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.
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’.
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.
Hi everyone. My name is Gem and my friend suggested to me that I should write a blog so here goes!
I am 33 and a Mum to 4 beautiful children. I am also a fiancé to Glenn, who over the past years has been my absolute rock.
In 2013 I was a studying a degree in Mental Health Nursing which I loved, with an amazing future ahead of me. I had 3 small children who depended solely on me for everything. In the January after just a few first dates with Glenn, I found a lump on my neck. I booked into my GP straight away only to be told it was an inflamed lymph node and not to worry. Two weeks later it was still there so I went back. This happen 3 more times until I was taken seriously and was referred to a specialist. This was the beginning of 4 years of letters I couldn’t understand with medical jargon consuming the whole page. I would attend where and when told and not have a clue what to expect.
My first appointment was with a lady who said that it feels fine and will “probably” be nothing. I will never forget the uncaring nature of her voice, like I was holding her up and making her late for lunch. I explained to her that it was getting significantly bigger with time and was now pushing on my windpipe, making breathing hard at night. She reluctantly referred me again to another consultant and booked me in for a biopsy.
Biopsy day came quite quick as looking after 3 children and attending 35 hours of placement a week was consuming every waking hour and was just what i needed to take my mind of things.
At my next appointment I was told that my biopsy results came back negative and that they weren’t going to do anything more. I pleaded with the consultant saying the same as before, that it was getting bigger and getting in the way of breathing at night time. After a while he agreed for me to have a hemithyroidectomy, which is just removing half of the thyroid gland, the side where the lump was, but only for cosmetic reasons. If i hadn’t have pushed they were quite happy to let it be.
It took a few months to get an operation date through which by this time was scheduled for 29th July. Six whole months since I originally went to see my GP.
I was terrified on the morning of the operation. Glenn drove me to the hospital which was 45 minutes away. The longest 45 minutes of my whole life. I was checked in, given the sexy green stockings and told to wait for my name to be called. My operation lasted 10 hours and was a success. They managed to get it all and it hadn’t spread out side of the thyroid gland. I later found out the Glenn had sat in the same chair in the waiting room the whole time I was gone, just waiting for me. I will never begin to understand how scared he must have felt that day. But he stayed, for me.
At some point after the operation and after 3 lots of anti sickness drugs had kicked in I was told it didn’t look like cancer. I remember even writing a status on Facebook letting everyone know I was ok and that it was benign. Oh how wrong they were.
By now it was the summer holidays and I had missed so many days of placement with appointments etc, that I had to work 3 out of the 4 weeks of august to complete it. It meant not spending the summer with my children, but this was a sacrifice I was willing to take to better my future, our future.
Early September I received a letter in the post which was addressed to my GP from my consultant to confirm what they had found. The letter was filled with medical terms which I didn’t have a clue what they meant so I just briefly scanned over it, with the intention on filing it with the others. However, the second paragraph through up some familiar words. ‘Carcinoma’ and ‘tumour’ stuck out like a saw thumb, but even then I couldn’t work out if it meant I had it or didn’t have it!
My appintment seemed to take forever to arrive. Friday 13th September. Unlucky for some but for me, I never believed in superstition. I got called in, Glenn by my side keeping my mind busy with his silly jokes! We sat down and the consultant didn’t even look up. He proceeded to read my notes as if we weren’t even there. He finally looked up and it was like a horrible joke. He muttered the phrase ‘It was cancer…..’ as soon as I heard him say those words my eyes filled with tears. I instantly felt like I was going to be sick and my ears started ringing. I’ve read before out when people are diagnosed and hear the word Cancer they don’t hear anything beyond this point, but I didn’t realise it was such an intense physical pain. I thought I was going to pass out. Glenn was amazing, he stayed calm, listening to what was being said while at the same time reassuring me. I honestly would not have got through that day if he wasn’t there. When I finally composed myself the consultant looked at me and said “But it’s ok, it’s the good Cancer” I’m sorry, what?! Please tell me what part of what I have just heard and felt was good?? I couldn’t believe he thought that was a nice thing to say.
The next few weeks were a blur. I was numb. I completed my hours on placement which meant I passed my first year at uni. I didn’t feel proud, I couldn’t feel anything. I pretended I was ok to people around me because i could see they were worried for me. I had to be ok for my children. Three little beautiful innocent babies. I wouldn’t dare let myself think about the C word, I felt weak if I did and felt I was letting them down. Everyone kept telling me how strong I was being and how brave I was. I didn’t feel worthy of being called brave. I had Cancer. Was it something I did? Was it something I ate? Am I being punished for something?
Two weeks went by and I had a phone call on a Friday evening saying I needed to go in for another operation, this time to take the other side out, leaving me with no Thyroid at all. The first thing I thought was ‘here we go again’. More childcare needed, more disruption, more time off uni. I just wanted to feel normal again. I was so sick of hospitals and doctors and bloody medical jargon filled letters.
This time the operation was closer to home where I had a private room. The operation itself was quicker only a couple of hours I think and again Glenn sat and waited outside. In all of this i never took the time to ask how he was. How was he coping with it all. The same month we got together was the same month it stated. Our whole relationship didnt know any different. Will he always think of me as a patient? Did he only stay because he feels sorry for me? All i know is if it wasn’t for him, my best friend, my rock, i couldnt have done it. This time I took a while to come round. My blood pressure plummeted to 85/60 and it took 5 anti sickness medicines to stop me from being sick. I felt like I had been run over by a bus. But the Cancer had gone.
A few weeks later I met another consultant who told me about a clinical trial run by Cancer Research which I was eligible to enter if I wanted. It was to see if RAI iodine treatment made a difference to patients with Papillary Thyroid Cancer which is what I had. Without having to think I signed up and was put into groups. It turned out that my group was chosen to have the RAI treatment. This involves taking a pill which made me radioactive for a few weeks! The downside was I had to be in complete isolation. By this time it was late November. I was still at uni achieving great grades on my assignments and tests and Christmas was just round the corner. I was introduced to Karen, my trial nurse. Little did I know how much I would look forward to seeing her in the months/years to come. She was so understanding of the fact I had children and that I needed to be at home at Christmas time that she scheduled my in for the RAI in the January. A whole year after my journey had begun. Two weeks before i was due to go back in, I had to go on a special diet which contained low iodine which turned out to be in everything! (I did cheat on my Christmas dinner because I decided that that didn’t count 😂)
Christmas 2013 was the hardest time of my life. Way harder than the operations and being diagnosed. Uni has finished for the year, treatment was all on hold so there was nothing to occupy my mind. So I started to feel again. I have a fantastic relationship with my ex husband, the children’s father. I remember sitting one night, when the children were all in bed to wrap up their presents and I cried. I couldn’t stop. I text my ex husband and gave him instructions as to what to do next Christmas for the children if I wasn’t here. We use a different colour wrapping paper for each child so they know who’s is whose. We put the tree lights on before they wake up, so they go downstairs and see the presents lit up underneath. It was the most painful conversation I have ever had. The thought of my children growing up without me, forgetting about me. It was unbarable. I sobbed and sobbed the whole night. I felt guilt, anger, sadness and I suppose grief. I grieved for the person I was exactly a year before. I missed her.
Christmas came and went.
The date arrived for my radiation. I told the children that they were having a long sleepover at grandma’s so they were happy. I arrived at the hopsital only for them to tell me they had forgot to order the pill. I cried. Again. I was so angry. Today was one of the most important days of my life, a day that I had been dreading for 2 months and they forgot?! I was re booked in for the following weekend which meant more uprooting for the children, having to explain why I was back and trying to make them feel safe and settled.
A week later I was back. I was shown into a tiny room which was like a prison cell. Glenn was told he had to leave me at this point. I wouldn’t see him again for 4 days. They gave me the pill to take. It was the size of a small child! Weirdly my biggest worry at that moment was I hope I don’t dribble the water down my tshirt! (I’m a bit of a dribbler.I choke on nothing around twice a week 😂)
The pill was swallowed successfully, Tshirt was dry (result 👍🏻) and the door was closed. In my room I had a en suite bathroom. In reality it was a cupboard with a toilet and a shower in. Everything was covered in cling film to stop contamination while i was radioactive. In the main part of the room there was a bed, a tiny tv and a table. Again, everything covered in cling film. I have never been so scared and felt so alone in my whole life. The hours blurred into one long Jeremy Kyle binge, the only thing to make my life seem normal. Meals were thrown through a tiny opening in the door. It was like prison.
The day came when I was finally allowed out. I was allowed home and in the same room as Glenn and the children, but we had to be at opposite ends. My youngest was 3 at the time and I had to explain to her that mummy can’t cuddle her right now. It was horrible.
I thought that was the end of my journey. Little did i know it was just the beginning. Life without a thyroid is tough. Life after cancer is tough. But nothing is as tough as that first year. 2013 is the year I lost everything but gained so much more in return.
If you have got the the end of this insanely long blog then thank you!
I would love to share my journey with others to raise awareness, to meet people on a similar journey and even if I make one person feel like they are not alone in this I will be happy.