The most thought about, the most dreamed about and the most dreaded.
Every chemo stay, every operation and every London appointment to me, led to Christmas.
It has been my anchor during this horrible year, it’s been the thing that’s kept me going.
I was determined to make it the best Christmas ever, for them. It’s always for them.
Every day at the moment, I wake up to a new memory on Facebook of this time last year and each time it feels as if I am reliving it all over again.
Last Christmas Eve was spent sat by an empty bed, staring at the lonely present left on his bed by the lovely play therapist.
Up until then, that was the worst day of my life.
Little did I know what the next year had in store for us.
I was a huge mix of emotions that day, missing my girls who were at home over 100 miles away. Terrified and eagerly waiting Ellis to be wheeled back and come round from his biopsy. Itching to get home to my babies in time to watch the magic in their eyes and excitement in their tummies.
All the while, feeling weirdly numb.
Last Christmas I didn’t dare look forward. I couldn’t. I wouldn’t let myself go there.
My head was full of ‘what ifs’ and fear.
Scared doesn’t begin to cover it.
We didn’t tell the girls about Ellis until after Christmas and New Year.
Because I honestly was scared it might be the last Christmas with him. I wanted to give them all the best memories. I didn’t care that my heart was breaking, I didn’t care that I was falling apart inside, all that mattered is that they were together.
I’ve never said that out loud or admitted it until the other day.
That’s huge to carry around for a year and it feels overwhelming to let it out.
But we did it. We are here and we are ready to have the first Christmas of many.
As you may know if you have read my blogs before, I didn’t cry about the situation all year, I couldn’t.
But as I write this, tears are falling from my face.
I’m not sad.
I’m grateful beyond any words could do justice.
My babies are OK.
Actually, they are more than ok, they are happy and all super excited about Christmas.
I know the Covid thing is making this Christmas hard for many and I can’t imagine what that must be like, but for me, I couldn’t care less.
I don’t care if shops aren’t open.
I don’t care if we can’t go grab a coffee.
I don’t care if we can’t have a huge family gathering (the time will come I’m sure and it will involve allllll the gin 😜).
All I care is that I will wake up Christmas Day to 4 beautiful, healthy children all soaking up the magic of it just for that one day.
Champagne is already chilling and carrots and mince pies for Santa are ready to go.
Wherever you are this Christmas, whatever you are doing, take time to be grateful for something during this madness.
Because it will fill your heart much more than any gifts can.
A year ago today was the first day we went to the GP and demanded an X-ray. Getting told off for booking an emergency appointment. Being questioned as to why I wanted him to have an X-ray and only being given one to shut me up.
From today onwards it will be full of many firsts. First chemo, first general anaesthetic, first hospital stay, first London appointment. It’s endless.
I haven’t wrote a blog in a while, as I’ve been taking some time out of life to focus on my mental health and well-being.
I knew this was coming and I have prepared myself for the emotional impact it will have.
Or I thought I have.
Turns out, you can never prepare yourself.
I’m still sad. So sad.
I’m still angry.
I’ve been told by many that they are worried about me. I have been told through people that they are concerned I’m having a break down. I have been told I am being supported. Which is useless, unless you are actually supporting me. Ironic really.
Supporting me and telling me you’re supporting me are two very different things.
One is for your benefit, the other is for mine.
Take a minute to think about which one you are.
One whole year has passed, but it only seems like yesterday we were told the news that changed us all forever.
But despite the emotional impact tomorrow’s date is having on me, I feel in a really good place.
The time I have taken to look after my mind is paying off. The hours of counselling have helped me feel calmness again, after a year of chaos.
Last Christmas, I was beyond terrified. I didn’t dare think forward to this Christmas, because I didn’t know what it would be like. I have never cried as much as I cried in that first week. It’s my main memory of it.
I have reflected a lot lately on the year passed and how it affected me.
I have learnt that I use detachment as a coping mechanism. I saw the treatment plan as a challenge- a game. It was just a target that we had to reach and to get there we had to jump through all these weird hoops.
That’s why I didn’t cry when he rung the bell or when we were told he is NED. I was still detached from it all.
But this weekend everything changed.
I went to London where it all began. I walked the same streets that were home to me for nearly a year. I stood outside the hospital and spoke about my experiences, the sounds, the smells, the routine. I looked up at the 11th floor, seeing the view from a different angle in more ways than one.
It was closure.
I felt contentment.
And I cried.
It felt exhausting but liberating all rolled into one. Like a tidal wave of emotions that I had stored away for a year, locked away in the fear that if I let myself feel, it would consume me.
But it didn’t.
I felt empowered yet weak all at the same time. It was surreal.
I went with one of my best friends who just let me talk. Let me waffle on about the expensive pharmacy who ripped me off for both hot water bottles and fans in the opposite seasons, really listened and asked questions about the treatment, my feelings, my worries.
Who stopped me in my tracks before we got there, looked me in the eye and said “What do you need from me” and for that, a simple thank you will never be enough.
I needed to be listened to not just heard.
Now, I know tomorrow will be hard, I know the next few months will also have their hard days but I know that I have overcome so so much and come out of it a better person. So I know I will be ok.
Yes, I am still scared and no, that probably won’t be the first time I will cry over the situation, but that is more than OK to me.
I am in control of the situation now, something that I haven’t been up until now.
I’m feeling so sad tonight for a variety of reasons, most of which I can’t even write about on here, but there is one huge one that I’m struggling with.
My beautiful girls. The girls who have took this year in their stride. They have been beyond incredible in their attitude, empathy and expressing their emotions. I could not be more proud.
But during this year, somewhere along this horrendous year, my girls have grown up.
And I’ve missed it.
Lily was only 3 when I was diagnosed and I remember that when it was all over I felt like I had missed out on her growing up. I didn’t know what her favourite dinner was anymore, what she liked to do or didn’t like. I remember this being so hard and I struggled for a long time with this.
Now it’s happening again.
I feel like I’ve been the shittest Mum to those girls this year.
I’ve been so consumed in Ellis and his needs and treatment, that I haven’t given them the time they need.
Iris doesn’t need me. She’s not fussed. It’s Daddy who she needs. When she can’t sleep, when she hurts herself, she doesn’t come to me anymore she goes to him. It’s beautiful to see their relationship blossom over this last year, but it selfishly hurts so much to see mine with her disappear.
She can now read so well and is absolutely thriving at school. She is super sassy and insanely crazy! She makes me so proud but I miss her desperately. I miss the months that I wasn’t here and I know I can never get them back. The weeks spent at the hospital, the times when I was here in body but my mind was always somewhere else to do with hospitals.
I threw myself into Ellis and getting him better.
Lily’s got a beautiful character and just gets on with things. She has a love for learning that hopefully will never change. She loves school and has settled back in with ease into her new year. She has to go to breakfast club and after School clubs every single day to fit around my work, but she never moans. Tonight I found a practice Kent test paper on her bedroom floor. She got 100%. She didn’t even show me. I’ve cried a lot lately, but this set me off again. Why didn’t she tell me? Why wasn’t she excited to show me? Did she think I would say I don’t have time? That kills me inside. I think back to things she has told me or shown me this last year and that’s exactly what I’ve done. “Not right now Lily, I’m just on the phone to the hospital” “Show me later Lily, I’m just trying to work out Ellis’ appointments”.
And then there is Beth. My mini me. The stubborn, funny, amazing eldest. She’s been pushed out more than the others, because of Covid and her dads we didn’t see her through the whole of lockdown. We kept in touch with FaceTime and texts, but I missed her so bad. I haven’t been involved in her schooling this year at all. She’s gone into year 11, the most important year and I feel like I’ve blinked and missed it. She is the most empathetic (not that she will know what that word means 😂) girl I know. The struggles she has faced have been huge, but she’s smashing life.
I feel guilty beyond any words can express about this year.
The impact it’s had on us a family is huge and I’m not sure if all of it can be repaired.
I have some serious making up to do with those 3 little ladies. I need to show them I’m here and not going anywhere. I need to get to know them again and start making memories.
I wish I could scoop them up and say sorry. Sorry for being a shit Mum. Sorry for not having time for you, sorry for not being the Mum you all deserve. But I had a battle to fight and I gave it everything I had.
As it’s World Mental Health day I obviously wanted to write a blog. I want to talk about PTSD and triggers.
Tonight I am staying out with my mum and sisters having a girlie night with wine, face masks and a take away! I’ve been so excited for this for so long until now.
I have packed so much that it warrants my huge suitcase and I’m not even sorry 😂
But as I opened it, I felt sick. The last time I used this one was when he had covid. I usually unpack them as soon as I got home, but for some reason I had left this one.
All the horrific memories flooded back.
The industrial hand gel, the leaflets about his admission, a little certificate that they give to all children who use the transport to intensive care, his mouthwash for the chemo ulcers, handheld fans because England hasn’t invented air con yet 🤦🏼♀️
On the certificate it had the date. 4th July. Independence Day. The day that changed me forever. Things could have been so very different that day. They weren’t and I’m beyond grateful. But these memories will haunt me forever.
Most days now, I feel I’m doing ok but small things like this take me right back to that moment.
I can still hear the machines, the panic in the nurses voices. The smell of hospitals and the feeling of pure fear.
I’m sitting in the safety of my own bedroom, I can hear Ellis shouting like a little girl on his Xbox 😂 but my heart is still racing. It’s like part of me is stuck in that date and won’t move on.
I’m really proud of myself and how I have coped with this year and I know this will take time but it’s the hardest bit. The bit that creeps up on you when you least expect it. The bit that lingers around and attacks you if you dare to be happy.
I know he’s ok now and I know it’s in the past. But past or not, it happened and it was very real.
Physical pain leaves scars for people to see and understand. So does mental pain, but these run a lot deeper.
How can I fix these types of scars? No amount of creams or plasters will fix these. I have counselling once a week, which I find so difficult. I can open up on my blogs, but face to face is so hard. I feel vulnerable and stupid. I feel like I don’t have the right to even be sad because things are ok.
This week we had the awful news that one of the beautiful children on the ward with us didn’t make it.
This news ripped through me like a knife. Other children on the ward have passed away during Ellis treatment, but we had spent time with this boy. His Mum and I had bonded over the gross hospital food and shared similar stories about being a cancer mum during a pandemic. We got on so well and laughed so much. During one of my hardest weeks, talking to her and her boy saved me. So to hear the devastating news last week hit me hard.
Again, with that bit of news, I was back there. Back in hell.
Hell for me will always be there. It will always be somewhere I revisit from time to time and I have to accept that.
It will never be over. But I will learn to cope with the feelings a bit better. Hopefully one day, I will be able to look back and not feel the fear pounding in my chest or the terror bubbling up in my stomach.
It will never be a nice place to revisit, but I know that one day I will be ok with it.
I still have a lot of work to do on myself and my own mental health, but being aware of that is the first step.
Mental health is not something to be ashamed of. It’s something that needs to be spoke about and discussed.
Today, the tears finally came. Months of not being able to cry came to a halt today.
A beautiful little boy who we had the pleasure of meeting on our ward, passed away on Monday.
He had bone cancer the same and Ellis and his Mum and I bonded over the rubbish hospital food and lack of wine!
See this boy wasn’t at the beginning of his journey. He had crossed the finish line and rung the bell.
He did it.
This is what a lot of cancer parents struggle with the most when treatment ends. People assume it’s over. People assume that when their hair grows back, they’re fixed.
But it couldn’t be further from the truth.
Ellis has a 55% prognosis from 5 years after the date of diagnosis.
We have not even done 1 yet.
The treatment being over is just our safety net gone. It’s our constant check ins with the team, having the nurses and doctors on hand to answer any questions. You get used to feeling safe…. in a world where actually, you know you’re not.
Then as soon as you get comfortable, it chews you up and spits you out.
Back into the real world, but for this next part you have to do it on your own.
I feel so many emotions tonight. I feel an almost guilt like feeling, why that poor family. What did we do any different?
I feel sad. Beyond sad actually, but tonight I’m too emotionally exhausted to find a more suited word.
I feel scared. What will these next 4 years have in store for us? I can’t even let myself go there. I feel sick.
It’s 2020, how is this still even happening.
How are our children still not beating this horrible disease. There has to be more that can be done. Right?!
I don’t want this life anymore for me and my kids. Enough now. But there is nothing I can do. I can’t stop it.
As a Mum, you promise yourself you will protect your babies. You will keep them safe forever, no matter what. You would die for them if you had to.
But I’m not in control of our situation. Not at all.
I pretend I am, to them. Lily writes me letters thanking me for keeping her brother safe and it breaks my heart. But I’m not. No matter how much I want to.
I wish things were different.
I wish it didn’t exist and it wasn’t a thing.
I wish every child would be allowed to have their whole life ahead of them and not have to spend their precious last months in a hospital having barbaric chemotherapy.
I wish it didn’t like children. I wish it took one look at them and went the other way.
It’s not fair.
And I can’t see it changing anytime soon.
If you’re with your babies tonight, let them have an extra cuddle. Read them an extra story. Kiss them that little bit more.
No, I can’t promise to keep my babies safe forever, but I can promise I will love them for eternity.
I’ve not wrote a blog in a while, partly because I’ve been back at work which has been crazy busy, but also because I’ve not been great in my own head.
Covid definitely has played a huge part in our story. We had only just started out when the world went into panic. Only 3 months into it when lockdown happened. Because there was a definite buzz before it took hold of the world, all of our hospital appointments have always been the same. We had restrictions in place a long time before the world did.
Life as a cancer mum during a pandemic has been hard. For reasons that until now, I had never thought about.
I’m on a few parents Facebook pages, for those who’s child has cancer. Super supportive, super helpful and a real sense of belonging in a world where you have never felt more misunderstood.
In these groups, we would see posts about how their child got through their treatment but having days out, having family visit the hospital and making sure they felt as loved as possible. Amazing.
But we couldn’t do that.
I felt a huge sense of guilt and unfairness. Those little things are so important, a huge part of resilience and recovery, but it had all been stripped from us.
1 parent per child to any appointment, and chemo- even his last one.
The responsibility of retaining and relaying that information to the other parent was huge. Decisions that had to be made on the spot, forms signed with only one parents signature and face to face meetings with just one parent, who was already full to the brim with information, trying to speak on everyone’s behalf.
Us cancer mums (and dads) supported our kids- but who supported us? No friend to go out with for a drink during the hardest times. No shopping trip stopping for cake and coffee to let off a bit of steam.
We were alone.
And in some respect, I think we will be forever.
It is no ones fault. I have so many amazing family and friends around me, who will listen to all my stories. But when no one has seen it first hand, it leaves you in your lonely little covid club once again.
End of chemo has been tough for this very reason.
How can I expect other people to even try to understand the enormous pride and relief that he made it to the end, when they don’t have the scarred memories in their heads of children on the ward who didn’t. The posts on the parents groups notifying us all that their child wasn’t as lucky.
You develop this coping strategy, like it’s a game. The worst game you have ever played. Jumamji on steroids.
Every single low make the highs that much higher.
After all, when you have been surrounded by death and dying for the past year, living is pretty spectacular.
You will never truly be able to understand what someone is going through, but being able to go through it alongside them gives you an insight.
To have done all this on our own means that no one can even try to understand. No matter how hard they want to.
Myself and Gavin are the only people who will ever be able to try to understand what the other person went through as we shared the load completely. We both did chemos, we both did part of the op and we both did appointments. But even with that, we did them on our own because of covid.
Support groups stopped, play rooms closed and only 2 parents allowed in the kitchen at one time meant that we were reminded of just how alone we were every where we turned. Nurses and doctors with facemasks on, which made it difficult to read their faces, feeling so impersonal.
Parents had no support.
The children were incredible as ever and all had their parent by their side, running on empty making sure they catered to every single need of their child. Like superhero’s without the abs.
We had no one.
The days were long and the nights were longer. It was like prison. Not even able to pop to get a coffee because the restaurant had closed. Not allowed to leave our room at rainbow ward, so stuck in it for the whole duration. No human interaction apart from the amazing PPEd nurses who would come and stop his machine from beeping.
No one could predict covid, but we can all learn from it.
Human interaction is vital. Support is vital. To let someone they are not alone is vital.
If you know a parent of a child with cancer during a pandemic, ask them about it. Chances are they will not be able to stop talking!
We need to be heard. Not in a ‘look at me’ kind of way, but because we have the whole weight of the world on our shoulders under normal circumstances, but covid has made that load a million times heavier.
So take a walk in my shoes, see what I’ve seen, hear what I’ve heard, feel what I’ve felt. Only then will you be able to start to understand the way I now am.
I raised over £2200 for CLIC Sargent this weekend and it was incredible.
Anyone who has read my blogs knows that I struggle with my own health as well as this years hell with Ellis.
Living with a cancer diagnosis is something that will follow you around forever. From health declaration forms and travel insurance to the inability to give blood or donate stem cells.
It limits you in ways you would have never thought about pre diagnosis.
Things that matter now, never used to and vice versa.
When it’s over, you are entered into a weird club of survivors. People who have fought and won. Forever feeling scared, felling lucky and a lot of the time feeling guilty.
What did I do that made me beat it?
What made me the lucky one?
I mean, don’t get me wrong. It’s incredible. To know the very same body that malfunctioned and grew cancer is the very same body that fought back and got rid of it.
But I always think of the people who are left behind. The ones still fighting. The ones who grew too tired.
Two very good friends children are still fighting their battle. How can I possibly be happy when I know that. Their battles are longer, there has been more scares, more hurdles. I’ve never met these people in person, but they have quickly become family.
When they both finish, we all finish.
No one gets left behind.
When we celebrated Ellis’ end of treatment bell ringing and being told he was in remission…. I didn’t cry. Of course I was so happy. I can’t even explain the feeling of relief and sheer elation. But I didn’t cry.
You see things on tv where families receive the news and it’s huge. They cry, they hug. There is snot by the bucket load and everyone is so overwhelmed.
That wasn’t us.
And why? Because it’s all still there. It’s all still raw. Knowing that there were children on the ward you were in, who shared the same bay as you…. who didn’t make it. They weren’t as lucky.
Like a soldier coming out of war, knowing victory has been made, but still struggling with the things they have seen, the things they have heard.
We didn’t skip over the finish line, we crawled. With battle scars, emotional wounds and baggage that will stay around forever.
But yesterday, I truly felt peace.
Peace for the first time in a very long time.
After the initial adrenaline rush, we drifted down to the ground at a pace that felt like we weren’t moving. I could see France, London… there was no limit.
It was breathtaking.
It was the clearest day, not a single breeze in sight either. Perfect for being pushed out of a plane!
That part was my favourite. It felt like I was up there hours, soaking up the views, relishing in the peace and quiet.
It was my moment.
My moment to draw a line under it all and to move on.
7 years of fear, hospitals, emotional rollercoasters, tears…. finished.
This has had a really weird effect on me today and possibly why I’ve not felt great all weekend.
I don’t feel anything. But for the first time in 7 years, it’s not because I’m numb. It’s because I have accepted it’s over.
I sat with a friend tonight and looked at pictures of this past year. We spoke about the bits I’ve not shared with anyone. The boring bits that never made it to my blogs or social media, talking about little funny moments, the really hard moments and all the insignificant bits in between. Even the bits that probably made no sense to someone else, but to me it was all I knew for 9 months. The drug names, pictures of the ward, the parents kitchen, the lift lobby were I spent hours by myself looking out over London. I’m pretty sure to them, it was boring, but to me it meant everything. To be able to start talking about it and say these things out loud, to be able to process what’s gone on are tiny building blocks in accepting it and moving on. To look back on pictures from the beginning and reflect on how I felt, was therapeutic. I realised how far I have come and how much I have changed.
I am feeling much more positive since my last blog. I’ve started back at work, the kids have gone back to school and things are finally feeling more normal.
I had my first encounter with an internet troll this week, which could have broken me, but it didn’t. I felt compassion for her. She has been following my story for nearly a year and has chronic illness herself. She lives in America, where the covid situation is very different to ours. She knew this. But she still chose to steal my picture from Instagram and post it to a silly Facebook page- you know, the ones where people make fun of others to make themselves look good.
She posted about how irresponsible it was for Ellis to go back to school and how I’ve had parties with ‘hundreds’ of people to celebrate.
At first I read every single comment. Comments telling me to die. Comments telling me I should have my children taken away from me… all because he went back to school.
She took a post from an already broken mum, a post admitting I was so scared and nervous about him going and changed it to boost her ego. It’s very sad how someone could be that heartless.
At first I was angry, I had just come out of the hardest two weeks of my life, where I felt I was on the verge of a breakdown. As soon as I saw it, my heart sank. I felt sick. At that point, I was terrified I would go back to that place.
But then something happened. Something beautiful and amazing.
All of a sudden, those nasty vile messages were replaced with positive encouraging messages praising me and my choices, praising me as a mum and telling her she was wrong for doing what she did.
That was the moment I knew I would be ok.
I had a whole army behind me. Nearly 200 messages in my inbox supporting me and picking me back up. Some I knew, some are my girls who I know have always got my back ❤️ But some were strangers. People I had never met or spoken to, telling me how without realising it, I had lifted them up when they needed it the most. The words were so empowering it was humbling.
This is why I over share.
My Instagram and blogs are honest and raw. I strongly believe life is better when you’re honest, so I try to love my life by that.
So this is a thank you, to everyone who has been behind me. It wasn’t a case of taking sides, it was girls empowering girls (and some boys 😜) and making someone feel so supported, not because you had to but because you wanted to.
I feel on top of the world today. I feel like I am on the right path to getting better and finding me again. I feel strong.
And that’s because of my friends. People I’ve known my whole life, people I’ve only known a few months and people I have actually never even met, but who are only ever a message away.
So remember how powerful your words can be. If you see someone struggling, message them. It’s not about finding the right words to say, it’s about saying any words you can to make sure they know you’re thinking of them.
I’m not sure if I’m even going to publish this or whether it’s just going to help me process it all. Either way, I’m writing it out.
I’m struggling at the moment, more than I have ever have.
The thing that has got me through this last year is the end goal. The bit after treatment where we can be normal. I longed for those day’s back.
But I didn’t bank on normal not being there anymore.
I feel so guilty that I’ve missed such a huge chunk in the girls lives. I miss being a mum, a proper mum. I miss knowing what they like to eat, how iris likes her bedtime routine, what Lily’s been up to. I feel so detached from them it hurts. They have grown up and have changed. Yes they are resilient, beautiful little ladies, but I’ve missed all that. I’ve missed the goodnight kisses, the lazy mornings, the trips to the park.
This is huge chunk of my life and their lives that I can never get back.
How do I go back to normal when everything is so different?
How do I feel at home in a house where it’s all changed.
I’ve hit rock bottom. Didn’t think pain like this existed, but here I am. I’m defeated. I’m exhausted and I’m weak.
I have been looking back at photos from America which was only last October. Little did I know this was the best time of my whole life. I had the most amazing job lined up, I was processing and learning to have a life without my Grandads. The kids were doing so well at school.
It was over.
My hell of a journey, my end point. I had reached it.
Looking at the photos and seeing the smiles, the laughs, the memories…. it doesn’t make me happy, it makes me sad.
I want that. I need that. But I don’t know how to get it again.
I long to feel the normal mundane routines of school and work. I long for those huge genuine cuddles from my girls because they’ve missed me, not a subtle head turn away from the TV because they are so used to me not being there.
I can’t imagine life being the same again. Well it’s not, I know that. But similar at least.
I feel like everything is spiralling around me. There is so much noise, so much panic and rushing.
I need to be still.
I have been talking to a lovely Macmillan counsellor and he has really helped me understand a few bits.
I need to take some control back in my life, this isn’t me. I make bold decisions based on trusting myself, I challenge myself to fight harder, I do things that scare me to laugh in the face of all things cancer. If I carry on like this it’s won again. I know this.
I don’t want cancer to be my enemy anymore. I don’t want it to be something I have to beat.
I am ready to roll over and accept it. That doesn’t mean it wins, maybe it was never a competition in the first place.
The last 7 years of my life have been consumed by it. I’ve blamed it, I’ve hated it and I’ve feared it.
Maybe it didn’t take anything from me after all, maybe it was just a by product of the situation. Maybe it was lessons that I needed to learn. Maybe it was lessons that have set me up for new challenges in my life life my job, new friendships.
I am not the person I was 7 years ago, so I think I’ve been pretty unfair on myself to feel guilty that I’m not the same person I was before Ellis’ diagnosis.
I want to be better, I want to grab life with both hands and shake the fuck out of it. I want to go on amazing holidays, eat amazing food, laugh so much I can’t breathe.
But my main focus now is finding me again. The new me. The girl who actually, against all odds is still standing. The girl who has learn that it’s ok to show that I’m vulnerable and that I’m sometimes not ok. The girl who feels lost and doesn’t know where to start.