10 weeks old, and beautifully formed by God :-) The due date is 26th January 2015.
10 weeks old, and beautifully formed by God :-) The due date is 26th January 2015.
(Those who faint when reading about blood may want to skip this one.)
On Tuesday, I went down to London to have the biopsy for the PDX trial in which I’m taking part. The biopsy happened at the Royal Marsden hospital in Chelsea on Wednesday morning. It was a CT-guided needle biopsy, which means that they use a CT scanner in near-real-time to guide a hollow needle towards the lump to be sampled, and the sample extraction needle is then passed down that needle to take multiple samples.
At least, that’s what happens when it all goes well. :-)
The target, I found out on the day, was an isolated tumour in the top corner of my left lung. As they were biopsying my lungs, which are not a stable target, I had to both stay very still, and achieve a consistent size of “held breath”, so that when they moved the needle or did a scan, everything was in pretty much the same place. I was placed on the CT scanner table, and they used a lead-or-similar grid placed on my chest to find the optimum point of entry. They then injected generous quantities of local anaesthetic (a process which itself stings) and started inserting the needle. After each movement, they stopped, slid me into the scanner, told me to take a standard breath, and used the scan to see where the needle was and whether the track needed correction.
All went fairly smoothly until the needle passed through the outer wall of the lung itself. At this point, I started bleeding into my lung, which (although I tried to suppress it) led to significant amounts of convulsive coughing. They had to use suction to remove the liquid from my mouth. One nurse said afterwards that she thought they might well have abandoned the procedure at this point. In someone as young as me, this complication at this point is fairly rare. Of course, coughing so much, I was not able to hold still or take the standard breath, and it was dangerous to move the needle any further.
After a couple of minutes, I managed to get the coughing under control, although later I opened my eyes for a short time and saw blood spatters all over the inside of the CT machine! Once I was stable again, they were able to continue inserting the needle and were able to get 8 good “cores” of sample for use in the PDX trial.
However, a final whole-chest scan revealed that all that jerking about had given me a small pneumothorax, which is where air gets into the pleural space, between the lung and the chest wall. So I had to stay there for longer while they inserted a second needle into a different part of me and attempted to suck out the introduced air. This took less long, and was mostly successful. Any remaining air should, God willing, be reabsorbed in the next week or so.
Towards the end, I asked what my heart rate was; they said “66”. That’s the peace of God in action, I thought. The nurses joked that we should measure the heart rate of the surgeon! :-)
I was sent to the recovery room and then to the Clinical Assessment Unit. After 3 hours, they did a chest X-ray, then after another 2 hours another one, to check that I was stable and the remaining tiny pneumothorax was not growing. It wasn’t, so they let me go home. But I have another X-ray in a week, here in Sheffield, to make sure everything is OK and I’m fine to fly to the USA the following Monday :-)
Last November, and again this month, I had CT scans, and it turns out my cancer (Adenoid Cystic Carcinoma) has been growing. (If you haven’t known me for long and didn’t know I have cancer, the timeline and in particular the video might be a useful introduction.) I now have lumps of significant size – 2cm or larger – in both of my lungs and in my liver. It has also spread to the space between the lung and the chest wall. It normally doesn’t cause much bother there, but it can bind the lung to the wall and cause breathing pain.
For the last 14 years, we have been following primarily a surgical management strategy. To this end, I have had approximately 5 neck operations, 2 mouth operations, 2 lung operations, and had half my liver, my gall bladder and my left kidney removed. Documentation about many of these events is available on this blog, linked from the timeline. Given that I’m still here and still pretty much symptom-free, I feel this strategy has served me rather well. God is good.
However, it’s now time for a change of tack. The main lump in my left lung surrounds the pulmonary artery, and the one in my liver is close to the hepatic portal vein. Surgery on these might be risky. So instead, the plan is to wait until one of them starts causing actual symptoms, and to apply targetted radiotherapy to shrink it. Because my cancer is “indolent” (a.k.a. “lazy”), it can have periods of activity and periods of inactivity. While it seems more active at the moment, that could stop at any time, or it could progress differently in different places.
There is no general chemotherapy for ACC. However, at my last consultation I was asked to take part in a clinical trial of a new and interesting therapeutic technique, of which more very soon.
A friend texted me a word of encouragement this morning, and said he and his family had been reading Psalm 103. It’s a timely reminder of the true nature of things:
The life of mortals is like grass, they flourish like a flower of the field; the wind blows over it and it is gone, and its place remembers it no more. But from everlasting to everlasting the Lord’s love is with those who fear him, and his righteousness with their children’s children – with those who keep his covenant and remember to obey his precepts.
Our neighbours have acquired a 21st century bird’s nest:
Not only is it behind a satellite dish but, if you look closely, large parts of it are constructed from the wire ties that the builders (who are still working on our estate) use for tying layers of bricks together. We believe it belongs to a couple of magpies, and it contains six (low-tech) eggs.
I have no idea what effect this has on their reception…
Do you live in a guilt-based or a shame-based society?
Guilt is assigned by law, quantifiably based on right and wrong, and it usually goes away after punishment. Shame, by contrast, is assigned by the community, it is much harder to quantify and only disappears when a person’s honour is restored. It can potentially destroy a person’s standing in the community permanently.
In a recent book by author Steve Bell on explaining the gospel to those from an Eastern context, one of the points he makes is that Western Christians often explain the gospel in terms of guilt: “I was guilty before God, and Christ took the punishment for my sins”. This is true, and gloriously so, but Eastern societies tend to be based on shame, and this does not resonate with people from them. There is, however, also a telling of the gospel based on the concept of shame: “My sin shames me, but Jesus has taken away my shame and given me honour”. In expounding this point, he writes (p.12):
The unfortunate thing is that the Western focus on ‘guilt’ has developed to the exclusion of the eastern focus on ‘shame’…
This got me thinking (as all good books do) about the relative places of guilt and shame in UK society today. As would be expected for a 21st century Western country, I think that we are almost entirely a guilt-based society. Politicians no longer resign if they are caught in moral turpitude. People argue that private lives should have no effect on public status. Few actions which used to lead to shame do any more – in fact, “shaming” someone is in some quarters considered to be a great evil.
What consequences does this have? If people only have the ability to understand the world in guilt-based categories, then I wonder if they will tend to take their ideas of what is right and wrong from what is legal and illegal. “This is legal, so it must be OK.” This then means that people attempting to make something socially acceptable campaign hard for its legalization, because they believe it will then lead to its social normalization and acceptability. And, in a society with little concept of shame, they may well be right.
I recently did an interview for my church, The Crowded House in Sheffield, on my experience living as a Christian with cancer. An edited video of the interview was used as the introduction to a talk called “An Imaginary God in a Suffering World?”, which covered the question of how both Christians and non-Christians try and make sense of the existence and meaning of suffering – because it’s a difficult question wherever you stand.
You can also hear the talk which followed the video (length: about 38 minutes including Scripture readings).
[This post was pre-recorded.]
Today, March 31st, is the logical anniversary of three significant beginnings, all of which are wonderful.
Firstly, it’s the logical anniversary of the start of Mozilla. There are several significant dates here – the organization itself was created on February 23rd – but historically we have always remembered the day at the end of Code Rush, the day when the source code became available to the public – March 31st 1998, 15 years ago today. Because that’s the primary way we do what we do – we make great open source software and give it to people. And while the software that was released that day may not have been great in many ways (we threw a lot of it out some time later), it had the seeds of greatness within it. We’ve come a long way from there to Firefox OS, and we should pause and recognise our achievement.
Secondly, it’s the logical anniversary of my engagement to Ruth – a seed which has flowered into a happy marriage and two lovely sons. We got engaged on Easter Sunday 2010 (which, that year, was 4th April) and so we like to celebrate at Easter each year.
And no post about today would be complete without recognising that Easter Day is, of course, the logical anniversary of the day Jesus rose from the dead. The Easter story is how he does what he does – he provides salvation, hope and joy for all who come to him, by dying in their place and rising from the dead, conquering death. In doing so he also planted a seed, which has now grown into a worldwide church, hundreds of millions strong.
So all in all, a great day, and hopefully one which will be marked by peace and harmony. Happy Easter!
I am pleased to announce the birth of John Phinehas Markham at 10.55pm on the evening of 10th March 2013, Mother’s Day, weighing 8lb 3.5oz. Mother, father, baby and older brother are all well :-)
He is called John after:
He is called Phinehas after the priest whose rather striking story (pun intended) is told in the Biblical book of Numbers, chapter 25. God’s and our approval of that Phinehas may surprise or shock some; I’ve written a little more elsewhere about why we think he is a wonderful person to be named after.
To my eyes, John looks nothing like his brother (and so not much like me either), so we’ll have to see if he is as different in personality also!
A friend who will soon need a double lung transplant (due to a genetic illness) tells me:
96% of people believe donating organs is the right thing to do but only 30% have joined the NHS Organ Donor Register. 1 in 2 people die on the double-lung waiting list.
In 2005 and 2006, I wrote a fortnightly series of online-only columns for The Times newspaper. I attempted to get them to agree to a free content license for the text, but I was unsuccessful. At that time, there were far fewer precedents for that sort of thing, and I didn’t have nearly enough clout to persuade them to make an exception for me.
Still, I decided that the experience was probably worth it, and the money was useful. (Although my cousin, who is in the publishing industry, told me later that they paid me significantly under the going rate; and they also paid on 45-day terms, which I think is pretty shoddy behaviour.) I wrote a couple of pieces with which I was really quite pleased. And I was happy that, even if I didn’t have full rights, everyone could read them. I eventually stopped submitting work when my editor stopped replying to my emails.
Recently, revising my website, I came across the page where I linked to them all – but they are no longer available to read on the public web. They are behind the Times’ paywall. And, although I do have copies of the text I submitted, because I don’t own the rights, I can’t put up mirrors. So, I can no longer share my creative work with people who might want to read it.
Lesson learned: only release your creative work under free content licenses.
On November 1st, I’ll be having my left kidney removed (background), because there is a 10cm diameter metastasis attached to it. I’d love to show you some pictures, but I don’t currently have a CD of recent scans. I hope to get one in the next few days. The operation will be done at the excellent Royal Marsden hospital in London, so our family is moving down there for a week or so. They hope to do it laparoscopically (keyhole), but scars from previous operations might mean that’s not possible. My surgeon says it’s 50/50. If they have to do open surgery, recovery time will be a bit longer.
Fortunately, God gave me two kidneys, so I don’t anticipate this producing any long-term problems. However, I will be less involved in Mozilla things for a few days.
I’d like to introduce you to Dui (a temporary name – it’s Bengali for “two”), the latest addition to our family :-) We had our 12-week scan on Friday, and are happy to report that, as far as we know, God seems to be knitting him or her together perfectly. William, who continues to be a delight and a joy to look after, has yet to comment on his new role as a big brother, but we are sure he will take to it admirably.
The due date is 13th March 2013.
One normally expects ridiculous airport security stories to come from the USA… here is one from Manchester Airport.
I have a small washbag with a mesh cover. Its total volume is probably about the same as a standard-issue 1-litre clear plastic bag. Often, I just toss it in the tray as-is, and up to now security has had no problem with that.
On this occasion, it contained a toothbrush, a razor and a mostly-empty tube of toothpaste. These tubes are 100ml when full (a valid size for security); there is no way this one had any more than 10ml in it.
I loaded up, passed through the gate and waited for my luggage. My wheeled bag came through fine, but the rest was diverted for further inspection. “Odd”, I thought. I always travel with the same stuff, and make sure it’s nothing they’d object to.
The lady asks me the usual preliminary questions, and then extracts the flaccid tube of toothpaste.
“Sir, this is a problem. It needs to be in a clear plastic bag.”
“Well, I suppose so, but you can see it now.”
“No, sir. You either need to go back and buy a bag”, (at several low-cost airports, including Manchester, plastic bags are dispensed by vending machines packed in little plastic balls, and cost £1), “or I can’t let you take this through.”
I wondered if this was some strange revenue protection policy, or whether I was living in a parallel universe.
“Those are the rules, sir. If it’s not in a bag, it can’t come through.”
I laughed. I attempt reason. It fails. So I said, “Well, it’s not worth £1, so you can keep it.” I moved to pick up my other bags, and go.
“Sorry, sir, you can’t take those bags. They have to go back through the machine.”
“But you had a problem with the toothpaste, and now you’ve removed the toothpaste, so what’s the problem?”
“No, sir, they have to go back through the machine.”
Which they duly did, and no problems were found.
As I was leaving, I said to her “In your heart of hearts, you know this doesn’t make anyone safer, does it?”
She said, “We have to do a vapour test, and I can’t do a vapour test if it’s not in a plastic bag.”
Now, there may be a tiny core of truth in that; perhaps vapours accumulate in the bag while you are waiting and that makes explosives easier to detect. Although I don’t see them checking people’s plastic bags for holes, or making sure objects spend a good long time in the bags. If their tests really require that, then they must be pretty dangerously insensitive.
But the real issue here is the lack of common sense applied to the problem. This was less than 10ml of… something. If I stuck that much explosive in my underwear and tried to detonate it, the worst that could happen would be that I’d not be having any more children! We’ve lost sight of the original goal of the rules, and fallen back on enforcing them unbendingly as an attempted route to safety. It’s a secular form of legalism.
A couple of months ago, I was asked to write a 250-word summary of my job for a booklet on Ethical Careers to accompany an Oxford University Ethical Careers Day. This is what I wrote:
An ethical career is one which enables you to love God and love your neighbour. The range of careers available which meet those criteria is very wide.
My chosen career is one example. The Internet is one of the greatest drivers of human prosperity and happiness the world has ever seen. The ability to communicate easily across long distances, for business or pleasure, has enabled unimagined trade, friendship and connection. It has empowered many people. However, the free Internet as we know it is under threat – from governments, businesses and organizations who want to control or restrict what information passes. And when control and restriction increases, for whatever reason, opportunity and innovation suffer collateral damage.
That’s why my ethical career choice is to work for Mozilla, an organization which aims to preserve and protect the open Internet as a level playing field where everyone can communicate, contribute and take full part – without having to pay gatekeepers, have a relationship with particular companies, or give up their privacy or security. We are most famous for building Firefox, a web browser which embodies these principles, but we are also moving to counter other threats to openness and consumer choice in the areas of apps, online identity and mobile operating systems. I aim to “love my neighbour” by making sure that the Internet of the present and future (when billions of people not yet online join us there) gives as much opportunity for prosperity as it has in the past.