Osteosarcoma

So now what….?

So we are now exactly a week after Ellis’ last chemo.

The highs of last week have long gone and the stresses of end of treatment tests, scans and trying to somehow pick life back up has taken over.

Negotiating multiple London and Stanmore trips, working out childcare, trying to remember who I need to talk to about referrals and when.

It feels like the very beginning again. The uncertainty of who we are seeing next, the logistics of living so bloody far away from all the appointments. Trying to split myself 4 ways, to make up for the time I’ve lost with the girls as well as making it a summer to remember for us all. We deserve this summer.

I’m trying to get Ellis back to full mobility, which is difficult when he’s so lazy. I had to bribe him with bacon so that he washed this week. No really. Teenagers are gross.

Trying to sort out school uniform, for the boy who’s gone up 3 shoe sizes in a year, the 12 year old who now wears age 16-17 trousers 😳. One daughter changing schools, the other stressing about her Kent Test… it’s all go.

There is no time to reflect.

No time to breathe, relax and process it all.

I’ve been asked a lot this week by my lovely friends, what it feels like now it’s all over. It must be amazing, right?!

Is it bad that it’s not?

Not seeing Ellis feeling poorly due the chemo is the best. I can’t describe it. But not having medical experts on hand to answer my silly questions or not having the lovely UCLH staff to chat to us is tough.

I feel a huge shift in responsibility from the team to me. All on me.

I’m trying to pick life back up where we left it way back in December, which is hard. Trying to get some normality back to bedtimes now I’m here all the time, trying to have dinner on time and actually cooking for us all for a full week and making sure everything is in place for September.

I just wish there was a little gap. A little time after end of treatment to really sit and accept it. To focus on what’s been and what’s yet to come.

But I can’t do that if I’m constantly running at full speed.

Anyone who knows me, knows I am a huge advocate for wellbeing and looking after your mental health. But again, impossible to do that during summer holidays with kids at home.

I’m just moaning for the sake of moaning today I think. I don’t even know what the point was to the blog.

I suppose what I’m trying to say is don’t forget about families like us. The ones who have reached the end and celebrated. Because even though we made it, it still affects us.

Because once you have had cancer, the scars stay with you forever. It changes how you think, how you live, your whole outlook on life. It makes you look at things differently, look at people differently.

No matter how free you think you are, you’re not. You’re a life long member of an exclusive club that got to say ‘I survived‘

But surviving and living are two different things.

Life is not a given, it should never be taken for granted. One day, your whole world can be turned upside down with no prior warning.

Maybe I’m not dealing with it all very well this week, but that’s ok.

I know what I need to do.

Xxx

One thought on “So now what….?

  1. There are SO MANY people who would love to help you. To give you some breathing room. To make it easier to adjust by cooking you dinner, or taking the kids for a day/night, or nagging Ellis to shower using a scary teacher voice. Ask us. Use us. We are here for you- all of you. Don’t be stubborn (anyone who still thinks I’m the stubborn sister clearly knows nothing about us!) and try to do it all yourself like you do. Let people help you. For some of us, it alleviates that awful feeling of helplessness as we’ve watched you all these last few months. Let us do something.

    Like

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