don't pretend to understand but I know what I'm hearing. And yet . . .
I have a copy of the original record, 50 years old next year, I think. I placed it on the platter of a nearly 30 year old Linn Sondek, lowered a Linn Ittok and its attached Linn Klyde into a record groove cut half a century ago. It's been played on a Phillipps record player bought in Aden in 1966, a Pioneer PL12D bought in Comet Gloucester in 1973, a Linn Axis bought in Radfords Exeter in 1984 and now a LP12 bought in Truro 26 years after my brother and I first heard a LP12 through a Naim six pack and Linn Isobarik speakers on a wet Saturday in ETS opposite the cathedral.
The lumps of diamond, real and fake, that have been dragged through those grooves over the years don't bear thinking about. The record does show signs of wear. And yet . . . .
It sounded different, no it sounded better.
I know modern readership will wonder what I'm writing about. Many will yawn and ignore, some will deprecate, deny and even despise. But I know what I'm listening to.
Trying to explain what it sounds like is pointless. It has to be experienced. Even then a closed mind will remain so but I challenge anyone used to decent sound reproduction to listen to a well set up record player playing a well recorded and well pressed plate of vinyl and not note a difference. Indeed, I'd be surprised if it wasn't acknowledged as better. Not more convenient, but better. There may be a few snap, crackles and pops but I bet you wouldn't notice them as the music overrides everything else.
It is a wonderful thing, music. It deserves the best it can be given to do its thing.
Last night I was lost in tunes, but not entirely.
It's been a hard week. Scans, codeine, tramadol, blood tests in our surgery and in bed, doctor visits to the bedside, sudden debilitating pain for the first time post surgery and then an appointment with our cancer nurse and consultant.
The recent weeks events seem not cancer related, indeed the scans show a reduction in the rate of growth. The view of the horizon is not of medical professionals bringing PICC lines, bags of chemo or boxes of pills. The horizon is clear for three months. No blood tests. No appointments. No contact unless I sense a deterioration or feel it necessary.
Surprised? Initially. But then not really. Apart from whatever happened last week, the doctor thinks gastritis, I feel too well. I get tired. I lose energy quickly but I can still change brake discs and pads! I could probably do some decoration but it's the wrong time of year, isn't it?
It's the power of prayer you know.
I know it.
I've had so many assurances of prayer and so many have been praying for me for so long I know that prayer has had its effect. I know it to be so.
But it's not the prayer, it's the person prayed to.
I know God didn't spare Paul despite prayer intense, abundant, faithful, but He did give him what he needed to die well. And he did die well.
I'm not there yet because of The One to whom so much prayer has been undertaken on my behalf doesn't want me yet, as I was reminded today by a good friend as she left from a visit.
I know many will wonder what I'm writing about. Many will yawn and ignore, some will deprecate, deny and even despise. But I know what I'm experiencing and who is responsible for that experience.
Thanks to all who are praying for me.
Thanks, too, to all who prayed for Paul. Your prayers were answered, too, He was glorified in Paul's life and in his death.
I can't explain it, but I know it.
Some things have to be experienced.
Some things are better than music.
In fact I felt so good that I gave up my ambitions to build a shed and ordered one .......
Wednesday, October 31, 2018
Selfish sadness
Sat here listening to R.E.M. opposite a photo of a smug looking Paul I am reminded that he it was who came home with Murmur and that was my first taste of R.E.M. We had tickets to see them in Hyde Park on the Saturday after the Thursday when a group of evil Islamics blew up trains and a bus in London. Never did get to see them.
To even consider that not seeing R.E.M. was sad compared to real sadness is a travesty but its roots lie in selfishness. I'd have loved to see R.E.M. in Hyde Park but in the scheme of things it's insignificant.
With Paul's diagnosis the sadness was overwhelming and unrelenting. It still is.
Emotionally thoughts run about out of control but eventually there comes a point when you find yourself focused on me. How am I going to cope without him?
Cue a mass of guilt and a spell of more disordered thought. You consider what you can do for his wife and son, his sister, his mum and then you're back at me. Who will I ask about, who will help me do, who will sort the computer, the stereo and so it goes on. And the guilt becomes unbearable.
Then you get to the point when you realise that the depth to which his suffering affects you is a mark of how deeply you loved him. The fear, apprehension, reality of his loss is a mark of how closely your lives were entwined, how you depended on him for so much. Advice. Knowledge. Alternatives. Options.
This summer I redecorated this room and that meant disassembling the stereo. The main components are over twenty years old. The only component I've set up is the record deck. Everything else was put together by Paul. I knew what I wanted, he'd advise about cabling especially. He had a thing about cabling things up. Just as well for a network designer, implementer, administrator.
Under the pre amp there was a diagram of connections and a note to leave it alone. I couldn't, didn't and after a few false starts the noise from the right bit comes from the right place.
The computer, too I had to format c as he used to say and do a clean install. I did that last summer. Last time I did it was Windows 95 and Lotus Smartsuite. But it works. Sort of.
Getting by while his smug grin looks at me from a wooden frame in the hearth. He'd appreciate the music.
Now I'm getting bouts of guilt again. A continuation with a twist. For years every time I bought anything I'd run it past him to make sure that he was happy about it reasoning that eventually half would be his. That's why I had two record decks.
I liked the idea that when I bought some all singing all dancing Bosch professional goodness, or a bike, or whatever eventually it would end up being at his disposal. Maybe his sister wants a Bosch 550W oscillating saw. Maybe not. Probably doesn't want a large Specialized Crosstrail push bike either. He wouldn't have wanted a Brompton so there's a degree of redress and balance.
It hurts to have to think about who will put the tools to best use. I hope Paul's sisters partner is handy. Our grandson is a bit young to use such tools and by the time he can he'll probably do it with an app.
Selfish thoughts, again. Overwhelming and unrelenting sadness. But not despair. Peace abounds and occasionally there are wisps of joy like listening to R.E.M. streamed from the server upstairs and sounding utterly fabulous. That's part of his legacy to me.
Wish I could have left him mine.
Back to thinking about me again.
To even consider that not seeing R.E.M. was sad compared to real sadness is a travesty but its roots lie in selfishness. I'd have loved to see R.E.M. in Hyde Park but in the scheme of things it's insignificant.
With Paul's diagnosis the sadness was overwhelming and unrelenting. It still is.
Emotionally thoughts run about out of control but eventually there comes a point when you find yourself focused on me. How am I going to cope without him?
Cue a mass of guilt and a spell of more disordered thought. You consider what you can do for his wife and son, his sister, his mum and then you're back at me. Who will I ask about, who will help me do, who will sort the computer, the stereo and so it goes on. And the guilt becomes unbearable.
Then you get to the point when you realise that the depth to which his suffering affects you is a mark of how deeply you loved him. The fear, apprehension, reality of his loss is a mark of how closely your lives were entwined, how you depended on him for so much. Advice. Knowledge. Alternatives. Options.
This summer I redecorated this room and that meant disassembling the stereo. The main components are over twenty years old. The only component I've set up is the record deck. Everything else was put together by Paul. I knew what I wanted, he'd advise about cabling especially. He had a thing about cabling things up. Just as well for a network designer, implementer, administrator.
Under the pre amp there was a diagram of connections and a note to leave it alone. I couldn't, didn't and after a few false starts the noise from the right bit comes from the right place.
The computer, too I had to format c as he used to say and do a clean install. I did that last summer. Last time I did it was Windows 95 and Lotus Smartsuite. But it works. Sort of.
Getting by while his smug grin looks at me from a wooden frame in the hearth. He'd appreciate the music.
Now I'm getting bouts of guilt again. A continuation with a twist. For years every time I bought anything I'd run it past him to make sure that he was happy about it reasoning that eventually half would be his. That's why I had two record decks.
I liked the idea that when I bought some all singing all dancing Bosch professional goodness, or a bike, or whatever eventually it would end up being at his disposal. Maybe his sister wants a Bosch 550W oscillating saw. Maybe not. Probably doesn't want a large Specialized Crosstrail push bike either. He wouldn't have wanted a Brompton so there's a degree of redress and balance.
It hurts to have to think about who will put the tools to best use. I hope Paul's sisters partner is handy. Our grandson is a bit young to use such tools and by the time he can he'll probably do it with an app.
Selfish thoughts, again. Overwhelming and unrelenting sadness. But not despair. Peace abounds and occasionally there are wisps of joy like listening to R.E.M. streamed from the server upstairs and sounding utterly fabulous. That's part of his legacy to me.
Wish I could have left him mine.
Back to thinking about me again.
Saturday, October 27, 2018
Time to change
Tonight the clocks go back an hour, today the shorts have given way to jeans one day early. It is cold, a north westerly breeze gently shakes the Union Flag over the D-Day museum, the Normandie has just serenely steamed outbound past the window, the sun making her white superstructure all the more emphatic. How I'd love to be aboard her, again.
Beyond her Jaynee W alters course by about 120 degrees as having been lightened by transferring fuel to the ferries she makes her way to Fawley for replenishment. There is nothing very pretty about her ungainly mass of pipework and derricks above deck, nor anything attractive about her rust streaked black sides rising above her grubby faded red antifouled hull.
Without one the other would struggle but Brittany Ferries would no doubt find a way to navigate around the absence of the Jaynee W. It may not be as easy or convenient but it would be done. Life's like that.
Sat here on this beautiful Saturday watching ships pass in the serene way that ships do from the comfort of our daughter and her partners flat it occurs to me that I have a nothing day. A day when I don't have to do anything. A day when I'd be happy to do even less.
A day when you feel it safe to allow your mind to reflect and bask in calm contemplation. There haven't been many of these recently. And hitherto the fear of allowing ones mind to revisit recent memories has inevitably led to an aversion to permitting it free rein.
Today feels a fresh day. A refreshing day. A day when you're prepared to allow the mind to revisit places you wish you'd never been. A day so bright and lovely that looking out of the window details of the far shore are revealed in stark clarity. Not that the Isle of Wight has a particularly attractive shore line but it is interesting if only because it is there.
On Thursday 12th October 2017 at about third coffee of the day whilst sat in the garden enjoying the sun on a hot day the phone rang. The screen lit up "Paul MOB" and the heart lit up too. We're coming down a day early, OK? Of course, silly question but before I could say much a note of caution shimmied across the ether. They were cutting their holiday short.
I need to speak to mum.
I passed her the phone.
I watched through the kitchen window as she sat, listened with increasing attentiveness and then slowly drawing paper and pen towards her addressed the paper with absolute concentration.
Countenance giving cause for concern. I went indoors but kept my distance desperate to know but anxious lest I disturb.
Conversation businesslike, notes taken swiftly, look of sadness growing ever deeper, short instructions.
End of conversation, more concentrated looking at notes, minor corrections, clarifications.
Without looking up another phone call. Very businesslike, short, clipped, determined, desperate. Borne of recent experience she knew exactly the person to speak to, the form of words to employ and the tone of voice used no doubt said more than the words.
Finally, looking up I was told that "it's you all over again"
Within a couple of hours Paul came through the front door. That very instant I knew. Only a few weeks ago, August Bank Holiday he'd been so well, or so it seemed but looking back, closely examining the photos there were signs.
Within an hour he'd seen our doctor, within another two he was in the very ward I'd been in at the start only nine months ago.
Seventy two hours later the phone lit up with "Paul MOB" again.
Again I answered. No joy this time. Angiosarcoma. Terminal. A few months, maybe a year. Starting chemo here. Pretty much now.
Nothing can prepare you.
Nothing can affect you so dramatically or effect you so wholly.
Not even being told exactly fifty one weeks later on 5th October 2018 at shortly after nine that your numbers aren't good, the scan showed a lump where there shouldn't be a lump and we can start chemo on Monday.
Whoa! Hang on. Slow down. At times your brain fills with questions but it somehow triages them ruthlessly. How wonderful your brain is.
I feel so well. You look so well. We will stop all the blood tests, have a scan in two months and see you on 5th December. We will start chemo, aggressive chemo, then.
But I feel so well.
Depending on the scan we may delay till January.
Prognosis?
No cure but on average from the start of chemo life expectancy is 13 months.
If there is anything you want to do, do it in the next two months.
It was nowhere near as much of a blow as Paul had been, for me, at least.
It also assumes that I want chemo.
Looking up the Union Flag tells me the wind' s gone more northerly and stiffened, there's no one in shorts so the first day in jeans is the right choice and the ugliest class of vessel afloat, Autostar, Portuguese registered, 22,000 tons steams past at 16 knots delivering how many thousands of cars I can only guess at or Google if I could be bothered. But for all her ugliness she is a fine sight and doing the job for which she was designed with ruthless efficiency. To my left a voice describes her a a monstrous slug sliding along. A bit harsh, although apt, she is merely doing her job as best she can and at maximum benefit to her owners and vendors of her cargo.
According to AIS, Drive Green Highway, red and white split by a black go fast stripe, Panamanian registered, 76,000 tons, doing 15kts will be passing shortly with another umpteen thousand cars aboard. A rough calculation tells me I can get up, make coffee, get back comfortably in time to watch her pass by. I can do this all day.
Mindoro, oil tanker, Maltese registration, 106,000 tons en route Fawley. Towing tug Phenix. Beyond are St.Clare going and St.Cecila coming both Ro-Ro IoW ferries. Yachts abound as does just about every type of vessel imaginable. Including the hovercraft.
Life goes on.
Wonderful, isn't it?
Beyond her Jaynee W alters course by about 120 degrees as having been lightened by transferring fuel to the ferries she makes her way to Fawley for replenishment. There is nothing very pretty about her ungainly mass of pipework and derricks above deck, nor anything attractive about her rust streaked black sides rising above her grubby faded red antifouled hull.
Without one the other would struggle but Brittany Ferries would no doubt find a way to navigate around the absence of the Jaynee W. It may not be as easy or convenient but it would be done. Life's like that.
Sat here on this beautiful Saturday watching ships pass in the serene way that ships do from the comfort of our daughter and her partners flat it occurs to me that I have a nothing day. A day when I don't have to do anything. A day when I'd be happy to do even less.
A day when you feel it safe to allow your mind to reflect and bask in calm contemplation. There haven't been many of these recently. And hitherto the fear of allowing ones mind to revisit recent memories has inevitably led to an aversion to permitting it free rein.
Today feels a fresh day. A refreshing day. A day when you're prepared to allow the mind to revisit places you wish you'd never been. A day so bright and lovely that looking out of the window details of the far shore are revealed in stark clarity. Not that the Isle of Wight has a particularly attractive shore line but it is interesting if only because it is there.
On Thursday 12th October 2017 at about third coffee of the day whilst sat in the garden enjoying the sun on a hot day the phone rang. The screen lit up "Paul MOB" and the heart lit up too. We're coming down a day early, OK? Of course, silly question but before I could say much a note of caution shimmied across the ether. They were cutting their holiday short.
I need to speak to mum.
I passed her the phone.
I watched through the kitchen window as she sat, listened with increasing attentiveness and then slowly drawing paper and pen towards her addressed the paper with absolute concentration.
Countenance giving cause for concern. I went indoors but kept my distance desperate to know but anxious lest I disturb.
Conversation businesslike, notes taken swiftly, look of sadness growing ever deeper, short instructions.
End of conversation, more concentrated looking at notes, minor corrections, clarifications.
Without looking up another phone call. Very businesslike, short, clipped, determined, desperate. Borne of recent experience she knew exactly the person to speak to, the form of words to employ and the tone of voice used no doubt said more than the words.
Finally, looking up I was told that "it's you all over again"
Within a couple of hours Paul came through the front door. That very instant I knew. Only a few weeks ago, August Bank Holiday he'd been so well, or so it seemed but looking back, closely examining the photos there were signs.
Within an hour he'd seen our doctor, within another two he was in the very ward I'd been in at the start only nine months ago.
Seventy two hours later the phone lit up with "Paul MOB" again.
Again I answered. No joy this time. Angiosarcoma. Terminal. A few months, maybe a year. Starting chemo here. Pretty much now.
Nothing can prepare you.
Nothing can affect you so dramatically or effect you so wholly.
Not even being told exactly fifty one weeks later on 5th October 2018 at shortly after nine that your numbers aren't good, the scan showed a lump where there shouldn't be a lump and we can start chemo on Monday.
Whoa! Hang on. Slow down. At times your brain fills with questions but it somehow triages them ruthlessly. How wonderful your brain is.
I feel so well. You look so well. We will stop all the blood tests, have a scan in two months and see you on 5th December. We will start chemo, aggressive chemo, then.
But I feel so well.
Depending on the scan we may delay till January.
Prognosis?
No cure but on average from the start of chemo life expectancy is 13 months.
If there is anything you want to do, do it in the next two months.
It was nowhere near as much of a blow as Paul had been, for me, at least.
It also assumes that I want chemo.
Looking up the Union Flag tells me the wind' s gone more northerly and stiffened, there's no one in shorts so the first day in jeans is the right choice and the ugliest class of vessel afloat, Autostar, Portuguese registered, 22,000 tons steams past at 16 knots delivering how many thousands of cars I can only guess at or Google if I could be bothered. But for all her ugliness she is a fine sight and doing the job for which she was designed with ruthless efficiency. To my left a voice describes her a a monstrous slug sliding along. A bit harsh, although apt, she is merely doing her job as best she can and at maximum benefit to her owners and vendors of her cargo.
According to AIS, Drive Green Highway, red and white split by a black go fast stripe, Panamanian registered, 76,000 tons, doing 15kts will be passing shortly with another umpteen thousand cars aboard. A rough calculation tells me I can get up, make coffee, get back comfortably in time to watch her pass by. I can do this all day.
Life goes on.
Wonderful, isn't it?
Monday, October 01, 2018
Many Happy Returns of The Day
That's what it often said on birthday cards.
Threescore years and ten used often to be mentioned.
Today Paul would have been 36.
No plans, no expectations.
But we had intended to go to see Mumbles lighthouse from here
Threescore years and ten used often to be mentioned.
Today Paul would have been 36.
No plans, no expectations.
But we had intended to go to see Mumbles lighthouse from here
Instead, our view was somewhat different. Somewhat familiar albeit in a place I hadn't been since I was 14.
The entrance to a PET scanner unit. The doors open to a set of rooms where cannulas are inserted, blood is taken, tested and a dose of radioactive sugar solution is administered. Once all is well the cannula is removed and you are required to lie still for an hour or so whilst the radioactivity is allowed to do its job.
Then 40 minutes or more are spent flat on your back with your hands above your head whilst motors whirr, switches click and clack as you are moved back and forth in a very expensive tube.
So much lying around on any other day would not have been so bad. But today.
Too much time to think. Too much to remember. Too much to relive. Too much to assimilate. Too much to even try to come to terms with. Just far too much.
Sadness so deeply felt, waves of it relentlessly rolling every thought in an ever tighter and darker spiral. Probably as bad today as any in the last year. But no despair. No questions. Acceptance of what is and what will be. Faith forced to be real.
Gratitude for every memory, even the recent ones in their terrible way.
Thankfulness for the thirty five and a half years we had.
Wonder as we were privileged to witness the way he dealt with his final months, days, hours and minutes.
Sadness that he's not here, sadness compounded by his absence from wife and son.
It is a magnificent gift when your son demonstrates to you how to die well.
I hope I measure up to the standard he established.
Paul was a far better man than his dad ever was or will be.
Today was not a good day.
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