2024 – the year I WILL live again

As the new year begins I thought I should give a long-overdue update. It’s taken so long because for the last few months of 2023 my quality of life has been so impacted by either my cancer or side-effects of treatment that I’ve barely been functioning.

To say I’ve been struggling is an understatement. I’ve been to places emotionally that make me terrified just thinking about it now.

To give a brief overview of what’s happened:

My 2^nd round of the stronger palliative chemo Lomustine, even at a 50% dose reduction, hit my bloods so hard again that my body and brain were getting far less oxygen than they needed and this affected me physically through fatigue but also cognitively. It was so extreme that I could hardly hold and follow a conversation even one-on-one and at points I was mostly resting in bed. For almost 2 months I hardly left the house and my world just became smaller and smaller, having such little contact with friends.

Thankfully a blood transfusion rapidly helped and I got my energy back along with cognitive function so I could finally start to see friends again. The relief was immense and I finally felt like me again.

But then just a week or so later I realised my hearing was going. I’d been warned by my oncologist that a medication he’d prescribed for me has a known side-effect of temporary hearing loss. As usual it was brushed over as nothing to worry about, hardly anyone gets it and it’s absolutely not permanent. And as usual for me, so far it’s been the exact opposite.

Within a few days of me noticing, it became dramatic and I was struggling to hear my own voice let alone other people. I have almost no hearing now and despite stopping the medication causing it, so far it hasn’t shown any signs of coming back.

I’ve been so desperate that I ended up getting hearing aids but whilst I can now hear, the clarity of speech is awful so I spend a lot of the time unable to understand what anyone has actually said.

So after a week of beautiful social interaction I went back to feeling completely isolated and worst of all for me, totally disconnected.

The loss of hearing has so far been the worst thing I’ve experienced. When out I feel like I’m in a clear bubble where people are all around talking to each other and me but I can’t communicate back. It’s torturous especially when all I want is to connect with friends, family, my daughter. She’s putting up with it as best she can but it’s been months since she’s had a mummy that can just play with her without it being a real struggle.

It’s no wonder that my mental health has really suffered too. The ability to connect with others is a core lifeline for everyone, take that away or impact on it and you’ve really got to dig deep to feel like it’s worth it.

For me therefore, whilst it’s just a day in the calendar, Today I hope, marks a new start, one in which I find the strength again to know that these challenges always pass eventually and life in which I can enjoy time with my friends and family will return.

In the meantime, my oncologist has taken me off the Llomustine chemotherapy and the medicine that was causing the hearing loss. After a second opinion I have managed to persuade him to let me try the original chemotherapy I was on again as it’s far less toxic and helped me get rid of the other tumours I had, the first one 5 years ago and the 2^nd in 2022. This was a relief as the thought of being on nothing was pretty terrifying.

The 2nd update I have, is that I’ve also now had most of the genomic sequencing analysis completed. This has shown there are 2 mutations in my cancer cells that can be targeted but unsurprisingly whilst both have licensed drugs that target them, neither are available for brain cancer patients and therefore difficult to access.

Both drugs are licensed instead for breast cancer patients that have the same mutation. Oncologists are allowed to prescribe them but it means doing something outside of protocol which is still frowned upon and can put their reputation at risk. Most clinicians aren’t prepared to do this and although mine thankfully is, he still has to get permission from the pharmaceutical company and this is another hurdle. And I haven’t even mentioned the cost yet.

There is a great disparity in the cost of different drugs. None are cheap but currently one of the drugs that might work for me is  staggering £15,000 a month making it completely and utterly not an option and the other is a slightly more palatable £4000 a month.

I’m currently waiting for some further analysis to be completed before making the huge decision of whether it’s worth exploring the more affordable 2^nd option. I’m now, more than ever acutely ware of the other considerations, like side effects and quality of life,  you must look at when making these decisions. The medication causing the hearing loss wasn’t particularly experimental, a clinical trial has been done on it, but had I known the full extent of the side effects on me I most likely would have turned it down. There has to be a balance of life at all costs verses the ability to ‘live’ however awful even the thought of making that decision feels.

So as I tentatively step into 2024, anxiously wondering what it will bring, I know that whatever happens I must somehow find a way back to a quality of life which fills me with joy. It might not be easy but I’m determined to make it happen so that Loli can get her mummy back too.

Please 2024 let this happen.