And don't come back

Today I had my final oncology check up, at the end of which, I was told "don't come back (unless your GP thinks you need to, of course)". It was quite a milestone and I've posted some reflections on it over on my main blog.

But nothing wrong

I just received the report that my mole was entirely innocent and didn't deserve to be so rudely ripped off my back. Well, at least I get another scar to add to the collection.

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.

Going to hospital...

...for my first oncology appointment. Today I went to Edinburgh's Western General Hospital for my first oncology appointment in Scotland. Having questioned and examined me, the doctor was very pleased with how I am going, again expressing amazement when shown the before and after scans.

Although I have been having regular CT scans in Australia over the last twenty months or so, the oncologist said that in the UK, it is usual for such scans to only continue for the first year after (apparently) successful treatment. I will therefore not automatically get more CT scans, but will continue to visit the cancer centre every three months. If either I or my specialist have any reason to be concerned, then I will have another scan or endoscopy. At any stage between appointments, I can also call up if I am concerned and should be able to get a place at the next weekly clinic. The highest risk of relapse is during the first year after treatment with progressively less chance after that (never reaching zero, of course). So while they do not plan to automatically give me more scans, there is a "very low threshold" of evidence at which they will arrange for one.

I was also introduced to some of the support and nursing staff and in particular was directed to the Maggie centre, an information and support centre for cancer patients and their friends and family.
Photo from Blackford Hill, five minutes walk from our apartment. The hospital is on the horizon behind me, obscured by my head. This photo was obviously taken many weeks ago, when it was still possible to walk around outside in light clothes.

Sixth CT normal

"Stable CT with no significant change in the tracheo-oesophageal primary or the paramediastinal pulmonary fibrosis."

That was the conclusion of the scan I had this morning, which was both excellent news and not particularly surprising since the recent PET scan was also clear. The residual mass currently measures 1.6 x 1.2 x 1.6cm. I have some scarring in my lungs (pulmonary fibrosis) from the radiotherapy, though that has been there for a while. I can't remember if I've mentioned it here before, but my oncologist says it is nothing to worry about, though it does mean I probably won't be a world-record marathon runner (there goes one highly cherished dream down the drain).

And as small mercies, the two cannulas I received in the recent PET and CT scans have been the quickest and most painless of their kind I've experienced so far.

In Edinburgh news, last night we signed a contract leasing out our apartment when we leave and today I signed a shipping contract to get our books and clothes over there.

PET scan again clear

I forgot to mention that I was having another PET scan this morning. I have had PET scans at the initial diagnosis and at the first two check-up points (see here for a brief description). I haven't needed one since then, though asked my oncologist for one prior to leaving for Edinburgh (we depart on 4th August). I thought I wouldn't have it until mid or late July, but then I received a call just a day or two ago telling me that I was booked in (they didn't ask when would be a good time; they just said, "Here is your scan time. Be there.").

In any case, if you're waiting for me to get to the point and post the result, then you forgot to read the title of this post!

Fifth scan good

I've just received the results of my scan earlier today and it looks like there has been no significant change in the primary mass since last time - excellent news! I still have the better part of a second year to go before they'll say I'm cured, but so far so good. I thank God for more of this wonderful gift called life.

Vocal cord still paralysed

After my last speech therapy session, my speech pathologist was so impressed at the improvement of my voice over the last twelve months that she suggested I have another nasal endoscopy (camera on the end of a flexible stick stuck up my nose and through to the back my throat) to have a look at my vocal cords in action (or inaction, as the case may be).

Yesterday, I had just that. It was less uncomfortable than previously, but the result was still negative. According to the ENT surgeon, the minimal movement observed in the left cord seemed to be the result of my breath rather than any activity of the cord itself.

I was then offered more therapy and or surgery. The former would simply be revision of what I've already covered, so I declined. The latter would involve a half hour operation under local anaesthetic in which a small piece of plastic would be inserted into my larynx via an incision in my neck. This would push my paralysed left cord further over towards the "on" position, and, once adjusted with the help of a speech pathologist evaluating my voice during surgery, would hopefully give me a little more volume and endurance. I was open to this possibility, especially after giving a two hour lecture on Wednesday night and ending up very croaky yesterday. However, the surgeon warned that the benefits would likely be fairly small and suggested that unless my voice problems were significantly reducing my quality of life, it might not be worth the (small) risk of surgery.

When asked to assess where my voice was up to, I estimated that I now have about 60% of the functionality of my former voice, though this is adequate in about 95% of my life. I also think my voice continues to slowly improve (while leading services recently, many people have commented on my increasing volume and quality of tone, and my singing range has slightly increased). Therefore, we decided to postpone any further decisions until after another nasal endoscopy in May.

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.

Falsetto

One lovely gift I received around Christmas was the discovery that I can again use a falsetto voice. Once more, I can now join Bono in the upper registers (which, incidentally, was how I stumbled upon my renewed capacity).

My voice is still usually croaky in the morning or after much use, but the overall trend continues to be good. My speech pathologist is so pleased with the developments that I am to have another nasal endoscopy next week to determine whether some function might have returned to my paralysed left vocal cord.

Fourth good scan

My CT scan today went well. There is no evidence of any regrowth or new tumours. The residual tissue mass was slightly smaller again (1.5 by 1 cm). Praise God! I hadn't been particularly anxious until the last couple of days but this is another big relief. The only downside was a little more scarring in my left lung from the radiotherapy.

One year on

On this day last year (at about this time), I was diagnosed with cancer. I thank God for many things: that I'm still alive (it really wasn't looking good for the first few weeks); for the love and support (and generosity) of so many people over the last year, particularly my wife Jessica; for a wonderful (basically) free public medical system in Australia; for the chance to reflect with a little more depth and urgency upon death, fear and hope (amongst other things); and for "new birth into a living hope" (1 Peter 1.3), which gives us so much to live for now.

Voice update
Yesterday, I saw my speech pathologist for the first time in a few months. She was very pleased with my progress and said at the end of my appointment that I am the miracle case that she tells stories about. After our first few meetings, she had expected I would need surgery to give me back anything like an acceptable level of function, but my vocal strength, endurance and range have all slowly grown each month as I've (usually) practised the exercises she has suggested. I can now hold a conversation without needing to explain that I don't have a cold. I can now sing again, at least a little and within a certain narrow range. Best of all, I can once more pray and praise God amidst his congregation, raising my voice to join in worship, which is, after all, what voices were made for.

The next step will be another nasal endoscopy in late January to determine whether any function has returned to my paralysed left vocal chord. This is unlikely, but my speech pathologist is curious, given my continued and unexpected improvement. If there is any movement, I will continue to see her to strengthen it. If not, I will simply sing as best as I am able in praise of the God who raises the dead.

[With] this poor lisping stammering tongue... I'll sing thy power to save.

- William Cowper (amended)

Thymus: why do I get sick more often?

Had my regular post-scan oncology appointment today and the professor was happy with the lack of change in my most recent scan. He did his usual poking and prodding and this time I was careful to not overreact and score an extra PET scan.

After steadily improving since April or May, my energy levels seem to have reached a plateau over the last couple of months. I have been sick with colds and the flu a number of times, and they have hung around longer than usual. This has reduced the regularity of my exercise. Of course, by 'exercise', I mean nothing more strenuous than a 30 minute walk! In any case, I found out today that there may be three reasons for the frequency and duration of these illnesses: (a) already being somewhat run down/still recovering in my overall level of health; (b) radiotherapy scarring probably means that my trachea is less effective at thwarting airborne pathogens; and (c) my thymus was also in the field of radiation. The thymus is a gland in the centre of your chest that plays an important role in your immune system. I didn't ask him directly, but it sounds like the latter two effects may be long term.

Although it is months since my first good scan, I have been acknowledging again to myself in recent weeks that I am very much still in recovery mode, physically and emotionally.

Update: 16th April

The breath of God has made me,
     and the breath of the Almighty gives me life.

- Job 33.4

Good news!
It has been a month since I had a CT scan that revealed the growth in my chest had shrunk to about a quarter of the size it had been in early December.

This morning, I had a PET scan at RPA Hospital. This involved being injected with radioactive glucose* and then being scanned to see where I was radioactive. The glucose is taken up into cells with high activity: the brain, liver, active muscles - and active tumours. The pattern of radiation thus reveals whether any tumours are active.
*Technically, radioactive tracer in a glucose solution, since the sugar itself doesn't undergo radioactive decay.

But my scan was clear. There was 'no evidence of viable tumour activity' . This means that the remaining tissue revealed last month on the CT scan is simply dead scar tissue. Praise God! This is what we've been praying for and the best outcome we could have hoped for after the diagnosis in December.

From here, I will continue to have tests every few months to check for relapse. If I remain clear for two years, the likelihood of it returning becomes much smaller. But for the moment, I have been spared. And for this, we are thankful.

I know there are many others who do not have such good news today, but who continue to struggle with illness and a variety of difficulties. Why have I been spared at this time? It is not a reward, but pure gift, like all life. We remain thankful for every day.

What has changed? In one sense, not much. I will still die sooner or later and I continue to trust the God who raises the dead. I still follow one whose path of faithful obedience meant suffering amidst a groaning and broken world. Health remains a good gift from God's Spirit, but not the goal of life. There are worse things than sickness and death.

Yet, of course, today's small mercy is worth celebrating: more life together with you; more opportunities to serve God, his world and his people; more time to tell of God's goodness to us all. I am looking forward to celebrating with friends and family, not having any more needles (at least until the next scan), and starting to once more think about the future beyond next week.

My health continues to improve after treatment ended two months ago. I have more energy and am able to eat most things. I am beginning to work at improving my vocal volume with the help of speech therapy. I have lost all my convenient excuses for avoiding the exercise regime that Jessica and I have been promising each other for years.

Thank you for all your prayers, love, cards, food, gifts, kindness and presence (even in spirit). We have really appreciated your company on this leg of our journey and look forward to more adventures together (hopefully for many years!).

At this milestone, we think it's appropriate to give thanks and celebrate God's kindness to us. And so, Jessica and I would like to invite you (and any interested others you know), who have supported and prayed for us, to a thanksgiving service. We haven't yet worked out any details, but we'd love to acknowledge that we are and remain recipients of undeserved grace from you and our heavenly Father. We'll let you know date and time soon.

Of course, we'd still love your prayers:
Give thanks: for so many things - I'm sure you can think of some!
Pray: for those who face disappointment and not joy today; for patience and discipline in trying to strengthen my voice; and that we will not forget the lessons we have learned.

Update: 13th April

PET scan next week
Just got a call to say that my PET scan will be on Monday morning 9 am. I fast for five hours beforehand (so that I'm ready to go really slow for a few hours...). This scan is to determine whether the residual mass revealed in my most recent CT scan is still active or is merely scar tissue. I get an injection of radioactive glucose (sugar) and sit very still for an hour. Sugar is picked up by cells that have been active (which is why I sit very still - so that as little as possible goes into other muscles), particularly the brain and active tumour cells. I then lie inside a large tube that functions as a 3D Geiger counter, measuring where radiation is coming from (i.e. which cells have been picking up the glucose). I probably won't get the results for at least a couple of days. I'll post an update here as soon as I know.

Speech therapy
In other news, yesterday I went to my first session of speech therapy proper and have been given a variety of amusing sounds to practice. I would have been really good at being a speech therapist before I lost my voice - I used to love practising silly noises.

Update: 29th March

Nasal endoscopy
I've just returned home from having a second nasal endoscopy. Not the most pleasant experience (although there are worse places to stick an endoscope, I assume), but second time round the results were not quite so surprising. It was a similar procedure back towards the end of November that first discovered my paralysed left vocal cord and which led to my first CT scan that found the tumour.

Options
This time, the result was the same: a palsy (paralysis) of the left vocal cord, most likely from nerve damage to the nerve that controls it. I have two options: speech therapy to help my right vocal cord compensate (more than it already is, since the gradual improvement of my voice since October is the result of this tendency); or a surgical procedure to insert a piece of plastic into my larynx in order to turn my left vocal cord permanently 'on'. Non-invasive procedures are nearly always better to try first, so I will give speech therapy a few months and see if there is any improvement before I let them take a knife to my throat.

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 March

It has now been about a month since I finished treatment. This Wednesday I have my first post-treatment scan. It will be a CT scan to determine the size of the remaining growth (if any). In another month I will have a second scan (a PET scan) which will give the other half of the picture: whether what is left is still active. Thus, while there may be something left, this could just be scar tissue and it will be another month before it is possible to tell. However, Wednesday's scan will also (hopefully) rule out the worst case scenario of there being secondary growths indicating that the cancer has spread. More on Wednesday (or possibly Thursday), when I will send out another group email (and post it here too).

Update: 14th March

Although for the last month or so I have been eating only liquids, over the last three or four days I have started also having some soft solids, which is very exciting, since it means my oesophagus is healing from the radiotherapy burns. Grace before meals is said with particular emphasis these days.

Update: 1st March

Turned the corner?
After getting gradually worse for each of the last eight weeks, it feels like things might have finally turned a corner, since I feel a little better than I did at this stage last week (when I was just coming home from hospital). I am still only consuming liquids, but they are going down a little easier and faster than they were. Similarity, the burn mark on my back is healing well and is no longer itchy or sore. Feels nice to be on this side of the hill.

Here is a picture of my typical breakfast at the moment.