Monday, 23 July 2018

Sweltering

Helter Skelter in a summer swelter. The birds flew off with a fallout shelter. Eight miles high and falling fast
American Pie - Don McLean

Got to love the unrelenting heat ... KFLC = 291 (as of 22nd June) ... 

Not much to report, really. It is now 6 months since I began my chemo. Various delays have dragged the process out even more than I had anticipated. 25 weeks down, but 6 still to go. I'm pretty much fed up with the whole experience. I can't even be bothered to regale you with the story of the week we just wasted while the hospital forgot to order my next consignment of drugs. My sister came to stay last week. It was lovely to see her - and a load lifted, for Marisa, to have someone else to cook the tea, and walk the dog. I'm thankful for that. Each week is one closer to the end.

My light chains continue their slow descent, which is the main thing. The last month's results indicate that I will be approaching this transplant process with my myeloma more suppressed than last time round. Indeed, I'm hopeful I will start this SCT with my light chains almost where they were at the end of the last one. That makes me optimistic the outcome of the transplant will be another deep long remission* (though there's nothing certain, at any point, about myeloma prognosis).

I'm fairly sure that my myeloma is no longer contributing any symptoms. My ups and downs, of which there are still too many, must all be drug side effects (mostly, I blame the thalidomide). I'm endeavouring to live quiet and subdued, so as not to disrupt or provoke my body. It means I do little, but if it reduces the flare ups of bone pain, or infection, its worth it. Frustrating though. And boring. I can't help wondering about the figure I cut. I can see in the mirror that I look reasonably healthy, except I can't stand upright. But I imagine that the rest - getting up late, sitting in armchairs a lot - bears more than a passing resemblance to laziness.

Yesterday morning I waved off Marisa and the boys as they headed to the airport and a flight to the French Med. A friend has generously invited Marisa to start the school holidays with a week at their family's holiday apartment. I figured my presence wouldn't add to anyone's enjoyment.

So, I have a week on my own. I'm going to take myself down to Sussex and enjoy the weather. Peace and quiet has a certain appeal, and anyway, mine is an inherently lonely journey. Strip away the various illnesses and the aches, and the most notable aspect of the last 6 months, is the enveloping solitude. My 2018 hardly intersects with anyone else's. I do look forward to rejoining the world around me as a proper participant, when this leg of the journey is done.

I had hoped to be out of treatment during the school holidays, but that is not how it has worked out. Despite the chemo, we have booked a holiday for the last 2 weeks of August. Assuming I can get my pharmaceuticals through customs, I'll be taking my last few pills, and hopefully not too stricken with aches. We will be staying at an all-inclusive resort, very much not our normal style. I'm really looking forward to it. It will give Marisa two whole weeks off; offer the kids plenty to do; and let me sit by the pool without feeling like I'm a big drag anchor.

I am, as always, incredibly grateful to Marisa. She has carried the load, again, this year, and put up with me. (No-one would want to have to share a bed with me, I can assure you. You have no idea.) It seems too little, on my part, to have merely taken my pills, and tried not to moan.

Still, the end is now in sight. I'm looking forward to being more fully present. Yes, I'll still have the transplant to get through, but that is a known quantity, and finite. So, I have this week to embrace my solitude. From next week, I want to be able to enjoy the summer with my kids and my wife - to emerge from the chemo-fog back towards some approximation of normal. I'll still have to take it easy for a little while longer, because I still have a few more weeks' drugs to take, but it's not so long now.

* There's some discussion, on myeloma threads, about whether myeloma actually has "remission". In the sense applied to some other cancers, where "remission" means "gone away, hopefully not coming back", it does not, because it is always in the process of coming back. But in the "remitting/ relapsing" sense applied to some other diseases - such as multiple sclerosis - it very much does. For me it is most helpful to think of my myeloma in terms of managing a chronic disease. And I use the word "remission" in that context.


4 comments:

  1. It's tough for you both. I obviously know how difficult it is for Marisa which doesn't detract from your suffering, I just haven't experienced it from your point of view. I remember how frustrating it was that Mike's SCT didn't happen when it was originally planned. So much had to be cancelled or changed. I hope your second SCT goes as smoothly as possible.

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    1. Thanks Lorna. Yeah, one is perennially cancelling and rearranging things. Planning, beyond a few days, is nigh impossible. But we'll get there. Somewhere, anyway! Not long now. Love to both of you

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  2. Will they re-harvest your stem cells or will you be using a previous collection from last time? I notice you expect better results going into the next transplant at the end of this current induction phase.

    Stephen.

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    1. I have plenty of stem cells still in the freezer from last time. The question is how long do frozen stem cells stay viable. Mine, which are 5 and a half years old, are almost certainly fine. But if I were to rely on them, and there turned out to be a problem, it would be too late to do anything about it. My doctors judge that it is more prudent to harvest new ones than to rely on the old ones. So that is what we shall do.

      I’m optimistic about the outcome - because there’s no reason to think my myeloma is any more resilient to the ITD (ixa/thal/dex) I’ve had this time than it was to the PAD (velcade/dox/dex) I had before. Statistically, previous patients have, on average, gained shorter remission from second sct than first. But that data predates the range of treatment options we have now.

      There’s every reason to hope for better. But, at the same time, I know how unpredictable myeloma always is. I’d hesitate to say I “expect” any response.

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