It’s been some time since I wrote an update or posted on ‘Still Here, Always Hers’.
Since I last updated at the end of May, life has been life-ing – happiness interspersed with cancer, chemotherapy and side effects. There’s been a conscious effort to live, to make memories, to find joy, and we’ve done a lot of that. Holidays have been booked. The importance of making plans and having fun has never been clearer. But there’s also been a mindset shift – living with stage 4 cancer is different. We’ve had to adapt, to make compromises.
The start of June saw us spend time with cousins. Time with Lucy and her girls, then Penny and Warwick. Two of my closet friends that I happen to also be related to. Seems like the jackpot to me. We made it to Chessington with my best friends, Louise and Liz. The kids were inseparable, the sun shone – a special day. So lovely to spend time with these gorgeous women that I know will be in Charlotte’s life and help guide her, long after I’m gone.
We escaped the London heatwave and felt very smug. Decamping to the Kent coast and revelling in the breeze. Camber Sands and its beach providing the perfect backdrop to the most fabulous week. A few days that were all about family time. Charlotte, Mum and I to start with. Then David, and also Luke, Helen, Ben and Olive. The nuclear eight, together. My body finally relaxing and enjoying the change of scenery. Watching Charlotte with her cousins is one of my favourite things. She could not have been happier. A reminder that kids don’t need much. An English beach in the summer, armed with a bucket, a spade, a kite, as good as anywhere in the world.
There’s been music – Beyonce and Stevie Wonder gigs. One absolutely nailing what it is to be a superstar (Beyonce), one a little self-indulgent (Stevie) and certainly not living up to the most incredible of nights at Glastonbury 2010! Although dancing with your pals in the sunshine is always up there as a fun time. Oasis next, but we have to hold out until September for that one.
And there’s been fab days out. Legoland with friends – Charlotte in her element with her bestie. The aim to have my roller coaster buddy well underway! Gymnastics classes (her, not me), outdoor play camps, picnics, sleepovers, visiting Grandparents and splash parks. And plans for starting ‘big school’ in September.
But, there’s also been cancer. It’s ever present, rearing it’s ugly head in unexpected ways and forcing us to change plans, to adapt, to face the reality of what the future may look like.
Chemo has continued. As I type, I’m in round 8 of treatment (chemo infusion 23). I’m tired of it, physically and mentally, and it’s certainly taking it’s toll now. My hair is thinning by the day, my memory and ability to think clearly definitely hampered, the nausea and sickness unrelenting and the fatigue overwhelming.
The chemotherapy has made me anaemic, needing an iron infusion, and the lack of quality sleep means I have bags under my eyes which could rival an Ikea blue bag. But this is the last round on this treatment line and so I’m hoping there might be a slight reprieve as we move forward.
The most notable shift in the last month or so, though, has been pain. I am now in quite significant pain with an MRI revealing that I have damage in my spine from radiotherapy (thankfully not from new / growing tumours) which is causing the muscles to spasm. But this means we’re now in pain management territory and that feels very stage four-y. A shift to symptom management. The pain also feels like it might be a sign of what’s to come and the fear of a painful death has been ramped up a notch or two. The pain at times meaning that getting dressed, brushing my hair or cutting my food, too much. There’s been talk of a wheelchair, something I’d not thought of until now. A real identity shift, a reminder of how much life has changed.
Legoland was nearly aborted, but plans were adapted and a lot of painkillers taken (plus a special accessibility pass meant no queuing – a silver lining, but also an admission that I need special measures). I now drive as much as possible, taking trains or tubes too painful, and picking up Charlotte has had to be minimised. But, I was seen this week in the pain clinic and we have a plan. I start some medical acupuncture next week and physio will follow, aiming to ease the pain and get me moving and exercising in a safe way and hopefully reducing the reliance on analgesics.
I’ve also started some psychotherapy. It’s totally new to me, but I think needed to help process some of what I’m trying to come to terms with. Physically attending chemo has become quite difficult and it turns out I have some trauma from 2022 treatment which has come back to haunt me. There’s also a lot to work through in terms of grief for the life I’m not going to have, or be able to give Charlotte, and the guilt for what I’m about to put everyone through. It looks like I’ll be keeping the therapist busy for a while yet.
I wasn’t sure what to expect and I’m only a couple of 1:1 sessions in, although I have been attending group sessions for a while. Saying things out loud, to someone totally unconnected, has definitely been helpful. And I’ve started some soothing rhythm breathing to try and help my body get out of the constant ‘fight or flight’ mode it’s been finding itself in for the last six months.
There’s also been a new tumour found. This time on my hip, a new bone metastasis. Tumour number 12 to join the party.
Add to this an inquisitive four year old who is starting to comprehend the situation more and more. Recent questions have included ‘are you going to die from your cancer’, ‘why did you get cancer’ and ‘will my friends get cancer’? We’ve always said we’ll be open with her, and so we’ve answered honestly. Yes, I’m going to die but we hope the medicine will slow that down. I don’t know why I got cancer and the Doctors don’t know either. No, you, Daddy and your friends won’t catch cancer from me. Conversations that last 30 seconds, but that have a lasting effect on us all. Hindsight providing all the right answers and things I could have said in the moment. These conversations weigh heavy, but you also have to love the unfiltered mind of a child. Asking things that adults are too afraid to ask. We’ve met with her school to put things in place to support her. Which has been so well handled, but also feels so sad. She shouldn’t have to need that.
So for now, it’s both. Joy and happiness and my unrelenting friend, cancer. Sunshine and scans. Ice cream and iron infusions. School shoe shopping and tumour number 12. Still here, still laughing, still living — always hers.
