“Chemo Helen”

“You might be a bit tetchy”, they said.

“Be honest with your children”, they said.

It turns out the two are a dangerous combination! Day 5 of my first chemo cycle found me devastating my 10 year old with the news that Father Christmas isn’t real and neither is tooth fairy!

“But how do you get presents?” he protested forlornly.

“We buy them ourselves, what do you think we do?”

Cue 10 year-old sulking on bed with head under pillow! Oops….

I didn’t set out to crush him, but, as I explained to my husband, “He asked and I wasn’t in the mood for p***ing about”.

So one enlightened 10 year-old and an apology to a friend for a comment on facebook later, I am reflecting on the new phenomenon that is “chemo Helen.”

Thankfully, said friend and my husband thought both instances were hilarious!

I’m now on day 10 and feeling like I’m coming out the other side of the various delights that chemotherapy brings. To be honest, I feel like I’ve got off pretty lightly. It’s been a bit unpleasant, with bone pain, stimulated by the antibody treatment I’ve been having alongside the chemo; wakeful nights, which is very unusual for me- normally my head hits the pillow and that’s me until morning; ongoing mild nausea; effects on my skin and bowels, again both unusual for me; but overall, nowhere near as bad as I was told I could be, so I’m grateful.

Having said all that, we had our first experience of just how tricky this chemo business can be over the weekend. A simple urinary tract infection had us driving round South Manchester for a prescription in the middle of Saturday night.  I would normally manage something like that by drinking lots and waiting for my body to fight it off, but when you’ve had your immune system hammered, you can’t wait and see how it goes – you have to act quickly.

So this has been a week of adjustment. Adjusting to a new reality. Accepting that right now, I am not normal and all that comes with it is not normal. Although it will be my normal and my family’s normal, for the next four months. It’s a strange thing. The cancer diagnosis, the tests, the start of treatment – it’s all a bit of a treadmill. You’re on it and you go with the flow. Perhaps it’s because I’m a nurse and illness and hospitals don’t faze me? They are my normal – only this time, the patient is me. In my world, that is not normal.

Normally I’m the capable one. Normally I’m the well one. Normally I’m the one doing the helping. This last week or so, the tables have been turned and I find myself adjusting to this new season, where I have to accept that I’m a patient and, actually, for my own good, and for the wellbeing of my family, I need to behave like one!

It is such a strange thing to get your head around. I’m being treated for a serious illness and yet, so far, I haven’t been particularly unwell with it. Apart from a few spots and altered sensations like taste and touch, physically not a lot has changed. It hasn’t taken me out, so to speak. I’ve managed to walk every day – even run on some! I seem to have escaped the tiredness people talk about, and yet I’m supposed to rest. I feel like I’m being lazy. When I’ve felt well, I’ve carried on as normal, but discovered, retrospectively, that that wasn’t such a good idea!

A radiotherapist friend of mine pointed out the other day- you need to remember that this treatment is putting a lot of strain on your body and you need to rest to stay well – for your family, as much as you. She’s right. And so I’m caught in a space where I want to act normal for my children who are, at times anxiously, watching on for the signs that they fear of “Mummy being different”. Yet I need to behave differently in order to stay as well as I can, so I’m not too different! Confused? I am!

I thought I’d got away with it, to be honest. I was discussing it with my 10 year-old, and said, “We’ve been through the worst of it now (for this chemo cycle) and I haven’t been that bad, have I? To which he retorted,

“Well you were grumpy at the weekend!”

Sour grapes about Santa?

No. He’s right. I have been more grumpy. He worries frequently that I could suddenly become unwell at any time. He’s right – I might. I need to take notice of that and handle his emotions, and mine, well. I’m still figuring out how to do that.

So this is where we are. Not normal is the new normal, and I have to get used to it. The nurse in me, the human in me, wants control – to be able to manage this illness. But I’ve learnt this week, that you can’t always make the choices you want to. For example, healthy fruit and veg are very counterproductive when you have a “leaky gut” (a very polite medical term for, diarrhoea)!

But there are some things I can always choose. My choice has to be to embrace the tsunami of kindness that has been shown to us by my family and friends. I have to choose to allow them to help me and not feel lazy. To choose to rest, for the sake of my husband and two children, who are walking this more gingerly than I probably realise. I need to choose to do what I can to make their journey better. That means choosing to involve others in the process and not just thinking that, if I stay strong and keep up appearances, I can make it all OK for them. George is right – I might suddenly be very poorly. My choice to keep up appearances might be taken away! Even today, I have realised that I need to take advantage of the support services that are there for people with cancer. I think I’ve probably felt a bit detached from it so far, but I must choose to acknowledge that I am one of those people. I need to investigate what there is for my children, so that they know they are not the only ones. This is a roller coaster for my family and I need to choose to remember, it’s not all about me.