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?
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.
After 2 nights at Great Ormond Street in Intensive care, we are now back at our local hospital. His blood pressure needs to be stable on his heart meds, before we can go home.
Every single person we have met have been incredible. From the doctors, the nurses, ambulance driver who kept making us laugh to the cleaners who work tirelessly making sure more than ever now, that everything is clean.
When faced with a situation like we’ve been in, it’s very hard to hand your baby over to someone else to care for, no matter how big they are. Relying on these amazing people to make him better, to monitor him closely to make sure he is safe and to make decisions about his life based on a few notes.
At UCLH where Ellis has his chemo, the team feel like family to us now. Even during the worst of the pandemic, they carried on working, leaving their own fears at the door, ready to care for the children. They have continued to smile, to laugh and do their job with the utmost care and skill. T11 North at UCLH, I cannot thank you enough for what you have all done for us. 7 months of chemos, test, operations and visits. You have made us feel safe, valued and in control of this horrendous rollercoaster of a year. You have taught Ellis not not be afraid and to fight, because he wasn’t in it alone.
The staff here in Rainbow Ward in QEQM Margate are absolutely amazing. The nurses are all so kind and not only make sure Ellis is ok, but that I’m ok too. Because of Covid, we are not allowed to leave our room so we both get food brought into us. We cant use the parent kitchen either, so the little walks around to get a tea a few times a day, to stretch my legs and get a change of scenery can’t happen. The lovely nurses have been offering me teas and coffees on top of their own already stretched workload. They are amazing.
The cleaning team work tirelessly to make sure the hospital is clean and safe.
The ambulance drivers both times, were both great. They were happy and jolly and kept making us laugh. They made me feel at ease in the worst situation of my whole life. I will be forever grateful for that.
Our team of community nurses who visit us weekly are just something else. We chat like friends and they nag Ellis is only a way a Mum would! They tell him to drink more, to wash more, to do homework and exercise. They genuinely care about him and it’s very heartwarming to see.
My Mum is a community Nurse and she makes me proud every single day. She has the hardest days that I can’t begin to imagine, she carries her work home with her in her heart because she genuinely cares. She has been scared for Ellis as much as me during this, but she gets up each morning, puts on her uniform and goes to work. My Mum hates to be called a hero and thinks she doesn’t deserve the title. But she is my hero. Now more than ever.
The NHS and it’s staff deserve more than a clap. They deserve to be paid what they are worth.
I have had 5 days in a mask and it’s unbearable, I can’t imagine how they must feel.
They are scared the same as us, they have children the same as us and they want to hide just as much as us. But they can’t. They show up for their long shifts and care for our families right on the front line during this pandemic. They are incredible.
If you know a nurse, thank them. Thank them for putting others before themselves and pushing through their own fears. Because without them, things could have been very different.
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.
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.