godberboys, godberstravel, bilbosjourney, #donate4bilbo, bilbosjourney, childhoodcancer, leukaemia, leukemia, maintenance, covid-19, grief
About us - Bilbo's Journey

Day 529: Grief

About 3 weeks ago I started writing a post called “things I hate about Covid-19” it was going to be a long list of things I was frustrated about much like my Things I Hate About Cancer post. But somewhere after about 10 things I abandoned it. I had started to write it to let off some steam. But it wasn’t really helping, it was just making me more sad.

Grief

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I will miss my nan dearly

Then 2 weeks ago I started trying to write about how I was feeling after my nan passed away in the early hours of Monday morning on the 29th March. But I couldn’t.

Was it writer’s block? Not knowing what to say? Was it because I felt like the walls were closing in and I was trapped. Am I depressed? Has cancer, isolation and the stress of everything we’re dealing with finally gotten to me? The truth is it is probably a combination of all of the above and I am suffering with what is commonly known as grief.

But this isn’t just any grief, it is a confused, upside down version of it because whilst I was in my own little grief bubble the world felt like it was in one giant atmospheric sphere of grief too. I wasn’t alone and yet I felt so lonely.

Pretending Everything is OK

I was feeling myself becoming slower and less focused than normal. My mood was up and down I felt irritable and angry. I wanted to cry at the smallest thing and caring less. Sometimes I was caring more. I was feeling withdrawn and unmotivated. At times I felt almost hypo. Then my energy would crash and all I wanted to do was curl up and sleep. I was finding life really really fucking hard. And all I kept telling myself was get a grip, you’re lucky, there are people who are worse off than you.

I was using every single ounce of energy to put on a brave face and pretend everything was ok – it wasn’t. I wasn’t allowing myself the space to feel and grieve.

For some reason I felt the need to pretend I was fine ALL THE TIME when I wasn’t. It was exhausting.

It isn’t really surprising I was cracking under the pressure. We haven’t’ had the best start to the year.

2020 So Far

In 2020 so far we’ve had two terrifying visits to hospital with Bilbo, he’s still on antibiotics for another 6 weeks daily. Cancer still rules our lives. We’re having to weigh up the risks for getting treatment at hospital and having Bilbo’s routine appointments. It has been reassuring and terrifying in equal measure.

godberboys, godberstravel, bilbosjourney, #donate4bilbo, bilbosjourney, childhoodcancer, leukaemia, leukemia, maintenance
Despite Covid-19 chemo life continues for us. Topping up the pill box for the week.

I’ve changed jobs. Covid-19 has been a constant feature in our lives since early February, first on my radar from a work perspective and then more and more from a personal what does this mean for my family perspective.

My dad travelled to Canada to be with his mum in February, she died two weekends ago. And in the early hours of last Monday morning my mum’s mum died peacefully at hospital here in Milton Keynes.

My nan here in Milton Keynes was only 4.3 miles away but on that Sunday night when we got the call that she didn’t have long to live she might as well have been 4323 miles away. Being stuck at home having to stick with the choice we made to keep Bilbo safe was agonising.

godberboys, godberstravel, bilbosjourney, #donate4bilbo, bilbosjourney, childhoodcancer, leukaemia, leukemia, maintenance, covid-19, grief
Our beautiful Nan
godberboys, godberstravel, bilbosjourney, #donate4bilbo, bilbosjourney, childhoodcancer, leukaemia, leukemia, maintenance, covid-19, grief
Nan was looking so well at Christmas

Covid-19 is leaving lots of families in this agonising position – it is utterly heartbreaking and for me it felt like the final straw. I adored my nan, she was an amazing woman. Amazing for being funny, kind and thoughtful and amazing at being a total pain in the ass – which was all part of her magic. She will be missed deeply by us all, especially my boys.

Isolation

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The boys are mostly coping well and behaving like best friends, it is incredible how children are able to adapt, this is just as tough for them.

So whilst we’ve been in our isolation bubble we’ve been grieving a lot. And it has been hard. We hurt and we crave the ability to step away from this house and wrap our arms around our friends and family. I miss the ability to be with people more than anything.

We’re working our way through the grief cycle in our own time and in our own way. Being focused on what I am grateful for is helping. I am also trying to focus on what I can control and not getting stressed by what I can’t control – this is NOT easy.

godberboys, godberstravel, bilbosjourney, #donate4bilbo, bilbosjourney, childhoodcancer, leukaemia, leukemia, maintenance, covid-19, grief
Remembering this cycle has helped a lot when working through how I feel

Cancer took away all of our control. And being back in isolation is resurfacing a lot of those feelings. We felt pretty helpless. So many people wanted to help and there wasn’t a lot they could do. However this time we NEED help. We can’t leave the house. We can’t go to the shops when we run out of stuff, or even once a week. I HATE this.

We have had one online delivery, it was a fluke. We haven’t been able to get one since.

Lost Control

I try every day. I’ve registered with the government. We get the at risk letters weekly, they know about us. But Tesco, Asda, Sainsburys – NOTHING. We rely on our friends. A few independent retailers who are delivering. The milkman drops off milk, bread and eggs. We have Hello Fresh for 3 meals a week.

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A HUGE thanks as ever to The Henry Allen Trust for keeping us supplied with essentials (and Chocolate)

It is not the same. And it is breaking me. I am independent, i’m not used to not being able to fix things, solve for things, organise things. But on this i’m failing.

And so now as I type this I have a long list of items we’ve run out of, I’m keeping a list in the vein hope we get a slot with one of the supermarkets and failing that wondering who we ask to put themselves at risk for us? there are no shortage of people willing to go shopping for us, I just HATE asking. This is about me not being able to do something so basic as get food shopping in for my family and I can’t handle it.

godberboys, godberstravel, bilbosjourney, #donate4bilbo, bilbosjourney, childhoodcancer, leukaemia, leukemia, maintenance, covid-19, grief
We can’t thank the NHS enough. They have been so amazing through Bilbo’s treatment. And my nan received the very best care right up to her passing when we couldn’t be there with her.

So we’re grieving, we’re grieving for the loss of family members. We’re grieving for strangers who are daily reduced to being a statistic on the news. We’re grieving for our life, as it was and knowing it won’t be the same ever again – for any of us.

4 Comments on “Day 529: Grief

  1. Hi there. It’s worth contacting Ocado direct to explain your situation as they have a priority delivery. Also Morrisons are offering a delivery of a basic box. I hope you get the support you need. So sorry for your loss. And sending a virtual hug.

    1. Thanks Coral – about an hour after I posted the blog. I was able to see they’d assigned a priority pass to our Asda account. So now we’re all sorted thank you XX

  2. I know exactly how your feeling. Not being able to leave the house to do basic errands is really hard. Especially when it’s because of protecting my son. Living in a cancer bubble completely changed my perspective and makes me thankful for the support I have around me.
    I’ve not been able to get on the supermarket priority list either. I’ve registered with the government website but heard nothing. Open to tips to access online delivery.
    Keep smiling at the small stuff. Watching my son embrace his now new normal keeps me going.

    1. Hey Claire we have finally managed to get a slot with Asda. I will drop you an email with the details.

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