Thursday 8 August 2013

Indiana Ling?

For those of you who have asked the question 'How do you adjust to/cope with/come to terms with the knowledge that you have a terminal illness?', I think the considered answer must be, 'by degrees'. You may think, more than two years on since I was first given the news, that I'd be reconciled to the idea by now - but I am still insulated from reality.

So there are times, such as now, today, when I simply can't take in what is happening to me, when a sense of sheer incredulity takes over.

I 'know' that my life must be under threat because I hear people, skilled, well-paid, difficult-to-reach people, tell me so in a matter-of-fact way. It is implicit, rather than explicit, deduced by reference to the dwindling list of treatment options, the reported growth in nodules, the limited time-efficacy of drugs.

I know too, because I write a blog that people read, (or at the very least, visit) and then there are the concerned enquiries from friends and relatives - and so, my difficult-to-extinguish hope that this is all a mistake, or a dream, is unsustainable, in error.

The most recent reminder of my plight arrived yesterday.- but first, I need to take you back to my previous blog.

If you recall (I know there are other issues in your life, so forgive the reprise) my last CT scan revealed growth in the nodules/lymph node/tumour - these terms appear interchangeable at times - and as a result my oncologist recommended a shift from one to another, equally unpronounceable, drug. I was due to sign the consents the following week and we duly returned fully expecting to do so.

However, Diana raised at this follow-on appointment, the question of a different treatment for kidney cancer,  one pioneered by the Christie Hospital in Manchester; immunotherapy. She had first mentioned this approach two years ago but our consultant had deftly dismissed it in favour of oral drug therapy.

Two years later, he responded differently, saying that should we wish him to make a referral he would be happy to email the consultant in Manchester. We asked for a few hours to research and discuss before getting back to him later the same day.

To agree to a referral seemed a 'no-brainer' - there was nothing to be lost from gaining further information and a second opinion. So, the referral was requested by us and following a few days in Norfolk with the family, we returned to find an appointment had been made.

The date was yesterday's.

In the early morning, we joined the other teeming 'car-cells' and moved up the M6 hoping to avoid a haematoma in this artery well-known for its sclerotic condition. We reached the hospital in good time, thanks to the navigational skills of GPS, and after giving bloods and having my first-ever ECG, we met the consultant.

I won't bore you with the details but the upshot was that 'the Prof' as he is soubriqueted, considered that I was in the category most likely to gain from the treatment programme. The tantalising, if statistically remote, prospect of a 'cure' - never on offer with targeted drug therapy - was held aloft and eagerly examined but for such a glittering prize there is of course a high price to be paid.

Like Indiana Jones, in the Temple of Doom, I have to dodge the many potential and strikingly unpleasant side effects. The therapy works through the repeated intravenous infusion of a natural protein that supplements the body's own immune system, stimulating it to make killer T-cells that attack the tumour.

Patients are hospitalised for five days in two phases separated by two weeks recovery followed by eight weeks recovery. A CT scan follows before the next full cycle. If a patient is benefitting from the programme, there may be as many as four full cycles, spanning  something like a year in duration.

So, there's a decision to be made - and speedily. I have already been off all cancer medication for six weeks. I know what those close to me are thinking but they all say that ultimately, the choice is mine. You are probably thinking along similar lines.

Meanwhile, I have been shocked to discover - or is that rediscover? - that I have a life-threatening condition.

Writing to you helps me to process the fact. Thank you.

4 comments:

  1. Cheers for the update.

    Hang in there - the Manchester treatment sounds interesting.

    Keep these blog updates going, since many of us will ultimately have to go through what you're going though now.

    best wishes

    Martin

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  2. Thanks for the update Rod. It seems like a dream to us too and I'm not sure anyone can 'come to terms' with it. I know about Christie's immunotherapy, a form of treatment long mooted in cancer research, so I'm really glad you can have it and I'm sure you will benefit as somene else I know has done. Sending you and Di all our love and hoping you can help plan my vineyard 'conversion' in your recovery time, Judith xx

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  3. Rod,

    back from my summer vacation I find it very difficult to answer to your last post. The life I'm leading and the Topics I'm "normally" concerned with are so much on the "life"-side of living that I really have to make a serious effort to touch and grasp my feelings to your report (though what you are going through obviously is a possible and important part of life):

    _ first of all it's like a big fist squeezes my chest, my breath becomes slow and fainting and my head gets numb.
    _ I think about how your life could be, do you constantly think about "these Topics", the nodules, the possible Treatments ..................... I don't think so. I guess, that also with such a threat life somehow has to go on, like "what's on TV, how was breakfirst" etc, I get a Vision of a stage, on the back stage there are always those threatening Facts, and on the front stage, there is the Play of "normal" life, often interferred with someone coming upfront and saying "hey, do you know....". What I also realize with other People under life threatening conditions, that they don't want to talk about it. Their friends seem to be more concerned and want to talk about it, asking, trying to helplessly help, which can be very annoying I guess.
    _Concerning Treatment: it must be a shock to hear, that normal Treatment doesn't work any more. Then for hope: yes I think, there is always hope, even if there is not much evidence that it Comes true. But I read an article the other day, that in the Treatment of HIV there is great hope that by stimulating the body's own Response there is a good Chance, that someone can be cured in a short while. AND I think, if this Approach works, there is a really good Chance, because it Comes from your own "Forces".
    _ I'm wondering, if you will or already do undergo this Option of a Treatment. When I read your blog I had the spontaneous impuls to say: yes, do so!!
    _ and then I think about some People who decided NOT to undergo all these circles of Treatment, hope and disappointment after all and refused to "fight" any longer, which I feel is difficult to judge about if you're not in the same place.

    Rod, I tried to Approach you just by telling my feelings and Responses, I can't give hope, I can't rescue you, I feel the only Thing I can do, is telling you "I'm here, I have my feelings and Responses which I share, and if this is of some help, pretty well.
    I also like to encourage you to go on sharing your "Story". You remember, you sometime sent me your manuscript, which I read, and which didn't get published, I think. Now we are into another "Story".

    Rod, I'm with you, yes, I can say that, and giving loving and hopeful energies into the Chance of the new

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