One Of Those Days ...

Days like this arrive from time to time. It got off to a bad start when I just nipped into school for 20 minutes before heading off to the hopsital for the second last chemo infusion. Whenever I mentor new headteacher I always give the warning "Beware any letter with a handwritten address on the envelope." Of course, there was one waiting for me ... A very angry parent demanding that one of my staff apologise to her child for a list of alleged offences. Of course, none of them were true! It is the slow lesson that can take parents years to understand ... sometimes, children exaggerate, and (steady ... ) don't tell the whole truth. I suppose we all have rose-tinted glasses when it comes to our children. I remember teaching a boy in the early 90s who, if he had been any slower, would have been getting watered twice a week. When I suggested to his mum that he was struggling with learning she just said, "Don't let him fool you ..." Hmmmm

Anyway, even worse was the news on arrival at York District Hospital that my Consultant wanted to see me straight away. My CEA level (tumour marker) has tripled in the last three weeks and is now at the all time high of 224. In a nut shell, the Consultant suspects that the disease is now successfully dominating the chemo. An urgent scan has been requested and it looks likely that I will be transferred to another chemo regime (a worse one ...) that has to be given in Leeds. Any problems will necessitate an admission to hospital in Leeds also, as York is not set up to cope with the sort of problems this regime can cause. So there we go - difficult territory. For those of you who are pray-ers, the big hope is that my CEA level plummets over the next three weeks. I was hospital last week for 4 days with an infection and it is JUST possible (though unlikely) that this has caused the hike in the CEA level. Anyway, certainly worth praying for.

As I left the hopsital, dosed to the nines with chemo, calcium, magnesium and glucose, I managed to settle on the fact that things could still be worse. It was then that I saw the parking ticket on my car windscreen ...

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Three-Quarters Through

Just a quick blog ... I have just reached the 3/4 point of the treatment. Things are still okay on the whole. I am working full time and coping so far; in fact school seems quiet, too quiet! Last year I became the first Headteacher in the city to have had his Harvest Festival sale of produce picketed by a group of parents, because it was raising money for Unicef and as we all know charity begins at home! This year, however, we raised £90 for the Seeds For Africa appeal. Hmmm. Acceptance at last? Anyway, day to day life is pretty normal on the whole. Martha has been playing a few concerts with the Ayrshire Fiddlers, one of which was at a village ceilidh. It was a full affair, with children dancing up and down the hall. Joel, predictably, was in his element. Unfortunatley his frantic impromptu movement continued during the slow lament written to commemorate the death of a lifeboat crew in the Pentland Firth. People were very forgiving.

In terms of my general health, the only problem I have is with my left side. It has felt for some time that I am nursing what feels like a torn ligament or muscular strain at the top of my leg. However, it turns out I have a bone tumour high on my pelvic bone, and that this has begun to interfere with the soft tissue around it. A bit sobering. On good days I can walk slowly and reasonably normally. On bad days I am genuinely considering swallowing my pride and getting a stick. It comes and goes, but I am back on the painkillers I'm afraid. Let's hope the last two chemo doses do something to reduce the bulk. My other problem areas are still feeling much better. I will leave you with a couple of photos of the weanes.

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Back To School

Well, that flew by. I know you all think teachers' holidays are far too long but it's all a matter of perspective. The week in Keswick whizzed by. We still had two days of school left on the Monday and Tuesday, and then on the Wednesday I went with the girls to see Kylie (purely as a means of transport, you understand.) Then, by the time we had spent Thursday trying to glue the outside metal light Joel broke in the Keswick apartment we were renting, it was back to a few weeks of torrential rain in York. Cornwall was good, if damp. We met up with some really good friends and managed a few days on the beach. Peranporth beach is very crowded, but Joel's game of "100 Loud and Noisy Ways of Falling Into A Hole In The Sand" is always good for clearing space. So the Greenbelt Festival followed Cornwall, and after that Dublin, London and ... back to school. You see, shorter than you think.

I have started the next three months of chemo. It has once again been an easier than expected ride. I have managed to work full time this week and so should hopefully be at work more or less throughout the period. I can already sense concerned furrows of the brow, but I promise to take time off if I need to. Martha has started Year 9 and Naomi has just started secondary. (She is prepared to take time off for education between productions, but only just. The Railway Children received huge critical acclaim nationally , but I suppose it's possible this isn't SIMPLY down to her appearances. Joel is back at his own school, which is a great place for him, and he counts off the days at the weekend until he goes back. Lazy, selfish Mary is quite prepared to see us destitute ... I apologise. Mary has stopped working on Fridays which means that her working week is much more manageable and she now has some space (which she well deserves.) So that is more or less how we are at the moment ... getting on with things. The 'white knuckle' moment will come in December when I have an MRI and a CT scan to assess the impact of the treatment. At the moment we are unsure how things have been affected, BUT my tumour markers are slightly down (I heard last week) and my pain levels are still reduced overall. This certainly gives cause for hope, but I just have to keep heading in this direction. It's all very week to week.

I hope you have all had a good summer. I really enjoyed seeing many of you over Greenbelt. Thanks again for checking the blog.

More Chemo

I suppose any compliment has to be taken and treasured these days, and so to be told by the phlebotomist that I have lovely veins was a pleasant start to yesterday's chemo. I seem to be into a fairly standard response in terms of side effects, which is that I have a two-day slump when I come off the steroids and pins and needles in my hands, feet and face for the first week. That said, I have been given magnesium and calcium this time in an effort to combat that and thus far it has reduced the tingling. We are still very grateful for my tolerance of this regime and as a special treat the oncologist has decided to repeat the whole course back to back with the one I have just finished. I will therefore be on treatment until the start of December. Not ideal, but treatment number 3 has started to palliate the symptoms -some tumours have reduced in size (the ones I can feel through the skin) and thus I hope the internal ones have done likewise. I am also completely off painkillers and no longer hobbling, which has to be a good thing.

The school term ended well, thanks to the devotion of my hard working staff who have taken many burdens from me. Even sports day had an eerie calm ... no tears, tantrums, swearing, biting or scratching and their offspring were also very well behaved. So, summer is here and we are off to Cornwall mid August and then I go straight to the Greenbelt Festival. The Greenbelt publicity has described the subject of my workshops as showing how poetry can help us talk about illness, death and dying. Perhaps I should break out the Leonard Cohen albums, bring in the Samaritans and have Schindler's List screened on the back wall! (Actually, looking at one of the poems below, you can't really blame them. I hope I have corrected it in time for the official programme)If you are coming to the festival, it is actually about writing out of any emotional extreme - happy, sad or exciting. Don't be put off!

Enjoy the summer and thanks again for visiting the blog.



Flying In For Lunch


When I last took you onto a plane
you dropped heavy tears,
shrunk from the loud engines
into my arms.
But you have no memory of that,
and this is a first for you.
Taxiing, accelerating, taking off,
rising to where there are no clouds or rain …
I watch it all soak in
like light onto film.

So … we’re flying to Dublin for lunch, I say.
There and back in a day. You laugh, thinking it’s a bit daft.
And you’re right.
So daft, it will become the story you tell
anytime your children ask
if you have ever been
on a plane.

for Martha




Chemo Room


The final step proved too high.
Seven minutes you stood beneath
a fifteen centimetre cliff,
at the edge of the ward,
eyeing the gleam of its floor
as a child might the surface of a deep pool.
We look a similar age.
You might have been someone I knew
beneath the cotton wrap,
behind the hand wiping
fast tears from lashless eyes.
But I tried not to stare,
busying myself in the ritual
we all know -
trickling warm water down skin,
coaxing veins to the surface.

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