Mixed News

Well, we received very mixed news today when we went to get my scan results from the consultant. The good news is that the tumours in my lungs have been reduced by the chemo and that the cancer in my pelvis has not developed in any major way. Sadly, the tumours in my pelvis have not been reduced in any major way either. Disappointing. Also, another worrying possibility has emerged. There have been a few occasions when I have wakened up in a rather confused state. Mary has been unable to get any sense from me. The consultant has mentioned that this could POSSIBLY be a result of the cancer having spread to my brain. He has emphasised that he isn’t saying it is likely, or probable, but he does regard it as a possiblility. For that reason I have a brain scan booked for early January. Although this is an attempt to rule out this spread, we can’t help but be worried.
Other news, briefly, is that they will probably run the chemo regime again in mid-January, as it is possibly preventing further spread in the pelvis. I am okay with this, as I tolerated it pretty well this last time,

Anyway, we are all managing okay, so feel free to contact us by phone, email whatever. We are looking forward to Christmas and New Year … a nice quiet time??
My Christmas cards will be of an electronic nature – hope that’s okay.

I will keep you informed as to the scan times and the results
Thanks for visiting the blog.

More news

So, here is the news. The final chemo dose has been administered and I have just had a scan to see if it has done any good. I will get the results of the scan on December 11th, when I meet with my consultant. If it has done something then I will have the pleasure of having the course of chemo repeated! If it hasn’t had any affect then we will see what the good doctor suggests. I think either way there is a short course of radiotherapy coming in the near future to try and treat tumours which have, sadly, developed during the chemo. The effects of the chemo have accumulated and I have been a bit rough this week. I think it’s because I need another blood transfusion (I have had three) and I am seeing my GP tomorrow to try and get a blood test to measure my Full Blood Count. It will certainly be nice to feel a bit of energy again.

Family news - Joel and I had a trip to Scotland last weekend to see my brother, Simon. I have attached a photo below. It was great to see the sea again, if only for a very short time. Naomi is well, but losing faith in us. She fell over on an ice-rink last Saturday and ended up in First Aid with a very sore arm. I applied all my medical knowledge and experience and reckoned it “looked alright.” Mary agreed with me so we carefully applied a tubular bandage. We eventually took her to A&E on Monday – broken in two places! To be fair, it is one day better then when Martha tore all the ligaments in her foot last Easter. Martha and Mary are also well, looking forward to the end of term. It must be soon.

I will blog again with the results from our December 11th meeting. Thanks for visiting.

Half-Way

Well, I am just over the half-way mark. There has been both good and bad. The bad, quite briefly, is that I get lost in the system every week. When I turn up, they are always surprised to see me and I am never on their lists. That said, they sort it out and I am given treatment. I was, this week, moved to speak to the ward manager who has promised to sort it out. There have been no scans yet, but I have seen my consultant twice and he has decided that the growth of the tumours has slowed or stopped, which is good, because they were increasing at a rate. He won’t, therefore, be interrupting the chemo to deliver radiotherapy. Good news. I was reading the regime information again last night and it was explaining apologetically that hair loss and a couple of other nasty side effects are inevitable. Not so! In fact I am growing my hair back because I have not lost one. I am also avoiding a whole list of other problems, which is making this a lot easier. My pain levels are up again, at the base of my back, and if I forget to take the pain killers during the day, and I do that regularly, I seriously know about it and all activity needs to cease until I take them and they kick in. This can take over an hour. Shall I set my phone alarm? Maybe stop thinking about it and just do it?

The family are all well. Martha regularly advises me to ‘take a chill pill,’ to which I reply, ‘Whatever..’ Is this the right response? Joel is doing well at school, especially in the art of conversation and has been practising answering questions. He had one the other day with his teacher, Sarah:

Sarah: Why is the lion trapped?
Joel: He’s sad..
Sarah: Why is he sad?
Joel: He’s scared.
Sarah: What’s making him scared?
Joel: Stop talking, Sarah.

If only we could end our conversations like that..

We are off to bask in sunny Scotland now. We’ll try and get some photos to post on here when we get back.

The First Dose

Well, no one can say I'm not special. As they sent in the first bag of chemo, I experienced the usual side effects that they warned me about, but I also started to find it difficult to speak and actually form words (queue the Scottish jokes ...), which was obviously a neurological effect. None of the consultants in the hospital had ever come across this in their entire careers and so they stopped that particular infusion and the consultants went on-line. Apparently, and I quote, "A few doctors across the world have come across this, but it is exceedingly rare." They are bit concerned about it and so I am meeting up with my consultant before the next one so they can work out what to do, as it is important that I keep the treatment. Additionally, my haemoglobin is down at 7.6 and so I am booked in for a blood transfusion on Friday.

On the positive side, at the end of day 1 I can report feeling okay. Here's hoping I have another easy ride when it comes to side effects. Thank you to those of you supporting us in prayer and for all the kind thoughts and messages we have received. We are always very grateful for the number of people we have around us.

The Chemo

Well, my Hickman line has been surgically placed, my hair is shaved, I have organised cover at school and I am ready for chemo ... ish. I start on Tuesday morning. The Hickman line was straight forward. It's only when I think about it that I feel a bit wobbly. It went into a main vein in my neck and was fed down into my chest and into the vena cava, which is one of the body's main veins. It means that the chemo can be fed straight into the body without using a needle; it also reduces the side effects. The side effects are a bit grim and infections can be life-threatening. If they develop I have to go straight into hospital in Leeds. Anyway, I have been spared the full force of the side-effects in previous regimes and I remain hopeful that I might be spared the full force of this.

The family are all well and back at school. It hardly seems that we have been away! Our dog Basil has had a great day. I came home to find an empty chedders packet and an empty Soreen loaf wrapper. He was confined to his bed as a punishment, but not to worry ... Joel gave him his dinner. Great.

Thanks for visiting the blog. I will keep you up to date.

Dodgy ...

Well, France turned out to be very sunny indeed – everyday in fact. We spent most days in the pool and fun was had by all. We managed to have a very good break … as hopefully the pictures show. I have just come back from the Greenbelt Festival, where the MET office misled us by saying there were going to be sunny intervals. It was great to catch up with many good friends. I spent an afternoon listening to jazz, but was left with my 30 year-old key question unanswered – who is everyone in the ensemble following?

I might well have overdone it at the festival because yesterday was a very rough day – very fragile and energy-less. The main incident for me was my fainting episode. I strongly believe in committing to 'a faint' and so this time passed-out in a forwards direction, forehead-first onto the corner of a wall. It was just Joel and I in the house at the time, but fortunately he was safe upstairs. Eventually I managed to get to the lounge and onto a sofa and I lay there for a few hours sleeping. Today I feel better, just in time for school on Thursday!

I met with the oncologist last Friday and the results of the scan aren’t good. Everything has progressed slightly and the new tumours are absolutely established. So … it’s chemo time. I had a Hickman line put in today (it goes in through a main artery in my neck and down into my chest and means no more needles for now) and I start the new regime sometime in the next week. It is a tough one and I expect my school life to be reduced by 50%. Anyway, I remain hopeful that I will weather it well as I have done all the previous regimes. However, I am also very anxious that the treatment has effect. Mary and I are very aware that I have worked my way through many treatments and that there are very few left after this, if any. We have a real sense of being in classic cancer territory – strong chemo bringing hair loss, risk of serious weight loss, lethargy etc. It feels like a new land. Anyway, we’re heading into it. I am going to chart the number of times people tell me that I actually suit being bald or that I have a really nice shape of head (all well-meant, I know) The children in my school will be much more direct – “Eh, Mr ‘alliday. Wot ye gone and done with yer ‘air?”

Thanks again for visiting the blog.

A Couple Of Poems ...

A couple of poems for you about the first recorded murder in The Bible, which happened to be between brothers (sticking to my usual cheery themes). They are a result of some writing I am doing in readiness for the Greenbelt Festival.


Abel

Cutting firstborn lambs
from their mothers,
you soothe their bleating
before silencing them quickly
and arranging the portions
on an altar to your God.

Your brother steps out from your shadow,
severs the family tie,
breaks you.
Lost decades shimmer
on a scarlet pool at his feet
alongside an unclaimed love,
and the face of your firstborn.

May the stench of you
turn your God’s head,
the stain of you
catch His eye.




Cain

Not left over fruit
or dry vegetables;
this sacrifice is precious -
doused in blame,
kindled with jealousy,
sparked to flame by failure
as rough and bitter
as the skin on your palms.

The flock is spared
as a shepherd’s body is broken -
a brother -
the ground sipping blood
for the first time.

Crumbling in one of your fields,
only to rise in dust that
will powder your sweating brow,
dry the back of your throat

We attended a consultation with our oncologist yesterday, braced as we always are for bad news. Just as well, because it was bad news. Recent results and examinations suggest that the cancer has spread to a new site in my pelvis. It will become clear exactly how bad this is when I have a scan on 27th August. This won't necessarily kick-start the next dreaded course of chemo, but at the first sign that this new development is continuing to grow, I will be back on the drip. Our usual method of coping with this sort of news is to sink for a few days and then, hopefully, to re-surface. We have good people around us and I am sure we will be fine. So, for those of you who pray - how do I avoid going onto the horrible chemo? If the scan shows that my other cancer sites have stayed the same and if this new site stays small or recedes (which apparently, it might), then I will probably stay off the chemo. I really want that. Once this chemo has run its course there is a possibility of running it again with another infusion to up its strength, but thereafter I think we are running out of options. I've had about as much radiotherapy as they dare give me (I think this is the case, based on recent conversations with the oncologist.)

So there we go. We are off on holiday in just over a week - France. Might we see the sun? We'd better because getting to France isn't cheap! Then I am off to the Greenbelt Festival with my annual promise of attending lots of edifying seminars but knowing deep down I will be resident in the Tiny Tea Tent. The poetry is coming along well and when I write one that will 'fit' the blog I promise to post it up.

Thanks again for visiting the blog and for ongoing support to Mary and I.
Here is Joel wandering free in The Lakes ...

Trophies

The end of term is within sight. A relief all round. On the whole it has been a good year. We have some very good SATs result with which to appease Ofsted and the Deputy is now firmly in role. We had a good school moment just a couple of weeks ago when our youngest children went up to the village church to talk to the Vicar. (They had designed their own questions and the first one was, “Did Jesus survive?” Interesting at many levels but difficult to give an answer to someone who is five.) Anyway, as part of the talk the vicar produced this large, decorated silver chalice. The eyes of the children all widened, particularly those of Alex aged 5, who looked on and asked, “Where do you keep your other football trophies?”

I saw the consultant last Friday, just for a quick conversation. They will scan me again later in August and meet to discuss the results early in September. The only thing that has changed is that they have altered the pain management, adding a morphine solution to the usual routine. It is the same old problem of waking with leg pain at about 2 am and not really getting back to sleep. I will now take some of the morphine solution when I wake and hopefully this will see me through. I am still pleased to be treatment free for the summer, and if I can manage the pain more successfully then we should hopefully enjoy a few good weeks.

It’s Sports Day today in school. I am on the score board this year, as being a line judge proved to be too frightening last year. You really take your life in your hands! Many schools have opted to give out ‘Well Done’ stickers to all the competitors, but I am still of the view that there should be outright winners, who receive trophies and/or certificates. After all, it is one of life’s important lessons … you can’t be good at everything and some children do excel in sport. That said, last year whenever I declared the winner of race, I quickly felt like a lone wildebeest in a David Attenborough documentary, being stalked by an approaching pack of hungry predators. I might just carry a few sheets of ‘Headteacher’s Award’ stickers, in case.

I will leave you with some pictures of Martha’s birthday celebrations. Where did those years go?

Thanks for visiting the blog.

Scan Results

I think it's fair to say that Mary and I were pretty tense going into the meeting, especially when the speed with which we were ushered into the consultation room denied us the chance of reading the stories behind the cover headlines on trashy magazines. So, we'll never know which LA Hunk Jen from Friends is going to settle for, or why Denise from Loose Women is so ashamed of her recent behaviour. Anyway, his opening sentence was

The scan looked pretty good

and from this particular consultant that is a very positive statement. There has been no development of the pelvic tumours, either in the soft tissue or the bone. They are pretty much the same, so new pains further round my back can't be that. My liver is still clear. My lungs have three 'spots' but two of them are too small to measure and the third, which is about 1 cm, is not at the stage of requiring treatment. So ... no chemo or any other treatment for now. In the circumstances, this is good news. The situation is still stable. Bring on the summer!

Thank you to everyone who has contacted me over recent days; we have really appreciated your support. Thanks also to the many people from far and wide who pray for us and who were praying specifically for good news.

Friday

I have a meeting with the Senior Consultant this Friday morning to discuss a scan I had last Friday. It was penciled in anyway, but a slight increase in symptoms has meant that it is timely. I have some extra pain further round the top end of my pelvis which, we all agree, needs looking into. We are keeping an open mind (well, trying to) and we'll just have to re-adjust to whatever is found. That said, we are obviously hoping and praying that things haven't progressed in any great way.

We are all well, other than this. Naomi auditioned successfully for a production of The Railway Children that is being staged by the York Theatre Royal. She did this last year and loved it, so she is very pleased! Martha is preparing (?) for her GCSE in science, which has reminded me of just how challenged I am in this area. Attempts to help her with revision have been fairly fruitless. (I remember my science teacher being disappointed, but not surprised, at my Grade E in Chemistry.) Joel is still happy going to school, which makes life much easier for us, and Mary and I are trying to follow his example.

I will update the blog with Friday's results as soon as I have them. I will also try to get a recent poem up here, so that I can feel the blog title is justified!

The Past Few Weeks

Well, the radiotherapy course came and went, all in the luxury of the new £250 million oncology Centre of Excellence in Leeds. It's a cross between an airport lounge and a shopping mall and patients wait in clusters of seats. If they sold lattes or espressos you might be tempted to turn up in shorts, towing a case. The week of treatment was difficult for various reasons. I got an infection (which floored me) and a strongly worded letter of complaint to the school (which had me leaping back up again). Such letters can really get the circulation going. Anyway, I dragged myself in on the Thursday, a meeting was had with said parents and all was well. I think the Friday of the treatment week was the high point, however. I was lying in bed at midday, temperature soaring, body aching, drifting in and out of sleep when the phone went. I decided to leave it ... nothing was that important. Then my mobile went, so I played safe. It was the alarm company, saying that they'd received the signal that the school fire alarm was going off and they were in the process of contacting the Fire Service. It's amazing how quickly you can dress ... I was fully clothed in under four seconds and that included ironing. Okay - exaggeration. I was actually falling down the stairs towards the door when the phone went again and it was my deputy confessing to having burnt the toast in the staffroom. It's an easy thing to forgive, and I went back to bed.

The weeks since the treatment have been difficult, with the draining effects of radio, further infections and of course the bone strengthening infusions which cause flu symptoms. It is demoralising, never feeling particularly well, but I feel like I am re-surfacing now. I have a bit more energy. On the positive side, my pain levels have been reduced and life is more comfortable again. I am seeing the consultant on Friday to discuss all this and I would love to think I can be left alone for a few weeks/months and get through the summer without having to have any more treatment. We'll see. The family are all well and we have enjoyed a great Easter break in Scotland with friends. (Actually, during that visit, Martha fell off a swing and hurt her foot. After four days we took her to the hospital and it turns out she has badly torn ligaments ... in my defence she is a teenager and so dragging limbs is not unusual.) We have also enjoyed Joel's eighth birthday and Mary's 40-something birthday. Joel's very funny when it's his birthday. He loves it but can't bear to be the centre of attention. I've attached some photos that demonstrate this ...

I hope you have had a good Easter. Thanks, as always, for visiting the blog.

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A Quick Note.

This is just a quick update about Friday's results. The Senior Consultant gave us about an hour of his time (is that a good thing?) and talked through the options. As always - good news and bad. The good news is that my lungs and liver are still clear. This is significant, as it is those areas that are potentially going to cause the most trouble. However, the illness has progressed in the pelvis, growing into the bone and starting the invasion of the bladder wall. So, I am going to have a five day course of radiotherapy in the near future in the hope that it will reduce the symptoms and might even cause tumour shrinkage. They are holding off on the chemo for now, and are more likely to start that when when tumours appear outside of the pelvis.

Mary and I feel okay about this. Obviously not happy at the disease's progress, but I think we were braced for something worse. We are both pleased at the delay in chemo. The girls have been in a dance performance today and yesterday so it has been nicely chaotic on that front, allowing us to get lost and distracted in sequins, tights and deadlines.(Spare me the offensive remarks ...) Joel is just enjoying the feeling of being alive, which is significant ... the music shop phoned to say that the reason my bass rig went on fire and destroyed itself has a lot to do with the fact that someone posted a 5p piece into the electrics. Bless that cuddly wee soul; butter wouldn't melt ...

The Truth Will Out ...

The first morning back to work after a break is always a bit chaotic. We had a class going off on a week’s residential trip this morning and so the hall was full of weeping mothers – some weeping out of concern and a sense of loss, other out of sheer relief. I am always amazed at the luggage that turns up, and attempts to smuggle things like hair-straighteners, Body Shop stock rooms and HUGE packed lunches into cases. (I remember on one trip I organised, a boy was being sick before we had even got on the coach! When asked if he had eaten anything on the way to school, he confessed to two pork pies and a beef jerky. Not good! ) Additionally this morning, I noticed one younger pupil arriving with a huge fake tattoo right up the back of his neck. "Like Daddy," he told me... Anyway, to cut a long story short (which I hate doing) I got the dreaded ‘Number Withheld’ call amidst all the chaos. In the recent scans my kidneys are looking enlarged again, and so I am off for a blood test this afternoon. I meet with my consultant on Friday when he will basically go through the two scans in detail and explain ‘implications.’ I confess to being uptight about this; I was put onto morphine recently but it isn’t completely sorting the problem. That said, I am not in agony and am still able to get on with life’s normal tasks, such as exploring tattoo removal on the NHS.

For those pray-ers amongst you, mats at the ready please. I will let you know how Friday goes.

Quick Update

I want it to be known that my school did not close due to snow … sadly. There was huffing, tantruming, tears, and shouts of ‘That’s not fair!’ … from the staff … but we remained open nevertheless. Half term beckons at the end of this week so suddenly all seems well again.

Mary and I have been through the mill a little since last we spoke. I became unwell quite quickly a couple of weeks ago … tiredness, temperatures and pain levels doubling. More worryingly, I have been losing weight and I could feel almost daily changes to the main tumour; we were both beginning to panic. The consultant brought me straight into hospital and told us he suspected that the primary tumour had developed an abscess. Oddly enough, that brought relief all round as I was fearing the worst. Anyway, things have returned to normal now but I have just had two scans this week because they have rightly said that they need to actually see what is going on. I will get results in a couple of weeks, unless there is something dodgy going on, in which case I will get a call with ‘number withheld’ on my phone display … always a bit of a pulse quickener. As soon as I hear, I’ll let you know.

Mary and the girls are in the village panto next week (Oh yes they are!) Coincidentally, Joel and I are off to Scotland this weekend for a few days of bonding. Anything could happen … I’ll post the photos when we get back.

An Audience With ...

God forbid I should ever suggest that the community my school serves is inward looking, but today’s assembly had me a little concerned. I stood there, clutching the story of Rosa Parks, and my question began like this:
“Children, today is a really important day, for one country in particular but perhaps for much of the world. It’s a day that will be remembered and talked about for many, many years to come … what do you think I’m referring to?”
The answer was swift:
“Is it the new athletics club starting at the secondary school?”
So there you are – step aside Obama, because I have to practise my hurdling.

I had a consultation with the senior-consultant last week. It was a bit like getting an audience with the Pope but the consultant was dressed a bit more casually and I didn’t have to kiss his hand. There was mixed news, as always. The darker news is that, having checked my scan and found that the cluster of bone tumours is close to the site of my previous radiotherapy, he isn’t confident that another dose will do much good. He has said that if things progress, he may well consider the final regime of chemo. I would just love to avoid this. Anyway, I am being scanned in a couple of weeks and he will deliver the verdict late in February. If there isn’t much change he might just leave me for now. On the happier side, he confirmed that to have a disappearing tumour (see previous blog) is indeed very rare. It is still ‘gone’ and in fact there is no trace of it. As he said, “Difficult to explain, but we’re not complaining.” Too true.

I see my usual consultant tomorrow. He is the one overseeing the bone-strengthening infusions. The truth is, I am tolerating the infusions really well, but my pain levels are up. The pain killers wear off at about 3am, at which point I take some more, but they don’t ‘kick in’ for an hour … and then the alarm goes off at 6.15am. So, I am walking about school looking like Sandy Gall at the moment.

Anyway, enough! I am one tumour less and feeling pretty good about it. I’ll let you know when the next one goes ... so keep praying until then.

Thanks again for visiting the blog.


New Year's Day