Preface: I realise when I share these updates, that they don’t always make for easy reading. My intention is never to shock or cause upset, but to provide a bit of an insight and update in to what’s been happening, where I’m at and how things are going. I’ve been writing this update for several weeks, and over those weeks my mood has been up and down. For that reason, I think it may not be the most positive of updates. Rest assured, not every day is bad, but also not every day is good. They are all up and down and a mixture of everything, or somewhere, in-between. Read on if you want, don’t worry if you don’t.
There’s been no updates on here for a while. There’s a few reasons for that, but I think I’ve worked out that the main one is that I’ve had a few months of not taking steroids! I’m back on them and the middle of the night, wide awake, slightly manic sessions are back.
David tells me a lot of poets wrote through drug induced hazes. Bryon apparently known for using opium. I’m on quite the heady concoction of opioids amongst everything else, so maybe I can be inducted into the gang (although, please, don’t for one second think I’m putting my literary efforts in the same category as Byron!).
There are other reasons for the lack of updates too, though. In September, I felt good. Really good. I was finally clear of the chemo fog. Physically and mentally I felt better. The break, much needed and noticeable. I felt strong, the positive scan results had buoyed me and I felt like I might be winning a little bit against the damn tumours. There didn’t seem much to write about. Publicly, anyway. There’s still loads I’m aiming to write for Charlotte.
I joined the gym. I was back exercising. Nothing crazy – some Pilates (although that is much harder than I realised and I was being humbled by the regular going Grannies every week!), some swimming, mostly enjoying the spa. I threw myself in to organising the raffle and fundraising for Maggie’s and, of course, my girl was settling in to school. And what a revelation that was. I genuinely don’t think I’ve ever seen her happier. She just radiated joy every time I collected her. So pleased with what she was learning, the new friends, the teachers, the routine. It was just incredible to watch, and still is. I hope she knows one day just how proud I am of her.
I was busy making plans. We were busy making plans. Allowing ourselves to think in to the future slightly. We saw Oasis. 90,000 in Wembley Stadium. Hit after hit. Sharing it with David, his favourite band, his favourite songs. Pretty special. Memories of younger days.
But then October hit and it was all a bit different. I caught a cold, just the usual back to school lurgy. Charlotte shifted it in a few days, but I just couldn’t shake it off. Along with the lurgy came a complete loss of appetite. I’m not this girl. I don’t get a cold and lose my appetite. I don’t get stressed and lose my appetite. In fact, I’m the opposite. Food is my solace, my reward, my treat. If there’s ever an excuse, I’ll eat. Probably the reason I’ve been on and off a diet most of my adult life!
To start with, I rolled with it. After piling on the pounds through chemo (thanks again to those dastardly steroids), I wasn’t adverse to a shifting some weight. But it didn’t change. Skipping meals, eating tiny amounts and feeling uncomfortable. Then came the fatigue. The never-ending feeling of being absolutely, utterly exhausted. Cancer fatigue is hard to explain. It’s not like normal tiredness where you sleep and feel better. It’s a kind of exhaustion that won’t leave you, no matter how much you rest.
Now, I like trash TV and can watch many, many hours of it. It’s one of my special skills. But there’s a difference between doing this out of choice and then doing it out of necessity. Not being able to drag myself from the sofa was a daily occurrence. Spending most of the day in bed, forcing myself up to pick Charlotte up and manage a couple of hours with her until bedtime – hers and mine. A few weeks of this and it started to feel like there wasn’t much quality of life going on. And that’s always been key. We keep going as long as there’s quality. But what do we do when there doesn’t feel like there’s enough quality? What is the point to all this when I can’t do anything and am struggling to find the joy? These thoughts went over and over in my mind.
To be honest, I just kept on going. We had a family holiday booked to Abu Dhabi over half term. Extended family and friends were coming too and there was absolutely no way I was going to jeopardise that. Phone the hospital and tell them things weren’t great and I’d likely impact my travel insurance and I couldn’t risk that. And anyway, what would they do? Probably scan me and those scans were already booked in for the first week back from holiday. So onward we plodded.
But there were some realisations that things were shifting. David asked me one morning how I felt, and the only response I could give was ‘like I’m dying’. October had started to feel like the beginning of the end and that was a terrifying prospect. My pain had increased significantly, mostly in my hips and back, but also in my abdomen. Although I had days where I wondered if I was imagining it all, realistically I knew it wasn’t good.
Others were starting to notice too. The house was a mess. I wasn’t able to keep on top of things at home. Mum had to come over and help me look after Charlotte during the school holidays as I realised I couldn’t manage her on my own for a whole day. She noticed parcels going unopened, that I wasn’t putting make up on any more, that the house was a tip, that it would take me until 3pm to summon up the energy to shower. Small tell-tale signs that things were different.
But holiday came and was wonderful. Spending time with David, Charlotte, Mum, Luke, Helen, my niece and nephew and wonderful friends Tim, Claire and Noah was super special. There was a lightness to the holiday, despite all knowing the reason why we were there together. The elephant in the room. I couldn’t have asked for a better ten days away and it was certainly the distraction I needed from looming scans. But managing the pain, the fatigue and generally feeling pretty ropey was hard and the mental mind games exhausting. I’d continued to not be able to eat (what a waste of a breakfast buffet!) and was also being sick after some meals. Surely this wasn’t looking good.
Back from holiday and I was straight in to scans. The same mix as before to give us the full picture as to what was going on and whether the immunotherapy alone was working. As before, the results take a week to come through and so David and I headed to that appointment the following Monday.
As is usual for these meetings, I try to go in with an understanding of what might be happening and ready to ask the questions. There was no denying I wasn’t feeling great and I expected the news not to be positive. But, yet again, I think we were dealt a blow were weren’t expecting. The news was worse than we expected.
Scans showed that all my existing tumours had grown significantly, and were notably more active. I had also developed new tumours in all the places I’d had them previously – my liver, lungs and spine, but also that there had been significant spread of the disease to multiple new places. New tumours in my hips, pelvis, abdominal lining and lots of different glands and nodes. So overall, a pretty bleak picture.
To add insult to injury, the Professor spoke to me about the plan for what we do next and his recommendation was to get me back on to the chemotherapy combination I’d been on previously, as soon as possible. Within the next couple of days.
When you’re given that kind of information, there’s little you can do in the moment. Or that’s certainly how I feel. I’m not at a point where I don’t want to have treatment, so we go with the recommendation. As much as I hate it, what is the choice? No chemo for three months had seen the cancer go wild, so we had to get me back on it to have any chance of getting it under control. But, wow, mentally, that’s hard going. Round 25 of chemo was imminent.
On the plus side, the Pain Consultant changed my pain meds and that immediately made a difference. There’s something quite terrifying about being in pain. Dreading what that means for the future. The relief when it can be managed, huge.
So there we are. The scan results are in. They’re not good. The short timelines I was living to feel like they’ve been ominously and significantly drawn in. The plans I made in September when I was feeling good, now feel incredibly ambitious. But postponing also doesn’t feel like an option. If I don’t push through and do it now, will I be able to do it again? Probably not. I’d certainly rather try than not.
For now, it’s back in the chemo chair. Two weeks on, one week off. We go for a few rounds and then have another scan, see if it’s done anything to control the spread. That means chemo over Christmas, the Doctor asking if I wanted to come in on the 25th as that would be when I was due. Didn’t take too long to make that decision and decline!
But this has knocked us. Some days are ok, others are not. Telling family and friends and feeling the weight of the guilt something I found really hard. Chemo continues and I’m going in weaker this time, so it’s definitely taking its toll. But the thing I’m finding the most exhausting at the moment is pretending I’m ok. The effort needed to see people, to leave the house, it all requires a kind of armour that can, sometimes, be too much. I’ve started to go under the radar a bit. Not responding to messages, not making plans. When you’ve spent the morning discussing if you’d prefer to die at home or in a hospice, how do you move on chatting about Black Friday discounts or the latest Bush Tucker Trial?
But, there have been glimmers and there are more on the horizon. December is packed full of lovely things and the goal now is to make memories and hope that Charlotte is old enough to remember some of them, and me. Small steps. The aim now to get to her birthday in March. Feasible? I’m not sure. But I’ll definitely try. Seems poignant it’ll also be Mother’s Day.
Making memories absolutely key. A night at Strictly with Mum, so special. Lapland UK with the family in a few weeks – not sure who is more excited! Christmas Day all together, can’t wait. Hopefully a trip to Budapest. This cancer may be kicking my arse, but for the moment, I’m going to give it as good as I can. I owe it to my family. I owe it to Charlotte.
