Day 960: Asking for Help – Again

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When Bilbo went onto steroids for the second time in May 2019, I was already back working. Rich and I both were. We had managed to go back to some sort of normality. We worked most days only taking time off for appointments. Bilbo was going to school and I was using work as a welcome distraction.

That was until one day in May 2019 it all got too much. Being back on steroids turned Bilbo into a monster. I was trying to do it all, be everything to everyone and I was failing miserably. There was going to be no prize for being a hero, I needed to stop. I needed to breath and I needed to ask for help. Day 211: Asking For Help

For those who know me I’m not good at asking for help. But I did and it was the most important thing I could do for myself and our family at that point in Bilbo’s treatment.

Once again I am at that point. I need to ask for help.

Asking for Help – Again

I’ve exhausted all the avenues, I’ve tried all my usual ways of dealing with whatever life and in particular cancer throws at me. My normal way of coping isn’t working.

Just over 3 weeks ago I had the conversation with my managers at work and said I needed to take some time. Some time for me.

Of course things are never that simple. And I explained I needed to just do one more thing before I would take some time off.

Why not stop 3 weeks ago?

I couldn’t. And as I talked through my decision with my manager Brandy she hit the nail on the head. She said, “you’ve lost all of your control, but you can control this piece of work” and she was 100% right.

I’d been working on something for months, I’d poured my heart and soul into it and I wanted to see it through to completion.

But I am so grateful that my team recognised the signs. They saw that I needed help way before I did. On Friday the project completed, we wrapped up Learning at Work Week 2021. I felt supported every step of the way by my amazing work colleagues. And now I’m ready to take some time out.

No Shame in Asking for Help

And as I take a step back. I know there is no shame in asking for help.

I recognise right now I’m not physically well or mentally well. What I am, is really really tired. And I have been putting a brave and mostly happy face on for some time. From the outside you wouldn’t know, there is anything wrong. I’m pretty good at my game face now, I’ve perfected it over the last 40 years. But the mask has slipped and I need to recharge.

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If I’m not taking care of myself I am not going to be able to take care of my boys in the way they need me to.

Exhausted

We haven’t had a day off from cancer since we got Bilbo’s diagnosis. Yes there’s been good days but every morning we give him his anti sickness and every night we dutifully give him his chemo. We’ve driven thousands of miles backwards and forwards to appointments. We’ve had to watch our boy as he’s prodded and poked, we’ve watched him suffer, we’ve felt his pain.

Not a day goes by I’m not grateful that he’s still here, but worry what if… what If he relapses, what if Harrison gets it, what if the chemo doesn’t work…

We were also thrust into a community of people like us. The groups are an amazing place for support and a place you can turn to for advice. But the stories of children suffering is relentless. You get to feel the highs when you watch families finally ring the bell. But we’ve also felt the lows, when treatment doesn’t go to plan, the side effects hit and the pain when others haven’t made it and have grown their angel wings.

Reflections on 2020

Maintenance was supposed to be easy. To start with it felt easier, no wiggle, no weekly trips to Oxford and we even went on holiday to Ibiza. But on reflection there is nothing normal about the last 18 months even before you overlay the pandemic.

• We had to overcome Bilbo’s sickness when he first started maintenance
• My nan was diagnosed with cancer Christmas 2019
• Bilbo was hospitalised twice at the start of 2020
• The pandemic started, we were told to isolate, my nan died and none of us were able to be with her Day 529: Grief
• We isolated for 18 weeks Day 590: 15 Weeks Of Isolation and once we were finally able to get out, Bilbo’s other issues started Day 825: Cruel Cancer Side Effects

And then in March 2021, the rug was pulled from underneath us, Day 929: Cancer Wall Again.

How’s Bilbo Doing?

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Right now I daren’t tempt fate by saying he’s finally doing well, really well. Aside from the lotions, potions and additional meds we still have to navigate. We had the first weekend that felt “normal” in sooooo long.

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Bilbo was able to walk into town to collect his new glasses. He wasn’t too exhausted. We were able to spend Sunday on the beach and even rented a couple of kayaks. It was fun, it was joyous in fact.

But we can’t get complacent. Bilbo went down hill incredibly rapidly and his life was turned upside down. He’s not out of the woods yet and we really don’t know why he’s turned a corner, my money is on the folic acid but who knows.

The words I’ve written on this blog really don’t convey just how awful the last few months have been. Our friends and family who’ve visited during the worst of it, have seen first hand just how traumatic it has been. But for me the worst part of all was losing our little boys sparkly bubbly personality.

Breaking Point

And that was why I reached my own breaking point. The cruellest part of the last 2.5 years has been watching him struggle. I quite literally became the punch bag for him. I was the only one who could apply the creams. And with that responsibility I became the person he hated the most.

Every night I would have to find the strength to tackle the bedtime routine with him. Mostly with him screaming, crying and being out of control. And every night I adopted different tactics. Negotiation, tough love, bribes. I won’t lie there were nights where we all just agreed not to bother. And I broke my own rule, I broke down in front of him on more than one occasion. Instead of being the strong one I sobbed too. I am sobbing now writing this because I felt like I let him down. I lost my ability to be strong.

I was hanging on by a thread.

Asking for Help – Again

And so I asked for help. Knowing I had this time, helped – a lot. But getting my boy back has had the biggest impact on how I’m currently feeling. He’s back to being cheeky, talkative, back chatting and causing mischief. But I will take it all.

I just want to breath in all that sparkling personality and renewed energy. And bask in it.

Looking Ahead

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We have a long way still to go. March 18th is in sight but as our oncology nurse said a few weeks back “it feels so very far away” and she is right. 274 days should be a easy compared to the 960 we’ve already ticked off. But the last few months have taught me once again, nothing is easy about cancer.

What we can do is make the most of the good days to top us up for the bad days.

For the next 10 days I am super mum. I am doing the pick up. I have dates with both the boys for mummy time. We’ve already squeezed in an after school beach trip and last night all four of us had a lovely evening, sitting on the breakwater, and I even braved the cold sea and went for a dip. Bilbo informed me “you are so brave mummy”. Last night for the first time in a while I felt brave.

Gift of Time

We moved to Devon because cancer gave us a very real reminder life is precious. We will only get this time once, cancer has already robbed so much of that time. So now we need to reset the balance and focus on what is important….living!

For anyone reading this who is struggling, please know it is OK to not be OK and there is NO shame in asking for help. In fact I am living proof it is the best thing you can do.