Osteosarcoma

Just Mum.

Sometimes being a Mum fucking sucks. Like actual sucks. From the refusing to wash battles to the “I can’t get comfortable” ones. The “she looked at me” and the “I hate my dinner even though it was my favourite last week”.

I cried today.

Not because of the cancer. Not because of anything other than because being a Mum is hard. So bloody hard.

It’s the hardest job I’ve ever had (and I get moaned at for a living!)

The little one is waiting an assessment for ASD and whether she gets a diagnosis or not, life’s pretty hard for her. I have to be patient at all times, understanding, consistent and almost sub human. The slightest little thing forgotten and her day is on a downwards spiral, leading to stressful dinner and bedtime.

Then there is the pre-teen who refuses to wash. She is currently in the shower for the 4th time today because her hair still isn’t washed. I genuinely wish I was joking. She has just come out and gone back in for the 5th time since this morning because she has gone the complete opposite way and left shampoo in it.

I have no words.

Blazers thrown all over the place, dirty knickers and pants literally everywhere I look and cans and bottles covering the floor.

I have a meeting with Ellis’ school, the LA and some other lady tomorrow about his draft EHCP which he has apparently been awarded for for being sad. Legit. It states he doesn’t have any health concerns or needs. The boy with the bionic leg, apparently is at no risk of falling behind at school. Hmm.

But I have my notebook ready, full of legal jargon from the numerous support helplines I have rung, just to try to get some sense onto those forms and for justice.

It’ll be 2 years next month since he found the lump and actually I don’t think I’m coping very well with it after all.

Or maybe I am and I’m just having a down day. Week. Month. Whatever the hell it is.

All I know is I just don’t want to Mum today.

I just want a day off. Fuck that, I want a week off. I want sun, cocktails and a pool. I want to read a book in peace, I want to have a bath without being interrupted or having to use kids shower gel as it’s all that’s left.

I love my kids. They are my whole world and I would (and do) fight for them every single day.

But there is nothing wrong in saying I’m struggling.

All I do know, is that I know I cant stay in my pity party for one.

My heads pounding and I feel emotional. Nothing that a cuddle in bed with the most perfect man in the world won’t fix.

Until tomorrow, when it starts all over again….

Osteosarcoma

Resilience

What a dangerous word.

“Wow he’s so resilient”

“The resilience in your children is incredible”

Thing is, the last 18 months my children weren’t always resilient.

To be resilient you need to have a secure base, safe friendships and social competencies. To have talents and interests and positive vibes and having an education.

My children had none of these.

Education didn’t happen in this house during the first lockdown, because I was hardly here. Surviving was our priority. Their secure base was no longer. Friendships were via a screen with people who couldn’t begin to understand how they felt. Brownies had stopped and anything vaguely fun didn’t happen. As for positive vibes…? I don’t have to explain that one.

So without this solid foundation, they stood no chance at being resilient.

They were scared.

They were stuck in flight with no way of getting back down.

Ellis got his head down and carried on with grit and determination. But resilient? Definitely not.

Psychologists define resilience as the process of adapting well in the face of adversity, trauma, tragedy, threats, or significant sources of stress. As much as resilience involves “bouncing back” from these difficult experiences, it can also involve profound personal growth.

My kids did no ‘growing’ only ‘getting by’.

I feel angry at the word. I feel it has done more damage than good to my family.

Mental health is now talked about more and more people have an understanding of it and it’s effects. But I feel that word has been changed to mean something else entirely.

To some, it means fighting through tough times, without a thought. Getting your head down and not moaning.

That’s damaging.

What happens when you reach the end?

Mentally, you are back at the beginning, realising you didn’t stop to breathe. Stop to take it all in and process what was going on. But you are at the end, that was the goal, so that’s enough, right?

Wrong.

Now you are left with emotions that you don’t know what to do with, thoughts and memories that cut deeper the second time around.

But that’s OK. You reached the end, crawling over that finish line, an empty shell of the person who started.

Things need to change.

Resilience, when used right, is powerful.

It’s trusting yourself to make decisions when forced to do so. It’s finding another way to reach your goal when things get in your way. it’s processing what’s going on while simultaneously believing in yourself that you will be ok.

My children are now healing. They are processing. And it’s bloody hard.

From the outside, we look ‘normal’. They are happy. We all are.

But we’re forever broken.

Iris sleeps with the radio on now as she developed a nervous cough, followed by a phobia of sickness. This escalated this summer into an almost eating disorder where she was controlling what she ate, when she ate it.

She is 6.

It was horrendous.

Tonight, I heard her crying in bed so I went up. She is getting good at talking about her feelings now, with constant encouragement from everyone who loves her. She told me that on the radio was an advert which said if you have a cough it could be cancer.

She asked me if she had cancer.

Again, she is 6.

She was terrified she would have to face what she saw her brother face and she didn’t trust her coping ability so lost control.

In that moment, like when I had to explain to her that he had cancer, I had to put a front on.

I had to be what she needed.

I reassured her that cancer actually is very rare and normally, children don’t know other children with cancer. She was shocked.

“So how did Ellis get it if it’s rare”

What could I say to that? That he was unlucky? Would that reinforce her fear?

So I just simply said, he just did. Sometimes, it just happens.

“Would it happen to me?”

Probably not…. Was the only thing I could say. I have never lied to her, not once. I’m not going to start now.

We spoke for a while about how amazing the doctors and nurses were, how I instinctively knew something was wrong and how all the signs pointed to it.

With her phobia, lots of her thoughts are irrational, so I am trying to hardest to explain things over and over until she understand the logic behind it.

It’s exhausting.

It’s been exhausting since December 2019 when he was diagnosed.

And I’m scared it always will be exhausting.

But we are coming resilient.

We are processing, figuring stuff out and reflecting on decisions that we all made has led us to where we are now.

We are OK.

Xxx

anxiety · Cancer · confidence · Family · Mental health · Osteosarcoma

Not all disabilities are visible…

This is a topic that is hugely on my mind at the moment.

We, as a family, are learning to accept the fact that Ellis is now disabled for the rest of his life.

Despite beating the cancer, the heart failure and the Covid, this is the one we are left with.

To look at, he looks ‘normal’. His hair is back, his teenage attitude is back 😜 but his bones are not.

He is bionic.

I am now a Mum of a child with a disability.

We have never had the time to properly digest it until recently.

We have the blue badge, the DLA, the risk assessments and the hopeful EHCP (fingers crossed) , but we’ve still never seen it.

While we all want Ellis to have his life back, we are coming to terms with the fact that it’s not the same as it was.

He will need extra support his whole life, not just as a child.

His leg length discrepancy is much more noticeable now, with his limp being more prominent. He has to prepare his leg a few minutes before standing each time, because it goes stiff and he can’t move it.

We are always conscious of hills when we go for walks or unsteady ground or where the next bench is.

His friends have been incredible, allowing him to slot right back into their group like nothings happened and I genuinely can’t thank them enough. This has been everything to us since going back to school ❤️

But we need to now start planning going forward for having a child with a life long disability.

A simple holiday takes so much planning.

From travel insurance, to disability friendly hotels. Days out ruling out things he used to love and the constantly having to explain to people that no, he can’t do trampolining or go ape. Actually, there are lots that he can’t do and that’s forever.

Worrying about what could go wrong and carrying out virtual risk assessments in your head every single time we go out.

It’s exhausting.

But not as exhausting as denying anything is wrong and picking up the pieces when it all falls apart.

So we are learning.

Ellis is learning.

And I continue to be in awe of him every single day ❤️❤️❤️

Xxx

Osteosarcoma

Guilt.

My most common feeling as an oncology Mum.

All through this journey I have felt guilt at different points and in different ways.

In the beginning it was guilt over him being sick. Guilt over him crying in pain. Guilt that he was missing out. Guilt that he was having to have this poison pumped into his body to save his life.

To me, it was my fault. It was always my fault.

Every time a temperature spiked, every time his levels weren’t quite right it was somehow my fault.

The guilt never goes away, you just start to ignore it. Thats what I have done anyway. I haven’t processed it. I am just pretending it isn’t there because there is another huge thing that weighs on my mind lately.

My other children.

The siblings of the child with cancer.

The forgotten ones.

The ones us oncology Mums have to leave behind, to say goodbye to over and over again because other things have to come first.

“No I can’t read to you, I am doing his meds.”

“No I can’t take you to the park because I am exhausted from not sleeping in the hospital.”

“No I can’t help you with your homeschooling” because at that point in time, your education wasn’t important. You were learning about life, the garden, being unstructured. But mostly you were safe. And safe is all I cared about.

But now it has come around and bit me in the arse.

My beautiful, intelligent daughter has been given her 6th secondary school choice.

She has always been ‘Exceeding” in all subjects at school, especially maths. She was born with a love for learning. She has wanted to be a GP for as long as I can remember and she has had her path set out in her head. She is driven beyond her years and has achieved 100% on the test paper which deems her suitable for a Grammar School.

But the day came last October and she failed the maths part. Miserably.

I was so sure she would pass that I took my eye off the ball.

She did very little in the way of school work during the whole first lockdown as I was never there. When I was there in body, my mind was always racing with hospitals, chemo and appointment dates.

I failed her. And that fucking sucks.

So now, here I am, trying to convince her that the awful school she has been allocated- the one with the ‘requires improvement’ on last years Ofsted, is the best school for her.

The time in her life where she needs to feel safe the most, she doesn’t.

None of this was her fault, yet she has sacrificed the most because of it.

I have appealed to 3 other schools, which ironically are closer to our house, so it is now a waiting game.

I need to have done enough for her this time round. I need to make things right because I am her Mum and that’s what Mums do.

Right?

Being a good Mum is my thing. I would go without so my children didn’t have to, I would move heaven and earth to make sure they have the best possible start in life, but this time it is out of my hands.

Total strangers are now sitting in a zoom call, deciding my daughters future, based on a few written letters.

I hope I have done enough.

I wish I had done more last year. I wish I had supported her more. I wish cancer never came into our family and caused all of this.

I hate cancer.

I hate having to always fight for something.

I hate the way cancer always takes whatever it wants.

I hate feeling helpless.

And I hate knowing I have let them down.

xxx

Osteosarcoma

Life after cancer

So I’ve wrote a lot about this in my blogs, but each time I do, I feel it never does it justice.

I feel like no matter how much you describe what it’s like to non-oncology families, you can never quite get it right.

So I will try again.

Imagine a skydive. But without choice. You’re a forced to do it.

So you’ve been signed up. You know in a million years you would never do it voluntarily and actually it’s probably everyone’s worst nightmare. But you don’t have a choice.

Your name is down and the days are rolling.

You research silly articles of how someone died because their parachute failed to open. God. It gives you shivers.

But of course, there is always that small niggle in the back of your mind saying “that won’t happen to me”.

You research statistics and justify a reason for feeling scared. Or indeed, use it to contain your fears because actually the odds are for you.

One day you will feel brave.

One day you won’t.

One day you’ll wake up thinking “what have I got myself into”

From the minute you are told your name is on the list is when it starts.

On the day you are petrified. You can’t eat. You can’t sleep. You worry about every possible thing that could go wrong.

When you’re going up in the plane you go numb. You’re on autopilot. You know your body is there, but your mind never is. You feel like you’re floating.

Then comes the jump.

The leap of faith.

Except…. it’s not really a jump at all.

You are strapped to a stranger, your whole life is in their hands.

You are pushed.

And the only control you have is to buckle up, do as you are told and hope you make it to the bottom.

Adrenaline gushes through your whole body, making you feel so sick.

You don’t dare let yourself feel proud, because it’s still not over.

Then it is.

Just like that.

It’s all over.

You are greeted by people cheering and celebrating. Congratulating you on it being over and how brave you were.

After all, they couldn’t do it.

But you don’t feel happy.

You still feel sick to the stomach.

You are on the ground, yes. But it’s not the same as before.

You somehow have to navigate through to the changing room to get changed.

You get your certificate and pose for a fake photo to say ‘well done’ and you get in the car and go home.

All the way home you are trying to regulate your stomach. Trying to process what on earth has just happened.

This is where it differs though.

For a skydive, you make it home.

You are safe.

Butt for oncology families, you are forever stuck in that home journey.

Never knowing when you will make it, that’s if you will.

And that’s where I am.

I’m driving.

I’m processing.

I have a constant knot in my stomach that tells me things aren’t OK.

No matter how many times we are told ‘he’s in remission’ or ‘X-ray is clear’ to me I can’t celebrate it.

To me, it just means it’s back at the start of the 8 week wait until the next one.

See the thing is, hair grows back.

Life goes on.

People forget.

But I would do anything to forget. To move on.

I’m scared.

I’m stuck.

And I don’t know how to get myself home.

Xxx

Osteosarcoma

The only cure for grief is to grieve

It’s coming up to that time of year again for me and my family. In 2019, I lost both of my grandads within 1 month of each other. 6 months before I had never needed them more.

Now, 2 years on, it feels like nothing has changed while at the same time feeling like everything is different.

I am aware that makes no sense.

I can have days where I think I’ll just pop over to see Grandad Joe or go to lunch with Grandad Mike, before realising I can’t.

Part of grieving is talking. Or writing in this case. So I’m going to write.

Grandad Mike was the loudest, funniest man you would ever meet. He was Broadstairs beach personified. Sitting at the beach hut in his red speedos, giving pound coins to all of the great grandchildren so they can go on the roundabout or buy an ice cream. Sitting there in the summer evenings (thankfully a bit more covered up 😝) watching the fireworks, while making more noise than all the kids put together. Fireworks are not the same now without the over the top ooos and ahhhs coming from him. The random bags of apples or bunches of dahlias left on our doorsteps, with everyone knowing they were from him. Fruit picking in his allotments all kinds of fruit that we knew we wouldn’t eat, but it was fun nevertheless. Taking us out for lunch most weeks to his favourite Toby Carvery just so he can have his lemon ice cream sundae. Telling everyone who came near us that we were his family and “aren’t they beautiful”. He always said how lucky he was. Truth is, it was us who was lucky.

Grandad Joe. Humble, proud but quietly fierce. He stood tall and always made me feel safe. He was everything I missed out on in a Dad. Cheating at board games and denying it- even getting the kids in on his plan! Monday’s was my day to take Iris to see him and my Nan. Iris was the one out of all my children that he saw the most. They were a pair! She made him belly laugh with her funny ways and odd nature. They would sit on his chair looking through his magnifying glass just seeing what they could see. She made the old Grandad come out. The Grandad that he was to us when we were little. The naughty, rebellious Grandad who would sneak cake when my Nan wasn’t looking because she would tell him off. The journeys in his car to random farms, listening and singing along to the carpenters . Oh and he was proud. So proud. He was proud of his family. He never judged. The mistakes I have made in my life, he just listened. “Grandad….. I’m pregnant” was something I remember the most. Despite circumstances, he was pleased. He wanted me to be happy.

I miss them both. Not any less than 2 years ago, not any more, just the same.

The emptiness is still there but you just learn you have to fill it.

I struggle with not having anywhere to go for them both. They were both cremated at the same crematorium, so that’s the only place I kind of have that’s ‘theirs’.

But I know they would both be proud of me and the kids. I know they would be so so proud of Ellis.

In my darkest days, I’ve felt them there.

Sitting alone in the dark on T11 North ward, wondering how I was going to cope with what lie ahead, I knew.

I knew I would be OK because they were both looking out for us.

So yes I am still grieving 2 years on, but that’s OK. Grieving isn’t a race. Its your journey to make in your own pace.

Do it your way, because that’s OK.

Xxx

Osteosarcoma

Let’s talk mental health

So things are pretty good here.

Ellis is doing really well. The girls are the incredible sassy little ladies they always are and I am in a really good place.

So things should be all hunky dory, right?

Not entirely.

Just because you’ve had it harder than you ever thought possible, doesn’t mean it won’t ever be hard again.

Mental health is something that definitely shouldn’t be hidden away because of shame or because you think you don’t have the right to feel that way.

I struggle with my mental health a lot.

Does it mean that I’m failing? No.

Does it mean I can’t cope? Not at all.

Does it mean I’m a bad Mum? Absolutely definitely not.

I’m human.

I’ll use social media as an example.

The ‘perfect’ pictures, the days out all smiling and looking our best. But the reality is 23 before and after takes, all unfiltered where one kid has sneezed snot everywhere, I have 17 chins on show and we look as if we hate each other.

Why do we do it? Why do we feel the need to only ever show ourselves at our best. Who are we doing it for?

Ourselves?

Our friends?

That one crazy woman who you know knows you can’t stand her, but she still looks at your pictures anyway… 😜

It’s all fake.

It’s a perception of our lives that we are almost conditioned into sharing.

The ‘best’ versions of ourselves.

But these very posts are the posts that make us feel worse.

The competition of who is parenting the best, the rivalry between how many words our toddlers can say and the gloating when little Johnny ate 7 of his 5 a day while Emma did her kettle bells….

I mean…

Is this the world we are bringing our kids into?

It makes me sad.

I for one, need to start showing my kids that being me is actually OK. Being me is more than OK.

Since meeting Matt (a hot PE teacher who swept me off my feet after giving my son more than anyone else had even attempted to do) we’ve spoke a lot about this and about how for the first time ever, I feel OK to be me.

It’s OK to admit your feeling sad for absolutely no reason at all. It’s OK to go places and see it through your own eyes, rather than a phone screen because you’re too busy recording. It’s OK to be over-the-too happy and borderline annoying for no apparent reason (or even milking period pains to get chocolate 😝).

It’s OK to admit that although you wouldn’t change a single thing about your life, it’s still hard.

The world needs to stop being black and white. It needs to stop being a place where you feel like you should have to feel a certain way because everyone assumes you should.

Life is my story.

I am the author.

It’s time I stop letting other people hold my pen.

Xxx

Osteosarcoma

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

Osteosarcoma

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 💪🏻

Osteosarcoma

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