They say that when you don’t talk to someone for a while, or you have an argument, you shouldn’t sleep on it – it’s best to clear the air before it becomes difficult to know where or how to start talking again.
Having not written a blog update for about a month I feel a bit like this now – not quite sure where to start. Perhaps the first thing to do is explain why I haven’t written for so long.
I kind of eluded to it in my last post, when I said the mental battle was a whole different conversation. At that point, with hindsight, I think I was probably on the verge of a downward slope but not yet ready to talk about it. And I haven’t been ready to talk about it since, hence the radio silence. But after a few days in the real world – one which isn’t built around me, my blood levels, my apartment, my hospital visits, Nike, or Amsterdam – I now feel on the up again, and in a better place to talk about it.
In short, my mental strength and positivity just ran out. I had a few setbacks, one after the other, followed by uncertainty and disappointment, followed by a lifeline, which then disappeared at the last minute, and I just didn’t have the strength to be “Little Miss Positive” anymore.
In isolation, each thing that hit me wasn’t a major issue, and I’d typically have just said “this is ok, we deal with it and move on.” But like the chemo treatment, every time you take a hit your resilience reduces, and eventually the last hit just takes you out. That said, the way I reacted to the individual things was, I think, also part of the problem.
So what happened?
The first thing was work (quelle surprise!) Someone new was assigned to cover my role. The thinking behind this was bang on – they still needed someone who could be there when needed (not someone who was there one week and not the next) and they wanted to give me space to focus on my wellbeing. But as work is such a huge part of what makes me tick, it had the opposite effect on me. I went from going into work regularly (staying in touch with people, projects, my support network and just a sense of normality) to feeling like I c/shouldn’t be there (as it would confuse people having me and my cover around at the same time – who’s who, who’s doing what…?) Even if I wasn’t able to pick up projects while I was off, still being around to support my team gave me a sense of purpose and helped me feel I was still part of the team.
But I tried to think beyond all that and do what they told me – focus on my wellbeing. I was aware that my immune system wasn’t super strong and that my platelets had taken a hit. So I started to stay home and avoid contact with large groups of people, to remove as much risk of infection as I could. I was entering the final quarter of my chemo plan and didn’t want to screw things up.
Then there was training; I was missing training like crazy, I could feel the steroids taking take their toll on my body, my clothes weren’t fitting any more, and there was nothing I could do but watch it happen.
But again, I tried to work around that. I ordered a couple of training balls and figured that at least I could do some little bits in my lounge. And it worked at first – my mental strength started to come back as I felt better from training, I hadn’t had a cough, cold, sniff or sneeze for a couple of weeks, and I was totally ready to hit cycle three of chemo HEAD ON.
Then came the biggie; when I went to hospital for my bloods on the Monday morning, the nurse even commented on how excited I was about chemo! My response was “I’ve only got four left! Cmon!!” My friend Lucy was over and we went back to hospital on the Monday afternoon for chemo, only to be told that my bloods hadn’t recovered enough… WHAT?
Bang. Stopped dead in my tracks. How could I not be strong enough? I’ve been so good? I feel incredible? This can’t be right? But it was, and it got worse.
My Oncologist was considering reducing my dosage, to give me the rest of my treatment in smaller doses over more sessions, because my bloods weren’t recovering fast enough. WHAT?
So they’d taken me off the bus (stopped my treatment) AND were moving the finish line further way, and not telling me how much further away it was getting.
The following week was shit. I had to wait to see how well my bloods recovered before they’d confirm if my plan was changing. All the things I’d been focusing on to get me through chemo had suddenly gone – the countdown, the end date, the holiday afterwards, although by that point I really didn’t give a shit about the holiday, I just wanted chemo over with. It wasn’t getting me with side effects, it was totally screwing up my head and I was getting more and more depressed.
Then came a lifeline. My best friend Alex had been planning the party of the century – she’s a party planner by profession, but this was her own 40th birthday party so it promised to be epic! I’d said from the start that I was unlikely to be able to go because I’d be in between chemo sessions. Al understood totally and kept me involved as the plans evolved, so at least I still felt part of it, but I was gutted that I couldn’t go, as it was my best mate’s big weekend and I wanted to be there for her. But on the Wednesday it suddenly dawned on me that, as I hadn’t had chemo on the Monday, maybe I could actually go?! I could get the overnight ferry (no way I could fly), sleep in my cabin all the way there and back, and travel by car (so avoiding public transport)! OK I couldn’t go to the party, but I knew Al was having her nails done in north London in the morning, so I could just turn up at the salon and surprise her, sit and shoot the breeze while she got pampered, then head back to the ferry afterward! It was only an hour’s drive each way, a good sleep in between, no risk of infection, and I’d get to see my best mate on her birthday! So I bought the ferry tickets and suddenly I had something good on the horizon!
Unfortunately Storm Doris had other ideas. I spent all day Thursday listening to the shipping forecast and on the phone to the ferry company, and by 7pm had to make a call on it. Doris had done her worst in the UK but was heading over to the Netherlands, so as my ferry sailed across the North Sea, it’d be going right through the eye of the storm. Force 10 gales and very rough seas – I’ve never had any kind of travel sickness, but if I got ill in the middle of all that, with a low immune system, things would get very complicated. It was a risk I couldn’t take, so I didn’t go. Instead I just sat at home and cried. And cried. And cried.
By Monday morning when I went back to the hospital for my blood tests, I was beyond caring what the results were. If I felt great, it didn’t seem to matter. If I felt ill, I didn’t seem to matter. I just felt numb, I let them take the blood and came home again while they decided what to do with my treatment plan.
By this point, a few people were starting to wonder why there’d been no chemo photo on the Monday, and no blog update during the week, or the previous week…? I’d told my close friends and my parents what was going on. It was tough – I needed to be straight with them but didn’t want to worry them. But good friends and family tend to see right through you and they could tell I wasn’t happy. So waiting for the call from the hospital on Monday with my blood results was like waiting for a child to be born – regular texts asking “any news…?” and “please let me know asap!” And it reminded me that it’s not just me going through all this; I have a huge network of people who are right behind me.
When the call came, the nurse told me “your bloods have recovered enough for chemo today, so we’ll see you at 1pm” …OK we’re back on the bus… “but Dr Kerver wants to reduce your dosage to 75%” … at which point I’m desperately trying to calculate how many extra sessions would be needed to give me the remaining chemo at 75% of the original rate… “but he’s happy at that” …That? What? Happy at what? “So your last session will be 27th March.” Hang on, no extension? No extra sessions? Nope, just the three remaining sessions as planned.
So, I’m back on the bus, I have a finish line, and it’s no further away!
At this point I should have been bouncing off the walls, but having been so mentally exhausted over the past few weeks, I didn’t bounce back straight away. Instead, I called my parents and asked if I could come home for a few days.
While all this is happening in my world, talking to mum reminded me that there’s a world going on out there which doesn’t revolve around chemo, hospital visits, blood tests, missing work and training. However much I think I can cope with this, be strong for everyone, and show cancer that it’s not in charge, there are other people involved in this too. Going home for a few days would give me some R&R but also show my parents that I’m ok, and give them one less thing to worry about. It made me realize that, in the same way that I need to feel I have a purpose, feel included and feel and part of the team at work, my parents have exactly the same feelings with my fight back against cancer.
So this week, I used the tickets I saved from Alex’s birthday and took the ferry home to Yorkshire to see my parents. I planned to go up the White Horse to see my brother, maybe a ride out to Whitby, Roseberry Topping, Hutton Le Hole, the obligatory visit to Betty’s and a Minster photo or two. But instead, I just spent two days with my mum, drinking tea, putting the world to rights and meeting up with her friends at their ‘Friday morning coffee club’.
I’m on the ferry back to Amsterdam. I dock at 5:30, collect Kari from Schiphol on the way home, and get ready to fight again!
On Monday we’ll head back to the hospital to show this thing WE ARE BACK – we’ve taken a beating, but we are NOT beaten!
The nurses have confirmed when/where I can go on holiday, so I’ll book that on Monday.
I’ve brought some proper (Yorkie) chocolate back for my team, so will go into work this week and see everyone again.
And my last chemo session will now be on 27th March – my 40th birthday. So Sarah, Alex and Kari are flying over and coming to hospital with me – we’re going in armed with cake, balloons and (non alcoholic) bubbles, and we’ll rock that place for the last time!
Mum says it had to happen at some point – there’s no way I could get through all this without breaking down, but you know what I reckon…