55. Decisions decisions…

I haven’t posted on here for a while but, for once, it’s not because I’ve been in my cave. On the contrary, it’s because I’ve been out there living life to the full, and it was only today that I actually stopped to face reality and let myself cry about my current quandary.

Walking down Haarlemmerdijk, I was asking myself, no, telling myself “What good will it do? Crying won’t change anything.” And even though I know crying can release built-up emotion and make you feel better, today I didn’t feel it would change anything. What was getting to me was that I feel I’m running out of time, and crying won’t buy me more time, it’ll just waste it, so how can that help?

Then I got a text from a friend, simply saying “You ok?” and I realised that I hadn’t replied to his previous three messages, and that (by my standards) is a sign that I’m generally not ok. So I put my phone back in my bag, made my way to my local, sat outside in the sun, ordered a glass of wine, and started to text him back.

I then found myself starting to put down in writing (for the first time) how I’m feeling. And by the third message, my phone was ringing.

The clinical trial

In a previous post (“Months…”) I said I might be eligible for a clinical trial – I am eligible, and I found out this morning that I’m 3rd on the waiting list, but the trial may only have 2 or 3 places available.

So if I get in, do I want to do it?

You’d think it’s a no brainer, right? But it’s not. In a simple choice between fighting to live longer or taking your chances, I’d be up for the fight. But I’m also a numbers girl, and the numbers aren’t so simple.

The chances of success

Clinical trials generally come in 3 stages:

  1. Super new stuff, not tested before, where they’re looking for patterns or trends (eg who it works best on: men/women, old/young etc). Odds of success: c.5%
  2. Stuff that’s completed stage 1 (so they have an idea who it works for) but they now need to understand how well it works (ie getting quantitative data to support the patterns they’ve identified in stage 1). Odds of success: c.15-20%
  3. Stuff they now understand but need to determine how best to get it into wider use (ie it’s better taken in this dose, at that time of day etc).

There are studies happening all the time, as new treatments are being developed and tested, but we need one which is suitable for triple negative breast cancer. There’s one such trial in the pipeline, which uses a combination of three drugs. Two have been tested before in isolation (so they understand them a bit) and the third hasn’t (although similar drugs made by other companies have). Because the combination hasn’t been tested before, it’s technically a stage 1 trial, but based on the results of the similar drugs, they feel the success rate is more like a stage 2 trial, so 15-20%. If it works, it typically works well – adding years to my life expectancy – but for 80-85% pf people, it doesn’t work at all.

The treatment

It’s called immunotherapy – this means reprogramming your immune system to work differently. If you think of your immune system working like an airport Xray scanner; each bag (cell) is scanned to see what it is. If the scanner (your immune system) thinks it looks nasty, it opens it up to see what’s inside, then puts it back on the belt once it’s happy it’s clean. Cancer cells put on on a white coat and stand against a white wall, so when they pass through security (your immune system), they appear to be clean. Immunotherapy reprograms the scanner to remove the white coat and look more closely. By doing this, it (your immune system) learns to recognise cancer cells and deal with them, naturally.

The side effects

The downside of your immune system getting overactive means that it can scrutinise cells that are perfectly healthy, like those which control your organs: your heart, your lungs, your intestines… It is possible to treat the side effects… with steroids.

In the past three years fighting cancer, I’ve managed to withstand three kinds (14 rounds) of chemo, two kinds of radiation (low dose and high dose stereotactic), a lumpectomy, lymphedema and even brain surgery. But the one thing which broke me was steroids. They are crucial and there to do a job. They saved my motor system and prevented me from further / long-term paralysis. But they made my life a misery, caused more psychological pain than I could ever articulate, and if I could do anything to avoid having to go back there I would.

The timescales

A few people have told me recently that, if you didn’t know, you wouldn’t know there’s anything wrong with me. And aside from feeling stiff and tired every morning, and having limited flexibility, I feel pretty normal in myself.

But I also know how fast things can change. When I got back from Rhodes last year, I went from walking off a plane with my case, unaided, to being admitted to hospital because I couldn’t stand up in the shower… in four days.

So the doctors have told me that, if I do nothing, I have a matter of months. And I believe them. But ‘months’ could be two or ten, and there’s no way of knowing.

The decision

Best case: if I do this and it works (15-20% chance), I could have years left, by which time a permanent cure could be found.

Worst case: if I do this and it doesn’t work (80-85% chance), I’m left with whatever time I have left. But if all I have is months, do I want to spend those in treatment, or living life to the full? Right now, I think the latter, but in a matter of days, that could change and would I then regret not giving it a go?

If I decide to do it, there would be a few weeks of screening (blood tests, scans and another biopsy) before the treatment would start. It would then be 8 weeks before the first review scan. At that point, the tumours can appear bigger, either because they’re still growing (ie the treatment isn’t working) or because there’s more edema around them (ie the treatment is working). In that case, another scan comes 4 weeks later, to review things again. So it could be 12 weeks into treatment before we know if it’s working. By that point, the side effects may already be an issue, or they may not have happened at all. It’s all unknown; that’s what they’re trying to learn, that’s why there’s a trial, and that’s how I’d be helping them.

So what am I going to do?

Honestly? F*** knows! Right now, the trial isn’t even open for registrations.
Once it opens, there may not be enough places for me to be included.
And if I am, the screening may present reasons why I can’t do it.
But if screening is clear, I’d need to start straight away, before the cancer takes hold again.

So burying my head in the sand isn’t an option. It’s unquestionably the biggest decision I’ll ever have to make. I always thought that if you wanted something enough, you could make it happen. But not with this. I’ve spent the past two weeks trying not to think about it, but today I realised that I have to. And that brought on the tears. Not tears of fear of what lies ahead, but because I feel I’m running out of time to do things I want to do. So I’m prioritising – what would make a difference, what would make me feel good, what would I enjoy, what would make me happy?

And it’s those things I want to do now. Hopefully, I’ll be doing them for a long time to come! But it’s like being on your last day on an awesome holiday; you know you might be able to come back one day, but while you’re there, prioritise the things you really want to do. Then if you can come back another time, you can do them all again or see the things you didn’t get to the first time!

So while I wait for the trial to open, I’m cramming in as much as I can: in Amsterdam, Paris, York, Oxford, London, Epernay, Bordeaux, Marrakesh, Berlin, Nice, Monaco, Rome, Milan and tomorrow I’m off to Lake Como…

And to the friend who sent me the “You ok?” text and had me laughing again within minutes; the friend who then texted me with boarding pass for tomorrow’s flight, saying “It’s happening!”; and everyone who’s been asking for updates (sorry it’s taken me so long!) – you all ROCK and I love you beyond words 🙂



2 thoughts on “55. Decisions decisions…

Add yours

  1. A very frank posting Bok and I have no idea what to suggest. Critical decisions and those I would imagine most folk have never had to face. Saying what I might do is probably not that helpful as I am 30 yrs older fhan you! However from my perspective it would be do those things that you have always wanted to do. Side effects of treatment are always a challenge and certainly you especially know that. From what you have said the steriods have a material effect on your physical and psychological well being. I am having a course of injections for prostate cancer -the side effects hot sweats, going to the loo every couple of hours or less and elimination of ones sex drive are perhaps no more than an inconvienience and in comparison to what you are facing an irrelevance. So my thoughts would be do what your heart tells you Bok. Not especially helpful I guess but all the very best with any choice you make. We are all thinking of you. Lots of love Jerry and Jo xx


  2. You just do whatever you want my lovely. You have our undivided love & support. We are always here for you. Live laugh love to the best of your ability. XX


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