The treadmill…

Another week, another round of chemotherapy done.  That makes 13 in total so far – pretty impressive in seven months!  I remember a conversation right back in July, when I first met the lovely Rachely from Camp Simcha, when she told me to think of each stage of treatment as one step closer to the goal.  Which is true, but we just seem to be throwing lots of extra steps in before we get there!

If we’re in analogy mode, another one we’ve discussed with people is how it’s like we’ve all been thrown onto a treadmill.  We never asked to get on (exercise is definitely not my thing!) but now that we’re on we have no choice but to keep running.   There’s no option to turn it off, even if all we want to do is climb off and get back to a normal life, or even just take a break for a day.  Sometimes we’re running super fast when we’re in and out of hospital for treatment or when scans and big decisions are happening. Sometimes it slows right down if we’re at home for a few weeks.  But we’re still running towards that goal all the time.  And unfortunately in our case, someone keeps adding on to the distance – chucking a few extra km in for fun – as we find that the treatment hasn’t done as much as we needed it to and we have to take some extra steps that weren’t part of the original plan.

The other thing that happens on the treadmill is that sometimes you fall flat on your face – which I’m not ashamed to say that I did this week.  Time To Talk day happened last week and it was great to see mental health in the spotlight and that in general people are becoming more open to conversations about mental health.  Whilst I wouldn’t say that I suffer from any “official” mental health problems, I have found our situation has made me much more conscious of my own mental wellbeing and that of my family and those around me.  We see a psychotherapist at GOSH which helps us to process, and I’m now a big fan of the HeadSpace app, especially if I wake up in the middle of the night and thoughts are stopping me from getting back to sleep.  Exercise is Adam’s thing and he’s been trying to run to work a few times a week.  In general I’m just much more aware of my mood, and how it affects my day.  So back to this week’s blip…

The whole family is full of cold and a burst water main has meant that getting out of Borehamwood by car has been impossible all week so we’ve been getting the train to and from GOSH every day which is long and tiring.  By Wednesday evening, the kids were driving me mad, I felt like rubbish, I saw something that set me off online and turned into a blubbering mess – I had to hand over to Adam to put the kids to bed and basically go to bed for the night.  Once I get into that mood, all the horrible thoughts and feelings flood in and it’s really hard to shake them off.  What I’ve learnt is that sometimes I just need to let it happen.  Thankfully we’re now at a stage where it doesn’t happen very often but I think my brain just needs to let it all out every now and then.  Somehow, Adam and I seem to have these wobbles at different times, which means that when one of us is down the other is able to bring the other back up and I’m super thankful for him stepping up when I needed him this week.

The other thing I’ve learnt is that thankfully for me, those dips never last for long.  The treadmill is still running, and so on we run.  As someone who really likes control and stability in her life, the complete lack of control over the most important thing in the world – the health of my family – has been the hardest thing to deal with.  But another lovely person stepped in with some advice right at the start of this process and told me that when you feel like you have no control over the big things, take the things you can control and control them! And one of the most important things that is in our control is our mood and so the best we can do is try to pull on those positive pants each day.  It certainly doesn’t mean that any of the shit goes away, but it means that for that particular moment we’re not going to let it win.

This has turned into one big self indulgent pity party and once again I haven’t even mentioned Jake but suffice to say he continues to be an absolute superstar.  So let’s turn to the positives:

1. We had a brilliant week of family fun times with Auntie Ruth and Uncle Bum Bum (as Ben is affectionately known).  Sky Garden, swings at Tate Modern, brunch, bread baking, cinema and a ton of great playtime at home.
2. Over the course of one weekend, various happy gatherings meant that we saw pretty much every member of our extended family on both sides – which was awesome.
3. Jake is currently rocking a pretty impressive buzzcut!  Not necessarily the haircut we would have chosen for him but he definitely pulls it off.  We’re not sure why this particular chemo has allowed his hair to grow back, the drugs affect each person in different ways.  And we’re all aware that his hair will go again during other stages of his treatment.  But it’s nice to see him with gorgeous long eyelashes again even just for a while.
4. No-one enters the world of childhood cancer for the perks, but it’s nice that there some wonderful charities out there who do amazing things to brighten our days.  And as an example, this week we received Jake’s Supershoes.  Before Xmas we filled in a form with all of Jake’s favourite things and one of their incredible artists has translated his four year old’s vision into his dream pair of shoes – including a particularly obscure Paw Patrol character!  They’re amazing and we all love them, although I’m desperately cleaning them up with a baby wipe every day as I don’t want them getting ruined!  Supershoes rely on donations for every pair of shoes they send out – all the artists are volunteers – and so if you fancy checking out their website the link is above.

We have a busy few weeks ahead treatment wise with lots of reassessment scans before the next phase of treatment at UCH.  But this post is long enough and so we’ll cover all of that in the next one!