Update ...

On Wednesday I am going in for the third infusion and after that there will only be one more to go, on 30th July. Thus far I have been mercifully spared the many side effects I was promised. The pattern seems to be that I am a bit jaded for a few days after the treatment and I have a very slow day when I come off the steroids but thereafter – fine! I am trying to be sensible, but at times still overdo it a bit and get pretty tired. However, there is no broken skin, or mouth ulcers, or nausea, or vomiting, or exhaustion, or breathing difficulties, or laryngeal spasms … and of course only I could go the extent of shaving my head and then not lose a single hair. What I do have is pins and needles in my hands and face and this is brought on by any slight temperature change … but I am absolutely fine about that. It’s the least of my worries. Thank you for the many prayers that I know have been said.

So, on into summer! During late July and most of August Naomi is involved in the Theatre Royal production of The Railway Children, which is being staged in the National Railway Museum with a real steam locomotive! She is one of Perks’ children and, as you might imagine, is pretty excited about it … you know, just casually hanging about with cast members of The Bill and Life on Mars. As a family we will be spending time in the Lakes and Cornwall, so it is going to be a busy time, but great fun I am sure. I hope your summers are good and that we are all blessed with sunny weather. If you are going to be at the Greenbelt Festival, let me know so that we can meet up. If not, why not? You are missing out on a really good weekend!

The First Of Four

Just a quick update. Thank you for the many texts and messages that I received as I went for the first of my four infusions on Wednesday. There were a lot of old associations and memories flying about on that day from my past chemo (not happy ones I'm afraid)and so sensing that I had a community of supporters out there really made a difference. I was plastered in EMLA cream, which has a numbing effect on the skin, in the hope that having a needle pushed up my vein might be more comfortable. In the end, however, they wouldn't allow it because I wouldn't have known if the needle had gone astray. Oh well, nice try. I will just have to be grown up about it!

I feel okay on day number two, with the help of the steroids and anti-nausea medication. I will struggle more as the treatment progresses, but for the moment all is well and I feel happy to have started it.
I will keep you informed. Thanks again for dialling into the blog and for the ongoing, invaluable support.

Joel

Smoke On The Water

You are wrapped in a fog
that your cold days can’t disperse.
Words huddle together
and burrow through,
arriving soggy,
sliding across your shell
like my hand through your hair -
unnoticed, leaving a trail
that the breeze will erase
as it shakes the night’s weave
of knots and tugs.

But today we hold hands and dance,
jumping as Ritchie’s guitar riff
shakes the windows,
laughter spilling from your open throat.
While the band search for Lake Geneva through smoke,
we crouch beneath the billows,
playing in shallows
as cool and clear
as rain.


For Joel

Here We Go, Here We Go, Here We Go

Well, what a great night I’ve just had! I went to Manchester for the first gig of The Willard Grant Conspiracy’s tour. A great event. Afterwards, my arrival at the railway station coincided with that of about 3000 Rangers fans. On platform 3 I joined a group of about four hundred, all of whom were waiting for the 22.42 to York. Sadly, as it arrived, they got there first and sardined themselves into every carriage. Do you know, I’m not sure that all of them had a ticket! However, despite the fact that I had my seat reservation in my pocket, I thought it best not to issue a challenge …
This happened again at 23.19! Thankfully at 23.52 I managed to get to a carriage early, due to a sudden change of platform; I even got a seat. Once the next batch of football fans had pressed themselves into every available centimetre of the train, we eventually left. In a carriage awash with hot breath, eau de armpit and cider, I wasn’t particularly looking forward to the next ninety minutes. However, some lovely community singing broke out almost immediately. There were several songs although lyrically, the themes were quite limited … someone called ‘Pope’ (must be the poet …) was being given some quite frank advice and there were also some kind offers of food to a man called Bobby Sands. Now, for some people, endless hoarse, raucous bellowing and ranting would be a nightmare. Luckily for me, our regular church pew on a Sunday is quite near the choir and so I quickly found that merely closing my eyes made me feel closer to home.

On a serious note, I met with the consultant earlier in the week and I am starting the ‘big guns’ chemo on Wednesday 28th May. It is going to be tough, I fear, but Mary and I are going to try very hard to keep a veneer of normality for the sake of the children. Prayers to this effect, and for me to ‘get away lightly’ with side effects, would be greatly appreciated. The side effects are many and not pleasant, although I will be pointing out to my brothers this weekend that, although I am the first of us to undergo reasonably extensive hair thinning, there still isn’t a grey hair in my head! They are beginning to look as if they are attending an Alistair Darling Convention.

Thanks for visiting the blog and for your support and encouragement. I will, of course, update again when the chemo starts.

web analytics stats

Mixed News

Well, it's mixed news once again. On the positive side, tumours in my lungs appear slightly smaller. On the negative side, the main tumour in my pelvis is larger. The consultant has decided that my current regime has run its course and will be of no further benefit. So, I will be going onto the next 'combination' regime, which is much stronger, as and when there is any further growth in the pelvis. I am back in five weeks to have this checked out. If the pelvic tumour stays as it is, then I will stay off the chemo for now. However, as soon as it changes ... on I go. It is probably worth me upping my gym attendance to try and get as fit as possible in the hope that I might tolerate the new regime more than the doctor anticipates. He thinks it might help.

Mary and I are absorbing this latest news and in the meantime are getting on with things as normal. Little choice really. I have had a radically short haircut so that my children ( at home and at school)get used to me having next to no hair well in advance of the treatment. I think it's safe to say that my daughters hate it! (I'm willing to guess you don't like it either, mum ...) So I guess the next step is to leave photos of Right Said Fred about the house. (Martha stopped me on the stairs the other day as I jogged heartily down wearing shorts and sports vest, on my way to the gym. She eyed me for a moment and said, "I need to tell you dad ... that isn't a good look." Oooooh, she's such a tease!)

Thanks for visiting the blog. Stay in touch.

Be Sure Your Sins Will Find You Out.

I am interviewing for a new Deputy Headteacher on May 2nd and it is an important appointment for obvious reasons. We spent £920 on a national advert and had an astonishing thirty applications! The applicants came to look round, well-versed in the school's recent(highly successful!)Ofsted report and saying very kind things about it. So I am there - talking earnestly, brow furrowed, being modest, explaining the school's vision for future development - and this requires me to bring the small group to my computer to see next year's School Improvement Plan. Now ... the day before, I had changed my screensaver to the one which sends random photographs from the computer slowly across the screen. I was aware of the group staring silently at the computer as I was trying to explain our bid for new Foundation Stage outdoor provision;not one of them seemed to be listening! "Hmmm," I mused. "This lot aren't making the best impression on me!" I turned and followed their gaze. Oh how sad I was to see the screen filled with the photo of Mary and I on 'Children In Need' day, Mary dressed as Maria Von Trapp and me dressed as the Mother Superior. So, I quickly and forcefully said, "Yes, and we like to raise funds for charity ... "
What do you think? Have I got away with it?

Scan results and CEA results on Tuesday. Will Blog again next week.

Update ...

Well, there are new hurdles I'm afraid. My blood test that came back on Wednesday has shown that my CEA level, which had doubled between January and March, has doubled again. It was 17 when I was first diagnosed but is now 100. Not good. The oncologist is holding off putting me on heavy chemo for another three weeks, during which I will be scanned because he is concerned that it is all kicking off (my phrase, not his). I will also have more blood tests at that point. Wouldn't it be good if my scan showed stability and my blood tests revealed a decreasing CEA level? (... prayer hint) I feel okay at the moment - pain levels increasing a little but I am not on the full quota of painkillers yet and day to day life is normal.

Unfortunately, a girl at Martha's school who is in Martha's year has just lost her mum to liver cancer. The penny has dropped with Martha that these things do happen and we have had a few troubled conversations. It is very difficult, trying not to be evasive but also trying to shield her, at least for the moment, from the raw facts. If I go onto the heavier chemo and end up looking like Keith Richards' older brother we might just have to be a little more open about things. Naomi, thankfully, is too caught up with Andrew Lloyd Webber's search for the new Nancy and Oliver to notice much at the moment. As for Joel ... as long as he has Shreddies and Thomas The Tank Engine in his life, everything is okay.

On a positive note, I am off to London tonight to read poetry and I have another reading next weekend up her in Pocklington. It's a great distraction for me, and I love doing them. And, what with a couple of meetings at Betty's tearoom already in the diary for next week, life is looking a bit brighter!

I will let you know the scan results. Thanks for visiting the blog.