Osteosarcoma

Running on empty

Where do I begin.

At the start? Of Beth’s journey? Ellis’? Or mine?

It’s all just one big blur at the moment.

I would just very much like it all to pause and be still. Just for a moment. Just enough for me to catch my breath and collect my thoughts. Just enough for me to fall asleep without having to take meds and to not wake until morning, blissfully enjoying the peace.

I’m tired of being strong.

I’m tired of being OK.

Because I’m not.

I try. God I try so damn hard. I pretend I’m OK because it’s easier than admitting I’m not.

I just want it all to stop.

The hospitals, the appointments, the check ups, the logistical nightmares of being in 3 different places at once, the financial strain.

I just need a break.

I finally got to the point last week that I knew I needed some help. I rung up my GP to ask for anti depressants along side my counselling. The same GP who misdiagnosed both my children.

It took 3 days before I heard anything and when I finally did, the reception said she could fit me in for a ‘chat’ next Thursday.

Over a week away.

👍🏻

Last week was Beth’s operation. She was simply amazing and took it all in her stride. I was so proud, as always.

I however, got no sleep. I laid there all night listening to the machines, the trolleys, the kids crying, the air con…. It was like I was back in my old nightmare again. The nightmare that I have tried so hard for 2 years to forget.

I’m struggling.

I’m not coping.

But I don’t know what to do now.

I feel like I’m on the verge of crying every minute of everyday at the moment.

Everything that’s kept me going for the last two years no longer works. I’m just tired.

It’s just not fair. None of it.

Not fair on me. Not fair on Matt for this crazy world that he has signed up to.

But mostly, it’s not fair on my beautiful babies.

I’m so sick of them feeling sad and having their world being ripped from under them. In our house, cancer is just like a cold. It’s in every conversation we have, it dictates our holidays, our days out, any future plans we have, school.

It’s just always there.

Xxx

Osteosarcoma

Fed up of having to choose

Christmas Eve 2019 I was forced to choose between seeing my babies getting excited, putting mince pies out for Santa or going with Ellis to his biopsy.

I had to quickly learn to separate ‘want’ from ‘need’ and do what was needed.

Feelings didn’t come into it.

It was tough.

Now I am facing the same situation.

A last minute appointment at UCLH London on my birthday for Beth, who’s appointment was brought forward because the surgeon wants to talk about the next steps.

In my house, birthday mornings are the best part. The part where all the children, no matter how big, get up early and climb into bed to watch open presents. It’s our little tradition that’s been going for nearly 17 years.

Until this year.

The 6 year old who hates change and loves giving, will not be waking up with me in my birthday.

She won’t see me until I’m back home.

I’m trying frantically to put things in place to make sure she will be ok. To make sure she won’t panic because things are different and won’t feel bad for not giving me a birthday hug.

I’m so sick of cancer coming first.

I’m sick of it dictating my life and how I parent.

I want to spend my birthday having tired snuggles in bed, with poorly made tea where they have tried and home made cards.

Not sitting on a train at 6.30am drinking coffee from a travel mug.

I’m so sick of it all.

It’s just not fair.

I speak to my counsellor regularly about how I feel sorry for myself and my family lately, but I always end it with ‘I am having a pity party for one, but I know I can’t unpack here!’

I know what to say. I even know how to feel.

But putting it into practice is bloody hard.

I just feel so so fed up of it all.

It’s been just over 2 years of constant hospital trips, days off work, appointments, tests…. I don’t want to do it anymore.

But that’s the thing about cancer isn’t it.

It doesn’t let you chose. It’s in control.

Even when you feel like your little family has had more than it’s fair share and you dare to think ‘we’re safe’ it comes crashing and banging it’s way to get your attention.

I don’t want any more appointments.

I don’t want any more tests.

I don’t want any more ridiculously expensive train journeys and horrible travel mug coffee.

I just want to be normal.

For it to be quiet.

Just for a bit.

And I don’t feel like I’m asking a lot.

Xxx

Osteosarcoma

I hope you enjoyed your party, Boris

My little family is still suffering from the trauma of Ellis’ cancer, well my cancer too. Except mine was different. Life was normal when I was ill, so my kids could be distracted.

When Ellis was ill there was no distracting. There was no family support or visits from hospital. There was no one there for me to hold my hand on the days I felt like I wanted to give up.

All because of covid.

The same covid that you pretend didn’t exist while having your Christmas parties.

While I and other oncology families, we’re forced to try to celebrate a makeshift Christmas with no one around to support us when we needed it the most.

I have lost count of the number of hospital appointments I have had to take Ellis to on my own and now beth.

No moral support for me. No one else to listen for information and share with after. Just me.

It’s always been just me since the beginning.

Siblings who felt so far removed from the cancer world because they weren’t allowed to visit, while simultaneously thrown into said world and forced to carry on alone because of shielding.

There were no happy family days out during chemo breaks.

Boris stopped that.

There were no dinners and drinks with the girls to help this tired mama empty some of her metaphoric bucket in order to cope with whatever the next day brings.

Boris stopped that too.

There were no therapeutic camps for siblings or visits from amazing charities for them.

Yes. Boris stopped that too.

All the while he was celebrating Christmas with cheese and wine, with no second thought for families like ours.

Even now, nearly 2 years after the pandemic hit, I’m still going it alone.

Whilst most of the world has reopened, hospitals haven’t. Not properly.

It is still only one person per child at appointments. One person per child at operations and dreaded biopsies.

I’m still alone.

Now with my daughter being on a 2 week cancer pathway referral, I had hoped it would be different. But no.

Boris has still stopped that.

So here I am, Groundhog Day, back to March 2020 when I was faced with pulling up my big girl pants and marching on.

But this time I am also dealing with the aftermath of one cancer journey.

I have one child who is being extremely difficult and refusing to go to lessons. Lying incessantly about anything and everything and who is genuinely experiencing some kind of trauma.

One who is refusing to go to school because he is so far behind, because cancer took that too. Something that I fought so hard for it not to take. But it took it anyway.

One who is left in limbo about her own possible cancer diagnosis. Left to just ‘wait for an appointment’ 3-4 weeks into a urgent 2 week cancer referral appointment. Standard.

Then we have the little one. The one who’s long awaited ASD assessment was cancelled Monday due to staff sickness. The one who is a ball of anxiety around everything. Trauma based? Who knows. But it’s fucking hard work.

Do people have a limit? I’m genuinely curious because I feel like we don’t. Or I don’t certainly.

If I had a limit it would have come and gone a long time ago. Now I’m running on empty.

But we know more than most, things have to carry on.

If I stop, it all stops.

No pressure.

Xxx

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