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

We’ve done it!!!

And just like that after nearly 9 months of operations, chemo, hospital stays and much much more…. it’s over.

Ellis has finished his chemotherapy for Osteosarcoma.

I didn’t cry yesterday, I thought I would. But I was so preoccupied with making sure it all went smoothly that it didn’t really sink in. I will have a moment, I’m sure.

But, it’s finally over. We did it.

We looked cancer right in the eye and kicked it’s arse. AGAIN!!!!

Back in December when he was diagnosed, I never thought this day would come. I was terrified beyond words that he wouldn’t make it. He wouldn’t be the 55% to beat it.

The nights I laid awake terrified of what lie ahead, desperately going to my GP to ask for something to help me from spiralling. My first ever counselling session because I knew in order for the kids to be ok, I needed to be ok. The times I shut out friends and family because I was angry that they were carrying on with life, I was so jealous of that. My life was falling apart underneath my feet, yet others were allowed to be ok. The fears of my new job being ripped from underneath me again, as with everything in the devestating wake of cancer.

I have felt so angry during this. Why my son? Why my family again. Why the boy who never complains, who just gets on with it. Why my girls, who have not only had to be told their Mum had cancer, but their brother too.

I have felt guilty. This is the one that gets me the most. It’s my job to protect him, to protect them all. And I haven’t. I have felt guilty when he has broken down and cried. I have felt guilty when Iris has cried because she didn’t want me to leave her yet again. I have felt guilty that I haven’t had time to spend with each of them.

I have been in denial a lot of the time. Like if I can pretend it’s not happening, then it won’t be real. Even during Scans and tests at the beginning, I was telling myself it would be nothing and I was overreacting.

Cancer has tried to destroy us twice now. And twice we have fought back with every single ounce of fight.

As I sit here today, trying to digest all that’s happened I feel an overwhelming sense of pride and gratitude to everyone who has helped us get to where we are today.

To the nurses, physios, play therapists and everyone at UCLH, GOSH and QEQM. For making us feel so safe not only during chemo, but during the pandemic. The enthusiasm for their Jobs shines through and the passion and care they have for each and every child in their care is humbling. I will never be able to thank them enough for what they have done for us.

To my Mum. For being my best friend. She is the first person I called when the doctor phoned me, the first person I tell any new news too. She has soooo many grandchildren, but always manages to make each one feel special. She never judges and will always just listen to my rants and my pointless phone calls just to check in. She knows all the chemo names, all the meds and she knew the treatment plan as well as we did. She did one chemo stay with Ellis pre-Covid, to give me a break and because she wanted to help. The best Mum and Grandma ever.

To Ellis, for being the person who has kept everyone going. Not once has he doubted himself and his ability to fight it. He was up and out of bed the very next day after his operation, walking on day 2, walking up stairs on day 3 and home day 4. He was riding his bike (secretly behind his physios back) on week 9. He is resilient, tough and a real force to be reckoned with. He has inspired me to become better, to become less scared of things. I am in awe of him.

To Beth, for being so understanding. Not seeing her has been so tough. But understanding that we had to shield for Ellis to keep him safe helped me when I felt the worst. She has been the best big sister to Ellis, Lily and Iris and I am super proud of the beautiful, thoughtful woman she is becoming.

To Iris, for using this time to learn. She has struggled the most during this past year. She has learnt that she is resilient and she has been OK even when she was scared. She has learnt all about hospitals and what it takes to look after someone. She is empathetic and wonderfully inquisitive.

To Lily, for being Lily. She just gets on with things, takes things in her stride. She is not afraid to ask questions and will go out of her way to make me feel appreciated. She is always learning, always creating and always challenging herself.

To Glenn, for being my team. Scans, appointments, dates, travels… we’ve done it together. For looking after the girls all those times I couldn’t. For consoling Iris when she wanted me, for sitting with Lily on those nights when I wasn’t there and she couldn’t sleep because she was worried. For saving the day over and over again when transport let us down and when Covid meant you became our taxi, driving to and from London twice a week, unable to get out of the car at the other end.

To Gavin, for being the best co-parent and friend. Most families would give anything to have there relationship we all have. From the boys only fishing with you, Ellis and Glenn to spending Christmas Eve with me in a cold, dark hospital miles away from home making sure I was OK. For never making things awkward and for always putting the kids first. We’ve done it together and for that I will never be able to thank him enough. We have the luckiest kids in the whole world.

To my sisters, Hannah, Vicki and Sophie. For being there no matter what. For keeping Ellis going with the sweets, the homemade lasagne and at the beginning before Covid, sitting with him for me waiting for the nurse. For going out of their way to make me know I wasn’t alone.

To my friends. Oh my friends. They are all fowl mouthed, wine drinking, mums who have kept me sane! From the bottles of wine, to the tea, the cream eggs, the presents, the cards… but mostly the texts. The ones that simply say “thinking of you”. 2020 has given me my very own army. I love it. Thank you.

To the ladies I have met during Ellis treatment, Victoria and Hannah. You are both incredible. We have shared our highs, our lows, our frustration and every single milestone. You have kept me going with conversations that only other cancer Mums will understand. You are the strongest women I have ever met and this shines through in Dom and Phoebe. Just because we have reached the end, doesn’t mean I’m going anywhere. I am so looking forward to seeing both of them ring the bell when it is their turn. Friends for life.

To everyone else. Thank you. Messages from people I used to go to school with who I haven’t spoke to in years, new colleagues who have quickly become friends, you have all helped too. We have felt so supported and so loved. We really are so lucky. They say it takes a small village to raise a child and this has never been more true.

I am ready to get the end of treatment tests out of the way and close this chapter once and for all. I am ready to move forward. I will forever carry things I have learnt during this time, qualities in myself that I have carved and new found ways of making sure my wellbeing and mental health is the best it can possibly be. Life is good. It’s actually more than good. Life is just beginning and I am excited to see what I will achieve.

Whatever life throws at us next (and I’m sure it will) we will be ok. Because in the end, we always are.

Xxx

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

I didn’t choose this year but I choose how to react to it.

“You’ve changed”

Something I have been told lately by someone close to me.

Well of course I have, wouldn’t anyone?

Having faced my worst fears as a parent head on and still coming out the other side is pretty life changing. From that dark day in December when Ellis was first diagnosed to now- nearly at the end of his treatment has provided me with a huge shift in mentality.

Seeing what I have seen, witnessing my boy so close to death right in front of my nose will have a lasting impact forever. The way I process it is, if the worst had happened, if he had died that day in PICU, right at that moment I couldn’t have been anymore scared. I had reached my limit.

This was my 10 moment. The top of my scale.

When you have a life changing illness or condition, you get used to rating your fears and pain on the scale of 1-10. For questionnaires, for yourself, for doctors. Even in my darkest days of my treatment, I never gave a score of higher than a 9. The day I scored 9, was the day I heard the word “You have cancer”. I didn’t give it that score because I was scared for me, I gave it that score because I was scared for my babies. I was terrified I would die and they would grow up without me. I wasn’t done teaching them about the world, shaping them into resilient little people or telling them I loved them. I wasn’t ready. All that pain and I still only scored it a 9.

I was saving my 10, hoping I would never have to use it. But that day, I did. I didn’t realise until that day just how different 10 was from 9. It was a million miles away.

So from here, it has to get better. I have faced my 10 and I am still here. I am still me, just with a different outlook on life. I am a work in progress, evolving and learning. And I love it.

It has got me thinking about blame and responsibility. Two very different things, but too often treated the same.

The blame for this year lied with Ellis’ cancer. But it is not the cancer’s responsibility to determine how I react to it and how I move forward. That responsibility lies with me.

For the past month or so I have been putting lots of effort into making sure I am mentally balanced. I have been re reading an old favourite book of mine called ‘The Subtle Art of Not Giving a F**k’ It was recommended to me a few years ago from an amazing friend who always has my back. 2-3am when I cant sleep, I know I can always talk to him. We studied Mental Health together 7 years ago, so he knew me just before my own diagnosis. There are not many people who I can truly say are my friend for life, but he is. And I am eternally grateful to him for being a friend and for understanding me on a level not many people do.

In the book, the author, Mark Manson, talk a lot about how life is easier when you actually learn not to give a f**k. It’s so true. Not necessarily about peoples opinion of you, but how you view the world, why you do what you do and generally makes you question yourself. I love that. With me, it has taught me that I am in control of my life, the situation isn’t. Things happen, sometimes good, sometimes bad, but ultimately I am in charge of how I chose to feel.

And this year, I choose happy. Despite everything that has happened, despite the fears of what still may happen, I still chose happy.

Does this mean I don’t care? No.

Does this mean I’m not scared? Absolutely not. I still have days where I cry because I am scared or days I can’t eat. It is still very real and current for me.

I am just not letting that define my life. They are parts of my life that unfortunately now will always be there. Every new pain, every new lump and bump with me, Ellis or any of the kids will always be a challenge for me, but I recognise that and accept it for what it is. What is isn’t is something that stops me from achieving my goals, from reaching for the stars and from fulfilling my dreams.

Life the way I see it, is like a game of poker.

You can be dealt the worst hand in the game, but still go on to win. You can beat the best of hands purely based on your attitude, your choice and how much you are willing to risk.

It’s how you play the game. That’s the secret.

I can’t change what has happened this year, I can only learn from it. Out of something so horrendously difficult, I have gained a whole plethora of influential experiences, which I am using for personal growth.

So, yes. I have changed.

I am choosing to be happy.

I am choosing to write my own story.

Xxx

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

The end is in sight

It’s now a week since the worst weekend of my life. Things are a little calmer and life’s a little easier.

Ellis is home and is doing really well. He’s spent most of the time back at home eating sweets in his pants playing Xbox. Living the 12 year old dream!

The girls are incredible and it’s been overwhelming being back at home with them. Iris told me she missed my boobies the most- that kid is obsessed. We’ve spent quality time together having living room discos, watching frozen 2 and playing games. My heart is full ❤️

I’ve had lots of messages from the most amazing people in my life during this last week, which was really kept me going. The random “I’m thinking of you” or “You’ve got this” means more than I can ever explain. I have had socially distanced walks with a very good friend of mine, who no matter what, will drop everything to make sure I am ok. I’ve had another amazing friend (don’t tell her I called her amazing, she’s normally a dick head 😜) who has just been incredible. Texting even late into the night when she knew I needed someone. Making me laugh with her dickheadness and keeping me grounded. Those are the kinds of people that I couldn’t do any of this without.

It’s been hard. Harder than I can explain, but we did it. We got through it together. I can now allow myself to see the end. Things can go wrong very quickly, as last week has taught me, but without hope, what do we have?

The first thing Ellis said to me when he was diagnosed has now been the mantra to this enormous wave we’ve been riding. He said, “What’s the point in being scared, it won’t change anything” and he is right. We have all carried that with us since the beginning. Of course this doesn’t mean we haven’t felt scared at all. Of course we have. More scared that I can describe. The kind of fear that echoes though your very soul, destroying everything in its wake. The biggest fear a parent could ever imagine. But we have used Ellis’ words to help us back up, to control the fear. We won.

So the end is now in sight. Up until now I have been scared to fully allow myself to see it. But there it is. 2 more weeks of methotrexate and possibly a day of the dreaded doxorubicin and he is done! 7 months of the most intense roller coaster of feelings, over. And I am allowing myself to fully believe we will get there.

I know myself that life after cancer is tough. A lot of the time and especially for me, it was tougher than life with cancer.

So this time, I’m in control. I am choosing to be prepared for the last fight against this horrible situation. I have supplied Ellis with as much Information as possible around what support is available for him in terms of counselling etc. I can’t make him do it, but I can give him everything he needs to make an informed decision.

For me, I want to give something back. The individuals that we have met have been incredible. The passion in their jobs and the genuine care they have for us a family is inspiring and something that will stay with me forever. It’s reignited my passion for all things medical and helping people in their time of need.

I want to make a difference.

So on Sunday 26th July I have an interview to become a volunteer for St. John’s Ambulance.

I am aware I have 4 children and I work full time. I’ve been called mad, been doubted and tried to be put off the idea.

But I am stubborn and years of self evaluation know has given me the power to trust myself. I am going to grab the opportunity with both hands and give it everything I have.

When the treatment is over, the hospital stays are no more and we are all back to school and work it will be so difficult to adjust to. Being busy and focused on something for this long- for it to all suddenly stop…. that’s when it gets hard. That when your doubt creeps in, your mind starts to wander and fears rear their ugly heads again. I will not let that happen again. Not this time.

I am going to put every single thing that’s happened this past 7 months and use it for the good.

And I will absolutely smash it. Not because I’m arrogant and big headed, but because know I have the skills to really make a difference.

Xxx

Cancer · Family · Osteosarcoma · Thyroid

I am not what I’ve been through, I am what I chose to become.

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’.

The comeback is always stronger than the setback.

Always.

Xxx

Thyroid

Telling a mum not to worry is like telling water not to get wet.

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.

This is the part that lasts forever.

Xxx

Thyroid

The quieter things become, the more you can hear

So it’s June already. Week whatever the fuck we’re on of lockdown.

I’m struggling a lot lately, with everything but nothing all at once. I have amazing people around me (virtually!) but I miss seeing people.

The girl who hates hugs, would do anything for one!

In December when this all started for us, the thing that kept me going was support from everyone I love. The cups of tea, glasses of wine over dinner, cackling away like desperate housewives. The catch up at the school gates and the listening to everyone else’s lives.

Immersing myself into work kept me going. It gave me a purpose and kept me sane. I made the conscious choice to carry on working. Granted, it took a few weeks of burning the candle at both ends to make me realise that I needed to slow down, but I did.

But now there is nothing. No prezzo dates with the girls, no popping into my mums for a cuppa when I’m struggling, no texts from one of my best friends saying “tea tonight?”. No FaceTime or Zoom calls can ever replace real life.

The time in my life where I need people the most, I feel the most alone.

The hospital stays make you feel even more lonely. You’re there for a purpose; to look after your child. You lose all right to be your own person. You are never called by your name, you are known as so and so’s Mum. I’ve met some lovely parents in the ward, but couldn’t tell you their names.

It’s hard to keep painting on a smile too. Last week I had a wobble and felt like I was on the verge of crying all day. I decided to go for a walk to the vending machine, using the excuse to Ellis that I was getting him some of the drinks he likes. A short walk on my own to clear my head. As I was walking out, Ellis’ lovely physio called me by my name and asked me if I was ok. I nearly cried there and then, it took everything in my power to hold it together. Someone actually called me by my name and not Ellis’ Mum. He genuinely seemed to care how I was. I think I made some mumbling remark about not feeling great, but wasn’t anything compared to what Ellis was going through.

Truth is, I needed a friend. I needed to cry into a coffee there and then. To have a moan and have someone tell me it was all going to be ok. But you can’t do that with a stranger in a hospital ward!

Things will get better, it’s already changing. His treatment ends within the next few months then hopefully life as we knew it will resume.

Until then, FaceTime and snapchat will have to do.

Xxxx

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

The only thing to fear is fear itself

Fear.

What is it?

A feeling that stops you from living the life you want. An easy way out. A safe way out. But never the choice you really want.

A limiting belief.

For the last 6 years, my beliefs have been pushed to their limits. My fight against fear has taught me invaluable lessons about myself and allowed me to start to really explore who I am.

As some of you may have read before, I suffer with anxiety. A lot. Some health related, some family related, some completely and utterly unrelated to anything. But it’s there. Always. Bubbling away until 3am when it hits me all at once.

But then to see your own child brushing off fear like it’s irrelevant, like a choice, it makes you reevaluate the meaning of the word.

Ellis faces fear head on, with a laid back attitude of ‘fuck with me if you dare, cancer’. He is determined and brave in ways I can’t fathom. I am in awe of him.

Whatever he gets thrown at him, he gets up, straightens his cap and carries on. Like a boss.

Maybe fear is less consuming when you have that attitude? Maybe we are all in control of our own feelings after all. Maybe we just have to believe that.

So it got me thinking. What if we are scared of the word. The feeling; Rather than the outcome.

One of the things I am scared of the most, is heights. Absolutely categorically can’t stand them. But why? I couldn’t tell you.

What if I used my fear for something good. What if I faced my worst fear, to help children like Ellis. Children who have no choice but to tackle their fear head on.

So on Sunday 13th September 2020 I will be doing a skydive to raise money for CLIC Sargent.

There are 3 important factors for me in this. The date, the month and the charity.

September is Childhood Cancer Awareness Month. To raise awareness about all of the signs and symptoms of childhood cancers. Ellis will also hopefully be completely free from all treatment by then.

Next is the exact date. 13th September.

13th September 2013 was the date I was officially diagnosed with Papillary Thyroid Cancer. 7 whole years ago.

As many of you know, if you’ve read my blogs before, I never got closure. I was never able to close that chapter of my life and move on. It hung over me for 7 years like a dark cloud, nudging me every so often to make sure I still knew it was there.

I started seeing a counsellor at the beginning of this year and she made me realise I needed this to be able to move on. We spoke a lot about my cancer taking everything away from me, from my career to friends and even my identity. I wanted to do something solid and real that cancer could not take. Like a big “fuck you”. I wanted to have something to allow myself a little cry, to allow myself to reflect on the last 7 years and to allow myself to put it all behind me.

You can’t get more real and monumental than jumping out of a plane at 10,000 feet 😳

The third part is the charity.

Within a few weeks of Ellis’ diagnosis, we were contacted by a charity called CLIC Sargent who support young people and families facing cancer. We were allocated a Support Worker called Becky, who quickly became our lifeline. In a new found world of fear, big medical words and appointments, she kept us grounded. No matter how silly the question (and I’ve asked a few of them 🤣) Becky has supported us 100%. A quick email or text to see how we’re getting on, visits in the hospital (pre Covid-19) and support with work, transport, mental health and wellbeing support. If we had to face it, she was there to support us. She still is. They also have a secure CLIC Sargent parents support group on Facebook, where I have met some amazing parents and children fighting their own battles. We have laughed together, cried together and felt supported.

This journey for me, would not be the same without the amazing work CLIC Sargent do.

They are a charity, so rely on donations and grants etc. But like many other charities at the moment all over the country. They are struggling financially.

They are facing a loss of 60% of their normal income.

I can’t imagine not having Becky and the CLIC Sargent team by my side during our journey and it’s horrible to think that if they lose more income, they might not be able to help others like us.

So there it is. A date, month, charity and reason.

I will face my biggest fear, knowing I can hopefully support them, like they’ve supported us.

If Children like Ellis can look fear straight in the face, then so can I.

I have set up a Justgiving account to raise much needed money for CLIC Sargent. If you would like to sponsor me, you can do so here.

 

xxxx

 

Cancer · Family · Osteosarcoma · Thyroid

Mental health is not fight club…. we can talk about it.

The past couple of weeks haven’t be very good for me. I have been struggling for a while, but didn’t fully understand why. I was trying to be ok, trying to carry on using the excuse ‘because I have to’ but not sure if I was actually trying to convince other people or myself.

So if you’ve read my blog before then you know September was meant to be a huge deal for me. It was supposed to be my last 6 monthly appointment with my oncologist marking the end of my 6 year journey with the big C. We booked an amazing family holiday to celebrate, only for the appointment to be postponed. That date was the light at the end of my tunnel. My fucking long tunnel. The day I dreamed about for 6 years. When it didn’t happen, when he decided to wait another 6 months I was gutted.

I slowly started to accept waiting another few months because after all, the end was still within my reach. The end of tests, hospitals, scans, appointments. The end of Cancer. I could wait a little bit more, right?

Then I got a little too comfy didn’t I. A little too cocky almost.

See with me, cancer means more than just taking my health, it took so much more than that from me. It took friends, my career, dreams, goals. It even took my identity.

Every time I climbed back up, it knocked me right back to the beginning again. But this time it felt different. I felt like I was actually going to win. I had built my career back up and got a job that I absolutely love. I had made some incredible friends who have made losing the dickhead ones so much easier. I had dreams, goals and finally an identity. I was winning at life. So close to sticking my finger up to Cancer and saying “I win”.

Then December happened. Not my journey this time, but still a journey I have to ride regardless.

I couldn’t face starting again. This time with my child, which is a million times harder. The guilt I felt was intense. Was it my fault? Are my genes to blame? I couldn’t see a way of coping other than going on auto pilot.

“This time, I have to be the strong one” I thought to myself multiple times a day. I had little people who were scared, counting on me. I had a point to prove to people at work that I wasn’t unreliable and I was grateful beyond words for the opportunity they had given me.

I knew I had to keep spinning the plates, not letting any fall. The parties, the after school clubs, the train journeys, the chemo, the heartbreaking conversations, the appointments, the millions of tests…. I was juggling a hundred different things while going at a million miles per hour… because I had to.

Until I realised that I couldn’t. I physically couldn’t. Something had to give and if it didn’t, everything would crash around me. I felt defeated. Again. That oh so familiar feeling.

I needed to stop.

I’ve had a few weeks to think, to process my thoughts. I’ve started counselling to help me with my jumbled up thoughts and overwhelming feeling of guilt that I can’t shift. I have been to my GP to get some tablets to help me sleep and help with my anxiety.

I am more than this. I deserve more than this. I am a work in progress.

I have my long awaited appointment in 2 weeks and regardless of Ellis’ situation, I am going to turn and up finally close the door on that chapter of my life. I have recognised that in order to be in a good place for Ellis and the girls, I need to be in a good place myself.

So here’s to Cancer not winning. It never did. No matter how hard it tried, how hard it pushed me back down, I’m here.

And I’m fucking ready to fight it again, this time with a bigger army behind me 🖕🏻💪🏻

Xxx

Cancer · Family · Osteosarcoma · Thyroid

This is going to be tough

It’s finally Saturday, finally the day when round 1 of 18 finishes and he can come home.

I cannot begin to explain how slow this week has gone and how much I miss him.

Because I have been speaking to him via FaceTime all week, I was kind of prepared to see him looking pale and weak. But it was still horrible. He was excited to see us and to go home so he had more energy than he had had all week but it soon started to wear off as the sickness crept back in.

We were given his medications, all TEN of them. They explained what needs to be taken when, which I weirdly took in. My 1 year as a student nurse was coming in handy!

We live 2.5 hours away from the hospital, so I made sure he had his home pillow and blanket for the car. For nearly the whole journey home, he laid his head on my shoulder. He was so eager to get home, whereas I was secretly enjoying the moment. Rare time where he not just needed me but wanted me. He was my little boy, just for that small journey. I almost didn’t want to get home.

As soon as we got back he went straight up to his bedroom where I helped him take off his shoes and get into bed. Being an almost teenager, he has a double bed in his room which made it simpler when he asked me to sleep in with him. He said he didn’t want to be alone.

So I’m laying in his bed with him, jumping up when he’s sick to help clean him up, hug him and tell him I’m here.

He may be as tall as me, full of attitude and a teenage grump, but in this moment he’s my boy.

He’s got a long road ahead of him, we all have. I am now a carer as well as working full time, being a mum to the others and a wife. I have to manage all his meds and his huge sheet of instructions, Organise new appointments when they come in and liaise with the community nurse team, who will visit daily for his injections.

But we have done week 1 of 29.

28 to go.

We’ve got this 💪🏻💛

Cancer · Family · Osteosarcoma · Thyroid

Today is not a good day. But thats ok.

Today can literally suck my hairy balls. Ok so not literally, but it still can.

I have had what feels like 3 hours sleep in the last 3 weeks. Topped off by the obvious work, financial worry, job worry, feeling like I’m being torn between whats best for Ellis, feeling torn between my children, trying to stop myself crying in random places because that shit is becoming a habit and trying to work out whether I’m going insane or whether I even was sane in the first place.

I have had about 3000 phone calls today, all with different information, different appointments and different parts of the fucking world so it seems. All of which I have now completely forgotten about.

Going back to yesterday, his appointment at UCLH to check his kidneys. We had to travel up by train just the two of us, which I was dreading. I’m not very good at adulting at the best of times, so I was genuinely worried we would end up in Scotland or something. But we did it. One exhausted mum on the edge of crazy and one not quite teenager, hobbling around London on crutches he can’t use.

His GFR (Kidney check) was ok and went as expected. We spent most of the time eating hospital food (or not in my case, because gluten free food in a hospital is rare to say the least) and playing ‘guess the name’ of the people walking past the window. In a weird way it was nice to get quality time with the boy, as he hates anything outside of his bedroom that doesn’t involve the xbox.

In the afternoon, we were met by a fertility clinician from a trust in Oxford. They spoke frankly and openly to us both about the chemo being so aggressive that its quite possible he will be left infertile. So on Monday, he will be having an operation to preserve some sperm for when he is older. Amazing.

He also starts Chemo Wednesday, so he will be staying in hospital from Sunday-Sunday. We have decided that logistically, it’s best for his Dad to go up and stay the week with him. I have never felt so torn in my whole life. I feel sick to my stomach. Every fibre of my body is aching for me to go, but I am needed here too, for the girls. Lily is 10 and she’s not coping very well with it all. She asked me, through tears, if Ellis was going to die like Grandad Mike and Grandad Joe (both my grandads who we lost last year to cancer). By far that was the hardest conversation I have ever had. I am having to separate ‘want’ and ‘need’. I ‘want’ to go up with him, but at the same time I don’t ‘need’ to. His Dad is more than capable. They will be fine. Me on the other hand, will be a wreck.

Ellis told me he is excited to go because there is an xbox on the ward and he will be fed. Simple things. His positive attitude is worrying me now. He’s been super upbeat and positive about every single thing so far, joking to the consultant that he won’t be the only person in this house with no hair, when he loses his for chemo (for those who don’t know, my husband is follicly challenged lol) I am almost waiting for a more human like response from him in the form of a breakdown.

I’m not even the one who is ill this time, so I feel like a fraud for moaning. But this is hard. I am not sleeping, not eating and look homeless most of the time.

I’m going to allow myself to have today, it’s been written off as a failure anyway. Fuck you, Friday. But tomorrow will be better.

I am going shopping tomorrow for last minute chemo bag things, including new pants because who doesn’t like new pants?! Then get my eyes tested because apparently I can no longer see, then dinner with the little one, my husband and two amazing friends. She is pregnant so as I good friend, I will be having her share of wine. Be rude not too, right?!

If I have learnt anything in the last 6 years it is that after a shit day, is a new one. Maybe it’ll be better, maybe it won’t. But just knowing it’s new is a start.

xxx