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.