'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.

One more

I have only one more oncology appointment left. In January, I will see a specialist for the last time, get the same string of questions and the same poking and prodding for the last time, and walk out of the oncology ward without a future appointment (providing all goes well, of course).

I was going to call this post "X down, one more to go", where x is the total number of oncology appointments I've had over the years, but I'm really not sure how many that is. Not as many as some, but probably more than most.

Three and a half years on

In other news, it's been about three and a half years since I finished treatment and there has been no sign of any relapse, for which I praise God! I saw my oncologist a few days ago and am now only going to have appointments every six months, which will cease if I make it to five years.

Jessica and I were reflecting again with some Australian friends who visited recently that coming to Scotland was a very effective way of "moving on" from my period with cancer. We arrived to a situation in which I was no longer being asked about my health every day and where people didn't look at me and immediately think of cancer, loved ones they'd lost, their anxieties for those still ill, and their own mortality. Although these connotations often opened up some deep conversations, it also closed down other ones. It has been nice to no longer be a walking reminder of our mortality and to be a mere mortal again.

(Now people look at me and think of birth instead of death!)

Holey moley

Although the mole turned out to be innocuous, the wound they made getting it out hasn't been. Even though it's almost five weeks since the stitches were removed, it still hasn't healed properly and it starting to become more of a problem ("disintegrating" is the term they've used). So I'm in to see the nurses every couple of days at the moment for constant wound dressing and lots of poking and prodding. They reassure me that it's not too bad, but make vague rumblings about darker possibilities ("at least it's not tracking at the moment; that would be your worst nightmare" - that kind of thing. I find it so comforting).

Anyway, for any Edinburghers who may happen to be reading this, no pats on the back please!

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.

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!

Aurora Beatrice Smith

"By the tender mercy of our God,
            the dawn from on high will break upon us,
      to give light to those who sit in darkness
                  and in the shadow of death,
            to guide our feet into the way of peace.”

-Luke 1.78-79

Merry Christmas! God's new day has dawned in Christ and in this season we celebrate the new life we now share.

We are also celebrating another new life that has dawned upon us this season. On Christmas Eve we received an early gift when Jessica gave birth to a lovely and healthy little girl. We have named her Aurora Beatrice Smith. Aurora is Latin for "dawn" and Beatrice comes from the Latin for "traveller", bringing together the ideas in these two verses, which have been very significant for us over the last couple of years.*

The labour began around midnight and Aurora was born naturally around 1.30pm. Mother and baby are both in excellent health.

There are more details and photos over on Jessica's blog and I am sure they will keep multiplying there in the coming days and weeks.

We shared a lovely, quiet (and white!) Christmas Day yesterday and are delighted to have our "babymoon" in this special season of nativity and joy. With hope and delight we embrace the promise of Immanuel ("God with us") as we remember the birth of his son and welcome a beautiful little stranger as our daughter.
*See this sermon I wrote after being diagnosed with cancer.)

Still Not Dead

Today I finally saw an oncologist weeks after having my latest scan and he said that there were no problems to report. Next scan is likely to be another year or so away, though I will continue to have physical check-ups every three months. It helps if you are not ticklish for these!

I've now been clear for over two years and I no longer regularly think of myself as a cancer patient (even when I was very ill I tried to not let this become the primary description of who I was). For life and ongoing good health, I remain very thankful. Indeed, Jessica and I still begin each day (more or less) with the call and response from Psalm 118.24: This is the day that the LORD has made. Let us rejoice and be glad in it/him! Sometimes it is said a little grumpily or with a yawn, but the repetition is good for our hearts.

Even though I have been feeling much better (or perhaps, have been taking my good health for granted again), I have recently been thinking some more about what it means to die well. Here are some thoughts on the common phrase "dying with dignity".
This picture was obviously from a couple of months ago, since the temperature for the last few weeks has sat around a balmy 10-14ºC.

Scan and flashbacks: two years

Today I had my first CT scan in the UK. I was back at the Western General Hospital and it would have all been very efficient except the person who was in the scanner before me had some kind of emergency (I never found out what the issue was. I hope s/he is ok) and so I was left sitting in my hospital gown with an IV in my arm for almost an hour.

I won't get the result until I go back see the oncologist, and I won't know when that is going to be until I receive a letter informing me of my next appointment. Back in Australia, I would usually get the result that afternoon.

As my experiences of hospitals get further apart, that season of my life seems further away. It has now been over two years since I finished treatment. Yet returning to a hospital brings it all back. I suddenly see the chemo ward, or the radio room. Although these flashbacks are (generally) not overwhelming, they are quite unbidden and spontaneous.

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.

Oncology Appointment

Last night as Jessica and I were coming home we were discussing how I still hadn't received the letter I was promised when I visited the GP a few weeks ago. The letter was provide the details of an appointment with an oncologist. We had just decided that I would call the GP first thing in the morning when we arrived at the front door and found the letter! So no phone call for me. Instead, I'll be going to the Western General Hospital next Wednesday. Of course, from there I still don't know how long it might take to get a CT scan appointment.

Here's one reason I'm glad I'm covered by the NHS

One Australian dollar equals:

Getting acquainted with the NHS

I've now been in the UK for just short of two months and finally managed to see a GP today to get a referral to see an oncologist to be sent off to have my next scan (don't hold your breath). I am exaggerating a little about the delay, however, since registering with my local doctor required the completion of my university matriculation (enrolment). Although people are quite willing to complain about the NHS, I haven't yet seen anything to make me think public health ought not to be publicly funded.

One difference between GP care in Australia and the UK is that here you have to register with a single practice in your area and can only receive NHS funding to see a GP at that practice (until you change your registration). This means that patients can't shop around for the right diagnosis (or gather multiple prescriptions). It also means that all your medical records are collated in one place.