A destination to being better.

Tomorrow will mark a whole year since Ellis’ operation to replace his femur and tibia with a titanium implant.

A whole year…

It doesn’t seem possible.

When lockdown was a scary rumour and the only bubble was my little family.

Yesterday we had a check up back up at Stanmore with his surgeon and an X-ray on his leg.

Armed with lots of questions, we were excited to go.

One of my favourite things that came out of Ellis diagnosis was the road trips. The few hours in the car, feeling protected and looked after. Feeling like every mile closer we got to the hospital, the more safe we felt. It was a destination to being better. That’s how I saw it.

You learn to trust the team looking after you because frankly, you don’t have another choice.

He has the best surgeon in the field and the best oncologist. A real life dream team.

When we arrived, it was quickly made apparent that he wouldn’t be seeing his actual surgeon. It was a lady who we have never met. She didn’t know Ellis or his case and that was very obvious to us as soon as we walked in.

As soon as we walked in she said ‘“You’re limping”

Hello to you too and yes, this the reason why I wanted a face to face and not a telephone call.

I spent the next 20 minutes feeling like a naughty kid in the heads office.

She made me feel so small and insignificant.

I always ask questions, no matter how silly, because I want to know. But I stopped asking with her as she made me feel so stupid.

Ellis spoke about his charity walk and she frowned.

“Well… we don’t want him running any marathons. We want this leg to last”

To the boy who had faced so much uncertainty in his life, so get back up on his feet and try so bloody hard… for her then to say that? No thank you.

His actual surgeon is an incredible man, encouraging Ellis to weight bare as soon as he woke up from the op. Filling his head with a ‘can do’ attitude and that cancer will not stop him from anything.

And here she is, undoing all that positivity in one sentence.

Nice one 👍🏻

We then spoke about his leg and muscle mass. She pointed out he still has a noticeable smaller thigh on his bad leg, to which I replied that he is working so hard with his exercises to try to build it back up.

This is what she said and how she said it.

“Why would you try to do then when he doesn’t have muscle there in the first place..?”

Erm… pardon?

“They took two of his quad muscles out when they operated, so no amount of squats will build it back up”

Huh…?!

A year down the road and they are just telling us this now??!!

A year of Ellis fighting to achieve and get ‘hench’ in his words…. to be told actually your leg will be like that forever.

Also, due to this, his knee will tend to bend to the left. Watch out for that.

Wtf?! I asked her what we can do to support this and she shrugged. Legit shrugged.

She then measured his legs as we are concerned that one is still longer than the other. We were right.

His bad leg is longer, but his femur part is shorter. So his bad knee is higher up then his good knee, but his tibia on his bad leg is longer. Basically he is all over the place.

She said because they had to cut away more femur than they originally measured, the implant sat up higher, meaning his knee would be higher.

Made sense.

She then flippantly said he would need an operation.

I’m sorry… what? Casually saying to the boy who has been through a year of hell, that he needs another operation and not elaborating on it was a good idea in your eyes..?!

I asked her to clarify.

Huff at me all you want love, my boy needs answers.

She said yes. He would need an operation to remove the growth plate in his good leg, to stop him growing.

Even though his good leg is shorter.

And his bad leg is extendable.

Excuse me for being dumb, but give me something to work with here… I’m confused.

She then changed her conversation onto his oncologist.

She very bluntly asked me what his oncologist said to me 3 months ago.

I paused.

About what?!

Oncology and surgeon appointments are very separate. I honestly wasn’t sure what she meant.

She said the same exact words back to me.

I mean, you can keep asking but I still have no fucking clue what you are going on about 🤷🏼‍♀️

A huff and an eye roll later, she said she meant about his lung nodules.

I said he had an X-ray last month and I have a telephone consultation with the oncologist tomorrow. Why’s that?

She told me nodules showed up on his X-ray. She was looking at it now.

The X-ray that we don’t know the results for until tomorrow.

Nodules? On his lungs? Again?

I started to panic. She then realised and backtracked.

We then left.

The drive home was quiet.

We were trying to process this in our head… but didn’t know where to start to make sense if it all.

None of it made sense.

So now, here I am, on the eve of his 1 year operation anniversary, feeling like the very beginning all over again.

I’m trying to be positive.

I’m trying to make myself think that tomorrow, his oncologist will ring me to tell me she got the wrong child and that it’s all fine.

Until then, there is not a lot I can do.

Ellis’ first words he spoke after diagnosis, echo through me tonight.

“What’s the point of worrying, it won’t change anything”

I know he’s right. It’s the mantra that I’ve lived by for the last year.

Fingers crossed

Xxx

Happy

This…. ☝🏻

My life is bloody good. Better than good. My life is awesome.

Ellis is doing so well, he is incredible. He has a check up with his oncologist next week as well as his surgeon. He might finally need his first appointment to ‘grow’ his implant in his leg, which still freaks me out! He is growing so much and is now a size 12 shoe. I mean… stop now. Jeez.

The girls are doing well too. Beth is making me so proud with the things she is having to overcome this school year. Year 11s have had is so tough, but she’s smashing through it and planning where life will take her when she finishes. Covid or no Covid, she will achieve big.

Lily is Lily. She silently gets on without much fuss. She has always been a grade A student and came out of the womb ready for grammar school..! She is extremely academic and loves learning, even smashing records at school with her grades. But due to the year she had with Ellis last year, she failed her Kent test. (The test needed to get into a Grammar school). Not only that, she got offered one of the worst secondary schools in our area.

I can’t help but feel I let her down. Last year, I was so busy with hospitals, appointments, chemo and all things Ellis, that I had nothing left to give to the girls. Lily did no work whatsoever during the first lockdown. And actually, after only 3 months of year 5 before lockdown, she only just narrowly missed out. That’s pretty good going! We had to shield before everyone else locked down, so she had much less time at school than everyone else.

As well as the emotional journey she went on, my clumsy kid cracked her head open the day before the Kent Test and only answered 16 questions on the day due to a headache.

I mean, if that’s not ground for appeal, I don’t know what is.

I will do what I do best and fight for my babies. I am appealing for her to attend Ellis’ grammar school and have a huge pack ready and waiting for the appeal.

Bring

It

On

Iris is the most hard work lately. She is being assessed for ASD through school and I’m trying to learn how to parent a child on the spectrum. No matter the outcome, she is still just her, but I want to make sure I can do the best I can for her.

I had my Covid jab last week as I am a registered carer for Ellis. I don’t mind jabs and needles, as with my history I don’t have much of a choice, but I was scared. It’s new and controversial, but I knew I wanted it. The jab itself was fine, so fine in fact I had to ask the nurse if she had done it 🤦🏼‍♀️😂 but that night was horrible. I felt rough all the next day too but finally started to feel better that evening. I ran out of paracetamol and could only find calpol…. so thought hey, why not.

Calpol is banging.

It’s the first time I have ever made sure I’ve taken anything on time every 4 hours and didn’t miss a dose 😂 I even contemplated it on Ice Cream…. Kids don’t know they are born I tell ya.

So now we are only 4 days away from the end goal that is 8th March. The date that so many parents have been waiting for but dreading at the same time. It’s been a real mixed bag.

I for one can’t wait for them to go back, Ellis included. They all need routine back and to stop eating all my bloody food.

If I hear the words “I’m hungry” again I’ll personally post my children to Boris to make him deal with them. See ya kids 👋🏻

And my personal life? It’s safe to say that it’s on point. It’s incredible. It’s sickening good. I’m living again, like really living. I’m excited for my plans, for the future. But that’s for another blog 😜

To my fellow parents….

4 days until they are back at school.

39 days until the pubs open.

We’ve got this 💪🏻

Moving on peacefully

My blogs are becoming few and far between lately, nothing is really happening is the cancer world for either me or Ellis and lockdown has made it impossible to have any conversation that doesn’t involve “When this is all over” or “In the summer….”

For me, I’m in a really good place.

I am enjoying work (albeit challenging), I am sort of getting on top of balancing working from home and the dreaded home learning.

Things are calm.

Yesterday I decided to look back at pictures of Ellis’ journey as I am starting to forget.

If someone had said to me last summer that I would start to forget, I would laugh at them. It seemed impossible. The never ending roller coaster of emotions, appointments, chaotic days…. are all gone.

I looked back at the pictures last night and smiled. I felt content.

I didn’t smile because it doesn’t feel sad, but it doesn’t hurt anymore.

It’s now a ‘time in our life’.

A memory.

We’ve done it.

We’re no longer living in hell, terrified of every appointment, clinging on to every bloody result like his life depended on it… I mean it kind of did!

I feel at peace with it all.

I feel accomplished.

This is what it feels like to finally have closure.

I will forever carry around with me the things we learnt along the way, the things we experienced together and how they have shaped me into who I am now.

So in a strange way, I’m thankful for it.

It taught me that life can be fragile. It taught me that I am strong beyond anything I could imagine. It taught me that I can achieve anything as long as I fight for it.

Most importantly, it taught me to appreciate the silence.

When things are sailing on the calm, when the only drama is what to watch on TV that night, when life is simple.

I have a new found appreciation for walks, peace, nature, views. I spent so many days last year looking out of the view across London from his hospital ward. So many days walking around Regents Park, trying to keep my mind occupied. Watching the people go by, the squirrels jumping from tree to tree, it’s what kept me going.

My go to escape used to be angry car drives with the music up full, an angry run or dog walk with the music up full (I’m sensing a theme…)

But now it’s peace that silences my mind.

Now to start making new memories with my babies… peaceful, drama free ones 😝

Xxx

Dear 2020. Nice try

This time last year I sat on my sofa absolutely terrified and numb for the year we had to come. As Big Ben struck midnight, I silently cried.

I wasn’t ready to fight.

I didn’t know how to.

I tried to look forward but couldn’t bare to at the same time.

It wasn’t fair. Cancer took me on once before- but that was a breeze compared to this.

This was hell.

Actual living hell.

And I couldn’t do anything other than fight.

So that’s what I did.

I dried my tears and pulled up my big girl pants and faced it head on again. But this time with a roar of ‘mama bear’ inside me.

No one messes with my kid.

As quick as I got the hang of fighting it, 2020 decided to give us another gift didn’t it.

Covid-19.

In our world of panic and fear it upped its game.

More infection control.

More worry.

More sleepless nights.

Less family and friend support.

Less human contact of any kind.

But I drew from the positives. It’s all I had.

No work, no childcare to negotiate, no guilt because I had missed family days out with the girls or missed school assemblies.

The world stopped right when I needed it to.

Positivity was all I had. It was all I could control and I was dammed if I was going to let go of that.

So it became our thing.

Laughing through chemo weeks, messing around on the way to appointments.

Looking back, we certainly did kill 2020 with kindness.

I once read a quote that said “Don’t raise your voice, improve your argument”

And our argument was strong.

We weren’t retaliating to Cancer or Covid. We didn’t even feel like we were fighting sometimes. We were just us. Me and my boy.

And we bossed it.

With huge smiles on our faces.

This year has taken so much from me but also given me much more.

I’m at peace now.

We did it. Together. And turns out we are a pretty unbreakable force.

So 2020, I see your Cancer and Covid-19 and I raise you happiness and positivity.

Because that will always be the winning hand.

Always.

Xxx

“Maybe Christmas” he thought “Doesn’t come from a store. Maybe Christmas, perhaps, means a little bit more”

It’s here. Christmas. 3 days and counting.

Christmas 2020.

The most thought about, the most dreamed about and the most dreaded.

Every chemo stay, every operation and every London appointment to me, led to Christmas.

It has been my anchor during this horrible year, it’s been the thing that’s kept me going.

I was determined to make it the best Christmas ever, for them. It’s always for them.

Every day at the moment, I wake up to a new memory on Facebook of this time last year and each time it feels as if I am reliving it all over again.

Last Christmas Eve was spent sat by an empty bed, staring at the lonely present left on his bed by the lovely play therapist.

Up until then, that was the worst day of my life.

Little did I know what the next year had in store for us.

I was a huge mix of emotions that day, missing my girls who were at home over 100 miles away. Terrified and eagerly waiting Ellis to be wheeled back and come round from his biopsy. Itching to get home to my babies in time to watch the magic in their eyes and excitement in their tummies.

All the while, feeling weirdly numb.

Last Christmas I didn’t dare look forward. I couldn’t. I wouldn’t let myself go there.

My head was full of ‘what ifs’ and fear.

Scared doesn’t begin to cover it.

We didn’t tell the girls about Ellis until after Christmas and New Year.

Why?

Because I honestly was scared it might be the last Christmas with him. I wanted to give them all the best memories. I didn’t care that my heart was breaking, I didn’t care that I was falling apart inside, all that mattered is that they were together.

I’ve never said that out loud or admitted it until the other day.

That’s huge to carry around for a year and it feels overwhelming to let it out.

But we did it. We are here and we are ready to have the first Christmas of many.

As you may know if you have read my blogs before, I didn’t cry about the situation all year, I couldn’t.

But as I write this, tears are falling from my face.

I’m not sad.

I’m grateful beyond any words could do justice.

My babies are OK.

Actually, they are more than ok, they are happy and all super excited about Christmas.

I know the Covid thing is making this Christmas hard for many and I can’t imagine what that must be like, but for me, I couldn’t care less.

I don’t care if shops aren’t open.

I don’t care if we can’t go grab a coffee.

I don’t care if we can’t have a huge family gathering (the time will come I’m sure and it will involve allllll the gin 😜).

All I care is that I will wake up Christmas Day to 4 beautiful, healthy children all soaking up the magic of it just for that one day.

Champagne is already chilling and carrots and mince pies for Santa are ready to go.

Wherever you are this Christmas, whatever you are doing, take time to be grateful for something during this madness.

Because it will fill your heart much more than any gifts can.

Xxx

1 year later…

So today is the start of the firsts…

A year ago today was the first day we went to the GP and demanded an X-ray. Getting told off for booking an emergency appointment. Being questioned as to why I wanted him to have an X-ray and only being given one to shut me up.

From today onwards it will be full of many firsts. First chemo, first general anaesthetic, first hospital stay, first London appointment. It’s endless.

I haven’t wrote a blog in a while, as I’ve been taking some time out of life to focus on my mental health and well-being.

I knew this was coming and I have prepared myself for the emotional impact it will have.

Or I thought I have.

Turns out, you can never prepare yourself.

I’m still sad. So sad.

I’m still angry.

I’ve been told by many that they are worried about me. I have been told through people that they are concerned I’m having a break down. I have been told I am being supported. Which is useless, unless you are actually supporting me. Ironic really.

Supporting me and telling me you’re supporting me are two very different things.

One is for your benefit, the other is for mine.

Take a minute to think about which one you are.

One whole year has passed, but it only seems like yesterday we were told the news that changed us all forever.

But despite the emotional impact tomorrow’s date is having on me, I feel in a really good place.

The time I have taken to look after my mind is paying off. The hours of counselling have helped me feel calmness again, after a year of chaos.

Last Christmas, I was beyond terrified. I didn’t dare think forward to this Christmas, because I didn’t know what it would be like. I have never cried as much as I cried in that first week. It’s my main memory of it.

I have reflected a lot lately on the year passed and how it affected me.

I have learnt that I use detachment as a coping mechanism. I saw the treatment plan as a challenge- a game. It was just a target that we had to reach and to get there we had to jump through all these weird hoops.

That’s why I didn’t cry when he rung the bell or when we were told he is NED. I was still detached from it all.

But this weekend everything changed.

I went to London where it all began. I walked the same streets that were home to me for nearly a year. I stood outside the hospital and spoke about my experiences, the sounds, the smells, the routine. I looked up at the 11th floor, seeing the view from a different angle in more ways than one.

It was closure.

I felt contentment.

And I cried.

It felt exhausting but liberating all rolled into one. Like a tidal wave of emotions that I had stored away for a year, locked away in the fear that if I let myself feel, it would consume me.

But it didn’t.

I felt empowered yet weak all at the same time. It was surreal.

I went with one of my best friends who just let me talk. Let me waffle on about the expensive pharmacy who ripped me off for both hot water bottles and fans in the opposite seasons, really listened and asked questions about the treatment, my feelings, my worries.

Who stopped me in my tracks before we got there, looked me in the eye and said “What do you need from me” and for that, a simple thank you will never be enough.

I needed to be listened to not just heard.

Now, I know tomorrow will be hard, I know the next few months will also have their hard days but I know that I have overcome so so much and come out of it a better person. So I know I will be ok.

Yes, I am still scared and no, that probably won’t be the first time I will cry over the situation, but that is more than OK to me.

I am in control of the situation now, something that I haven’t been up until now.

And it feels incredible.

Xxx

Still picking up the pieces

I’m feeling so sad tonight for a variety of reasons, most of which I can’t even write about on here, but there is one huge one that I’m struggling with.

My girls.

My beautiful girls. The girls who have took this year in their stride. They have been beyond incredible in their attitude, empathy and expressing their emotions. I could not be more proud.

But during this year, somewhere along this horrendous year, my girls have grown up.

And I’ve missed it.

Lily was only 3 when I was diagnosed and I remember that when it was all over I felt like I had missed out on her growing up. I didn’t know what her favourite dinner was anymore, what she liked to do or didn’t like. I remember this being so hard and I struggled for a long time with this.

Now it’s happening again.

I feel like I’ve been the shittest Mum to those girls this year.

I’ve been so consumed in Ellis and his needs and treatment, that I haven’t given them the time they need.

Iris doesn’t need me. She’s not fussed. It’s Daddy who she needs. When she can’t sleep, when she hurts herself, she doesn’t come to me anymore she goes to him. It’s beautiful to see their relationship blossom over this last year, but it selfishly hurts so much to see mine with her disappear.

She can now read so well and is absolutely thriving at school. She is super sassy and insanely crazy! She makes me so proud but I miss her desperately. I miss the months that I wasn’t here and I know I can never get them back. The weeks spent at the hospital, the times when I was here in body but my mind was always somewhere else to do with hospitals.

I threw myself into Ellis and getting him better.

Lily’s got a beautiful character and just gets on with things. She has a love for learning that hopefully will never change. She loves school and has settled back in with ease into her new year. She has to go to breakfast club and after School clubs every single day to fit around my work, but she never moans. Tonight I found a practice Kent test paper on her bedroom floor. She got 100%. She didn’t even show me. I’ve cried a lot lately, but this set me off again. Why didn’t she tell me? Why wasn’t she excited to show me? Did she think I would say I don’t have time? That kills me inside. I think back to things she has told me or shown me this last year and that’s exactly what I’ve done. “Not right now Lily, I’m just on the phone to the hospital” “Show me later Lily, I’m just trying to work out Ellis’ appointments”.

And then there is Beth. My mini me. The stubborn, funny, amazing eldest. She’s been pushed out more than the others, because of Covid and her dads we didn’t see her through the whole of lockdown. We kept in touch with FaceTime and texts, but I missed her so bad. I haven’t been involved in her schooling this year at all. She’s gone into year 11, the most important year and I feel like I’ve blinked and missed it. She is the most empathetic (not that she will know what that word means 😂) girl I know. The struggles she has faced have been huge, but she’s smashing life.

I feel guilty beyond any words can express about this year.

The impact it’s had on us a family is huge and I’m not sure if all of it can be repaired.

I have some serious making up to do with those 3 little ladies. I need to show them I’m here and not going anywhere. I need to get to know them again and start making memories.

I wish I could scoop them up and say sorry. Sorry for being a shit Mum. Sorry for not having time for you, sorry for not being the Mum you all deserve. But I had a battle to fight and I gave it everything I had.

Things are different now. I’m here.

And nothing is going to pull me away again.

Xxx

World Mental Health Day

As it’s World Mental Health day I obviously wanted to write a blog. I want to talk about PTSD and triggers.

Tonight I am staying out with my mum and sisters having a girlie night with wine, face masks and a take away! I’ve been so excited for this for so long until now.

I have packed so much that it warrants my huge suitcase and I’m not even sorry 😂

But as I opened it, I felt sick. The last time I used this one was when he had covid. I usually unpack them as soon as I got home, but for some reason I had left this one.

All the horrific memories flooded back.

The industrial hand gel, the leaflets about his admission, a little certificate that they give to all children who use the transport to intensive care, his mouthwash for the chemo ulcers, handheld fans because England hasn’t invented air con yet 🤦🏼‍♀️

On the certificate it had the date. 4th July. Independence Day. The day that changed me forever. Things could have been so very different that day. They weren’t and I’m beyond grateful. But these memories will haunt me forever.

Most days now, I feel I’m doing ok but small things like this take me right back to that moment.

I can still hear the machines, the panic in the nurses voices. The smell of hospitals and the feeling of pure fear.

I’m sitting in the safety of my own bedroom, I can hear Ellis shouting like a little girl on his Xbox 😂 but my heart is still racing. It’s like part of me is stuck in that date and won’t move on.

I’m really proud of myself and how I have coped with this year and I know this will take time but it’s the hardest bit. The bit that creeps up on you when you least expect it. The bit that lingers around and attacks you if you dare to be happy.

I know he’s ok now and I know it’s in the past. But past or not, it happened and it was very real.

Physical pain leaves scars for people to see and understand. So does mental pain, but these run a lot deeper.

How can I fix these types of scars? No amount of creams or plasters will fix these. I have counselling once a week, which I find so difficult. I can open up on my blogs, but face to face is so hard. I feel vulnerable and stupid. I feel like I don’t have the right to even be sad because things are ok.

This week we had the awful news that one of the beautiful children on the ward with us didn’t make it.

This news ripped through me like a knife. Other children on the ward have passed away during Ellis treatment, but we had spent time with this boy. His Mum and I had bonded over the gross hospital food and shared similar stories about being a cancer mum during a pandemic. We got on so well and laughed so much. During one of my hardest weeks, talking to her and her boy saved me. So to hear the devastating news last week hit me hard.

Again, with that bit of news, I was back there. Back in hell.

Hell for me will always be there. It will always be somewhere I revisit from time to time and I have to accept that.

It will never be over. But I will learn to cope with the feelings a bit better. Hopefully one day, I will be able to look back and not feel the fear pounding in my chest or the terror bubbling up in my stomach.

It will never be a nice place to revisit, but I know that one day I will be ok with it.

I still have a lot of work to do on myself and my own mental health, but being aware of that is the first step.

Mental health is not something to be ashamed of. It’s something that needs to be spoke about and discussed.

Sometimes, it’s ok not to be ok.

Xxx

Cancer does not have a face, until it’s yours or someone you know.

Today, the tears finally came. Months of not being able to cry came to a halt today.

A beautiful little boy who we had the pleasure of meeting on our ward, passed away on Monday.

He had bone cancer the same and Ellis and his Mum and I bonded over the rubbish hospital food and lack of wine!

See this boy wasn’t at the beginning of his journey. He had crossed the finish line and rung the bell.

He did it.

This is what a lot of cancer parents struggle with the most when treatment ends. People assume it’s over. People assume that when their hair grows back, they’re fixed.

But it couldn’t be further from the truth.

Ellis has a 55% prognosis from 5 years after the date of diagnosis.

5 years.

We have not even done 1 yet.

The treatment being over is just our safety net gone. It’s our constant check ins with the team, having the nurses and doctors on hand to answer any questions. You get used to feeling safe…. in a world where actually, you know you’re not.

Then as soon as you get comfortable, it chews you up and spits you out.

Back into the real world, but for this next part you have to do it on your own.

I feel so many emotions tonight. I feel an almost guilt like feeling, why that poor family. What did we do any different?

I feel sad. Beyond sad actually, but tonight I’m too emotionally exhausted to find a more suited word.

I feel scared. What will these next 4 years have in store for us? I can’t even let myself go there. I feel sick.

It’s 2020, how is this still even happening.

How are our children still not beating this horrible disease. There has to be more that can be done. Right?!

I don’t want this life anymore for me and my kids. Enough now. But there is nothing I can do. I can’t stop it.

As a Mum, you promise yourself you will protect your babies. You will keep them safe forever, no matter what. You would die for them if you had to.

But I’m not in control of our situation. Not at all.

I pretend I am, to them. Lily writes me letters thanking me for keeping her brother safe and it breaks my heart. But I’m not. No matter how much I want to.

I wish things were different.

I wish it didn’t exist and it wasn’t a thing.

I wish every child would be allowed to have their whole life ahead of them and not have to spend their precious last months in a hospital having barbaric chemotherapy.

I wish it didn’t like children. I wish it took one look at them and went the other way.

It’s not fair.

And I can’t see it changing anytime soon.

If you’re with your babies tonight, let them have an extra cuddle. Read them an extra story. Kiss them that little bit more.

No, I can’t promise to keep my babies safe forever, but I can promise I will love them for eternity.

And that has to be enough.

Xxx

What cancer didn’t take, Covid did

I’ve not wrote a blog in a while, partly because I’ve been back at work which has been crazy busy, but also because I’ve not been great in my own head.

Covid definitely has played a huge part in our story. We had only just started out when the world went into panic. Only 3 months into it when lockdown happened. Because there was a definite buzz before it took hold of the world, all of our hospital appointments have always been the same. We had restrictions in place a long time before the world did.

Life as a cancer mum during a pandemic has been hard. For reasons that until now, I had never thought about.

I’m on a few parents Facebook pages, for those who’s child has cancer. Super supportive, super helpful and a real sense of belonging in a world where you have never felt more misunderstood.

In these groups, we would see posts about how their child got through their treatment but having days out, having family visit the hospital and making sure they felt as loved as possible. Amazing.

But we couldn’t do that.

I felt a huge sense of guilt and unfairness. Those little things are so important, a huge part of resilience and recovery, but it had all been stripped from us.

1 parent per child to any appointment, and chemo- even his last one.

The responsibility of retaining and relaying that information to the other parent was huge. Decisions that had to be made on the spot, forms signed with only one parents signature and face to face meetings with just one parent, who was already full to the brim with information, trying to speak on everyone’s behalf.

Us cancer mums (and dads) supported our kids- but who supported us? No friend to go out with for a drink during the hardest times. No shopping trip stopping for cake and coffee to let off a bit of steam.

We were alone.

And in some respect, I think we will be forever.

It is no ones fault. I have so many amazing family and friends around me, who will listen to all my stories. But when no one has seen it first hand, it leaves you in your lonely little covid club once again.

End of chemo has been tough for this very reason.

How can I expect other people to even try to understand the enormous pride and relief that he made it to the end, when they don’t have the scarred memories in their heads of children on the ward who didn’t. The posts on the parents groups notifying us all that their child wasn’t as lucky.

You develop this coping strategy, like it’s a game. The worst game you have ever played. Jumamji on steroids.

Every single low make the highs that much higher.

After all, when you have been surrounded by death and dying for the past year, living is pretty spectacular.

You will never truly be able to understand what someone is going through, but being able to go through it alongside them gives you an insight.

To have done all this on our own means that no one can even try to understand. No matter how hard they want to.

Myself and Gavin are the only people who will ever be able to try to understand what the other person went through as we shared the load completely. We both did chemos, we both did part of the op and we both did appointments. But even with that, we did them on our own because of covid.

Support groups stopped, play rooms closed and only 2 parents allowed in the kitchen at one time meant that we were reminded of just how alone we were every where we turned. Nurses and doctors with facemasks on, which made it difficult to read their faces, feeling so impersonal.

Parents had no support.

The children were incredible as ever and all had their parent by their side, running on empty making sure they catered to every single need of their child. Like superhero’s without the abs.

We had no one.

The days were long and the nights were longer. It was like prison. Not even able to pop to get a coffee because the restaurant had closed. Not allowed to leave our room at rainbow ward, so stuck in it for the whole duration. No human interaction apart from the amazing PPEd nurses who would come and stop his machine from beeping.

No one could predict covid, but we can all learn from it.

Human interaction is vital. Support is vital. To let someone they are not alone is vital.

If you know a parent of a child with cancer during a pandemic, ask them about it. Chances are they will not be able to stop talking!

We need to be heard. Not in a ‘look at me’ kind of way, but because we have the whole weight of the world on our shoulders under normal circumstances, but covid has made that load a million times heavier.

So take a walk in my shoes, see what I’ve seen, hear what I’ve heard, feel what I’ve felt. Only then will you be able to start to understand the way I now am.

Xxx