⚠️ Warning: multiple references to vomit 🤢🤮 – only a morning breakfast read for those with a very strong stomach!
It has been another crazy two weeks for #teamzoe and on reflection these last two weeks have really taken it out of Zoë and I in many different ways. The two weeks prior to that (holiday and Parliament), plus the news from her latest MRI (covered in the previous post) coupled with whatever mischief the tumour inside her brain is causing, has definitely taken a physical and mental toll on Zoë – all of which has been rather acute, and which in turn has been distressing in its own right.
Her new symptoms – vomiting most mornings, headaches, sleeping more, dizziness and small focal seizures – have left us both feeling rather depleted. There are new medicine regimes to get our head round, a good dose of trial & error and a cast of new health professionals to acquaint ourselves with: a new CNS (Clinical Nurse Specalist) in London; district and palliative care nurses (all who are helping us with symptom management – not yet end-of-life care). But I don’t want to paint a picture of complete doom and gloom: these tricky moments are interspersed with brighter moments – trips to Maggie’s, walks to see the horse racing, roast lunches at my parents’ house, time with Zoë’s parents (who are helping us out currently) and walking to the school pick-up.
Our house is adorned with emergency vomit collection receptacles and I am refining my skills at emptying and decontaminating said receptacles. A vomiting epileptic presents yet another new challenge for me; Zoë’s acquired epilepsy is primarily controlled with oral anticonvulsants. These have to be dissolved and absorbed by the digestive system in order for them to get into her bloodstream; therefore the tablets have to be administered when the risk of vomiting is at its lowest (and as far as I can tell, one of the variables in the “is Zoë going to vomit?” equation seems to be a random number generator) – so after administration there is a degree of palpable anxiety. It also turns out that telling a queasy person not to be sick has a somewhat opposite effect…. consider that lesson learnt after a sharp ticking off from my wonderful wife!
On top of all those emotions, another strong one: frustration. Zoë had decided on her treatment plan and wanted to get started as soon as possible, but red tape in the UK was slowing it down. The drug she wanted is available in Cheltenham, but it’s not licensed for brain cancer, so she can’t have it there – London can do it, but need extra approvals.
I knew that Zoë was due in Germany for her 13th (and penultimate in the current batch) vaccine dose, so I had a cunning plan (Baldrick?). Could she have the first dose of pembrolizumab in Germany? The team in London and Germany collaborated across (Brexit) borders and it was decided that she could start the checkpoint inhibitor (a form of monoclonal antibody) while receiving her personalised cancer vaccine booster! Great result team!
The only snag in my hastily concocted cunning plan? It would make the journey more pleasant if Zoë could stop vomiting long enough to get on an aeroplane……(twice)…..
Weak from all the sickness, Zoë’s energy levels were not good – but I worked with the wonderful nursing teams in London and Cheltenham to try and get on top of her symptoms. My already sizeable mobile pharmacy continued to expand with more and more drugs. Various anti-emetics were added, but they cause side effects, which you then need to counter with even more drugs – I resorted to going back to printer paper drug charts to keep on top of it all!
Zoë’s sister Verity was originally due to travel to Germany with her, but this was arranged long before this new batch of excitement had commenced! Verity and I had a conference call and agreed that I should come as well, for back-up. Cue some frantic aeroplane and hotel booking activities – £600 return for an economy flight 😲 – I couldn’t stomach spending the crowdfunding money on that; so I booked with my air miles and due to the fullness of the flight ended up in business class on the outbound leg (the sacrifices I have to make sometimes 🤣).
The day of the flight came and Zoë couldn’t get out of bed in the morning, and I was really starting to think this was a most stupid idea. Then her sister arrived and reassured me that everything would be fine! Just as we were about to get in the car she threw up again! Argh! So we loaded her up with the strongest anti-sickness medication we had in the mobile pharmacy and headed towards Heathrow…
The flight was uneventful, and surprisingly smooth – despite the high winds that had delayed it by one hour – and after a warp speed journey along the autobahn in driving rain we were all tucked up in bed in our hotels by 1am (I had to book Verity in over the road using my hotels.com reward nights as ours was full). The next day; determined to make it to our 10:30am (9:30am in the UK) appointment – I woke at 6am (having not slept much) and started prodding Zoë so she was awake enough to take various tablets: anti-sickness; anti-convulsants, before letting her go back to sleep. I was absolutely paranoid they were going to be forcefully ejected, so I trickled them in: a couple every 20 mins or so. All was well, so we had breakfast and jumped into the taxi to the clinic.
As usual we were looked after with great compassion and efficiency in the clinic, but there was a bit of a buzz in the air on this particular day. On walking through the door at 10:20am I observed a lady holding what appear to be a glass of champagne. Zoë quipped “is that real champagne?” – to which she replied “yes” – or maybe it was “ja”? Now Verity and I thought it was a bit early for the medical staff to be hitting the booze; but on further investigation it turns out that they had just taken delivery of a brand new DNA sequencer. The aforementioned NovaSeq™ X Plus Illumina (one of the first in the world) was sat in a massive wooden crate reminiscent of the Ark of the Covenant and our champagne-sipping friend seemed to be vaguely making sure that nobody nicked it, although I’m not entirely sure why – it looked very very expensive, but it also looked very heavy! Anyway it was smiles all round and as a massive geek myself – I can tell you there is nothing happier than a geek with a new toy or a ‘new baby’ as the head honco referred to it!
Zoë had her usual vaccine booster and then moved on to her new drug of choice, which is given via IV. This required some blood tests and an ECG to check her body was up for it, and to provide a baseline for future tests. First they gave some antihistamine via IV over 30 mins (presumably a precaution against her having an allergic reaction to the new drug), then the Pembrokeshire (codename Zoë has given it – 1. it’s easier to say than pembrolizumab – 2. it brings back happy memories of our holidays there and 3. all crazy projects needs a codename in our house). The Pembrokeshire was given via IV over 30mins and finally (just as Verity was about to squeeze the IV bag – as she put it: “to get our/your monies worth”) – they flushed it all in – presumably more scientifically, with some saline – great I thought – additional hydration for the vomit monster!
After the IV line was disconnected we had some “chit chat” with the docs about Zoë’s current treatment plan and headed back into town for some delicious lunch, a walk around the park and a coffee in a shop I’d spotted on a previous trip but not had chance to visit. It was in this cafe that Zoë accidentally left her rucksack (containing some of her favourite worldly possessions including: emergency medication [i did have spares], eye masks, lip balms and iPad amongs other things). Verity and I only discovered this fact when back at the airport (we have to cut her some slack; she has had her brain irradiated) which resulted in Verity typing some frantic emails and me making phone calls like a pair of ninjas, to everywhere we had visited in the last 24 hours. The bag was located and through the goodwill of some wonderful humans we have met on this journey – relocated back to the hotel where we can collect it on a future trip.
We flew back to London late that evening, stayed with some very wonderful and kind relatives before heading back to Cheltenham the following day. The day after we returned the vomiting started again! Oh joy! But we did have some new receptacles courtesy of the Germany clinic; every cloud!
#teamzoe 
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