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.
A very moany blog this morning and I’m not even sorry.
Most people we meet in the wards are so lovely, some I consider friends for life. But some- I can’t even think of any polite words to describe them as my brain doesn’t function on an hours sleep.
Some people are just so fucking rude.
There is a lady near us who for the past 2 nights we have been here has been literally shouting on her phone while its on loud speaker until 1-2am. She plays music on her phone so loud too in between phone calls. She is so rude to the poor staff about everything, I even heard her shouting at the lady who brings the dinner because it was not to her taste.
It is just us and another little girl and her Dad in our bay as due to Covid, they aren’t allowed to fill all beds, so we have a double bay to ourselves. First thing I thought when I was told this was ‘Oh this is going to be nice and quiet….’
The first night we all kind of put up with the noise. The glance across the bay the next morning to the Dad who clearly hadn’t slept either was evident at just how much this one lady was disrupting the ward. A chemo ward I like to add, where children need their sleep and peace and quiet. If they are not asleep, they are feeling rubbish and sick so still need to rest.
Last night I lost my shit. I don’t care for me, but when my son is feeling sick and tired because he is having chemotherapy and you are making him feel worse and stopping him from sleeping… big mistake lady.
I walked into her bay and told her to shut the fuck up and have some respect for the children trying to sleep. I was so angry at her, probably more than I should have been but as everyone knows I am bordering on the edge of insanity as it is at the moment. Plus me in pjs braless, after no sleep is not a pretty sight. I’m not sorry.
She pretended she couldn’t speak English and gestured that she didn’t understand.
She understood because she stopped.
Until 7am this morning when she started again.
Like I don’t even like anyone enough to phone them that much, she is obviously a nice person because someone must really like her to listen to that for hours on end.
The cleaners then decided to joint her shortly after shouting and laughing at the top of their lungs followed by a little boy running in and out of our ward thinking it was the best game ever. He now has a remote control car. Oh the joy.
It’s now nearly 9am, Ellis and the other little girl are fast asleep thank god.
Me and the Dad opposite are in a constant zombie state and have started finding things hilarious. Definitely due to insanity.
I feel so sick, so tired and not sure whether to laugh or cry this week.
I’m so ready for this all to be over now. I don’t even think wine will cut it today, I need a holiday. Or Phillip Schofield to whisk me away in a GTR and love me unconditionally and possibly stroke my head.
There is only so much shit someone can take, right?
As with all my blogs, this one is very honest and raw.
I suffer with Anxiety and I have done for as long as I can remember.
For me, anxiety is like being followed by a person. It knows all of your insecurities and uses them against you. Sometimes that person trails behind, but he’s always there, lurking in the shadows. Sometimes it gets to the point where he is all I can see. He’s huge. He towers above me pointing down telling me I’m not good enough, that I’m ugly and that everyone thinks I’m stupid.
My anxiety has stopped me from doing so much in the past, from job interviews to friendships and even trips out with my children.
Lots of my anxiety stems from my ‘Dad’ and his inability to acknowledge my existence. Years of not feeling good enough, years of being told I was stupid and years of desperately seeking his approval. Maybe that’s why my anxiety is personified. Maybe he is the person I fear the most, he is the person who wants me to fail. He isn’t even around anymore and he isn’t part of mine and my children’s life, but this anxiety still follows me around.
I spent a long time wishing it would go away, wishing it would leave me alone so I could carry on with my life. But that’s not how life works is it. Not for me at least.
I fight. I have to.
Over the years I have learnt that actually, its ok to not be ok. It’s ok to admit you are struggling and it’s ok to admit that although on the outside looking in, I seem like I’ve got my shit together. But I haven’t, not really.
I take tablets to help me sleep and to try to reduce my anxiety. I don’t want to be held back anymore by something that my mind is creating, but just because I created it, doesn’t mean I know how to stop it.
I tell my children every single day that they are amazing, they can do anything they want as long as they work hard. From the minute I became a parent I vowed that I would be nothing like him. I would fill my children with confidence, empathy and resilience.
I broke the cycle and it feels incredible.
My children know their worth and will stand up for what is right. They are confident, yet humble. I haven’t wrapped them up in cotton wool and protected them from the world, I have given them the right tools to go and explore the world head on, in whichever way they want.
Above everything, they know they are loved. So so loved, by lots of people.
As they are getting older it’s amazing to watch them mature into little people with their own personalities, morals and values. They are all so different but equally as amazing.
But as I watch on with awe at them, I feel stabs on envy.
Being that carefree and trusting yourself enough to make decisions for you, must be so liberating.
Some days I have a hold on life pretty well, some days I don’t. But that’s ok.
I have always used the gym as my escape. I’ve recently got back into exercise after a few years off and it feels incredible. For that short time, I am in charge. I am running and he can’t catch up. The first few times he tries, he keeps up the pace. But he doesn’t beat me. The more I push, the stronger I become and the weaker he becomes. I got to a point a few years ago where he didn’t even try anymore. Running helped me control the anxiety and made me stare at it in the face and say catch me if you dare, fucker.
I am aiming for that point again.
I know it will never go away fully, even with counselling and medication, but I can try my absolute hardest to make it feel not welcome.
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.
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.
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.
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.
Lots of my blogs lately have been about Ellis and his journey, updating everyone on his progress and what its like to be a cancer mum.
This ones a little different and back to my original blogs.
This is about me. Gemma. Not a mum for a minute, not a wife. Just me.
I’ve met a few new people over the last few months in different circumstances, but ones I consider friends none the less.
Talking about who I am as a person, what my fears are and my goals.
I was asked today if I had any regrets by one of these friends and my answer was no. This isn’t to say I have never done anything wrong, because anyone who knows anything about me knows I have more than my fair share!
But do I regret anything? Absolutely not.
Those hard times are the times that give you motivation to make things better.
No regrets, only lessons.
It got me thinking about resilience and mental health. I’ve read lots of studies on the relation between the two and used it to reflect on my own life.
Maybe the reason I have coped relatively well during the last 6 months is because of the shit thrown at me in the past. The blasé approach to cancer and operations. The confidence in my own ability to overcome and adapt.
I’ve been knocked down more times than I think is fair in my life, but I have always got back up stronger and braver every single time.
I grew up never feeling good enough. I sought praise from the one man in my life who was meant to fill me with confidence and set me up for life. The one man who still, to this day, I am not good enough for.
I fell in ‘love’ with the wrong kinds of men, the ones who made me believe I was special for that little moment, only to use it to shatter me all over again.
Being a mum awakened something inside me that told me I was, after all good enough and I can do anything I want. It gave me the confidence to fight for what me and my children deserve.
I wanted to do better not just for them, but for myself.
I was good enough.
At the peak of this new found strength I started to learn about reflection and self awareness. Something I had never though about. This was a turning point for me. I had to question myself on why I felt a certain way and what would I do different next time. It was powerful shit.
I learnt that the more you get to know yourself, the more you can trust yourself to make the right choices. And there comes the resilience.
I was diagnosed with thyroid cancer in 2013, right in the middle of my self exploration. It helped me to work through my fears and feelings. I knew I could trust myself, therefore I was a little less scared.
Again, this doesn’t mean I wasn’t scared. I was terrified. I think back to my darkest times where I cried for hours, mentally started to make plans for the children’s futures in case I wasn’t there. I felt anger, guilt, denial all the things you feel when faced with something like that. But I allowed myself to. If I was sad, I cried. If I felt angry I went to the gym to take it out on the running machine. I trusted myself enough to know that once I had felt these things and acknowledged them, I would be ok. Whatever the outcome.
I took all of this and used it for positive. I supported others going through similar situations, I started my blogs to make others feel less alone.
I owned it. It didn’t own me.
People use the word brave and I don’t really like it. Brave is a choice. Brave is deciding to get that spider in your room instead of sleeping on the sofa . Brave is choosing to laugh in the face of danger, even though every inch of your body wants to run.
None of my situations have ever been a choice. I have never been brave.
These past 6 months I have seen little snippets of myself in my children. Not my big feet before anyone comments. Especially you Karl. Dick.
I have seen them face fear head on, not having a choice but to fight it. And they have fought so bloody hard.
Ellis is renowned within his medical team for being laid back. The kid who just takes things in his stride. Cancer? Come at me. Weak heart? Bring it on. New lump? Mess with me if you dare. He knows that whatever happens, he will fight and that is what is getting him through.
The girls are the same. They talk through their problems open and honestly. They are learning that in a situation where you have little control, they trust themselves and their choices.
They are feisty little people who know their own mind and enjoy challenging themselves. They can do anything they strive for.
I lost my way a little while back. Isolation was in full swing and shielding had just begun. I wasn’t taking any time for myself. From everything I have trained in and studied, I know the importance of some time to yourself. But its very easy to get caught up in everything that’s going on around you and put that to one side.
When I was ill, the gym was my thing. To get onto that treadmill, into that zone. Headphones in, music up. It was my time for reflection and to clear my head. I went in all angry and came out at peace. Then ate a kebab. I mean, I’m not perfect, right?!
I love cars and driving, a naughty RWD would be my kind of medicine for sure, but a drive in a 1ltr Hyundai isn’t quite the same. So that’s that out of the question!
So lately I have been making a conscious effort to get back to it. I’m eagerly waiting for Boris to open gyms so I hit the spin bike again. I have bought myself a step counter to see how lazy I actually am. 55 steps in whole day was an achievement. Lockdown hasn’t been kind to my waistline or to my liver come to that, so I need to sort it out.
Yesterday was my first day of challenging myself to do 10,000 steps a day. Probably easy for most people for a self confessed cake addict with no thyroid, it’s bloody hard! But I did it and it felt incredible. Not so incredible this morning when my legs are aching every time I move.
I know I can be anything I want to be. Not because I’m good at everything, but because I know I have the fight. If I don’t know something, I will learn. If I can’t achieve something first try, I will keep trying. I look at a situation now and think “What is this trying to teach me” and “What is the solution to that’.
This week Ellis is having his chemo as an outpatient. We are staying in an amazing hotel hospital called Cotton Rooms, which is right next door to the Macmillan centre and UCLH. We no longer get to see our lovely nurses and Ross as he is not on the ward 😢 but this is incredible. Sorry Ross 😂
He is with other teenagers, rather than little children which is so much better for him as they all look like him! He is no longer the biggest one!
His actual chemo this week was methotrexate, which only lasts 4 hours. So he had that in the Macmillan centre sitting on a comfy chair surrounded by other teens. It’s lovely in there, the nurses are all so friendly and helpful. They talk to him like an adult which he likes. He has more control over his care too, he measures his own ph levels in his wee and writes down how much every time he goes. It’s so nice to see him owning it, rather than laying in a hospital bed in the dark.
After the 4 hours was up and the methotrexate had finished, he was hooked up to a fluid drip in a backpack, so he could go back to the room or do whatever he wants! Amazing!
With methotrexate he has to clear it all out of his system before he is allowed home, which normally takes 72 hours. So until Saturday we just have to pop back a couple of times a day to change the fluid bag.
No beeping machines, no obs waking him up, no awkward runs from the shower to your bed with no bra on. It is luxury.
We get breakfast in bed, a fridge in our room and an oven in the kitchen so we can both eat real food. I actually don’t want to go home!!
We saw a heart specialist on Tuesday for an echocardiogram and an ECG. The tablets he is on are already starting to work which is great. His oncologist wants to try him on one more Dexamethasone along with some heart protecting tablets and beta blockers. We are a bit apprehensive but she explained that the risk of the cancer coming back greatly outweighs the risk of weakening his heart further. She is having to chose between the two. Awful.
We trust her judgement, so that’s what is keeping us moving forward.
I told them about the lump in his leg and they sent him for an X-ray there and then. In the Macmillan centre, the lower floor is X-ray and scans so we didn’t have to go very far at all. Ellis doesn’t need his wheelchair for mobility, he only used it once after surgery! But due to his heart, he keeps feeling weak. We were coming back from the X-ray and he nearly fainted, so we had to borrow one from the ward. Ross to the rescue again!
It’s sad to see him back in a wheelchair after the amazing progress he has made. It’s amusing to try to push him without crashing and banging his leg, this thing is dangerous!
Dr Maria (his oncologist) cam to see us yesterday and said that something did show up on the X-ray, but they are not worried. My mind can’t even use those two things in the same sentence, but again, we have to trust her. She said she is going to monitor it.
I’ve been my usual non-adult self this week, it’s been comical. I forgot to pack sandals so only have trainers which also means only one pair of socks. I two-dayed them before realising there was a washing machine here. So I made Ellis sit in his pants while I washed everything I could find. After sitting patiently for the machine to finish, I realised I had left one of my socks out. The sole reason I did the wash in the first place. So I threw it in and washed it all again.
As I only have trainers, I wont be donning the Lily Allen look with the dresses I have packed, so I will be wearing the same two outfits all week. Washing in between as long as I don’t forget.
How I have raised children I’ll never know.
All in all it’s a pretty good week.
I have some really lovely friends who have kept me laughing all week, to which I am so grateful. Mainly them laughing at my dickeheadness, but I’m grateful either way.
Because after all, life is easier when you are laughing.