An update on where we are, but where to start? Jesus, it’s been quite the ride. I’m not sure how the last few months and weeks have happened, but things have moved fast. I’ll do my best to update you on what’s happened, where we are right now and what we think is next.
As is usual, I’ve left it quite a long time between updates. Sometimes that’s because I’ve been off having fun, living life, sometimes because I’m never sure if anyone actually wants to read this and other times because it’s all a bit messy and it takes me time to process what’s going on, plus manage the day to day of feeling pretty shite. I’d say we’re well and truly in option three right now.
So a little recap – in October, I’d been feeling rubbish and scans in early November showed extensive spread of the cancer. I was put back on to my original chemotherapy very promptly and it made a difference to how I was feeling pretty quickly. Scans in December were positive showing some stability and reduction and so we carried on through Christmas and in to the new year.
2026 bought its own challenges. Mentally I found it difficult transitioning in to a new year. The year, I was most likely, not going to outlive. We also hit the milestone of one year since diagnosis and all the emotions that come with that. I found January hard for those reasons but was optimistic about how treatment was going. The new anti-sickness meds I’d been using had made a massive difference, I felt like I was managing the side effects well and generally I felt reasonably well. I booked a weekend away in Florence, made lots of social plans and made sure there were things in the diary to look forward to.
Alongside all of this though, I was also doing my research and realising that, after 24 rounds of the same chemotherapy, it was fairly likely that my Oncology team would be looking at next steps. A particular genetic mutation I have in my tumour means I had a tablet medication available to me and, as I understood it, there was a fairly fine balance about when to switch to this. You don’t want to do it while the chemo is still working but you also don’t want to leave it too late. When the chemo might have stopped working and you have a decent amount of progression. So after my scan at the start of February, I was fairly sure they would be looking to move me on to this new treatment, Ivosidenib.
The scan results showed a mixed bag. A confusing mixed bag! We had reduction, stability and progression. In the same places. Tumours in my liver had shrunk, stayed the same, grown and spread. Same in other places too. It didn’t make much sense. To me at least, anyway.
But the upshot was that the oncology team felt I was growing resistant to that particular chemotherapy and now would be the opportune time to move me on to Ivosidenib – a tablet you take it at home each morning. In theory, the side effects should be considerably less than chemo. Great. Although that does come at a cost and the treatment can only achieve stability, at best. By moving to this treatment we were no longer aiming for reduction in any of my tumours. The way it works (again, in my basic understanding) is as a prohibitor. It corners a particular protein in my cancer and stops its ability to multiply. So whilst you hope it stops the cancer from growing, it can’t reduce it. And according to the Oncologist, we were aiming for ‘months’ of stability. A word that, I have to say, shook us to our cores. We were now dealing in the currency of months. But we were also told that this could take me to the end of the year, the aim to get me to Christmas being stable. And that would leave us with a further treatment line in our back pocket for next year.
Ok, so off we go. Christmas 2026. That’s not bad. It’s amazing how quickly the mind adjusts and that quickly seems like a good deal. Let’s have a think about a summer holiday, Charlotte will be in Year 1 by then, maybe I’ll make (real) Lapland. Wow, maybe I’d even see 2027. That transition from negativity to some form of hope.
And so the tablets started. Big, stonking blue tablets. Too toxic to touch so gloves and handwashing necessary, but on went the photos to family and friends WhatsApp groups. A fairly big day. No more chemo, some quality of life. Pop a couple of pills each day and let’s live for a bit. Not the ups and downs of chemo. No weeks ‘on’ and weeks ‘off’. Hopefully a steady few months enjoying life, ticking along.
At the same time as all of those thoughts, it was also terrifying stepping away from chemo. It’s the thing I hate but the last time I’d done that, the cancer had gone wild. But the team felt there was no reason that the cancer would necessarily do the same this time round, and others I had spoken to said that Ivosidenib had been working for them for long periods with very minimal side effects. Sounded good.
As with any cancer drug, there are side effects even if they’re ‘minimal’. With Ivosidenib one can be heart problems so I was being checked weekly to begin with to make sure there wasn’t any immediate damage. My first check up six days after taking my first tablet. I met with the Doctor, one I hadn’t met in 12 months, and although my heart was fine I did report I was finding myself very tired. Cancer tired, not just sleep a bit more tired. We both put it down to a new regime and I would be seen again in two weeks.
Those two weeks weren’t great and before I was due for a follow up, I had to call the Royal Marsden helpline. I was having daily high temperatures, was freezing cold and the fatigue had moved on to exhaustion. I was called in to the Urgent Care Centre and treated on IV antibiotics for a possible infection. Although my blood tests showed no increased infection markers, the sign pointed to that and so I was hooked up to 6 hours of antibiotics. In what seems to be a style I am adopting, I then had an allergic reaction to the antibiotics (another to add to the list after a similar reaction to penicillin last year). But either way, they were pretty sure that it was an infection and sent me home with oral antibiotics for another 5 days.
A week later and things really hadn’t improved. Back to my monitoring appointment where I was sure they’d listen to me and we’d work out what was going on. More infection, side effects to the new treatment or something else? Unfortunately my experience not what I was expecting. I met with a Doctor I’d never seen before. Was asked only to describe my top two symptoms, discussed one of them and was told it wasn’t that bad and to go home and get on with it. It sounds ridiculous now that I didn’t challenge it, but in that moment I didn’t. I felt like I was weak, that I wasn’t trying hard enough, that I wasn’t tough enough. So home I went. Despondent and feeling unheard but also determined to grit my teeth and get on with it. It didn’t work and the next few days were horrendous. I either slept or cried. Nobody quite sure what to do with me until I was eventually bullied in to contacting the helpline again.
I did, and thankfully they listened. I finally felt like I was being taken seriously. I was admitted that day and as I write, am still in hospital, 11 days later. I did still have the same symptoms – exhaustion, fever, shivers, no appetite, unable to eat and so it was assumed to be an infection. Again, IV antibiotics were started immediately, but this time a CT scan was also ordered. Finally I felt I was being heard. Not that I ever wanted to be admitted to hospital, but there was also a huge part of me relieved that someone believed me that something wasn’t right.
The CT scan was the next day and the results the day after. As soon as 2 Doctors and a Nurse walk in to the room, you know it’s not a good news story. Particularly when they then ask if you want to phone someone. I didn’t, let’s just get on with it.
The upshot is, four weeks off of chemo had seen my cancer go wild again. Tumours had more than doubled in size in four weeks and there was spread to new places. There was still the possibility of infection but the most likely cause for how I was feeling was down to significant disease progression. But, we needed to be sure. Start chemo with an infection and it could be serious. So we continued with the antibiotics for a few more days, but my Oncologist made the call to stop after eight days.
But in between all this, there was a little girl turning five. And Mother’s Day. I was absolutely devastated to be missing Charlotte’s birthday. I was offered the chance to go home for a few hours but I knew I wasn’t well enough. I simply didn’t have the energy to travel home and the decision was made that her and David would come to the hospital instead. Choosing to stay in hospital and make your child endure that visit is not an easy decision. Was it the right one? I still don’t know. Could I, should I, have tried harder to get home for a few hours for her?
It covered, as you can probably imagine, all the emotions out there. It was magical, special, loud (!), exhausting, devastating, painful and everything else. After some cake and presents, and at least two costume changes from Cinderella to Alice in Wonderland, we snuggled on the bed together and read a book. Perfection and hell at the same time. After a couple of hours, Charlotte was climbing the walls and I couldn’t keep my eyes open, so they left. Charlotte not understanding why I wasn’t coming with them. I slept the rest of the day. Willing it to be over.
In amongst all of this, my pain had been increasing so I was due an MRI of my spine to look at possibilities for radiotherapy that might help rather some of my more painful tumours. For the first time I was given a contrast dye with the MRI and, you guessed it, another reaction to add to the list. This time vertigo. The room started spinning about an hour after I got back from the scan and 48 hours later I still hadn’t been able to keep any food down.
This was a low, low point. I was convinced that if I was an animal, someone would have made the decision to have put me down. Where was the quality of life? We’ve always said I’d do this whilst there was quality and on Tuesday night, I just couldn’t find any. But we’ve also always said we don’t make decisions on bad days so a good cry and a nights sleep.
Wednesday saw a productive meeting with the Doctors and an agreement to start a different chemotherapy treatment. A different chemo since I’ve grown resistant to the previous one. But an acknowledgment that this is now my last treatment option. Unless any medical surprises or advances pop out of the woodwork, this will be as far as my treatment can go. And from here on in, the average prognosis is not long.
So we’re on the home straight, so to speak.
Chemo got underway late on Wednesday afternoon. This chemo, FOLFOX, is a mixture of three different drugs administered over 48 hours. Two hours of infusions in hospital and then 46 hours by a small pump at home (although not this time since I’m still an inpatient). I’m currently about 30 hours in. There’s the usual list of side effects as long as my arm, but I hope we can manage them as best as possible. And if nothing else, it’s my only ticket out of hospital and back home.
A huge shoutout to so many over the last couple of weeks. David has been incredible. Somehow he’s managed Charlotte, work (and for anyone who knows March in the car industry isn’t an ideal month for me to have chosen to pull this out the bag!), the house, a birthday and everything in between. My Mum has dropped everything, Luke even being installed as the resident Uncle Smelly and playing hairdressers. A few friends popping by the hospital and others who have changed plans to support David and Charlotte. Her school have also been incredible.
Then there’s been the messages of love and support. Sorry to everyone I’ve asked not to visit. There’s only a select few you want to see when you can’t even be bothered to shower and haven’t seen fresh air in 10 days. And most of the time I’ve not been able to keep my eyes open or felt well enough to consider seeing people. But I’ve felt the love, support and kindness. We all have.
There is now an exit plan to get me home. At the very least I’ve negotiated day release to get to Charlotte’s birthday party on Sunday. I will not miss that. Otherwise, it’s day by day. See how I react to the chemo and if I’m well enough to get home. I hope so. I’d bloody love to see my own bed!
What things looks like from here on in, we don’t know. There’s been a seismic shift in a few short weeks and expectations and hopes changed. We continue to hope I beat averages but I have to say optimism has taken a hit when the possible ten months on Ivosidenib didn’t even make four weeks.
But dust ourselves off and go again we shall. There’s a princess party to get to on Sunday!
