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.
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 ❤️❤️❤️
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.
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.
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.
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.
Why are some of the nastiest words we hear from ourselves?
Self love is not about thinking you are better than anyone. It’s not even about thinking you are stunningly gorgeous. It’s accepting yourself for who you are.
My body is far from perfect and its taken me a long time to accept that actually, that’s ok. I have stretch marks, imperfections, a scar across my neck and definitely more chafe than thigh gap…(Because… cake)
But what this means is that it has carried 4 incredibly amazing children, it’s beaten cancer and survived some really dark times.
And I finally love it.
It makes me so sad to see people who are not happy in their own skin, people who avoid doing things they love because of they way they feel about themselves. People who are insecure about the very body that keeps them alive.
One small nasty comment years ago that has shaped your view of yourself or stuck in a relationship where it has become the norm to be put down and not appreciated. Hang ups you have about parts of your body you hate, because someone irrelevant once told you so out of spite. Parts of your body you wish her smaller, bigger, more toned, less toned……
It’s not about looking in the mirror and telling ourselves we are perfect. It’s about knowing that it doesn’t even matter that we are not. No one is. Ok well apart from Phillip Schofield, but I mean he is god.
Perfect is manufactured from magazines and media. Naturally beautiful girls being photoshopped within an inch of their lives to become more appealing to this weird ideal that everyone so badly craves. Everyone is worth more than that.
I am lucky enough to know some of the most kindest people, who will pour kindness into others, but will be hard on themselves.
If this is you, stop. Turn your kind words back onto yourself and listen to them.
The things you love about your partner, or the things you find endearing in the person you like- you have these qualities in you, too. The things you wish you were, you already are them and more.
Why is life somehow ruled by the size of someone’s arms or the length of their legs?
Life is about fun, adventure, meeting new people and connecting in ways you never dreamed possible. It’s about laughing so hard until your cheeks hurt. It’s about those moments that take your breath away and also the hard moments that make you who you are.
Life is like a book.
Our past is our story and our bodies are the illustrations.
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?
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.