I've had better birthdays

Ooops, seven weeks since I've blogged! I've been good, then poorly, now getting better. So much to say, but you may not want to read it all, so there's a paragraph synopsis next, then lots more detail about Ireland holiday and medical matters and finally a video promoting blood donations! Today is my 51st birthday and apart from being happy to be here, I am thankful for all the kind wishes, many by text from overseas.

Many more details below, but the quick summary is I'd been very well first two weeks of August and had a wonderful holiday with the whole family in Ireland. I started the trial drug on 12 August and felt fine for a few days, then my energy levels dropped from 90% to 10% and stayed there for two weeks with terrible pains in my trunk and shortness of breath, until I had to go into hospital with elevated temperatures, suspected infection and had a miserable six days in while they failed to find out what I had or what was causing it.

Holiday details? I had some perfect health and truly great holiday early August. We spent a week driving to various relatives in Ireland and were royally welcomed, entertained and fed. Much as we have travelled individually and as a family, we never made the short hop to Ireland and know or know of our cousins from their visits to London and tales from others. It was past time we made the trip and wanted to be altogether.

We started from Dublin airport in a too-small seven seater and sped up to County Monaghan, where we had a base at Catherine McDonnell's in Castleblayney. Actually she gave up her house for us - how's that for hospitality! Monday was blur of visiting my Mum's personal and family history sites and of course, aunt, cousins of various declensions all accompanied by copious amounts of tea.

No wonder Tuesday we sneaked off to visit the Giant's Causeway and were duly drenched. Wednesday, Derry airport picking up brother Edward and all going on to Donegal, my Dad's old stamping ground. Here the royal welcome was provided by Sheila and Gordon Thurston and they showed us lots of the old sites and relics - human and geographic. My Dad's old home "up the glen" was a sad, derelict spot, but the old school in Coguish where his mother was the schoolteacher until her untimely death in the flu epidemic after World War one was still standing proud. We then drove round seeing the wild west cost of Donegal and had a nice visits (with tea) with a couple more cousins. Thursday, back to Monaghan and visiting and re-visiting. Saturday to Dundalk to stay with the Hessions and the Sunday to Dublin where Luke and I got the 9pm ferry and drove through the night to get home at 5am Monday. Daniela, Laura, Katie and Frank stayed with the Quinns and flew back to Luton for 10am, where Luke was waiting to meet them.

Medical details: the day after getting home from Ireland, Tuesday 12 August, I was in hospital for the start of cycle 1 of my drug trial. I felt fine, though a bit tired from the six-go-mad-in-Ireland week, but relieved that my blood and other results were sufficient to allow me on the trial. There's the usual lots of waiting around, and cycle 1 has extra tests at strict intervals in case of a bad reaction, so I had to stay in overnight. Got home day 2, all well until day 4 when my energy levels went from 90% to 10%. Just like that. And stayed that way for over a week. Oh well, I thought, at least if there are side-effects, then there may be effects! Mind you, this drug was meant to to have next to no side effects, and I haven't been holding out much hope it would help anyway. After a week, my temperature suddenly spiked up over the threshold 38C and in I went for mainline antibiotics and squillions of blood tests and cultures to see what was wrong. I am under the Drug Development Unit at the Marsden Sutton campus, and it felt like their primary aim was to identify / exonerate the trial drug from the effects. This they did (exonerate) as no-one had had anything like the reactions I was showing, mild tiredness being the nearest.

So, what was causing these temperature jumps and extreme lethargy? None of the blood tests gave anything definitive but it has been clear for the past month or more that many of my liver functions were out of range. The consultant came to the tentative conclusion that my tumours may be "galloping away" (her words) and we should have some scans to see the size of the primary and liver mets and compare them with that of 5 weeks earlier. An anxious 24 hours ensued before the tests. It is famously difficult to get doctors to prognosticate and you can understand why; they often get it wrong, don't want to play God, don't know how the patient will react, etc, etc. I had come to adjust - and to prepare those closest to me - that the rapid growth shown in June and July, together with the experimental nature of my treatment, meant we were looking at months of survival, not more. Suddenly, weeks seemed more likely. In the event, a consultant radiologist conducted my scans and measured and compared everything there and then and told me that everything looked the same size. No galloping. Phew!

A couple of days later I was discharged with oral antibiotics and no clarity as to what caused my symptoms, but it was so good to be home, knowing my tumours hadn't increased it seemed like a win. Since then, I have continued to feel tired with inconvenient sleep patterns but energy levels getting up to the 30% mark. A frustrating level: enough to be aware of things to do, but insufficient to do much. However, I have my pain pretty much controlled and can save and plan if I need (want) to do something. I just had cycle 2 last week and so far, so good.

Carpe while you have the strength!

Paul

Warning before you look at the video: I did this piece to camera as I was overwhelmed by gratitude for blood donors. I thought at the time it could encourage some new donors and or backsliders. However, I have been made aware that this does show me near my low point and it could be distressing. So be warned: for those of you who think "Good old Paul, he's been ill before, his attitude will see him bounce back..." you may find it a bit of a shock to see me quite unwell. It's partially my fault; I tend to blog and and talk when I'm feeling well and do want to send out positive vibes. Also, I think it is hard for others to envisage what I am going through, so I tend not to dwell on when it's tough. With those caveats, if it does encourage one more blood donation, I'm happy to put it out there.