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.

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 month to go...

...until we go! We're in the middle of getting ready to ship things we won't be storing or taking with us. How do you decide which books should come and which should stay? It's not easy. Nevertheless, it's amazing how much you can fit into one cubic metre (which is how much we're going to be shipping).

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!

Attitude doesn't affect relapse

When it comes to cancer, it seems everyone is an expert. Once my diagnosis became public, scores of people wanted to make their suggestions about how to cure it. I received numerous books, talks, websites and pieces of well-meaning advice from concerned friends and acquaintances about various diets, miracle-working healers and the psycho-somatic effects of a positive attitude. While it was lovely to have so many people concerned for my welfare, I took most of the suggestions with a grain of salt or three. If even one in ten of the claims I encountered was true, it's a wonder cancer still kills anyone at all.

Of course, cancer touches so many lives, directly and indirectly, and we can feel so powerless in the face of it. So it is natural for us to wish to share the lifestyles and strategies of those who survive with people we love when they are facing a similar situation.

In any case, of the most frequent pieces of advice I received was about the importance of a positive attitude. While I do think having an ultimate hope for God's new world made and makes a difference to whether I bother getting up in the morning, it seems that attitude doesn't affect your chances of surviving cancer.

This might seem like bad news, but the illusion of control is a myth in all areas of life. We live our lives out of control. That is part of what it means to trust God.

Going to Edinburgh!

Personal update
I have been offered a place and a partial scholarship to research a theology PhD at Edinburgh University starting in September and supervised by Oliver O'Donovan. We haven't yet set a departure date as this depends upon Jessica's work situation. My initial project proposal is to consider the role of the church in a society in crisis (more to come on this in due course).

Jessica and I are delighted at this wonderful opportunity, a little apprehensive at the size of the task and more than a little sad to be leaving church, family and friends for three years. This has been a path we have been hoping to pursue for the last couple of years, though our plans were postponed when I discovered I was quite ill. I am very thankful for more life and now to be given such a gift. I am sure the next few years will be stretching intellectually, relationally, financially and linguistically. If you pray, we'd appreciate your prayers.

The scholarship from the School of Divinity at Edinburgh University covers approximately half my tuition fees. If you would like to support my education by contributing to the other half, you can use the secure donation button below, which accepts PayPal, Visa or Mastercard.

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.

Chemofog II

I've just arrived back from my CT scan. I won't get the results until later this afternoon. While I'm waiting, I thought I'd post about another appointment I recently had.

Back here I talked a little about post-chemotherapy cognitive impairment, often called "chemofog" or "chemobrain". A week or two ago, I had a chance to see one of Australia's leading specialists into the field. Formal study of the phenomenon is quite new (only in the last couple of years has it been recognised as a condition) and has focussed almost entirely on breast cancer patients (this is now being expanded to bowel cancers). Nonetheless, it seems that there is a consistent experience reported across many cancer patients of finding short-term memory and concentration more difficult during and after chemotherapy treatment. As I described my difficulties, I was told that I was a classic case. These complaints seem to be particularly common amongst more educated patients who rely on higher cognitive skills more often in their employment and it is usually upon returning to work that it becomes most noticeable. Although not nearly as pronounced as it was during treatment, my own frustrations surfaced again when I returned to trying to do some more "serious" reading, writing and lecturing in the second half of last year.

Although I am outside the scope of present research (having had the "wrong" kind of cancer), I was offered some follow-up with a neuropsychologist to more formally test for any cognitive impairment. The specialist I saw told me that my results are likely to still be within the "normal" range, since I probably began ahead of the game. Much more interesting would be to test how I go now compared with my function prior to treatment, which is, of course, impossible.

As I said, research into this phenomenon is still new, but the latest results seem to indicate that chemotherapy, while contributing to the problem, is not the only cause, as similar symptoms and testable impairment can be seen in cancer patients prior to their chemotherapy. Whether this is the result of stress or a function of the cancer itself (or even the body's reaction to it) remains to be determined. Interestingly, there are some similar cognitive problems encountered by sufferers of a few other chronic conditions (such as the early stages of HIV). Thus, calling this condition "chemofog" is probably a misnomer.

I'll post again once I have today's CT result.

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.

Whole days now go by...

...in which I don't think of cancer. Of course, I'm still within the two year period during which relapse is most likely and I signed forms acknowledging that I accepted the risks of chemo and radiotherapy, included in both is (ironically) an increased risk of cancer. Nonetheless, being sick no longer dominates my existence as much as it once did and for that I am thankful. I never wanted to let staying alive become the main game.

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.

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.