It ain't that kind #1 (23 Sep 2012)
It ain't that kind: 18 months on (20 Mar 2014)
It ain't that kind: two years on (31 Aug 2014)
... things are, I'm afraid, starting to get complicated. As I mentioned in the previous updates (linked above), surgery was never an option. But I had very good response to first-line chemo with cisplatin/docetaxel, and a later second-line chemo with 'GemCarbo' (gemcitabine-carboplatin), and was in pretty well complete remission until autumn 2014.
Since then there's been some lymph node progression (I had successful neck radiotherapy in November) and - the onset probably masked by a nasty viral bug I had around that time - since the beginning of 2015, I've been troubled by a cough and serious hoarseness . I sound like the Mouse in Samuel R Delany's Nova ...
His voice sounded like wool with sand, grinding.... and I can do effortless impressions of Papa Lazarou from League of Gentlemen. The problem seems to be pressure on the left recurrent laryngeal nerve from chest lymph nodes, and I had radiotherapy in that area in February, trouble-free, but without notable improvement to my voice.
I'm still OK in myself; the cough at least is helped by over-the-counter codeine linctus and the occasional top-up with Oramorph. But it's a depressing development. For instance, I can't sing (which impacts on musical performances) or speak very comfortably for long. There are some further treatment options, such as the possibility of giving third-line chemo a go - the oncologist said a few taxane-based drugs could be worth trying - and there may be more 'spot-welding' radiotherapy. The major options are exhausted, though, and it seems that my treatment has reached a 'whack-a-mole' stage with no palpable hits guaranteed. That's rather a milestone, and not in a good way.
If all goes well with no further surprises, I have another scan and review scheduled for mid-April.
13th April, 2015
It feels pretty decrepit, but last week I had the planned setup appointment with the local hospice. As I said previously, this isn't an indication that I'm dying. But it puts me into the loop for a telephone contact system, with my details on file, for potential future use on problems, such as day-to-day medication advice, that are too case-specific for the GP or general NHS system, but not sufficiently major to bother the hospital's oncology or emergency departments.Without being alarmist, I have to admit that it has come to a stage of needing a bit more monitoring: imperceptibly, rather a deskful of various medications have crept up on me for various things, particularly the cough, shortness of breath, and pain at my first radiotherapy site (I suspect a spot of lymphodema). That's not to mention further medications to counter bad effects of the medications.
Today I had an ENT appointment, when they did a quick endoscopy that rapidly confirmed that my voice problem is down to a classic example of left recurrent laryngeal nerve palsy - damage to the nerve that drives the left vocal cord. It's permanent (another metaphorical red light on the board) but there is a procedure to inject a filler that centralises the paralysed cord and can improve voice production. However, as it's not causing any clinical problems such as aspiration, we agreed to delay the decision on that, pending my forthcoming scan results and future developments. Apparently it can improve a little if the unaffected cord compensates, or worsen if the affected one atrophies. One further downside, voice apart, is that it has left me with a horrible-sounding (and characteristic) 'bovine cough' where the larynx doesn't close, so you make a "Hoowuff!" noise - more like an irritated swan than a cow - rather than an honest cough.
20th April, 2015 - a pause for explanation
I've occasionally been asked - and have wondered myself at times - why I'm writing this account. I'm not especially a diarist or given to much direct personal disclosure in the blog (though I'm sure a deal is readable between the lines). I suppose the straightforward reason is the hope that it might be of guidance or information to others. True, cancer narrative blogs aren't difficult to find; apart from those on personal weblogs, you can go to cancer charity websites and find hundreds, neatly categorised by cancer type.
Nevertheless, I felt it was worth adding to this: metastatic cancer of unknown primary, while not wildly uncommon, isn't much publicised, and comes with its own specific problems. One is the sheer uncertainty for sufferers during diagnosis; there's never the feeling of there being a clear point of attack at some location. Another is the generally poor prognosis: in most cases, you know from the start that a cure isn't an option, and only palliative treatment is available. A third is the whole paradoxical situation: while it varies, at the time of diagnosis many sufferers aren't very 'ill' - or, as in my case, 'ill' at all - and if palliative treatment works, they can be in an extended situation of "living with cancer" (as the self-help leaflets put it) and that's a complicated place to be. I likened it way back to the situation of the protagonist in the movie DOA (either version), who has been poisoned by a fatal "luminous toxin" and has limited time to find out who did it - and finds a kind of empowerment and vitalisation from the urgency of the situation.
And that, more or less, is how it has worked. I can't pretend to have thrown off my tendency to procrastinate, but I've had around two years of symptom-free remission, and put it to good use: a lot of coast walking, a book finished, and probably the best historical research blogging I've ever done. Those two years also brought some unpleasant surprises. Despite the feeling of my being the one with the death sentence, I've outlived two people I was sure would outlive me: my excellent stepmother Daphne, and my oldest and closest friend, Felix Grant. A lot can happen in two years.
While not everyone with CUP can hope for that amount of remission, I hope this account might help at least someone see that it's possible with some CUP cases, that the treatment is not a horror story, and also that it's possible to function productively despite a very gloomy prognosis. On reflection, documenting it here on JSBlog has also helped me remember all that too, and deal with the situation - and once you get past the practical rationalisations such as 'informative purposes', that's been one of the major reasons for writing it down.
27th April, 2015
Oncologist appointment today: not a wildly conclusive outcome. The scan result wasn't radically different; some neck lymph node progression, but no developments elsewhere. I'd rather hoped for some clear explanation of the cough and breathlessness, which is continuing to be a real hassle, even though I've upped the Oramorph dose on the advice of the hospice nurse. But the scan shows nothing notably obstructive. They've prescribed a low dose steroid - I check back in a month - on the possibility that it's inflammation, or fluid build-up from the lymph node involvement. (The hospice nurse also mentioned that breathlessness can be a later post-radiotherapy symptom - reading between the lines, I think they mean radiation pneumonitis - I'll ask at the follow-up). So we wait and see on that. They mentioned again the possibility of paclitaxel chemotherapy, but they didn't think it was yet called for clinically. I'm OK with that. They've been right so far about treatment decisions.
Clare asked what I've avoided asking (because I knew it was sure to be vague): general prognosis at this stage. To slightly paraphrase: without treatment, "Months ... maybe six"; with treatment, "Months ... maybe six". That's getting a bit more specific than the "Three months to three years" I was told nearly three years ago, but I can't find it in myself to panic. And on the plus side, my voice has come back to normal; a reminder that there often isn't any highly predictable course with cancer. But we are, I guess, at mid-game: I'm comfortably functional on a day-to-day basis, but it's suddenly taking a lot more management to maintain it.
27th May 2015
"Ninety minutes since turnaround," said Paradine. ... His voice remained level; he did not mention that the monitorscreens were giving incoherent readings, and that red lights were beginning to wink on and off among the green indicators.I guess a lot of people in this situation struggle for metaphors. At present, life is starting to turn into a continuous exercise in routeing around damage. I am, as you can see from my main weblog postings, very productive, and fine in myself for pottering about the house and getting to the shops and back (this side of things couldn't be handier - the greengrocer, chemist, post office, butcher and Co-op are all less than a minute away).
- MK Joseph, The Hole in the Zero, 1967
But the deskful of pills increases: ibuprofen and paracetamol, Oramorph for that cough, the low-dose steroid I mentioned, senna for the Oramorph, omeprazole to protect my stomach from the iboprofen and steroid. There are metaphorical red lights on a variety of lymph nodes I never know I had, and on my left arm, which has mysteriously swollen over the past few days - probably the axillary lymph nodes have packed up (I'm seeing the oncologist about that shortly). I have to be cautious about how I lie at night, and how and what I eat/drink, because various things kick off that cough, as does any exercise. I'm getting mysterious toe cramp that wakes me early most days: I'm not sure if this is to do with circulation, or the nerve damage from the original chemotherapy that left me with numb toes and a proneness to cold feet.
On the plus side, I'm now on a confirmed phone consultation basis with the local hospice on an information basis, and they've helped with things like drug dosage tweaks, as well as - and this was amazingly useful - suggesting and organising my application for PIP (Personal Independence Payment), which is a government grant for sufferers of long-term ill health or disability. Terminal illness affecting daily life - there, I used the "T" word - is one qualification, and certainly it's likely to be useful in areas such as travel for hospital visits. It felt a bit fraudulent when it was actually granted, but I have to be realistic that such things are needed now, and may well be needed more over the next months.
Pardon the blunt picture, but it's become increasingly clear it's more than mid-game now, but early end-game. I feel surprisingly resigned to it all. In a strange way, the reality of things moving on feels less stressful than when I was waiting last year, worrying when it would start. I gather it's not a uncommon experience.