'Flu and me

Since I had a significant amount of radiation to my oesophagus and trachea, neither of these are quite what they once were. Radiation results in scarring and so the usual functions of these very important little tubes are somewhat impaired. In particular, I predictably get acid reflux if I bend over too quickly after eating (and at random other times), coughing often turns into small vomits, and I get chest infections every time I have the 'flu. The first two are because my oesophagus is less effective at keeping things down in my stomach, but the third is because my trachea is less effective at keeping phlegm up in my sinuses (and my cough reflex kicks in too late - I don't cough when the stuff is running down the back of my throat, but then get persistent coughs for weeks afterwards).

I also get the impression that my immune system is not what it once was (or perhaps it is just being in a different (and colder) country), which means I manage to pick up every 'flu that comes around and they knock me out for longer. When combined with the failure of my body to keep fluid out of my lungs, the result is that I've probably taken more antibiotics for chest infections in the last few years than the rest of my life's antibiotic consumption put together.

As antibiotic overuse is a very serious global issue, I am aware that I don't wish to be part of the problem, yet doctors keep telling me that they have no hesitation in prescribing such drugs in my case. After the latest iteration of 'flu plus chest infection, from which I am currently recovering, I am now even eligible for the 'flu shot each year here in the UK along with other vulnerable people such as the elderly, pregnant women and those with heart or lung conditions.

Stabbed in the back

I now have nine stitches after being stabbed in the back earlier this week.

The doctor who did the deed was not trying to kill me, just removing a mole that might have been slightly on the edge of suspicious. Both my GP and the dermatologist said that they would normally ignore a mole with those characteristics, but due to all my radiotherapy, they each decided to play it safe.

This is great timing, since we're moving in under a fortnight and I'm not meant to do any heavy lifting for six weeks!

Clear again, and a discussion of scans

Yesterday I went back to the Western General Hospital for another follow-up appointment. All was well. The doctor even checked my legs this time (with all the poking and prodding I receive each time, no one has thought to do that before).

We talked about the possibility of another CT scan and three arguments were suggested as to why it wouldn't really be a good idea. First, it is more or less unnecessary after a certain period of time (though the Australian doctors thought two years, here they think one), and any relapse is likely to be signalled through clinical signs anyway (e.g. loss of appetite, difficulty swallowing, coughing up or passing blood, weight loss, lumps and bumps, difficulty breathing, and so on). Second, since I have already received the maximum amount of radiation they are ever going to give me (lest they damage my spine),* each scan adds a little more radiation to this (only a fraction of what I received in treatment, but there's no point pushing it). Third, and this was the point he elaborated the most, he believed that the more scans you have, the more anxious you become, since scans pick up more than cancers, so that every little dot becomes a reason for worry.

There was, of course, a fourth reason which he didn't mention: cost. It would be interesting to know the extent to which this was a factor in his recommendation. I don't think that in principle this is an unreasonable consideration as I don't think we ought to do everything possible to keep people alive. It is possible to over-invest in health. However, I don't know enough about the NHS and the UK budget to make any kind of informed decision about the relative investment in health here in the UK.

Nonetheless, at the end of the discussion, he agreed to arrange a scan prior to my next appointment in three months in order to mark the two year milestone.

Every now and then I struck afresh by how surprising it is to be here: (a) alive and (b) in Edinburgh** doing a PhD. Praise God!
*I can't remember if I ever mentioned on this blog the strange sensation I got a few weeks after the end of radiotherapy. For many months, whenever I walked for more than 5 minutes, my feet would tingle. I told my oncologist about this and he told me to nod my head. Being taken off-guard by the apparent nonsequitur of the request, I complied, only to find I could generate the same tingling sensation just by moving my head. He explained that the radiotherapy had started to affect my spinal column and so when I stretched it (through walking, or just nodding my head), then I felt that strange sensation. It was a little off-putting at the time, but on reflection, it showed that they had indeed given me the maximum dose of radiation. Earlier, the radiologist had referred to the real possibility of burning a hole in my oesophagus if they gave me a little bit more than I had.
**The image is a picture of my college in Edinburgh (the neo-Gothic towers in the middle of the photo) during a greener part of the year.

Oncology consultation

After my fourth good scan last week, I saw my oncologist this morning, who was also happy with the result. He didn't think a PET scan was necessary and said my next CT scan could be in three months, rather than two. This is all good news.

As for ongoing side-effects of the treatment, we discussed two things. First, I mentioned chemofog and he referred me to one of his colleagues, whom he said is a leading researcher into the phenomenon. She is away at the moment, but will contact me soon to discuss it.

Second, he pointed out the visible scarring of my lungs from radiotherapy. The damaged region comprises less than 10% of the total volume, but is still a significant amount. He said I will probably not win the Tour de France now.

A weighty issue

When my oncologist first told me I would be having radiotherapy of my oesophagus, one of the pieces of advice he gave me was to eat as much as possible in the weeks beforehand. My dietician said I ought to maximise my intake of protein, carbohydrates and fat (when was the last time your doctor told you to do that?). They were concerned that the damage to my oesophagus would make it difficult for me to eat and so I might lose a lot of weight. Since it was December when I was diagnosed, it was not difficult to follow their advice (especially with two very concerned families who liked to express their love by supplying us with lots of food, not the mention the many friends and members of our church family who also cooked us meals). As a result, I gained 5-10 kilos on top of my usual weight, putting me into the 'overweight' range, according to my BMI (Body Mass Index).

Radiotherapy did leave me on a liquids-only diet for a few weeks (and a water-only diet for a couple of days at one point. Even milk or very thin soup was too painful), but being tired and feeling unwell also greatly reduced my physical activity, so I never lost much of the weight I'd so rapidly gained.

Today, I remain a little above the 'normal' BMI, yet my oncologist has always been far more worried that I will start losing weight rapidly than he is concerned at my being slightly overweight. An article in today's Sydney Morning Herald might help explain his reaction: a US study has found that "being up to nearly 14 kilograms overweight reduces by 40 per cent your chance of dying from a range of common diseases and risks, not least because it improves your chances of recovering from surgery, injury and infections."

Yum.

Update: 22nd March

Taste and see that the LORD is good;
blessed is the one who takes refuge in him."

- Psalm 34.8

God is faithful in times of prosperity and adversity. We continue to be so thankful for all the good things we receive from his hand.

CT scan
Yesterday I had my first post-treatment scan (a CT scan) to begin to determine the effectiveness of all the chemotherapy and radiotherapy I received in January and February. The results were very encouraging. There were no secondary growths (i.e. the cancer has not spread) and the primary tumour had shrunk to about a quarter of the volume it was back at the start of December when I was first diagnosed (the only other time it was measured in a scan). On 1st December, it measured 35 mm by 30 mm by 25 mm but yesterday it was 25 mm by 17 mm by 16 mm - a very impressive reduction. The radiologist who reviewed the CT scan was also impressed at the comparatively minimal damage done to the surrounding area (esp lungs) by the radiotherapy.

However, yesterday's scan does not reveal whether this residual mass is merely scar tissue or active tumour. To find out, we need to wait another month to continue to allow the radiotherapy to have maximum effect and then I will have a second, different scan (a PET scan) to measure cell activity. More waiting - no wonder they call us 'patients'!

Side-effects
After finishing radiotherapy just over a month ago, I have been recovering from the various side-effects and feel as though I am well past half-way (though not yet 100%). I still have less energy than I used to and am still expanding the kinds of food my oesophagus can tolerate. For much of this month, I have been on a liquid diet but have recently been enjoying food with more substance.

Voice
My voice, though a little stronger than it was a month or two ago, continues to be quite different to what it once was. It is likely that this will be a permanent issue since the damaged nerve that controls my left vocal cord may never recover. However, with some speech therapy over the next couple of months I might continue to gain a little more volume. I am able to preach and give talks using microphones, but conversation in noisy contexts is very difficult, as is singing - a loss I frequently mourn.

Church
Apart from these factors, Jess and I have been well. We are both enjoying our work, as well as the extra time we've had to rest and recover while both being part-time. We are settling well into our not-quite-so-new church at Leichhardt and have started a couple of small groups for people our age, which have been very encouraging.

We have really appreciated all the generous support from so many: gifts, practical help, people willing to listen, and a constant supply of food and prayers. God has given us all we need and so much more!

Prayer
For those who pray...
Give thanks:

• for God's generosity towards us all: giving us life and every good thing, especially his son.
• for the love and support we have also received from church, family and friends in a variety of forms.
• for the good result on yesterday's scan, and how far we've come on this little adventure since the start of December.

Pray:

• that the remaining mass will be all scar tissue and not contain any active tumour cells.
• that while waiting for a more definitive result next month, we will be patient and thankful for each day, without anxiously grasping after an answer or deferring our lives.
• that I might continue to regain strength and would use this to serve the God who loves life.

Update: 19th Feb

End of radiotherapy
Praise God - I have reached the end of this treatment cycle! I have just returned home from my final day of radiotherapy (#33) and last Wednesday received my 7th and final doses of chemotherapy. I am exhausted and in many ways at the lowest point I have reached physically, but remain filled with hope and feel great relief, since the next few weeks should involve gradual recovery. Since radiotherapy will continue to affect my body for the next couple of months, it will be many weeks before the effectiveness of this treatment cycle can be determined. I will have a full CT scan in a month (which will reveal how much of the growth remains) and then another full PET scan in about two months (which tests whether it is still active). We are praying that the growth will have entirely disappeared . However, it is more likely that a scarred area will still show up on the CT scan. If so, we're praying that it is no longer active.Side-effects
As for side-effects, the radiotherapy has really overtaken the chemotherapy in the last couple of weeks. Not only am I even weaker and more tired than ever, but recently it has become increasingly difficult to swallow due to radiation burns to my oesophagus. For the last week or so I have been limited to fluids (water, juices, thin soups, melted ice-cream (thank God for small mercies!), special dietary supplement drinks, yoghurt and the like) and even then require painkillers and an oral anaesthetic (which I gargle before meals) to get things down. It's not much fun. But this level of discomfort is only likely to continue for another week or two. I am now glad that I put on so much weight in December!

God is good
Each morning, Jessica and I wake up and remind each other "This is the day that the LORD has made", to which the other replies "Let us rejoice and be glad in it!" (Psalm 118.24). Despite not being able to do all that I once could (and might, God willing, one day be able to do again), life is good, very good. We are so blessed by the generosity and support of family, friends and strangers, by having a beautiful new church family at Leichhardt where God is clearly at work, by living in a country with a (largely) functioning medical system, and by having a sure hope that as we have died with Jesus to our old lives, so we will also rise like him when God makes all things new.

Work update
Jessica continues to enjoy her social research position at St Leonards and the occasional continued support she can offer to the EU Graduates Fund (where she was working for the last few years). Our time at All Souls, Leichhardt has started well. We have met many people, welcomed a number of newcomers even more recent than us and started a weekly small group for 20-30s. I have also preached twice (sermons can be downloaded here), led some services, done a little reading, begun planning a few outreach events in coming weeks and attempted to keep the church and many of you in my prayers.

Prayer
Speaking of prayer, here are some suggestions for those who pray.
Give thanks:

• For reaching the end of this treatment cycle and for its apparent effectiveness.
• For Jessica's thoughtful concern and love as primary carer. Also for the many others who give their time, energy, friendship, food and prayers in support.
• Because our Father is faithful, because Jesus' blood never fails, because the Spirit blows with the promise of a new age.

Pray:

• That the treatments will have been effective, that God will have used it to bring complete healing, that the test results will show only scarring and no active cancer anywhere in my body.
• For patience with eating difficulties and that I'll be able to maintain adequate nutrition despite limited options and little desire to eat. Also for patience and peace as we wait the next few weeks for results.
• For energy when I need it and the ability to rest at other times. For Jessica to also have good rest during this time of stress.
• For the new small group at All Souls, that it will be a place of life and peace, where we speak the truth in love to one another, welcome newcomers and care for those who are struggling.

Update: 14th Feb

Final Chemo
After waiting for three hours for blood results that usually take 30 minutes, we ended up back in the pack today rather than being one of the first. This made for a long day: 8 am start and just got home at 5.30 pm. But it's over - at least the chemo part (3 more days of radiotherapy). I've really enjoyed getting to know some of the nurses and their quirky sense of humour. Don't think I've overcome my needle squeamishness, even after so many (I lost count weeks ago).

Our oncologist was again positive today. Once all treatment is over, we'll wait a month and then I have a neck-to-toe CT scan. He said he would be surprised and disappointed if the news is bad, but since he's still unsure of the cause and nature of the growth, there are certainly no guarantees. After the CT scan, we wait another month and I have a PET scan to confirm there is no unusual growth activity (God willing). If that is also clear, then I'll keep having checks every 3-6 months for a few years before the all clear is given. If the growth is still active in a month or two, then the question of surgery will again be asked (which depends on how much it might have shrunk and in which directions. When I first presented, surgery was ruled out because the growth was inside my left bronchial tube and too close to my oesophagus and aorta). If the news is very bad (new growths), then that is a whole new ball game, probably involving a shift from curative to palliative treatment, but he said he'd be very surprised were that to be the case. We continue to trust God for the outcome, whatever it may be, though are very thankful for the positive indications we've been receiving so far.

As for side-effects, the radiotherapy has certainly overtaken the chemotherapy. The main issues now are still tiredness, but also swallowing and reflux. In particular, I am basically now on a fluid diet: soup and tasty dietary supplement drinks. Occasionally, I put in the effort to have something very soft, but it is quite painful, even using an oral anaesthetic (Xylocaine) that I gargle before some meals. The reflux is more a constant dull feeling of burning as the lower end of my oesophagus, weakened by the radiotherapy, fails to keep back the acids from my stomach. I take antiacids to reduce the effect, but it's particularly annoying at night and I still sleep propped up in bed (and with our bed propped up on some bricks) to get what help I can from gravity.

My second sermon on Sunday (on the two natures of Christ in the Apostles' Creed) was enjoyable to write, though due to tiredness, I ran out of time to cut it back as much as I would have liked. It can be downloaded here (or it will there soon, depends on the volunteer who manages the website). Here is a taste. Last night, we also started a new Bible study for 20s/30s and got off to a solid start.

Update: 8th Feb

Second Last Chemo
We can see the light at the end of the tunnel, at least for this cycle of treatment. After six weeks of chemotherapy, there is only one more to go (and about ten more weekdays of radiotherapy). Yesterday's treatment went smoothly. I had an earlier appointment than usual and so managed to beat some of the usual rush and be home by 2 pm. I also felt more able to concentrate and so managed to read with more concentration (that's some Kierkegaard photocopied on the table in front of me in one picture). I've included some images to give something of a feel for the space. The huge dose of steroids they give me to avoid another reaction did mean that when I woke in the middle of the night, my brain was very active and I spent an hour or two writing down ideas. Hopefully, I'll get better sleep tonight once the effects have worn off.

Update: 31st Jan

Just a brief post to say that chemotherapy today was not affected by my food poisoning episode yesterday. I still received both the usual drugs (I will soon continue to extend the FAQs to discuss my treatment), and again had no reaction, thanks to the 20 mg of Dexmethsone that will probably keep me up tonight! Finding good veins for the canula is getting more difficult as some of the ones they have been using in the past are hardened from the treatment.

Also, my oncologist spoke very positively today and how well things seem to be going in his opinion. We discovered that I will probably receive only two more rounds of chemotherapy (and so chemo and radio will end around the same time). At that time, we'll wait four or six weeks for the radiotherapy to have its maximum effect and then repeat CT and PET scans to see where things are up to. We're praying that the growth will have either disappeared or no longer be active.

Today we discovered that a very friendly Christian lady we met a few weeks ago and talked to again today while waiting for chemotherapy is someone we've been praying for every week at All Souls, the sister of another All Souls member also undergoing chemo. It was encouraging to hear her story (and that of her niece, who accompanies her) and see her joy in God (she has only come to follow Jesus fairly recently, having been introduced to him via her niece).

Update: 30th Jan

The cost of cheap Thai
Today I had a bad afternoon. After eating cheap Thai on King St for lunch, I had food poisoning and needed to go into RPAH (my local hospital: Royal Prince Alfred Hospital) for a few hours to get checked out and have some fluids replaced. I've been told that during chemo, if I start to feel sick, I ought to go in and get checked out, because if my immune system is too low to fight an infection, then what might usually put someone in bed for a few hours could become much more serious. As it was, the food poisoning came and went quite quickly and I was in no serious danger, but it wasn't a pleasant afternoon. At least I had a good morning.

Tomorrow, I will go in again and have chemo #5 if my white blood count continues to be high enough. Today was day #20 (of 33) of radiotherapy.

In other news, our second week at our new church, All Souls Anglican, Leichhardt went quite well. I preached at both services on 'Global Scarcity', the fifth and final sermon in a summer series on globalisation. Sometime soon, it should be available for download from the All Souls site. We continue to feel very welcomed as we get to know more of the community.

Update: 24th Jan

      The Psalms end with this invitation:

Let everything that has breath praise the LORD.

- Psalm 150.6

      I have plenty of reasons to praise God at the moment, since I am now halfway into my treatment cycle and my breathing is basically back to normal. Although it will be a number of weeks before we have any more scans, at this stage, it seems that the tumour is shrinking (at least my bronchial tube no longer feels obstructed). Things have changed a lot since Christmas, when I would wake every few hours to find my left lung wasn't getting any air! I have exchanged some of the direct effects of the tumour (breathing and coughing) for side-effects of the treatment (mainly tiredness and weakness, but also some difficulty swallowing, which will grow as radiotherapy continues).
      Today I had my fifth (weekly) chemotherapy and seventeenth (daily on weekdays) radiotherapy sessions. They have all been going smoothly, apart from a sudden reaction two weeks ago during the administration of one of the chemotherapy drugs. Although not uncommon, the speed and intensity were quite scary as within sixty seconds I flushed, became very short of breath and had intense back pain for a couple of minutes until I was given drugs to counter it. Since then, I've been given an extra-strong dose of steroids before each chemotherapy, which has prevented another reaction but disrupted sleep on Wednesday nights (and given me a big appetite - I am still putting on weight, having been told by my dietician to enjoy a high protein, high calorie diet (!)). Generally, however, my sleep has been better and our daily life has been fairly 'normal' during January, albeit a little slower than usual with both of us feeling tired much of the time. I have also sometimes been having difficulty concentrating and find my increased absent-mindedness frustrating.
      Jessica and I have both started work for the year. Jess is working 3 days/wk in St Leonards as a social researcher. On Sunday I also began 3 days/wk (or some fraction of it, depending on energy levels) at All Souls Anglican Church, Leichhardt as a lay ministry assistant. I had energy on Sunday and enjoyed meeting new people. We're looking forward to getting to know and be part of this community at greater depth, as well as trying to reach out to the local area, particularly to those in the 20-30 somethings. If you're looking for a church around Leichhardt, feel free to drop in on a Sunday (10.00 am or 6.30 pm, cnr Norton and Marion Sts).
      We've been thinking recently about how it's important for the cancer to not become the centre of our lives and routine. Life is a gift and staying healthy is a good aim, but is not the most important thing. More important is continuing to grow in our love for God and those around us.

      For those who pray, we continue to appreciate and thank God regularly for your support. Here are some suggestions.
      Give thanks:
            • For continued improvements to breathing and the reduction in the growth.
            • For new opportunities to work and serve, especially for the community at All Souls, Leichhardt and what God is doing amongst them, which we'd love to join in on.
            • For unexpected acts of generosity and support from a wide range of people.

      Pray:
            • That the treatment would continue to reduce and remove the tumour with minimal and manageable side-effects and no further reactions.
            • That as we enter new contexts we would both have energy to keep caring for one another and strength to build new relationships of trust and grace.
            • That our focus would remain on the primary things (loving God and neighbour), with secondary tasks taking their appropriate place.