Heatwaves, PJ days, my new immune system and the sadness of disconnection

I wanted to do an update before this one, but time has a habit of running away doesn't it, even more so during the school holidays.....so here is my last couple of weekends and all the days in-between....

Deep Rest Needed = Missed Moments

Last weekend (not the one just past, the one before), I slept. Almost constantly. Repeatedly. The kind of sleep that only a body in healing knows how to demand. It felt like all of me needed it. I missed going to Oxford with Sam and her daughter Mads, and I was sad about that...but I also knew I couldn’t push. That in itself is growth, isn't it?

Monday came and I got dressed. A small victory. I headed into town with the boys. Food first for them, of course, then a little mooch around the shops. Annabelle refused to join us, living her best life in full tween PJ rebellion mode.

A couple of hours out felt like a lot. I was glad to get home. Maybe it’s the heatwave. Maybe it’s the treatment. Maybe it’s just me. My relationship with the sun has changed. Last year it terrified me. I blamed it for the skin cancer. This year, I know better. I see the sun for what it is...it is completely necessary, not a villain. But I still can’t cope with the heat the way I used to. Maybe that’s the immunotherapy and the changes that has brought.

What Is Immunotherapy?

When I was first diagnosed with melanoma in January 2024, I’d never heard of the drugs I’m on now: Ipi (ipilimumab) and Nivo (nivolumab). These are immunotherapies. They don’t go after the cancer directly. Instead, they teach your immune system how to find it and remove it.

Ipi is like a general wake-up call to the immune system. Nivo blocks the cancer's "off switch" (called PD-1) so the immune system can finally see and respond to it.

Together, they can pack a punch. Sometimes too much of a punch. I had the combination at first (Ipi/Nivo), and only managed 3 cycles of it, and now I’m on just Nivo every four weeks for 2 years. The idea is simple....unmask the cancer. Let the body see it. Let the immune system do what it was built to do.

It’s not always easy. Side effects are real. Fatigue, inflammation, strange symptoms that make you second-guess everything. But this treatment has given me time. It’s given me a fighting chance. And for that, I’m forever grateful. 10 years ago, with my diagnosis, I would of been given 6-9 months to live and been made comfortable.

I had pretty bad side effects from Ipi/Nivo, after the first cycle was skin irritations, after cycle 2 I was completely ok, and then after cycle 3 it hit me like a train. I developed liver inflammation (hepatitis) and around Easter 2024 I had the onset on a really bad headache that would not shift for days, I ended up calling The Royal Marsden Hotline and was instructed to attend their urgent care dept ASAP.

I am sure you can imagine the horrific thoughts running through all of our minds when I was relatively newly into my diagnosis and I had the most awful headache, I could bearly lift my head. I had my second brain MRI that day, my oncologist came to my bedside and explained that the brain scan was still clear (I thanked my lucky stars) but that the immuno had caused inflammation around my pituitary gland at the base of my brain and also around my optic nerve.....he looked pleased, and that confused us even more...but, the side effects showed that my body was having an immune reaction, it was reacting to the drugs, and that was a good sign, in fact, it increased my odds from 50:50 to 70:30....i'll take that!!

The inflammation was in fact an over reaction, and so my own immune cells were now over boosted and where attacking healthy tissues, so they needed to be calmed down. The answer to that, is steroids.....high dose to begin with, tapering down to nil. I have never got down to zero steroids, and probably never will, the pituitary gland is a gland at the base of your brain that controls lots of other glands in your body, it is like a mini brain, its controls the adrenals and the thyroid, it is very important, but not very hardy and is unlikely to bounce back from any damage its sustains, including inflammation. Luckily for me, my thyroid seems ok, but my adrenals have taken a hit and won't wake up, so I now have adrenal insufficiency, meaning I don't produce cortisol my myself anymore, which we all need. So steroids replace what my adrenals should produce each day. Steroids are not a very pleasant medication to be on at all.....but I will go into that another time....!

The Quiet Sadness of Disconnection

One of the quieter heartbreaks in this season of my life has been disconnection.

I am left wondering how people so close, people who know what we are dealing with, can be so far removed from our present.

There hasn’t been a fallout. No big confrontation. Just distance. A slow and silent withdrawal.

I don’t think it’s cruelty. I think it’s fear. Or awkwardness. Or emotional. Maybe they think we have enough support. Maybe they just don’t know what to say. Maybe they think we don't need them. Maybe it's not me at all, maybe they have their own stuff going on and don't have the capacity. But it still hurts. And it still leaves a mark. But there are no hard feelings from my side.

I've tried so hard not to change, I work on that everyday, to not let my diagnosis belittle whatever anyone else is dealing with or going through, I have an enormous amount of tolerance for people being different, I think it's great just how different we all are, but my perspectives have changed, and thats something I feel won't change back, so I look at things a lot differently, through a set of eyes I've never known before.

So part of this journey, for me, is learning how to sit with that. How to not let it harden me. How to still stay open to others, and their problems and upsets regardless of how I feel they have stepped away from me. Because in the middle of all that silence, I’ve felt something else: surprise kindness. Unexpected generosity. Love from places I never expected. From amazing people who I am so lucky that our paths have crossed, and, dare I say it, I can 'thank' cancer for that.

And that’s where I choose to live now. In the love that shows up.

One thing I didn’t expect on this healing journey was how lonely it would feel at times. I imagined I’d have cheerleaders. Supporters. People checking in. Family reaching out. I thought my diagnosis would stir something in others, a closeness, a care, a reminder that life is too short not to show up for each other.

But that hasn’t always been the case. Some have gone quiet. Some have distanced. Some stay firmly on the surface....unable or unwilling to meet the emotional depth of what I’m going through. I don't want grand gestures. I just want presence. A little bit of hand holding.

And sometimes, in the darker moments, I wonder....are they bored of my illness? Has it become too much? Too long? Too heavy?

But then I remember....my healing is not a performance. It’s not something that needs applause to be valid. The people who can hold me, do. And those who can't....I’m learning not to chase.

What’s left is quieter, smaller, but so much more real. My children. Mark. My healing space. My ones who know, who are there and pick me up and are sad and celebrate and are steady. And me....showing up for myself every single day.

Disconnection happens in so many parts of our lives....when babies arrive, when family members die, when people move, when people get new jobs.....it still can be very painful though....

Closing Thoughts

This past days haven't been flashy. There were no major milestones. But there was rest. There were small outings. There was reflection. There was a deeper understanding of my own body, my own boundaries, and the shape of my life right now.

Immunotherapy is teaching my immune system how to recover. And life, in its messy beautiful way, is teaching me how to stay soft and kind.

I’ll keep sharing the story, in case it helps someone else walking this strange, beautiful, brutal, brilliant road.

Love, Claire x