Cancer wrote a chapter in your life, not your whole story. It’s now your turn to hold the pen…

So today marks the first week of GCSEs for Ellis- a huge milestone.

I’m sat here feeling so many emotions.

We made it.

He made it.

One exam per subject to test his whole school life. The same school life that has been massively disrupted by cancer.

I had someone tell me recently that Ellis has only missed out the same as everyone else due to everyone being in lockdown. The same person told me that Ellis’ anxiety towards his exams were exactly the same as all students who feel ‘discombobulated’ as it’s normal to feel so.

This person is a teacher.

People still don’t get it.

The fact that Ellis is even sitting these exams in the first place is absolutely huge and an achievement in itself.

A lovely friend of mine wrote a beautiful piece about the choice of words when discussing someone with cancer. It was to highlight that words like ‘he fought and won’ or ‘he was brave enough to survive’ are so inaccurate and insulting to those who are no longer here.

No one fought harder than anyone. No one was braver than anyone.

And that’s the crux of it.

Ellis isn’t here sitting his exams because he was resilient (urgh- hate that word) enough to fight his way through.

He isn’t here sitting his exam’s because he was so brave.

He is sitting them because, for some reason the gruelling treatment worked for him. Luckily.

He is sitting them after going through 3 years of pure hell where no matter what you do, you don’t have a say in the outcome.

This is the first time in his life since cancer, that putting effort in DOES make a difference.

He CAN work harder to produce a better outcome.

And that is the struggle.

Leaning on medical science for the last 3 years, on nurses, on doctors- trusting that the poison that have pumped through your veins is enough to kill it.

Now it’s all down to him.

So Ellis, I know you read my blogs.

You give it everything you’ve got and get the grades you deserve because you’ve worked so bloody hard to get them.

I’m beyond proud of you.

You’ve got this 💛

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Thank you 2022. At last, the future is exciting

So it’s been nearly 10 months since I last wrote a blog, which I think shows my life actually going OK!

Writing blogs used to be my escape. My therapy almost. My way of understanding cancer and the impact it was having on my little family.

It healed me.

Cheesy af but it’s true.

Dare I say it…. But life’s pretty bloody beautiful.

Ellis is in year 11 and just applied for sixth form next year to study an IB. The boy who didn’t know what the future held for him 3 years ago.

Beth’s tumour was benign, luckily. And although we’ve been battling since March for the correct care (well any care at all for that matter) she’s finally in a good place.

Lily’s a feisty female boss who will go far in life. She’s smashing her grades at school and settling back into being a normal teenager. Strops and all. She is the most empathetic and kind young woman. I am so proud.

Iris is Iris. She is scared of life. She has more phobias than I can count, a diagnosis of ASD helps us to understand her a little better, but it’s still tough to watch. She is carrying trauma from what happened to Ellis, but it cost me £250 and a private psychological report to find that out. I could have told everyone for free but 🤷🏼‍♀️ She fights demons everyday that you and I can never even try to understand, but she never lets it stop her. She’s determined and also fierce and I am so proud of her.

Then there is Matt. A new addition to my blogs. Not new to us though. He saved my little family when we were at our lowest. He is selfless, caring and brings a light into our lives that we now couldn’t live without. We all laugh more than we ever have and that’s down to him. We are very lucky.

Lastly, me.

I’m good. Like really good. I feel like I have my light back.

Work is amazing. I am lucky enough to go to work every single day with my best friends. We pick each other up when we are down, we moan together, laugh together and make a difference together. I couldn’t be more proud.

Way back at the beginning of this year, I attended The Bone Cancer Trust South Conference. I had never been to a conference and didn’t know what to expect, but I was still healing and growing from the trauma of 2020 that I thought it wouldn’t hurt, right?

From the second we walked into the room, I felt at ease. For the first time since Ellis’ diagnosis I felt understood and like I belonged. It was surreal. A whole room of people of cared and were saying things that I thought only I felt. It was powerful.

One brave young girl got up and shared her story about life after cancer and I just cried. She was brave, determined and confident. She told her story with pride and she smiled the whole way through. Cancer took her leg, but she was living her life to its fullest, never grumbling.

After the conference finished, we went to our room and just sat. Taking it all in, processing what had happened and taking a moment to be silent. It was moving.

I emailed the team at Bone Cancer Trust there and then and asked if I could be a guest speaker at the next one at the end of the year as I knew I just had to tell my story. I wanted other people to feel how I felt that day. I wanted other Mum’s to listen to my account of what happened and think ‘that’s me’. I wanted to stop families feeling alone and spread the feeling of unity that I had now found.

Every September I do something raise money and awareness for cancer. For 2 years in a row I had marked the occasion by jumping out of a plane and doing a 25km trek. So this year, with Matt for company, we completed another 25km trek through the Chiltern hills. It was way harder than I imagined, but we did it and raised £300 this time for The Bone Cancer Trust. In January we are walking another trek… this time marathon length….!

Then October came and so did the conference. I was the most nervous I had ever been. I would have much preferred to jump out of a plane again! But I knew I had to do it, to tell my side.

And I did.

I got up there, told ‘A Mum’s Story’ and didn’t cry. I did look up at one point and saw 400 eyes looking at me…. So I quickly looked back down again and carried on.

I had so many lovely people- mainly parents- come up to me afterwards to say how much they resonated with every word I said. One man said it was like he wrote it word for word. It was humbling.

While enjoying (downing) a well earned glass of wine, a man tapped me on the shoulder, gave me his business card and asked me to email him. I still couldn’t quite talk so I think I just mumbled something at him. Great impression!

Turns out that the man is Head of Trustees at a huge charity called Children With Cancer UK. They had just pledged a million pounds to BCRT which was amazing, but I was unsure as to why he wanted to hear from little old me.

I emailed later that evening (after lots more well earned wine) and introduced myself. He replied the next morning and said he is excited to listen to my ideas as they want to change the way things are for siblings and families of those affected by childhood cancer.

Easy, I thought. Something I am hugely passionate about and I am determined to make the right noises in the right places to get it.

Fast forward a few weeks and I had an email inviting me and 8 friends to the annual Children With Cancer UK ball in Park Lane, London…..A huge deal!! Champagne, ball gowns, celebrities….!!!! Of course the answer was yes! I invited people who are in my life that are also affected by childhood cancer. I wanted them to feel how I was feeling- after all, we are all in the same broken, sinking boat. If anyone was deserving of it, it was them. I also invited a Professor of Bone and Cancer Biology from The Bone Cancer Trust, who has done so much for my family. She is now a good friend of both of ours ❤️

The ball was absolutely surreal. I still can’t put it into words just how amazing it was. there people, the food, the champagne (we had lots of champagne!!!) I feel for the first time in nearly 3 years, lucky.

Maybe things were changing.

Maybe things were becoming positive BECAUSE of the cancer, not despite it. Food for thought. I was were I was meant to be.

I had the pleasure of catching up with Gaby Roslin, who has actually become a friend. I met the guy who I emailed me and his beautiful wife, I followed Patrick Truman up the stairs, got bumped into by Tony Hadley and had Lulu sing directly in our faces…! It still feels like a bizarre dream.

Fast forward again to December and I have an email from Jo Elvin, who is the new CEO for Children With Cancer UK. The very same Jo Elvin who was editor for Sugar magazine when I was growing up, Glamour magazine and Mail on Sunday amongst others.

Who do I actually think I am?! Little old me. The moany, sweary Mum from a seaside town in Kent is being asked to speak to these people about my ideas?! Argh!

Then in December while on the way to a Stanmore appointment with Ellis to lengthen his leg again, because that boy still hasn’t stopped growing, the email guy (his name is David by the way- much better than the Emil guy!) text me to say another man from Children With Cancer UK is really interested in meeting with me and can I give him a call.

So, in January (next week) I have two separate meetings one with Amar and one with Jo Elvin. To talk though my ideas and explain, first hand, the negative impact childhood cancer has had on my children.

My ideas are simple.

From funding for therapies, information packs for schools to childhood cancer being portrayed in soaps to raise awareness….it’s all in my plans and I won’t stop until I make a change. I will continue to talk, to share and to normalise the things we have all been feeling for the last 3 years.

I have started my second book and almost finished…!

So for the first time in 3 years, I am going into the new year excited and positive.

New Year’s Eve 2019- Ellis was just diagnosed and chemo was to start in less than a week. I was terrified of what 2020 had in store for my little family.

New Years Eve 2020- My marriage had just ended. Ellis was only just into remission and I wouldn’t dare let myself think things might be OK.

New Years Eve 2021- Beth was being referred to UCLH (same hospital as Ellis) for a tumour in her thyroid. With so much uncertainty- it felt like Groundhog Day. January would be just about fighting for my children again.

Now, New Years Eve 2022 is exciting. It’s not overshadowed. It’s not left me feeling that oh too familiar feeling of dread.

I don’t have to fight.

This time, I am choosing to. For other people’s children.

I will make a difference. I’ll make it so that no siblings have to go through what my children did with no support.

2023, I am so ready for you 💪🏻

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

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

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

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….

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

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

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

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