Osteosarcoma

What messes you up the most is the picture in your head of how it’s supposed to be.

Summer 2020.

The year that the summer holidays were meant to be the best.

Treatment was due to be over, PICC line out and I was determined to have as much fun as possible to make up for the last 9 months.

But in reality, it doesn’t work out like that. It never does. Things very rarely go as you planned, especially when you put so much pressure on yourself to achieve it.

I felt as if I had something to prove almost, not to anyone else but to myself. I felt like I had let them all down with this disaster of a year and wanted to make it up to them.

This resulted in me nearly having a breakdown last week. Ironically, I have never felt so low.

This summer in reality has been more tests than we’ve had since January, the uncertainty of potential blood transfusions, another call from the cardiologist asking to see him because something has shown up in his last echocardiogram. It’s been a mixture of relief, guilt, anger, sadness.

Someone close to me last week helped me verbalise why I am feeling this way.

Imagine you are at a Theme Park. You queue up for the biggest, scariest ride. You know it’s going to make you shit your pants but you are already in the queue so you have no choice other than to ride it. You build yourself up with all of these emotions, you are terrified but pretend to act cool like you’ve got your shit together. You can’t back out as the queue is one way, so you have to just carry on. As you get closer, the fear intensifies. The ride itself goes relatively quickly… you just go through the motions and accept it for what it is. As long as there are no complications that is. Then once the ride has finished, you get off. Back to the same place you were before, but with a tonne of emotions and adrenaline rushing through your body. You try to walk but your legs feel like jelly and you’re heart is pounding. That’s where I am.

During last week, when I was already feeling low, someone from my past contacted me. I was told that I was a joke plastering my life all over social media. I was told that Ellis would grow up embarrassed by me because I share his life.

That sat with me for a few days, eating me up inside.

It made me really question everything. Was he right? Was I bad Mum? It very nearly was the straw that broke the camels back. I nearly deleted all my blogs and social media thinking he was right when he said everyone is laughing at me.

I spoke to Ellis about it. He reads all my blogs anyway so knows what I share. I have never shared the intimate details, it has always been my account of what has happened. He looked at me and said “He’s not even important, just ignore him. I don’t know why you even reply.”

He is right. As always. This man, a man who hasn’t been in my life for 13 years, his opinion actually didn’t matter. Pretty sad to think that after so long he still sees satisfaction in trying to bring me down. Why anyone would take pleasure in tearing someone down is something I will never understand, especially when its very clear that they are already struggling. But last week, I was doing more damage to myself than you ever could, so nice try.

But I am worth more than some random mans opinion.

My kids are proud of me, my family and friends are proud of me. It took his comments to make me sort myself out.

My blogs have been read over 11,000 times worldwide.

Not that I have to justify myself to anyone. Especially a sad lonely man with anger issues.

I don’t seek validity in others anymore, I make sure that I am true to myself. If you don’t like me, don’t talk to me. It’s simple. But I will never change based on someones opinion.

I am slowly learning to be honest with people too. We had a great day Saturday with a picnic to celebrate Ellis’ 13th birthday and his end of treatment. So many amazing people came to celebrate with us, it was very humbling.

I was asked by lots how I was and I answered honestly. Im not great, I am struggling, but I’m getting there.

What I have learnt this summer is that things take time. You can’t box feelings up in a neatly organised time frame. Feelings fluctuate, one day I feel on top of the world, the next I am googling self admission to mental homes because I feel like I am losing my shit.

We all paint this ideal picture in our heads about how life should be. When we meet someone new it’s always the same questions. Are you married? What job do you do? Do you drive? We suss each other out based on a made up scale of success that is rooted deeply in our society.

But when was the last time you asked someone if they are happy? Surely that’s a much more accurate scale of success?

To be happy in life is successful.

To be successful is not necessarily happy.

Think about it.

xxx

 

 

Osteosarcoma

Just sad.

Today is hard. I’m feeling so sad for no reason.

These last 9 months have been a rollercoaster of emotions for me. One day I feel powerful and on top of the world and the next I feel like crying. Today is that day.

Nothing has happened, Ellis had his last two appointments yesterday at UCLH and all we are waiting on now is PICC line removal. It’s his birthday Thursday and we have a picnic celebration Saturday.

I don’t feel like celebrating.

I know that sounds silly. All I’ve done for the past 9 months is moan that I want it to be over, now it is I feel I don’t have to right to moan.

I feel like I should be having the best summer ever, making the most of our time off together but the truth is, most days I have lacked motivation to even get up.

I’m tired. Not the kind of tired where you can get an early night, the kind where your soul is tired.

I still haven’t cried yet. Not since the beginning. I desperately feel like I need to, but I can’t.

I feel like I’m stuck in limbo land where I just can’t feel anything.

I’ve been a shit mum this summer, I’ve not done much with the girls, not done much with Ellis on the days he’s been home. I see other families having days out, laughing, being silly. I want that. I don’t even have an excuse not to have that anymore.

I feel like I need to talk about the past 9 months, like really talk it through but to who? My counsellor is still not working due to COVID-19. Everyone else is so busy. I have the most amazing people around me, but I feel like a burden to them if I talk to them about it. Afterall, who would want to sit for hours listening to me going on? It probably wouldn’t make sense anyway. It will just be me talking about the really boring parts, the bits that never made it to the blogs. The everyday stuff. The stuff that I know I need to process in order to be ok.

I feel different. I feel like I have changed. I want more from life than to just get by. Life can change so so quickly. Would I be happy as I am if things changed again? Absolutely not.

I think about Christmas this year, that has always been my goal the whole way through. Last year I was so scared. I thought that he wouldn’t be here. I felt guilty for even thinking it, like somehow I was letting him down. I know that sounds silly.

I have put so much pressure on this summer and Christmas being perfect that it’s made it so much harder.

Nothing is ever perfect. Not the Facebook filtered lives you see, not the Instagram perfect pictures of how life should be. Life is fucking hard.

So why do I continue to raise the bar and push myself into making a ‘perfect’ life. That’s not me.

I just want a break. I want to empty my mind of hospitals, tests, children hen pecking me 24/7 that they are hungry or she looked at her the wrong way.

I want to feel like me again.

Not a hospital mum, not a super woman who has to do everything, just me.

I want to laugh so much that my belly hurts.

I don’t think that’s too much to ask.

This is such a moany blog, but when I feel I need to write, I write. No filters, no editing. Just writing.

I don’t even have a witty ending for this one. This is just it.

Xxx

anxiety · Cancer · confidence · Coronavirus · Covid-19 · Family · Lockdown · Mental health · nhs · nurse · Osteosarcoma · wellbing

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

Osteosarcoma

So now what….?

So we are now exactly a week after Ellis’ last chemo.

The highs of last week have long gone and the stresses of end of treatment tests, scans and trying to somehow pick life back up has taken over.

Negotiating multiple London and Stanmore trips, working out childcare, trying to remember who I need to talk to about referrals and when.

It feels like the very beginning again. The uncertainty of who we are seeing next, the logistics of living so bloody far away from all the appointments. Trying to split myself 4 ways, to make up for the time I’ve lost with the girls as well as making it a summer to remember for us all. We deserve this summer.

I’m trying to get Ellis back to full mobility, which is difficult when he’s so lazy. I had to bribe him with bacon so that he washed this week. No really. Teenagers are gross.

Trying to sort out school uniform, for the boy who’s gone up 3 shoe sizes in a year, the 12 year old who now wears age 16-17 trousers 😳. One daughter changing schools, the other stressing about her Kent Test… it’s all go.

There is no time to reflect.

No time to breathe, relax and process it all.

I’ve been asked a lot this week by my lovely friends, what it feels like now it’s all over. It must be amazing, right?!

Is it bad that it’s not?

Not seeing Ellis feeling poorly due the chemo is the best. I can’t describe it. But not having medical experts on hand to answer my silly questions or not having the lovely UCLH staff to chat to us is tough.

I feel a huge shift in responsibility from the team to me. All on me.

I’m trying to pick life back up where we left it way back in December, which is hard. Trying to get some normality back to bedtimes now I’m here all the time, trying to have dinner on time and actually cooking for us all for a full week and making sure everything is in place for September.

I just wish there was a little gap. A little time after end of treatment to really sit and accept it. To focus on what’s been and what’s yet to come.

But I can’t do that if I’m constantly running at full speed.

Anyone who knows me, knows I am a huge advocate for wellbeing and looking after your mental health. But again, impossible to do that during summer holidays with kids at home.

I’m just moaning for the sake of moaning today I think. I don’t even know what the point was to the blog.

I suppose what I’m trying to say is don’t forget about families like us. The ones who have reached the end and celebrated. Because even though we made it, it still affects us.

Because once you have had cancer, the scars stay with you forever. It changes how you think, how you live, your whole outlook on life. It makes you look at things differently, look at people differently.

No matter how free you think you are, you’re not. You’re a life long member of an exclusive club that got to say ‘I survived‘

But surviving and living are two different things.

Life is not a given, it should never be taken for granted. One day, your whole world can be turned upside down with no prior warning.

Maybe I’m not dealing with it all very well this week, but that’s ok.

I know what I need to do.

Xxx

Cancer · Family · Lockdown · Mental health · nhs · nurse · Osteosarcoma · self-love · Thyroid · wellbing

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

anxiety · Cancer · confidence · Family · Mental health · Osteosarcoma · self-love · Thyroid · wellbing

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

Osteosarcoma

Strong because of you.

Today has been emotional for different reasons.

A year ago today we said goodbye to my amazing, brave, loving Grandad. A whole year has gone by and so much has happened. I miss him more than I can explain and I wish he had been here this year to tell me it would all be ok. He always had a way of making me feel like it was going to be ok.

I’ve cried today a lot. I wish things were different, I wish I could hear your voice bellowing from the front room “Ello Gem” when I come round. I wish I could hug you and kiss you and feel your stubbly chin on my cheek. I wish you could see how the kids have matured in a year. How much Iris has calmed down and not so feral 😂.

See my Grandad taught me to be brave, after all he was the bravest man I had ever met. He taught me through his amazing war stories about how some things are tough, but you have to make sure you are tougher.

This morning I was consumed with sadness. It physically hurt.

Then after a walk to clear my head and a phone call to my amazing Nan, I knew I would be ok. I always am. It’s kind of my thing.

I walked and walked around Regent’s Park, taking time to look up and breathe in the sweet aroma of the flowers. I watched families playing, couples kissing on a bench and people exercising. Life goes on. I mean, it has to.

I start thinking about what he would say to me if he was here.

“He’s a tough lad, Gem. He will be fine. Plus he’s a gooner, we’re always fine”

See no matter what decisions I made in my life, he never judged. He never made me feel bad. He accepted me for me, because he was my Grandad. I don’t think he ever knew what that meant to me.

Ive just had a wander around the ward as I’m enjoying the peace and darkness since that horrible lady has gone and it dawned on me.

This is my last night here.

Ellis has one more week next week with his dad then 1 day chemo and then he is done.

I took time to soak up the beautiful views across London and sit for a while and just be.

We’ve done it.

7 whole months of every emotion possible and we have done it.

I can’t even put into words how I feel.

Thinking back to the very first time we came on the ward on a very cold and wet December afternoon. We were shown around by Amanda, who has become family to us. I remember feeling so overwhelmed with everything- the noises, the smells, the brightly coloured walls, the people. It’s was so much to take in.

Then in the early days feeling so scared and helpless, wishing it would all go away and not seeing a way out.

But we’ve done it, Grandad. We are at the end. You would be so proud of us. We made it through.

This was my war.

Little did I know that every single story, every single memory you used to tell me from as far back as I can remember has prepared me for this.

Thank you for loving me, Grandad. Thank you for teaching me to be strong. Thank you for watching over us all when things have become too tough, you’ve given me nudges along the way, I have felt it.

I feel so many emotions tonight.

But sitting at the window looking at the sky I feel close to you.

We did this together, Grandad

Xxx

Cancer · Coronavirus · Covid-19 · Family · Lockdown · nhs · nurse · Osteosarcoma · Thyroid

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

Cancer · Coronavirus · Covid-19 · Family · Lockdown · Osteosarcoma

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

Osteosarcoma

You haven’t finished. Not yet.

So, here we are again.

After 12 weeks of isolation, we are back inside for another 14 days.

I struggled mentally towards the end of lockdown, I had nothing but my thoughts. Nothing to motivate me, nothing to take my mind of things and nothing to give my brain the chance to just be.

When Ellis’ oncologist told us we no longer needed to shield, it was like a huge dark cloud had lifted.

We could go out. We could get fresh air and exercise. We could go out with the kids and let them run and hear them laugh. My family can be free.

I love challenging myself, its kind of what I do. I don’t settle. So as soon as we were allowed, I challenged myself to get fitter, to be more active and to soak up every opportunity to enjoy being outside.

I am a logical person and these past 7 years have taught me that you need something to focus on when times get tough.

I was hitting my 10,000 steps a day and feeling incredible for it. Long walks down to the sea, along the cliff side everyday. I felt alive.

Then Covid.

A lovely phone call to wake up to after the first proper nights sleep I had had in months.

“As your son has tested positive to Covid, you will all need to isolate for 14 day. No exercise, no walking dogs. Nothing.”

She may as well have told me to fuck off down the phone.

I am itching to go out. My mind is racing with all kinds of thoughts with no where to escape. My legs feel lazy, I am craving for that feeling when you’ve pushed yourself far enough that they ache.

Again, as with lots of times in my life, it got ripped from underneath me. Every single time I feel like I’m ok, it comes crashing down.

I picture life now like climbing a mountain. A huge, rocky, unsteady mountain.

The training for it hurts, it’s meant to . If it doesn’t hurt, you’re not doing it right.

You take baby steps to test the water, to see how far you can push your body. The first set back is always tough. Finding the motivation to carry on after that first fall is the hardest. But you do it, end goal in sight. New trainers to keep you feeling the part and that mentally you’re bossing it.

Once you get back up and dust yourself off, you feel incredible but it doesn’t mean it wasn’t hard.

You see other people on your training, some finding it easier, some harder. You learnt to not compare yourself with them, because after all, you don’t know how far along they are in theirs. A few encouraging words to the ones struggling to let them know they are not alone.

Once the novelty wears off it becomes a lot harder. Your once new trainers start to fray, your new leggings that once made your bum look nice are now worn and tired. Just like you.

But you haven’t finished. Not yet.

You know you must keep going. You know you must find a way, because you have people counting on you. Little eyes looking up at you in awe. You do it for them. It’s always for them.

I will reach the summit one day, I know I will. And there will be wine for daaaaaaays when I do. And possibly Phillip Schofield because he is life.

I just obviously have some more training to do. But I will never forget to look down to see how far I have come.

So until then, I will get up, get motivated and get my head back in the game.

For them.

Xxx