So this week I have been a bit quiet in the world of social media. I’m still alive, I’m not in an alcohol induced coma, don’t worry. I’ve been a real life grown up this week.
I have been concentrating and working hard on something that means a lot to me.
When Ellis was discharged from intensive care at Great Ormond Street and back to our local hospital, we were picked up by two lovely men from St John Ambulance, because Covid-19 meant that the NHS has been stretched to its limit. The two men were amazing. They put us both at ease, one was even commenting on how cool Ellis’ scar is and making him laugh. They were genuinely nice people.
These men were volunteers. They did what they did because they wanted to. That blew me away.
In a worldwide pandemic, where most peoples first thought is to run and hide, these men had voluntarily put themselves on the front line.
It made me think about how unique my situation was. I had been in hospitals during the whole pandemic, I know the ins and outs of the hospitals Covid-19 procedures and I’ve lived and breathed a Covid-19 positive environment.
Just like Cancer, Covid-19 doesn’t scare me.
I could help.
With that along with my vastly growing skill set of mental health nursing and counselling I genuinely think it would be something I could use to give back.
So last month I signed up to enquire about volunteering for them.
And today, after a month of interviews, inductions and training courses I’ve done it. I have qualified as a SJA First Aider ❤️
Without Covid-19 I would be getting ready to go to events to provide first aid with an amazing team, but they have all stopped. SJA volunteers are being called on in hospitals, care homes, blood donation facilities…. anywhere help is needed. This is where I will be going.
I have had the most surreal time getting to this point. I have made some amazing new friends who have kept me sane during some surreal moments 😂 and reassured me on days like today where I have been terrified of failing.
I have ordered my uniform, ready for me to get stuck in.
2020 hasn’t all been shit.
It’s been the year where I lost everything, but gained so much more.
A year where possibly, I might have got a bit carried away with filling up my spare time…. working full time, completing my counselling course and now being a SJA First Aider.
But hey, it wouldn’t be my life if it wasn’t a tad bit excessive and out of the ordinary 😂
I’m happy. Happier than I’ve been in 9 long months. I’ve used the dark days and turned them into something amazing.
I am proud of myself and I’m not ashamed to say it.
And just like that after nearly 9 months of operations, chemo, hospital stays and much much more…. it’s over.
Ellis has finished his chemotherapy for Osteosarcoma.
I didn’t cry yesterday, I thought I would. But I was so preoccupied with making sure it all went smoothly that it didn’t really sink in. I will have a moment, I’m sure.
But, it’s finally over. We did it.
We looked cancer right in the eye and kicked it’s arse. AGAIN!!!!
Back in December when he was diagnosed, I never thought this day would come. I was terrified beyond words that he wouldn’t make it. He wouldn’t be the 55% to beat it.
The nights I laid awake terrified of what lie ahead, desperately going to my GP to ask for something to help me from spiralling. My first ever counselling session because I knew in order for the kids to be ok, I needed to be ok. The times I shut out friends and family because I was angry that they were carrying on with life, I was so jealous of that. My life was falling apart underneath my feet, yet others were allowed to be ok. The fears of my new job being ripped from underneath me again, as with everything in the devestating wake of cancer.
I have felt so angry during this. Why my son? Why my family again. Why the boy who never complains, who just gets on with it. Why my girls, who have not only had to be told their Mum had cancer, but their brother too.
I have felt guilty. This is the one that gets me the most. It’s my job to protect him, to protect them all. And I haven’t. I have felt guilty when he has broken down and cried. I have felt guilty when Iris has cried because she didn’t want me to leave her yet again. I have felt guilty that I haven’t had time to spend with each of them.
I have been in denial a lot of the time. Like if I can pretend it’s not happening, then it won’t be real. Even during Scans and tests at the beginning, I was telling myself it would be nothing and I was overreacting.
Cancer has tried to destroy us twice now. And twice we have fought back with every single ounce of fight.
As I sit here today, trying to digest all that’s happened I feel an overwhelming sense of pride and gratitude to everyone who has helped us get to where we are today.
To the nurses, physios, play therapists and everyone at UCLH, GOSH and QEQM. For making us feel so safe not only during chemo, but during the pandemic. The enthusiasm for their Jobs shines through and the passion and care they have for each and every child in their care is humbling. I will never be able to thank them enough for what they have done for us.
To my Mum. For being my best friend. She is the first person I called when the doctor phoned me, the first person I tell any new news too. She has soooo many grandchildren, but always manages to make each one feel special. She never judges and will always just listen to my rants and my pointless phone calls just to check in. She knows all the chemo names, all the meds and she knew the treatment plan as well as we did. She did one chemo stay with Ellis pre-Covid, to give me a break and because she wanted to help. The best Mum and Grandma ever.
To Ellis, for being the person who has kept everyone going. Not once has he doubted himself and his ability to fight it. He was up and out of bed the very next day after his operation, walking on day 2, walking up stairs on day 3 and home day 4. He was riding his bike (secretly behind his physios back) on week 9. He is resilient, tough and a real force to be reckoned with. He has inspired me to become better, to become less scared of things. I am in awe of him.
To Beth, for being so understanding. Not seeing her has been so tough. But understanding that we had to shield for Ellis to keep him safe helped me when I felt the worst. She has been the best big sister to Ellis, Lily and Iris and I am super proud of the beautiful, thoughtful woman she is becoming.
To Iris, for using this time to learn. She has struggled the most during this past year. She has learnt that she is resilient and she has been OK even when she was scared. She has learnt all about hospitals and what it takes to look after someone. She is empathetic and wonderfully inquisitive.
To Lily, for being Lily. She just gets on with things, takes things in her stride. She is not afraid to ask questions and will go out of her way to make me feel appreciated. She is always learning, always creating and always challenging herself.
To Glenn, for being my team. Scans, appointments, dates, travels… we’ve done it together. For looking after the girls all those times I couldn’t. For consoling Iris when she wanted me, for sitting with Lily on those nights when I wasn’t there and she couldn’t sleep because she was worried. For saving the day over and over again when transport let us down and when Covid meant you became our taxi, driving to and from London twice a week, unable to get out of the car at the other end.
To Gavin, for being the best co-parent and friend. Most families would give anything to have there relationship we all have. From the boys only fishing with you, Ellis and Glenn to spending Christmas Eve with me in a cold, dark hospital miles away from home making sure I was OK. For never making things awkward and for always putting the kids first. We’ve done it together and for that I will never be able to thank him enough. We have the luckiest kids in the whole world.
To my sisters, Hannah, Vicki and Sophie. For being there no matter what. For keeping Ellis going with the sweets, the homemade lasagne and at the beginning before Covid, sitting with him for me waiting for the nurse. For going out of their way to make me know I wasn’t alone.
To my friends. Oh my friends. They are all fowl mouthed, wine drinking, mums who have kept me sane! From the bottles of wine, to the tea, the cream eggs, the presents, the cards… but mostly the texts. The ones that simply say “thinking of you”. 2020 has given me my very own army. I love it. Thank you.
To the ladies I have met during Ellis treatment, Victoria and Hannah. You are both incredible. We have shared our highs, our lows, our frustration and every single milestone. You have kept me going with conversations that only other cancer Mums will understand. You are the strongest women I have ever met and this shines through in Dom and Phoebe. Just because we have reached the end, doesn’t mean I’m going anywhere. I am so looking forward to seeing both of them ring the bell when it is their turn. Friends for life.
To everyone else. Thank you. Messages from people I used to go to school with who I haven’t spoke to in years, new colleagues who have quickly become friends, you have all helped too. We have felt so supported and so loved. We really are so lucky. They say it takes a small village to raise a child and this has never been more true.
I am ready to get the end of treatment tests out of the way and close this chapter once and for all. I am ready to move forward. I will forever carry things I have learnt during this time, qualities in myself that I have carved and new found ways of making sure my wellbeing and mental health is the best it can possibly be. Life is good. It’s actually more than good. Life is just beginning and I am excited to see what I will achieve.
Whatever life throws at us next (and I’m sure it will) we will be ok. Because in the end, we always are.
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?
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.
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.
These two pictures of Ellis leg. The first one is a few months ago and the second one is today.
Scar has healed so well and he is getting some muscle definition back. His has no bone the whole length of the scar, it’s all titanium.
Being a cancer mum you notice everything. Every slight bruise, lump or bump.
I sent these pictures side by side to a few people and no one noticed it. The lump. The hard ball of god knows what that has appeared under his knee.
He has no bone there at all, so it can’t be bone. It feels exactly like the original lump.
Panicking is what I do best, so this I was good at.
I go straight to our notes to look for a phone number. But for who? Who do I phone? The surgeon? The oncologist? The CNS? The ward? I have no idea!
We are in tomorrow for his other chemo but 24 hours is long time for a worried Mum.
There is no protocol for this. No plan in place incase this happens. We have a plan incase he has a fever, that’s a drill we have completed enough times now to make it Familiar, but this….. I’m lost.
Do I wait until tomorrow and speak to the nurses then? Or do I ring around until I get to speak to someone. Do I insist he gets an MRI today and try to negotiate yet another London trip with the girls in tow?
The community nurse has just been and she can’t flush his lines so she thinks they are blocked too. 👍🏻 We would normally have to go straight to rainbow ward to have it unblocked, but the nurse said we can wait until we are up there tomorrow for them to do it. That saves Ellis another trip and means he gets 2 full days at home.
Worrying is one side effect of cancer that no one tells you about.
Last week Ellis had a routine echocardiogram for his heart. He has one before each chemo cycle to make sure his body will be able to cope.
The echocardiogram showed borderline LV systolic impairment. This means the left ventricle of his heart, which pumps the most blood around his body, is becoming weak. The ventricle isn’t contracting like it should therefore doesn’t pump blood with enough force to push it around his body.
So the drugs that are saving his life are damaging his heart.
He had another appointment today (4th journey in a week) with the hope of starting chemo.
But his oncologist has expressed her concern and he can’t start today. They have delayed his chemo by a week. He has to go up again next Monday to have another echocardiogram with a heart specialist.
Just when you think you’re sailing on the calm, another storm comes. You foolishly lead yourself into feeling complacent with the situation, like you have some kind of control over what’s happening. You sail along actually daring to think you’ve got this.
But with cancer, you never have. Not really.
You find ways to help you manage, little comforts to help you feel safe but in the end cancer is always in charge no matter how much you fool yourself.
With every bit of news, every needle, every operation you think to yourself, enough now. Enough of putting my child through the pain. Enough of the emotional ups and downs and the explanations as to why cancer chose him. Sometimes I want to curl up in a ball and cry with him. It’s not fair.
The boy with the kindest heart in the whole world has been told his is borderline failing.
But is he worried? Not at all. He’s a soldier on a mission.
Whatever is thrown at him, he doesn’t bat an eyelid.
Cancer? No problem.
Metal implant? Not scared.
Borderline heart failure? Bring it on.
I am in absolute awe of this boy.
But please, even for a child as resilient as he is, enough now.