It feels like ages since I updated the blog… and so much has happened. But every step has felt so little in terms of medical progress, it hasn’t felt worthy of an update. There’s also been a little cave visit in the midst of it, which has left me a bit reluctant to post an update. But I can safely say the cave is now locked again, and I’m on the outside, embracing life 🙂
Fly in a jam jar
A colleague at work used this phrase withe me years ago (thank you Kate Richardson) and it’s kinda stuck. I can’t sit still at the best of times, but when I couldn’t travel during treatment it drove me nuts, so I was always going to make up for it as soon as I got the green light.
Since finishing chemo in March, I first had to wait a few weeks for my (very depleted) blood to recover, and have since been living up to my mantra. First was champagne tasting in Epernay (and restocking a wine rack which has since been enjoyably depleted again). Then home to Yorkshire for Easter (flying with my Godson, who came over on his own aged just 14, something I’ve been promising him for a long time but some stupid disease has since got in the way). Then the biggie I’d been planning for weeks – the F1 in Baku (where I was given full VIP access to the team, paddock, garage and after race celebrations with McLaren – I like to think I’m a good luck guest, so all future invitations are welcome…) Then heading to Bordeaux, to catch up with my best mate and her son (who’s baby shower, birth and first few months I missed while I was in chemo – although I was especially pleased / quietly amused to see him already reaching out (in the correct sense) and grabbing her glass of Saint Emillion – good boy Sonny!) As I landed back at Schiphol (having run out of clean underwear), I switched on my phone to a message from the boys in Amsterdam, saying “you know we were going for (dinner at) the Moroccan on Friday night, how do you fancy doing it in Marrakesh? We’ve found flights and a fab riad…” I needed little more incentive; they had me at ‘Marrakesh’, and it was booked before I cleared security (I wasn’t just smiling at the decidedly hot Dutch border control guards, of course not). Home, unpacked and undies washed, I hit the skies again and headed to Berin – a city I’ve wanted to visit for years, and it didn’t disappoint. From there, I flew down to Monaco to catch up with the F1 fraternity (and have the best steak at Maison du Caviar, which didn’t disappoint second time around) before flying on (supposedly in secret) to Rome, to surprise my bestie (who, of course, wasn’t at all surprised to see me) on her birthday (why shouldn’t you fly to Italy for lunch on your birthday?!) Not having had enough of the Tifosi; four days later, I joined another friend for a long weekend in Lake Como, where we entertained ourselves eating amazing pasta, drinking copious amounts of wine, and stalking the in-situ TOWIE-style wedding taking place at the hotel (being Hungarian, Anita had never seen TOWIE, but YouTube was to hand and I she was soon educated right back to the glory days of Footballers Wives). I then had three days to recover (read as: more underwear washing and gin replenishment) before the boating crew arrived from the UK, to wreak havoc on the poor unsuspecting (but suitably entertained by our rendition of Bohemian Rhapsody) Dutchies in the Jordaan. While they were here, the crew of Olivia Kate tried (not very hard) to educate me on the option of ‘turning right’ on a long haul flight, as I booked my next tickets. Paying little heed to their wisdom (and far too much money to British Airways), I headed back to Schiphol with them three days later. I then spent four days in New York with my oldest friend from primary school; quality testing the New York nightlife to the tunes of Chicago, the sparkle of Tiffany’s, the best avocado smash ever, a dodgy comedy club in East Village, and some damn fine late night pizza (not all together, although I wouldn’t have been surprised in NYC.) Finally (for now), two London buddies (who were here with me for Pride last year, before I had brain surgery) came back last weekend, to make up for my limited drinking ability of 2018, and with the help of a particularly high chap in a red t-shirt (see below – sharing this again as it still makes me laugh), we made up for lost ground.
Quite a lot for just 10 weeks, right? You’d think my liver would agree, and my body has, admittedly, at times, screamed at me for a break. But with the prospect of going back into treatment and the likely onset of a travel ban, cabin fever, steroids and cave visits, I wasn’t going to back down. On the contrary; since finishing chemo I’ve (generally) managed to get plenty of sleep, regular gym visits and continued to feel better and better – culminating in reaching the last of my personal recovery goals last week.
AN: I think the only person I shared these with was my dad, but I wrote the list below during one of my low points, as a way of encouraging myself to face forward and keep going – and it worked.
So what’s next?
So it’s what we’d technically refer to in the corporate world as a shit sandwich – I’ve started off with the good stuff, next comes the tough bit, but stay with me, as it’ll get better again!
In my last post (55. Decisions, decisions…) I was faced with a BIG decision – whether or not to do a clinical trial. By way of a quick recap; the trial itself involved relatively non-invasive treatment (injections like chemo every three weeks, but without the chemo side effects). The objective of the treatment is to reprogram my immune system to work differently and learn to recognise / fight cancer cells naturally. This ‘immunotherapy’ approach is considered a breakthrough in modern cancer treatment, but we’re only just starting to understand it. As a result, there are a limited number of drugs being trialed at the moment, and they’re in pretty early stages. Therefore, results can be hit & miss – some patients are being ‘miraculously cured’ whereas others (sadly, the majority at the moment) experience ‘immune system overdrive’ where the body starts to attack both cancerous and healthy cells. The side effects of this can be horrendous – anything from digestive issues (symptoms similar to Chrome’s disease), kidney failure, liver failure, heart attacks, almost anything, as your immune system turns on your body. There are different drugs / trials for different cancers, and different kinds cancers (ie one drug which may work for some breast cancer patients, doesn’t work for others). The trial for which I was being considered was specifically for triple negative breast cancer patients (ie patients who’s tumour doesn’t respond to any of the three typical hormones). That’s what they thought mine was initially, but after I had the first lump removed, they got chance to examine it more closely and it appeared to respond (albeit only a little) to one of the three hormone receptors (therefore not triple negative). So they needed to re-examine the biopsy the took from my lung last year, to confirm whether I really am triple negative (and therefore eligible for the trial) or not.
This is what we’ve been waiting for while I’ve been traveling, and in the meantime, I’ve been mulling over what I’d want to do if they said I was eligible. If immunotherapy worked for me, I’d have a great outlook; if it didn’t, I stood the risk of immune system overdrive (which would be treated with the same steroids that sent me almost to the brink of despair last year) or even worse. And the odds weren’t good. So it felt like an impossible decision to make. But I’m not a quitter, I won’t give up on getting better, and the thing that ultimately swung it for me, was that I knew I’d regret it if I said ‘no’ then started to get sick again. But I also knew that, if I did do the trial, I’d regret it if I got the side effects (as I could’ve had longer to enjoy life while I felt good). So the feeling of having to make an impossible decision, which I’d regret whichever way I went, has kind of overshadowed all the great fun I’ve been having, and at times, I’ve just wanted to bury my head in the sand.
When I was in New York, I wanted to go to Tiffany’s (obviously) and had my eyes on a diamond ring which would’ve cost over €7k in Amsterdam. Because of the exchange rate working in my favour, had I bought it in NYC it would’ve cost me just over €5k. So I was justifying this to myself financially, thinking ‘I’m unlikely to see my pension, so why not spend it now?’ But my friend Haidee had better ideas. 14 years ago, her best friend arrived on her doorstep in tears; she had a brain tumour and had been told she had a 0.001% chance of living beyond a year. She is still here today.
AN: pause for WOW moment, as this really deserves one! OK continue…
Given our mutual lunacy, it’s little surprise that Haidee and I were friends at school. But despite the fact that we are rarely in the same country (at the same time) and have lived very separate lives since school, her positivity and energy rubbed off on me and helped to reset mine. Her counter proposal was a compromise on the Tiffany ring (I was still allowed to get one, but only using the money I got back from the taxman last year, somewhat less that the initial price tag of €5k!) and next year we’ll go back to NYC and get the bigger one, because I’m NOT spending my pension just yet, I AM going to be here next year, and I need to STOP focusing on the shitstorm that might come. 0.001% is all it takes, that’s all I need to have a chance, I just need to remember that.
I love her way of thinking and it made me start to rethink. I was expecting a call from the hospital with an update when I got back, but as much wanted to get off my ride and onto hers, I was still struggling to mentally do it. I then got an upgrade voucher from BA (perfectly timed to arrive the day I got back from NYC), and started to think about where I could go that was far away enough to justify using it, but close enough to be able to go before I started treatment. Then I remembered the 0.001% and decided to back myself – I’m not a quitter, I have got the energy to do this, and next year Haidee and I would go back to NYC and get that damn fine ring from Tiffany’s.
Finally, I’d made up my mind, and felt ready for the hospital’s call to ask if I wanted to go ahead with the trial.
Changing more often than my boarding passes
So today the hospital called. They’ve got the results of my biopsy. I am NOT triple negative. So I’m not eligible for the trial.
Oh. Right. Anticlimax? Not really (this is where the shit comes good again, I think?!)
The trial doesn’t appear to work for patients who’s tumours respond to hormones – it only works (sometimes) on triple negative tumours (lots of uncertainty hence why it’s being tested) so the decision on that trial is no longer a decision I have to make. I can’t change what my tumour is, so the fact that I no longer have to make an impossible decision feels like a win to me.
Because my tumour does (albeit only very slightly) respond to one of the hormones, they want to try treating it with hormone therapy (tablets). They tried this before (using a drug called Tamoxifen) but how well it works depends on how receptive your tumour is to that hormone. My tumour is only slightly receptive, so when I took Tamoxifen after breast surgery, the cancer still came back. But they now want to try it in combination with another drug which wasn’t available back then…
AN: this is how fast cancer treatment is progressing, and this drug being available now is because someone like me took part in a trial… thank you, whoever you are.
Because my tumour is only slightly responsive to this hormone, the chances of it working aren’t great, but it’s still worth a shot. If nothing else, the decision about the trial helped me remember I’m not a quitter, and I won’t give up fighting or trying new things to get rid of this bastard disease.
So next meeting is with my Oncologist to discuss the details of this new drug combination. From what I learnt today, it’s a tablet with few side effects, so I can continue to live a normal life without injections, hospital visits or steroids.
The chances of success remain low, but all I need is 0.001% and it’s a chance. So I’m grabbing that 0.001% and backing myself.
I’m 0.001%! You’re story brought me to tears and obviously reminded me of my own journey. I have given Haidee names of a few books I think you would find incredibly inspirational- love medicine and miracles, being my fave. I will be thinking of you often sending you so much strength, love and positivity…. I hear the new mantra is fuck the bucket! ❤️ that!
Thank you for sharing your story
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