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 💪🏻

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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

My time to give something back.

So this week I have been a bit quiet in the world of social media. I’m still alive, I’m not in an alcohol induced coma, don’t worry. I’ve been a real life grown up this week.

I have been concentrating and working hard on something that means a lot to me.

When Ellis was discharged from intensive care at Great Ormond Street and back to our local hospital, we were picked up by two lovely men from St John Ambulance, because Covid-19 meant that the NHS has been stretched to its limit. The two men were amazing. They put us both at ease, one was even commenting on how cool Ellis’ scar is and making him laugh. They were genuinely nice people.

These men were volunteers. They did what they did because they wanted to. That blew me away.

In a worldwide pandemic, where most peoples first thought is to run and hide, these men had voluntarily put themselves on the front line.

Amazing.

It made me think about how unique my situation was. I had been in hospitals during the whole pandemic, I know the ins and outs of the hospitals Covid-19 procedures and I’ve lived and breathed a Covid-19 positive environment.

Just like Cancer, Covid-19 doesn’t scare me.

I could help.

With that along with my vastly growing skill set of mental health nursing and counselling I genuinely think it would be something I could use to give back.

So last month I signed up to enquire about volunteering for them.

And today, after a month of interviews, inductions and training courses I’ve done it. I have qualified as a SJA First Aider ❤️

Without Covid-19 I would be getting ready to go to events to provide first aid with an amazing team, but they have all stopped. SJA volunteers are being called on in hospitals, care homes, blood donation facilities…. anywhere help is needed. This is where I will be going.

I have had the most surreal time getting to this point. I have made some amazing new friends who have kept me sane during some surreal moments 😂 and reassured me on days like today where I have been terrified of failing.

I have ordered my uniform, ready for me to get stuck in.

2020 hasn’t all been shit.

It’s been the year where I lost everything, but gained so much more.

A year where possibly, I might have got a bit carried away with filling up my spare time…. working full time, completing my counselling course and now being a SJA First Aider.

But hey, it wouldn’t be my life if it wasn’t a tad bit excessive and out of the ordinary 😂

I’m happy. Happier than I’ve been in 9 long months. I’ve used the dark days and turned them into something amazing.

I am proud of myself and I’m not ashamed to say it.

Xxx

We’ve done it!!!

And just like that after nearly 9 months of operations, chemo, hospital stays and much much more…. it’s over.

Ellis has finished his chemotherapy for Osteosarcoma.

I didn’t cry yesterday, I thought I would. But I was so preoccupied with making sure it all went smoothly that it didn’t really sink in. I will have a moment, I’m sure.

But, it’s finally over. We did it.

We looked cancer right in the eye and kicked it’s arse. AGAIN!!!!

Back in December when he was diagnosed, I never thought this day would come. I was terrified beyond words that he wouldn’t make it. He wouldn’t be the 55% to beat it.

The nights I laid awake terrified of what lie ahead, desperately going to my GP to ask for something to help me from spiralling. My first ever counselling session because I knew in order for the kids to be ok, I needed to be ok. The times I shut out friends and family because I was angry that they were carrying on with life, I was so jealous of that. My life was falling apart underneath my feet, yet others were allowed to be ok. The fears of my new job being ripped from underneath me again, as with everything in the devestating wake of cancer.

I have felt so angry during this. Why my son? Why my family again. Why the boy who never complains, who just gets on with it. Why my girls, who have not only had to be told their Mum had cancer, but their brother too.

I have felt guilty. This is the one that gets me the most. It’s my job to protect him, to protect them all. And I haven’t. I have felt guilty when he has broken down and cried. I have felt guilty when Iris has cried because she didn’t want me to leave her yet again. I have felt guilty that I haven’t had time to spend with each of them.

I have been in denial a lot of the time. Like if I can pretend it’s not happening, then it won’t be real. Even during Scans and tests at the beginning, I was telling myself it would be nothing and I was overreacting.

Cancer has tried to destroy us twice now. And twice we have fought back with every single ounce of fight.

As I sit here today, trying to digest all that’s happened I feel an overwhelming sense of pride and gratitude to everyone who has helped us get to where we are today.

To the nurses, physios, play therapists and everyone at UCLH, GOSH and QEQM. For making us feel so safe not only during chemo, but during the pandemic. The enthusiasm for their Jobs shines through and the passion and care they have for each and every child in their care is humbling. I will never be able to thank them enough for what they have done for us.

To my Mum. For being my best friend. She is the first person I called when the doctor phoned me, the first person I tell any new news too. She has soooo many grandchildren, but always manages to make each one feel special. She never judges and will always just listen to my rants and my pointless phone calls just to check in. She knows all the chemo names, all the meds and she knew the treatment plan as well as we did. She did one chemo stay with Ellis pre-Covid, to give me a break and because she wanted to help. The best Mum and Grandma ever.

To Ellis, for being the person who has kept everyone going. Not once has he doubted himself and his ability to fight it. He was up and out of bed the very next day after his operation, walking on day 2, walking up stairs on day 3 and home day 4. He was riding his bike (secretly behind his physios back) on week 9. He is resilient, tough and a real force to be reckoned with. He has inspired me to become better, to become less scared of things. I am in awe of him.

To Beth, for being so understanding. Not seeing her has been so tough. But understanding that we had to shield for Ellis to keep him safe helped me when I felt the worst. She has been the best big sister to Ellis, Lily and Iris and I am super proud of the beautiful, thoughtful woman she is becoming.

To Iris, for using this time to learn. She has struggled the most during this past year. She has learnt that she is resilient and she has been OK even when she was scared. She has learnt all about hospitals and what it takes to look after someone. She is empathetic and wonderfully inquisitive.

To Lily, for being Lily. She just gets on with things, takes things in her stride. She is not afraid to ask questions and will go out of her way to make me feel appreciated. She is always learning, always creating and always challenging herself.

To Glenn, for being my team. Scans, appointments, dates, travels… we’ve done it together. For looking after the girls all those times I couldn’t. For consoling Iris when she wanted me, for sitting with Lily on those nights when I wasn’t there and she couldn’t sleep because she was worried. For saving the day over and over again when transport let us down and when Covid meant you became our taxi, driving to and from London twice a week, unable to get out of the car at the other end.

To Gavin, for being the best co-parent and friend. Most families would give anything to have there relationship we all have. From the boys only fishing with you, Ellis and Glenn to spending Christmas Eve with me in a cold, dark hospital miles away from home making sure I was OK. For never making things awkward and for always putting the kids first. We’ve done it together and for that I will never be able to thank him enough. We have the luckiest kids in the whole world.

To my sisters, Hannah, Vicki and Sophie. For being there no matter what. For keeping Ellis going with the sweets, the homemade lasagne and at the beginning before Covid, sitting with him for me waiting for the nurse. For going out of their way to make me know I wasn’t alone.

To my friends. Oh my friends. They are all fowl mouthed, wine drinking, mums who have kept me sane! From the bottles of wine, to the tea, the cream eggs, the presents, the cards… but mostly the texts. The ones that simply say “thinking of you”. 2020 has given me my very own army. I love it. Thank you.

To the ladies I have met during Ellis treatment, Victoria and Hannah. You are both incredible. We have shared our highs, our lows, our frustration and every single milestone. You have kept me going with conversations that only other cancer Mums will understand. You are the strongest women I have ever met and this shines through in Dom and Phoebe. Just because we have reached the end, doesn’t mean I’m going anywhere. I am so looking forward to seeing both of them ring the bell when it is their turn. Friends for life.

To everyone else. Thank you. Messages from people I used to go to school with who I haven’t spoke to in years, new colleagues who have quickly become friends, you have all helped too. We have felt so supported and so loved. We really are so lucky. They say it takes a small village to raise a child and this has never been more true.

I am ready to get the end of treatment tests out of the way and close this chapter once and for all. I am ready to move forward. I will forever carry things I have learnt during this time, qualities in myself that I have carved and new found ways of making sure my wellbeing and mental health is the best it can possibly be. Life is good. It’s actually more than good. Life is just beginning and I am excited to see what I will achieve.

Whatever life throws at us next (and I’m sure it will) we will be ok. Because in the end, we always are.

Xxx

I didn’t choose this year but I choose how to react to it.

“You’ve changed”

Something I have been told lately by someone close to me.

Well of course I have, wouldn’t anyone?

Having faced my worst fears as a parent head on and still coming out the other side is pretty life changing. From that dark day in December when Ellis was first diagnosed to now- nearly at the end of his treatment has provided me with a huge shift in mentality.

Seeing what I have seen, witnessing my boy so close to death right in front of my nose will have a lasting impact forever. The way I process it is, if the worst had happened, if he had died that day in PICU, right at that moment I couldn’t have been anymore scared. I had reached my limit.

This was my 10 moment. The top of my scale.

When you have a life changing illness or condition, you get used to rating your fears and pain on the scale of 1-10. For questionnaires, for yourself, for doctors. Even in my darkest days of my treatment, I never gave a score of higher than a 9. The day I scored 9, was the day I heard the word “You have cancer”. I didn’t give it that score because I was scared for me, I gave it that score because I was scared for my babies. I was terrified I would die and they would grow up without me. I wasn’t done teaching them about the world, shaping them into resilient little people or telling them I loved them. I wasn’t ready. All that pain and I still only scored it a 9.

I was saving my 10, hoping I would never have to use it. But that day, I did. I didn’t realise until that day just how different 10 was from 9. It was a million miles away.

So from here, it has to get better. I have faced my 10 and I am still here. I am still me, just with a different outlook on life. I am a work in progress, evolving and learning. And I love it.

It has got me thinking about blame and responsibility. Two very different things, but too often treated the same.

The blame for this year lied with Ellis’ cancer. But it is not the cancer’s responsibility to determine how I react to it and how I move forward. That responsibility lies with me.

For the past month or so I have been putting lots of effort into making sure I am mentally balanced. I have been re reading an old favourite book of mine called ‘The Subtle Art of Not Giving a F**k’ It was recommended to me a few years ago from an amazing friend who always has my back. 2-3am when I cant sleep, I know I can always talk to him. We studied Mental Health together 7 years ago, so he knew me just before my own diagnosis. There are not many people who I can truly say are my friend for life, but he is. And I am eternally grateful to him for being a friend and for understanding me on a level not many people do.

In the book, the author, Mark Manson, talk a lot about how life is easier when you actually learn not to give a f**k. It’s so true. Not necessarily about peoples opinion of you, but how you view the world, why you do what you do and generally makes you question yourself. I love that. With me, it has taught me that I am in control of my life, the situation isn’t. Things happen, sometimes good, sometimes bad, but ultimately I am in charge of how I chose to feel.

And this year, I choose happy. Despite everything that has happened, despite the fears of what still may happen, I still chose happy.

Does this mean I don’t care? No.

Does this mean I’m not scared? Absolutely not. I still have days where I cry because I am scared or days I can’t eat. It is still very real and current for me.

I am just not letting that define my life. They are parts of my life that unfortunately now will always be there. Every new pain, every new lump and bump with me, Ellis or any of the kids will always be a challenge for me, but I recognise that and accept it for what it is. What is isn’t is something that stops me from achieving my goals, from reaching for the stars and from fulfilling my dreams.

Life the way I see it, is like a game of poker.

You can be dealt the worst hand in the game, but still go on to win. You can beat the best of hands purely based on your attitude, your choice and how much you are willing to risk.

It’s how you play the game. That’s the secret.

I can’t change what has happened this year, I can only learn from it. Out of something so horrendously difficult, I have gained a whole plethora of influential experiences, which I am using for personal growth.

So, yes. I have changed.

I am choosing to be happy.

I am choosing to write my own story.

Xxx

Is it bedtime yet?

A very moany blog this morning and I’m not even sorry.

Most people we meet in the wards are so lovely, some I consider friends for life. But some- I can’t even think of any polite words to describe them as my brain doesn’t function on an hours sleep.

Some people are just so fucking rude.

There is a lady near us who for the past 2 nights we have been here has been literally shouting on her phone while its on loud speaker until 1-2am. She plays music on her phone so loud too in between phone calls. She is so rude to the poor staff about everything, I even heard her shouting at the lady who brings the dinner because it was not to her taste.

It is just us and another little girl and her Dad in our bay as due to Covid, they aren’t allowed to fill all beds, so we have a double bay to ourselves. First thing I thought when I was told this was ‘Oh this is going to be nice and quiet….’

The first night we all kind of put up with the noise. The glance across the bay the next morning to the Dad who clearly hadn’t slept either was evident at just how much this one lady was disrupting the ward. A chemo ward I like to add, where children need their sleep and peace and quiet. If they are not asleep, they are feeling rubbish and sick so still need to rest.

Last night I lost my shit. I don’t care for me, but when my son is feeling sick and tired because he is having chemotherapy and you are making him feel worse and stopping him from sleeping… big mistake lady.

I walked into her bay and told her to shut the fuck up and have some respect for the children trying to sleep. I was so angry at her, probably more than I should have been but as everyone knows I am bordering on the edge of insanity as it is at the moment. Plus me in pjs braless, after no sleep is not a pretty sight. I’m not sorry.

She pretended she couldn’t speak English and gestured that she didn’t understand.

She understood because she stopped.

Until 7am this morning when she started again.

Like I don’t even like anyone enough to phone them that much, she is obviously a nice person because someone must really like her to listen to that for hours on end.

The cleaners then decided to joint her shortly after shouting and laughing at the top of their lungs followed by a little boy running in and out of our ward thinking it was the best game ever. He now has a remote control car. Oh the joy.

It’s now nearly 9am, Ellis and the other little girl are fast asleep thank god.

Me and the Dad opposite are in a constant zombie state and have started finding things hilarious. Definitely due to insanity.

I feel so sick, so tired and not sure whether to laugh or cry this week.

I’m so ready for this all to be over now. I don’t even think wine will cut it today, I need a holiday. Or Phillip Schofield to whisk me away in a GTR and love me unconditionally and possibly stroke my head.

There is only so much shit someone can take, right?

Xxx

I have anxiety, it doesn’t have me

As with all my blogs, this one is very honest and raw.

I suffer with Anxiety and I have done for as long as I can remember.

For me, anxiety is like being followed by a person. It knows all of your insecurities and uses them against you. Sometimes that person trails behind, but he’s always there, lurking in the shadows. Sometimes it gets to the point where he is all I can see. He’s huge. He towers above me pointing down telling me I’m not good enough, that I’m ugly and that everyone thinks I’m stupid.

My anxiety has stopped me from doing so much in the past, from job interviews to friendships and even trips out with my children.

Lots of my anxiety stems from my ‘Dad’ and his inability to acknowledge my existence. Years of not feeling good enough, years of being told I was stupid and years of desperately seeking his approval. Maybe that’s why my anxiety is personified. Maybe he is the person I fear the most, he is the person who wants me to fail. He isn’t even around anymore and he isn’t part of mine and my children’s life, but this anxiety still follows me around.

I spent a long time wishing it would go away, wishing it would leave me alone so I could carry on with my life. But that’s not how life works is it. Not for me at least.

I fight. I have to.

Over the years I have learnt that actually, its ok to not be ok. It’s ok to admit you are struggling and it’s ok to admit that although on the outside looking in, I seem like I’ve got my shit together. But I haven’t, not really.

I take tablets to help me sleep and to try to reduce my anxiety. I don’t want to be held back anymore by something that my mind is creating, but just because I created it, doesn’t mean I know how to stop it.

I tell my children every single day that they are amazing, they can do anything they want as long as they work hard. From the minute I became a parent I vowed that I would be nothing like him. I would fill my children with confidence, empathy and resilience.

I broke the cycle and it feels incredible.

My children know their worth and will stand up for what is right. They are confident, yet humble. I haven’t wrapped them up in cotton wool and protected them from the world, I have given them the right tools to go and explore the world head on, in whichever way they want.

Above everything, they know they are loved. So so loved, by lots of people.

As they are getting older it’s amazing to watch them mature into little people with their own personalities, morals and values. They are all so different but equally as amazing.

But as I watch on with awe at them, I feel stabs on envy.

Being that carefree and trusting yourself enough to make decisions for you, must be so liberating.

Some days I have a hold on life pretty well, some days I don’t. But that’s ok.

I have always used the gym as my escape. I’ve recently got back into exercise after a few years off and it feels incredible. For that short time, I am in charge. I am running and he can’t catch up. The first few times he tries, he keeps up the pace. But he doesn’t beat me. The more I push, the stronger I become and the weaker he becomes. I got to a point a few years ago where he didn’t even try anymore. Running helped me control the anxiety and made me stare at it in the face and say catch me if you dare, fucker.

I am aiming for that point again.

I know it will never go away fully, even with counselling and medication, but I can try my absolute hardest to make it feel not welcome.

I am in control.

I am good enough.

It’s taken me 36 years to finally accept that.

Xxx

The end is in sight

It’s now a week since the worst weekend of my life. Things are a little calmer and life’s a little easier.

Ellis is home and is doing really well. He’s spent most of the time back at home eating sweets in his pants playing Xbox. Living the 12 year old dream!

The girls are incredible and it’s been overwhelming being back at home with them. Iris told me she missed my boobies the most- that kid is obsessed. We’ve spent quality time together having living room discos, watching frozen 2 and playing games. My heart is full ❤️

I’ve had lots of messages from the most amazing people in my life during this last week, which was really kept me going. The random “I’m thinking of you” or “You’ve got this” means more than I can ever explain. I have had socially distanced walks with a very good friend of mine, who no matter what, will drop everything to make sure I am ok. I’ve had another amazing friend (don’t tell her I called her amazing, she’s normally a dick head 😜) who has just been incredible. Texting even late into the night when she knew I needed someone. Making me laugh with her dickheadness and keeping me grounded. Those are the kinds of people that I couldn’t do any of this without.

It’s been hard. Harder than I can explain, but we did it. We got through it together. I can now allow myself to see the end. Things can go wrong very quickly, as last week has taught me, but without hope, what do we have?

The first thing Ellis said to me when he was diagnosed has now been the mantra to this enormous wave we’ve been riding. He said, “What’s the point in being scared, it won’t change anything” and he is right. We have all carried that with us since the beginning. Of course this doesn’t mean we haven’t felt scared at all. Of course we have. More scared that I can describe. The kind of fear that echoes though your very soul, destroying everything in its wake. The biggest fear a parent could ever imagine. But we have used Ellis’ words to help us back up, to control the fear. We won.

So the end is now in sight. Up until now I have been scared to fully allow myself to see it. But there it is. 2 more weeks of methotrexate and possibly a day of the dreaded doxorubicin and he is done! 7 months of the most intense roller coaster of feelings, over. And I am allowing myself to fully believe we will get there.

I know myself that life after cancer is tough. A lot of the time and especially for me, it was tougher than life with cancer.

So this time, I’m in control. I am choosing to be prepared for the last fight against this horrible situation. I have supplied Ellis with as much Information as possible around what support is available for him in terms of counselling etc. I can’t make him do it, but I can give him everything he needs to make an informed decision.

For me, I want to give something back. The individuals that we have met have been incredible. The passion in their jobs and the genuine care they have for us a family is inspiring and something that will stay with me forever. It’s reignited my passion for all things medical and helping people in their time of need.

I want to make a difference.

So on Sunday 26th July I have an interview to become a volunteer for St. John’s Ambulance.

I am aware I have 4 children and I work full time. I’ve been called mad, been doubted and tried to be put off the idea.

But I am stubborn and years of self evaluation know has given me the power to trust myself. I am going to grab the opportunity with both hands and give it everything I have.

When the treatment is over, the hospital stays are no more and we are all back to school and work it will be so difficult to adjust to. Being busy and focused on something for this long- for it to all suddenly stop…. that’s when it gets hard. That when your doubt creeps in, your mind starts to wander and fears rear their ugly heads again. I will not let that happen again. Not this time.

I am going to put every single thing that’s happened this past 7 months and use it for the good.

And I will absolutely smash it. Not because I’m arrogant and big headed, but because know I have the skills to really make a difference.

Xxx

The worst day of my life

It’s currently 1.39am and I’ve just got into bed. I am in a parent accommodation next to Great Ormond Street Hospital, where Ellis is laying in intensive care.

I don’t even know where to start. So bear with me.

Ellis was tested positive for Covid-19 on Thursday morning. As well as being in the middle of chemotherapy for Osteosarcoma.

Today his temperature spiked. He was so angry at me, but I knew we had to go to our local hospital. We followed the normal protocol we are given, but making sure I mention 100 times that he has covid.

He arrived to an amazingly safe ward, the nurses were the absolute best. They made us feel at ease straight away.

The first obs showed that Ellis was still 38 but she thought the blood pressure machine was broken. No one can have blood pressure that low.

It was 78/38.

That’s as a low as a baby. Not my huge man child! They checked again…. and again and again. It started to get busier rather quickly from this point. His heart was struggling so it’s a good job we came in when we did.

Before we knew it, he was being whisked away to HDU with all kinds of wires coming out of him. In the space of an hour he had 4 antibiotics pumped into him, 2litres of fluids and an oxygen mask. He had two failed attempts at a cannula, because his veins were just non existent. I genuinely thought he was going to die.

They came in and told us he was going to be blue lighted in an ambulance to Great Ormond Street Intensive Care.

The wait was about 4 hours until they got there and during this time Ellis really started to perk up. He sat up and asked to go to the toilet. The nurses were discussing amongst themselves where to find a wheelchair from for him, because someone with blood pressure that low wouldn’t be able to walk. Meanwhile, Ellis was bowling around the corridor, into the toilet like a boss. No one could believe it.

He then came back and started eating sweets and crisps…. all the while his heart hasn’t improved. The Ellis charm that he is renowned for at UCLH and GOSH was in full swing. The nurses loved him! They even asked him to at least pretend to be ill when the ambulance arrived!

The ambulance came with 2 doctors in. The did. lots of obs on him trying to get a better picture of what was happening. She said his bloods were showing an infection of some kind, a bad one, but they don’t know where it was coming from.

She wanted to do an artery cannula, which is exactly what it sounds like. Ellis hates his wrists being touched or anything on them, so he started to panic. They normally do them under anaesthetic, but because of his BP they said it wasn’t safe. So she injected local around the area and proceeded to single handedly create the single worst moment of my whole entire life.

Ellis was in agony as she routed around trying to find his artery. He was screaming in pain, telling her to stop. His eyes were blood red and he looked terrified. There was blood splurting out everywhere, it was terrifying. She pulled the cannula out and apologised. There was blood on the bed, up his arms and on her visor.

All I had eaten in the last 3 days was a couple of bananas and some porridge. The sight of him absolutely terrified and the sheer volume of the blood took its toll on me. I fainted.

Not there and then, I know too well what it feels like so I recognised the signs of my vision going, my hearing going and feeling so hot I felt like I was in fire. So I walked out.

I left him.

I left him crying, terrified and needing me. What mum does that? When I came round I felt sick with guilt. How could I just leave like that? Why can’t my body work like a normal body just this once. I had to have some water and a fan before I could get back up.

Back in the room, Ellis was in bits by this point and due to covid I was having to sit the other side of the room and just watch. Until this time.

This time was even worse. She was digging around with this huge needle, ignorant to the fact his BP had shot right up, she was shaking and couldn’t breathe.

Not having that. Not my baby.

So I got up and covid went out of the window. I grabbed him, wiped his tears and told her to back the fuck up. He has had enough.

He lay in my arms sobbing in the way that only a toddler would. It was horrendous.

No one hurts my kid.

She sheepishly went out of the room to phone an anaesthetic to come and do it. By this time Ellis was inconsolable. There was no way I was letting her try again. Over my dead body, bitch.

Three professionals all in his room, all trying to persuade him to ‘try one more time’. Not happening. Not with Mamma Bear in your way. He was safe.

Turns out they didn’t need it after all. They can just monitor him.

We then got into the ambulance and were taken to GOSH- our home from home. The weirdly familiar smell and the font of the writing. I felt safe.

He was wheeled directly to Paediatric Intensive Care, which is called Dolphin ward. It was very surreal. A once full, busy unit… empty.

I had to wait outside while they settled him in and got him onto a comfy bed. The nurse with was lovely, her name was Grace. She told me that she would sort my accommodation out for me.

I’m sorry, what? Accommodation? I’m staying here…. aren’t I?!

Nope. I wasn’t. Parents weren’t allowed. She gave me a key card to the parents accommodation up the road.

I went into see Ellis to make sure he was ok, baring in mind this was about 12.30am. He was exhausted and just wanted to sleep. So left him.

The hardest thing I’ve ever had to do.

Anyone who knows me, knows how terrible I am with instructions. I don’t know my left and rights and forget instantly any information given to me.

“Go right, then left, then through double doors, up the road and you are there”

Or something like that. I had no clue what she said. I asked her 3 times 🤦🏼‍♀️

So I did what I do best and winged it. I made my way to the entrance, so thought I would ask the guard where to go from here. Only to be greeted with the same words.

By this point I was angry, tired, hungry and so very low. I had kept it all in all day to be strong for Ellis. I got outside on the pavement, with my 4 bags and just cried.

I was so out of my comfort zone, I had no battery on my phone and there was no one about.

Luckily, a lady saw me out of her window and came out to help me. She physically pointed the accommodation out for me, which I was so grateful for.

I made it to the building and it was like the crystal maze to get into. No one there to help me, I had to figure it out on my own. Tears and snot everywhere and more bags than Heathrow.

But I made it. I walked into my room, shut the door behind me and just cried. So much. I couldn’t stop.

I have needed someone more in that moment, but I was alone.

I had no other choice than to blow my nose, wipe my face and get sorted.

I’m in bed now and it’s 2.30am. I’ve had an hours sleep in two days, I haven’t eaten and I’m so so tired.

So why won’t my mind just let me sleep.

I really wish my mind would just let me sleep.

Xxx

When things get tough, I write

So here I am, leaning on the only coping mechanism I know.

I know most people won’t want to read this and see my blogs pop up and think ‘again?!’ So I wont be offended if you keep scrolling.

I wrote my last blog on how well I was coping and how resilience and positivity keeps me going. It gives me the strength to fight whatever is thrown my way.

Until today. I feel lost. I am terrified. I feel physically sick.

Ellis has tested positive for Covid-19.

My boy. My son. Not someone in the paper, not a story of a friend of a friend. My child.

The same child who has already been fighting cancer for 7 months.

I am beaten.

I can’t fight anymore.

I don’t want to have to fight anymore.

I very rarely get angry about our situation, but now it’s all I feel.

We were shielding for 12 weeks, not even going to a single shop. We have been so so careful and it still got us.

I keep racking my brain thinking was it me? Is is that time I went to the shop last week when the oncologist told us we could? Should I have checked on him more that he was washing his hands more? That time he pressed the lift button because he was being his usual stubborn self, I should have stopped him.

We all need to get tested, but until then I’m separating myself from everyone just in case. Glenn has come home from work to start the shielding all over again. Ellis is confined to his bedroom and I am in mine so we can have some kind of control over the situation.

I told the girls this morning, to remind them they need to be super careful and hygienic and not to go into his bedroom.

Lily is 10 and extremely empathetic. She just cried and cried. I just sat there watching. Do I hug her and potentially give it to her? Or do I sit helplessly. So I sat.

My heart feels like its been broken into a million pieces.

I’m scared that actually this time, things won’t be ok.

The laid back boy who never gets scared, is scared too.

Everything is blurred.

I have just spoke to UCLH who were incredibly lovely. They feel like family. We have to self isolate for 14 days and we have all got to be tested. If he gets symptoms, he can be treated at home unless he has a fever. If this happened, we follow our normal neutropenic protocol and head to Rainbow Ward.

So to all those people on the beaches and on the marches, this is the aftermath.

A family who have done everything right for the past 3 months. You have done this.

I am angry like you wouldn’t believe and I hate that. There is blame in this. There is fault.

People carrying on like nothing is wrong, all because they can’t see past their own noses.

I ironically had a conversation yesterday with a good friend about people going about their life and how I feel about it. I said anger is a wasted emotion. As long as we were doing as we should, we would be fine.

How wrong could I be.

My head is pounding, my eyes are sore and my heart feels liken it has been ripped out and stamped on.

I hate feeling angry and out of control. I hate that I’m helpless and letting the anger consume me.

But mostly I hate the fact its unfair.

What has my family done to deserve kick after kick. Every time I dare to feel in control or have the tiniest glimmer of hope, things fall apart.

I find myself seeing other families on Facebook and feeling so incredibly jealous. Why can’t that be us. Why can’t we just live like everyone else. Why have hospitals and tests become our norm.

I am finally broken.

Xxx