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.

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.

One more CT scan

Next Tuesday I am booked in to have one final CT scan before we head off to Scotland for the next three years. This will be my sixth CT scan. It is a little strange to be having this scan after just having had a clear PET scan last week (my 3rd), since I don't quite know what this could show that the PET would miss.

In the last week, I've met up with two old friends (whom I rediscovered through Facebook) who hadn't heard about my cancer. It's a little surreal to go back to the initial reactions all over again (but sped up since they hear the whole journey in a few minutes).

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.

Next scan...

...is booked for Tuesday 15th April, which is a day before the first anniversary of getting the first clear result (we missed the anniversary of the first encouraging result, which was a week and a half ago). The upcoming scan will be the fifth CT scan after treatment.

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.

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.

Next scan on Thursday

Having been away for a few weeks, I have now returned and am able to have my fourth post-treatment CT scan this Thursday in Newtown. The gap has been slightly larger this time (more like three than two months) because of Christmas and holidays. I hadn't been thinking about it at all until we returned on Friday night, but since then it started to grow again in my thoughts and prayers. Hopefully, nothing else has been growing.

Still all clear

After the delays mentioned in the previous post, when it actually happened the scan today was quick and uncomplicated. Apart from some more scarring on my left lung from radiotherapy, there was no significant change from my last CT scan. This is excellent news and a weight off my mind. Praise God!

Third follow-up scan

I was due to have my third follow-up CT scan a couple of weeks ago. My oncologist has been away and the imaging place where I've had all four CT scans had been engaged anytime I rang and wasn't returning emails. It's good to go back to the same place so that all the scans are done on one machine, so I persevered in calling them. Eventually, I made a trip in to the city to see what the story was, only to find the site closed up, the interior stripped bare and no signs or indication if this was a move, renovation or permanent closure.

So yesterday I organised to have my next scan closer to home, indeed just down the road at a medical centre associated with RPAH. And I managed to get an appointment for later today. So as of one minute ago, I've started fasting for the required four hours before my next scan.

Although I've had no physical reasons to think this one might be any different, the extra weeks of delay have added to my feelings of anxiety. I trust that God will be with me whether I am sick or well, but it's also natural to get a few butterflies. I'm glad that it will soon be over.

PET scan clear

My PET scan at RPA today confirmed the CT scan from a week or so ago in showing no new cancerous activity.

Some people really don't like PET scans because you get strapped in place and can't move at all for about twenty minutes while you lie encased within a cylindrical machine that measures your radioactivity (after you've been injected with radioactive sugar). If you're claustrophobic, I imagine it could be quite distressing. I don't mind it (apart from getting an itchy nose) - an extra chance for a nap.

I discovered just a minute ago that contrary to what I said in my previous post, Prof Tattersal had not been planning on my having this PET scan until he noted a tenderness in a lymph node near my clavicle. I think I had just forgotten how uncomfortable a lymph node palpitation can be and flinched when he stuck his fingers into my neck. This also happened the first time he did it, but on subsequent times I was ready for it.

Yet another scan

I wasn't sure when I went to have my recent CT scan last Friday whether I would also need to have a PET scan (the second paragraph of this post explains what a PET scan is). I thought this would only be necessary if there was bad news, but having seen Professor Tattersal (my oncologist) on Tuesday, I found that he was planing a PET scan in any case. So I've just arranged to have it first thing Monday morning. I presume I will continue to have both scans every few months for the next couple of years.

Speaking of Professor Tattersal, I've really appreciated my times with him. He is always understated, has a sharp wit and a strong desire to make it into the Guiness Book of Records. He is also very geneous with his time and has made himself very easy to contact when needed.

At my Tuesday appointment, I asked how to minimise the chances of a relapse and he made three suggestions: (a) don't lose lots of weight, (b) exercise well (Jessica and I started a new exercise program a couple of weeks ago and are - amazingly - being quite consistent with it. We're starting slowly since I've lost a lot of stamina and strength) and (c) think positively.

As I was leaving, he also asked me to have a blood test "because you're here". It was disconcerting to go back into the chemo suite, even for a few minutes. There is so much pain and anxiety in that space. Even just sitting in a chair, I began to feel a little queasy in memory of past experiences. The nurses are very caring and competent, though the one taking my blood had trouble finding a vein (which didn't help my queasiness). Unfortunately, yesterday I received a call to ask me to come back in, since my blood had been misplaced. I'm just heading off there now. Another day, another needle.

Good scan!

My CT scan yesterday was fairly painless (no fiddling round to find a vein only to give up after too many attempts like last time) and even better, there was 'no suggestion of tumour recurrence seen'! In fact, the remaining mass has continued to shrink (they didn't give any measurements). So that was all good news. Thanks to those whom I know were praying (and to those who might have been doing so secretly) - and once again, an even bigger thanks to God!

Scan and voice

Tomorrow I will have my next CT scan to see whether anything has happened since the last one. If it is different, I assume I get the privilege of another PET scan. I'm not sure whether I will get the results tomorrow or Monday. Please pray that Jessica and I will continue to trust God as we await the outcome - and that it's a good one!

I also saw the speech therapist again yesterday and learned a few more things. First, I found that my left vocal cord is paralysed in a paramedial position (partially 'on', rather than fully 'off' as I had thought) and this is why my voice has returned to the level that it has (i.e. more than nothing, less than it was). Second, she very kindly invited me to a workshop she is organising for speech therapists to watch a world-famous voice teacher work with some of her patiences (one of whom will be me!). So I get a free consultation with a lady who normally charges over $200. The only price is that I'll have twenty therapists watching me as I do so. And third, I found that if I do end up having surgery on my larynx, this would involve the insertion of a bioplastic wedge to jam my left chord more fully on (rather than a collagen injection as I had previously thought). Compared to the injection, this sounds like a more uncomfortable procedure (a local anathestic while they cut your neck open; they need you awake so you can be testing your voice as they do it!); however, the injection needs to be repeated every few months, while this procedure would be permanent. Either option might only have a marginal effect on my voice (or none at all), though if I'm going to use my voice for a living, this could be worth it.

Next scan soon

It's been over two months since I received the all-clear from a PET scan and so about time to be scanned again. I've been trying to contact my oncologist this last week, but he must be on holidays. He's usually very good at returning calls quickly. It's been over two months since my last cannula, but my wrists are still tender...

UPDATE: Just found out he is away and will be back in early July.

Before and after

A tale of two scans
I've just realised that I never posted these amazing images. The first is part of my CT scan from 1st December last year and is two vertical slices of my body. The black path down the middle of each picture is my windpipe. Towards the bottom it divides into two (one bronchial tube to each lung). You can clearly see the growth (which measurements of its height and width) almost entirely blocking my left bronchial tube (though this is on the right of the image, since you are looking at my chest front on). This is why I was having difficulty breathing! In fact, I only really started having noticable trouble with my breathing a week or two later than this scan, when the growth must have been bigger. By the end of December, just before treatment started, this left tube was completely blocked at times (esp when I lay down).
Breathing easy
The second pair of images are from my most recent CT scan. This is the same region as the first scan. Notice the smooth sides of the windpipe and bronchial tubes. There is still a residual mass visible, but it is much smaller.
Cured?
This is wonderful - however, it doesn't mean a definitive 'cure', as I have mentioned before. I will continue to have regular scans every few months (another one is coming up in a few weeks). It is not until two years without any regrowth that they are happy to say that this growth has been beaten.