Cancer · Family · Osteosarcoma

Life is easier when you’re Laughing.

This week Ellis is having his chemo as an outpatient. We are staying in an amazing hotel hospital called Cotton Rooms, which is right next door to the Macmillan centre and UCLH. We no longer get to see our lovely nurses and Ross as he is not on the ward 😢 but this is incredible. Sorry Ross 😂

He is with other teenagers, rather than little children which is so much better for him as they all look like him! He is no longer the biggest one!

His actual chemo this week was methotrexate, which only lasts 4 hours. So he had that in the Macmillan centre sitting on a comfy chair surrounded by other teens. It’s lovely in there, the nurses are all so friendly and helpful. They talk to him like an adult which he likes. He has more control over his care too, he measures his own ph levels in his wee and writes down how much every time he goes. It’s so nice to see him owning it, rather than laying in a hospital bed in the dark.

After the 4 hours was up and the methotrexate had finished, he was hooked up to a fluid drip in a backpack, so he could go back to the room or do whatever he wants! Amazing!

With methotrexate he has to clear it all out of his system before he is allowed home, which normally takes 72 hours. So until Saturday we just have to pop back a couple of times a day to change the fluid bag.

No beeping machines, no obs waking him up, no awkward runs from the shower to your bed with no bra on. It is luxury.

We get breakfast in bed, a fridge in our room and an oven in the kitchen so we can both eat real food. I actually don’t want to go home!!

We saw a heart specialist on Tuesday for an echocardiogram and an ECG. The tablets he is on are already starting to work which is great. His oncologist wants to try him on one more Dexamethasone along with some heart protecting tablets and beta blockers. We are a bit apprehensive but she explained that the risk of the cancer coming back greatly outweighs the risk of weakening his heart further. She is having to chose between the two. Awful.

We trust her judgement, so that’s what is keeping us moving forward.

I told them about the lump in his leg and they sent him for an X-ray there and then. In the Macmillan centre, the lower floor is X-ray and scans so we didn’t have to go very far at all. Ellis doesn’t need his wheelchair for mobility, he only used it once after surgery! But due to his heart, he keeps feeling weak. We were coming back from the X-ray and he nearly fainted, so we had to borrow one from the ward. Ross to the rescue again!

It’s sad to see him back in a wheelchair after the amazing progress he has made. It’s amusing to try to push him without crashing and banging his leg, this thing is dangerous!

Dr Maria (his oncologist) cam to see us yesterday and said that something did show up on the X-ray, but they are not worried. My mind can’t even use those two things in the same sentence, but again, we have to trust her. She said she is going to monitor it.

I’ve been my usual non-adult self this week, it’s been comical. I forgot to pack sandals so only have trainers which also means only one pair of socks. I two-dayed them before realising there was a washing machine here. So I made Ellis sit in his pants while I washed everything I could find. After sitting patiently for the machine to finish, I realised I had left one of my socks out. The sole reason I did the wash in the first place. So I threw it in and washed it all again.

As I only have trainers, I wont be donning the Lily Allen look with the dresses I have packed, so I will be wearing the same two outfits all week. Washing in between as long as I don’t forget.

How I have raised children I’ll never know.

All in all it’s a pretty good week.

I have some really lovely friends who have kept me laughing all week, to which I am so grateful. Mainly them laughing at my dickeheadness, but I’m grateful either way.

Because after all, life is easier when you are laughing.

Xxx

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

No choice but to fight when you feel like flying

Today Ellis has his 3rd echocardiogram in the same amount of weeks, to check if the chemo has damaged his heart.

His oncologist is still not happy about letting that chemo carry on because of the weakness in his heart, so we’ve got another appointment next Monday to meet again and discuss. More petrol, more parking on an already stretched budget. She spoke about starting him on some new drugs to protect his heart… oh the irony. The same drugs she told us about 2 months ago but never gave to him.

Instead of this weeks chemo, they are bringing next weeks methotrexate chemo forward to tomorrow morning. So he needs to stay there tonight. Something they probably could have told us yesterday.

They are completely unprepared, no bags, nothing. My husband has taken him in the car because hospital transport were going to pick him up at 4.45am. But my husband had to go back to work this week, the very week it all gets that much harder. Wonderful timing.

I can’t do chemo with Ellis because we have no childcare, now Glenn is back at work, so Gavin is having to get the train up there, during a pandemic when we are meant to be shielding. Completely not logical, but apparently it’s our only option.

This week has been so hard. I have sat on my bed this morning and just cried.

I’m so done with it all and having to be strong. It’s so hard under normal circumstances, but during a pandemic it’s so much harder.

Ellis has also been told he has to do ambulatory care, so he wont be going back to the ward. The ward where it all started, the ward that felt like home in a fucked up kind of way. He will have different nurses, no lovely physio and none of the other families to talk to, the ones who we have built up lovely relationships with. We didn’t even get a chance to get any of their numbers to keep in touch.

It’s almost like cancer has seen us quietly sailing and getting on with it and decided to fuck with us again.

How long can someone be strong for without cracking?

Not rhetorical, genuinely interested to know, because I think I’m pretty close.

My girls are sitting in the background going through it just as much as us, no matter how much we try to shield them from it all. They see us all coming and going, they must sense when things are tough or when days liken today happen. I am always honest with them about everything because I think it’s important, I don’t hide feelings from them. We talk openly about how they feel and there are days where they say they feel sad, but don’t know why. We comfort them and reassure them by telling them its normal to feel like that as long as they talk about it. They are simply amazing.

We don’t even have a clear end date now. Due to the doxorubicin being delayed we don’t know what they are going to do. We don’t even know what is going to happen next week. We can still only have 1 person with Ellis at appointments due to Covid, so that one person has to relay all the information onto the ones left at home. It’s a huge responsibility for that person to have.

It’s Ellis’ birthday in August and his goal the whole way through was to be done by then. He wanted his PICC line out so he can go swimming and he wanted a big party to celebrate the end and him turning a teenager. It makes me so sad to think that wont happen.

Sadly our story isn’t the only one. So many families like ours are struggling. A world that has been tipped on its head, has been tipped further by Covid.

We have always been so pleased with Ellis’ care as they have been fantastic, but they are clearly struggling now too. The communication is non existent, the rules seem to differ depending on where you live and whoever checks you in. One lovely Mum I speak to, has mentioned this too. Glenn and Ellis were made to have Covid swabs before they went into the building but she has been told she doesn’t need one, despite agreeing to have one. They are sat opposite each other in the same room. Some people are wearing masks, some aren’t. No one really knows what is going on.

As I write this Glenn has just told me that Ellis has to now have yet another Covid swab, even though he had one prior to admission.. but Glenn and Gavin don’t.. it’s all very bizarre.

I would just like it to all stop, just for one day. Just to give us the chance to breathe and collect ourselves. I feel like we are hurdling at 100 miles an hour with out feet not touching the ground.

My head hurts so much, my eyes hurt from crying. 6 months in you would have though we would be owning this shit by now, but it feels like it’s getting harder and harder.

This week was also meant to be Ellis’ week at home. He looks forward to this time when he’s at hospital and it gets him through. He spends this time playing on his Xbox with his friends, mainly in his pants lol. He gets the chance to just be a kid.

Because Ellis is so tall and acts old, people forget he is only 12.

12 years old.

He is not even a teenager, but has had to grow up so fast. I feel like he has been robbed of his last little bit of childhood. He is mature beyond his years, polite, funny and so bloody sarcastic. I just wish he could have that last little bit of childhood back. I’m not ready for him to grow up. Not when it’s not his choice.

Life for us will never go back to how it was. But there are good parts to that, too. Cancer hasn’t taken everything from us.

The bond we all share as an extended family is incredible. Not only do we all co parent, but we are friends too.

Very long ranting blog today. But I always said I would document everything so we can look back in years to come with a sense of pride in how far we have come.

I can’t wait for that day.

xxx

 

Cancer · Family · Osteosarcoma

What we want you to say

Finding out someone you love is ill is hard. You don’t know what to say or if you do you don’t know how to say it.

When Ellis was first diagnosed we were inundated with lovely well wishing messages from people we didn’t expect, which was so nice. And ironically for me, it’s been those unexpected people who have maintained contact even up until today.

One of my best friends text me on the evening of Ellis diagnosis and he simply said:

“I have been thinking about what to say for ages, but can’t find the right words. Just wanted to tell you that.”

This was the best message I could have asked for. He was letting me know that he’s thinking about us, but not trying to fix it. I’m still not sure he knows how much that text meant to me.

Then we have family and friends who don’t even ask us any anymore, like the novelty has worn off. Don’t be this person. This person makes families like us feel alone and forgotten about. No you may not know what to say, but don’t just not say anything. Feeling like we are alone is way harder to deal with than you possibly saying the ‘wrong thing’ believe me.

The quick “how are things” or “how is he doing” keep us going.

We can’t fight this on our own. We are still people too, regardless of the situation.

It is very hard not knowing what to say to someone, so it is sometimes easier to forget about it all. But we’re not forgetting. We know who has been there the whole way through. The people who have checked in on us, chatted to me at 3am when they’ve noticed I’m online and can’t sleep. The people who phone about something else, but their first question is “how’s Ellis”.

Then there are the family and friends who don’t know what to say, but want to say something helpful. So they research. They research the treatments, the side effects, the ways in which they can help. These people are amazing.

When you are in this situation it’s like you live in 2 different worlds. You have home life with friends and family and then you have hospital life where you talk in medical terms, possible outcomes, logistics of getting to each appointment time.

Just by being that friend who has taken some time to quickly google the process and take time to understand the basics, you are being more supportive than you realise.

It’s the little things that families like ours want.

Just to feel connected. To feel understood.

And more important to feel thought of.

If you know someone who is going through an illness or bereavement please text them. Just a simple “Thinking of you”. Or “Hope you’re ok” will mean the world to someone who feels alone.

We don’t need someone to fix us, but simply to say “I’ve got you”.

We would much rather you admit you don’t know what to say, than say nothing at all.

Ask us.

Ask us what we need.

I bet it isn’t as scary as you think.

Xxx

Cancer · Family · Osteosarcoma

Enough now.

Not really sure where to start.

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.

Excellent.

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.

Xxx

Cancer · Coronavirus · Covid-19 · Family · Lockdown

Incase you forgot, we are still in the middle of a pandemic

I’ve woke up this morning feeling so angry.

Comments on Facebook about how the virus ‘isn’t real’ or ‘just like the flu’.

People I considered friends, encouraging others to go out to ‘boost their immune system’.

Belittling the hard work that families like mine have been doing to shield for the past 10 weeks.

Using their own delusions of grandeur to make us feel inferior and that our decisions are based off of the Daily Star articles 🤦🏼‍♀️

There no two ways about what I am about to say. Ellis’ prognosis was only 55%.

I will let that sink in.

55% chance that my amazing, funny, caring boy would have of surviving the next 5 years.

I’ll say it louder for those at the back

FIFTY FIVE PERCENT

If your child had that prognosis, wouldn’t you want to keep them safe? Or would you laugh in the face of danger and be careless because you feel like the rules don’t apply to you?

It may not be relatable to you, you may see similar articles and think ‘ah that’s sad, but wouldn’t happen to me’. But it could. And to us it very much has.

Even with all my blogs, I could never make you understand just how hard it is for parents like us, but I will continue give it a good damn go.

No, my son cannot go out to boost his immune system. The aggressive chemo that he has, every single week destroys his. No amount of sun and fresh air can stop that.

No, we haven’t been going to shops. We’ve had days where we’ve had to make up random freezer odd dinners because we are shielding.

When he is home, he is more often that not neutropenic. This means his white blood cells that are used to fight infections, are dangerously low. His body wouldn’t be able to fight a slight cold, let alone covid.

So why would we take that chance?

I was asked today, quite rudely, if we shielded before the pandemic and if we didn’t then why are we now. Because after all, it’s just the flu, right?

I’ll tell you a quick story.

When Ellis was at the beginning of chemo, he was in the house, for about an hour, with someone who was developing chicken pox spots before our eyes. We whisked him quickly out of that situation and followed the protocol we had been given. He was immediately admitted to our local children’s ward where he stayed for 4 nights. He had antibiotics, antibody tests and other blood tests. Chemo was nearly delayed, but they managed to go ahead just in the nick of time. He was in hospital all in all for 8 days that week.

All because he could have been exposed to it.

That was on top of everything else he is fighting, physically and mentally.

Yes it’s been long and boring for everyone. I read somewhere a quote that stuck with me;

“We are all riding the same wave, but not all in the same boat”.

Everyone has experienced this pandemic differently, everyone has different circumstances.

So to blindly share social media posts about how people who are doing things differently are uneducated, is frankly ironic.

Education has nothing to do with it.

I couldn’t tell you in depth about my sons condition, or the effect covid would have on his already frail body.

But can I protect him? Absolutely.

It makes me sad to see what is happening, so soon after the be kind hashtag was trending.

Just be kind. Be nice. If someone does something you don’t understand or agree with, let them be.

You never know how your flippant comment or share could effect someone who is already struggling.

Xx

Cancer · Family · Osteosarcoma

The bits no one talks about.

As always in my blogs, I will be as honest as possible. I have always wrote them from a Mum point of view, rather than Ellis’ as I feel that is his story to tell if and when he wants to.

So obvious bits aside, what is life really like for a Mum of a child with cancer? Of course it’s hard, emotionally it drains you. You feel helpless and useless while your child lays there, relaying on strangers to make them better.

But what about the parts no one talks about in fear of coming across like they are not coping or not strong?

No one talks about the guilt or the anger.

No one talks about the side effects of all the drugs.

No one talks about the effect it has on your own mental health or how you sit their hungry, not eating because you don’t want to or can’t leave your child.

Ellis has a drug called Dexamethasone alongside his chemotherapy. It is a steroid normally used for Lupus, arthritis and those kinds of conditions, but with children like him, they use it as one of many anti-sickness medicines.

It is mood altering and can turn the most placid, laid back child like Ellis into a moody, angry monster. He has been the worst this week with it, being snappy, rude and plain nasty.

I try my hardest to remind myself its not him, its the Dex but it’s so hard. Due to Covid, we are isolated up here, so I don’t even have other mums to chat to. I try to occupy myself with Corrie catch ups or Netflix, but it’s impossible to take my mind off it.

Due to the Dex, he is demanding to the extreme. I will always help him when he is feeling poorly, but it’s so hard when he is being rude. He demands things like ‘put my bed up’ when the control is attached to his bed and I’m all the way across the other side of the room. He will demand toast, then refuse to eat it when I get back. Or decline anything when offered when I go to make a tea, then change his mind as soon as I am back.

I know it sounds like I’m being horrible to him, I’m not. I’m being horrible to the Dex and the other bunch of drugs that he has pumping through his system. I miss my Ellis, the sweet laid back boy who is thoughtful and funny.

It is only temporary, he has refused any more Dex as he knows how it makes him. He hates it. Which makes me feel more guilty for moaning.

All he wants to do today is lay in his bed in the dark, watching you tube on the projector, which is fine. But it’s pitch black 24/7 so my body has no idea what time of day it is. My head is pounding from no asleep and being a general dogs body and I’m so hungry. The children get fed here, but adults don’t. I used to go to the shops everyday for a little walk and to get my food for the day, but because of Covid I can’t. We are still shielding until June 30th, so I haven’t been into a shop since March. You get a tiny square in the big fridge to use, but its not big enough to store anything worthwhile. Because I am gluten free, it makes it all that much harder. Ellis will order food, then when it gets here he doesn’t feel up to eating it, so it goes to waste as I can’t eat it. So I live off scraps of veg or chicken that he’s ordered that happen to be gluten free.

You get used to brushing your teeth in warm water as that’s all the bathrooms have for some reason. You work out ways to negotiate the awkward walk back to your bed after a shower, walking past other rooms and patients, hoping you have remembered to put your bra on. You get used to doing your make up with no mirror, trying to preserve even the tiniest bit of something that makes you feel like you.

It is like being in prison in here. I know that sounds dramatic and it’s Ellis who has it the worst, that’s why it’s never spoke about maybe. But I know I’m not the only Mum who feels this way.

I’m not saying there needs to be a bar and a salon in kids wards, but that would be nice.

It’s these bits that I wish were talked about. The bits you have to figure out on your own- mainly by trial and error ( thinking back to my first in-hospital shower, when I forgot to take in a towel..) The little bits of support that would make us parents not feel so alone.

It should be spoke about more, parents should be able to have a moan without fear they will be judged or frowned upon.

So judge me if you want.

If I can make one parent who read this, not feel like they are alone, then job done.

Xxx

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

I can conquer the world with one hand, as long as you’re holding the other…

Once in a while, right in the middle of an ordinary life, love gives us a fairy tale.

Mine was in the form of a skinny ginger man 8 years ago. The same year I was diagnosed with cancer, the same year I had never needed anyone more.

This man changed me, saved me from the chaos that was happening around me. He made me want better, he made me want to fight.

I love music and almost use it as therapy when times are tough. One of my favourite memories of that first year, was seeing Mumford and Sons at a festival, just the two of us. Where hippies were everywhere, Red Bull was £9 a can and we didn’t have a care in the world. For that moment, we were us. No matter what was going on with my health, money strains or career worries, we were there in that moment and it was perfect.

There is one song that will always remind me of Glenn and that day and it’s Mumford and Sons- After the Storm. The lyrics are:

“And I took you by the hand and we stood tall. Remembered our own land, what we live for. There will come a time you’ll see, with no more tears and love will not break your heart, but dismiss your fears. Get over your hill and see what you’ll find there with grace in your heart and flowers in your hair..”

From that moment on, whatever life threw at us, I knew we would be ok. We had each other. But before we had time to think, we were whisked into a life of hospitals, operations and battles. Little did we know, it would be the first of many.

We supported each other, talked, listened even sometimes when we didn’t want to. We fought it together and it made us stronger than ever. The days I wanted to give up and couldn’t take anymore, he was there lifting me back up. The conversations with the kids, the heartbreaking decisions I had to make in case of the worst, he was there by my side. My operations that both lasted 7-9 hours, he sat and waited for me, making sure he was there when I woke up.

Just when we thought we were back up on our feet with money, careers, me being finally discharged from the hospital after 7 long years, it happens all over again. But this time 10 times worse.

There were days in the beginning of Ellis’ diagnosis where I sat and cried uncontrollably on my bed. I couldn’t stop. I couldn’t and didn’t want to believe what was happening. I couldn’t talk, even to Glenn, I shut him out. I couldn’t think of anything else other than what was happening right then. Glenn sat with me. He waited until I was ready and even to this day I have never told him how grateful I was for that. He let me deal with it however I needed to, but letting me know he was there.

We are all coping with things a lot easier now, it almost becomes your norm. We do both still have our bad days and cry, but on the whole we are getting through it. It has made us all more aware of how we feel, the importance of talking things over, being mindful of how others are feeling and learning and growing in our own ways.

I am incredibly proud to be Glenn’s wife, without him by my side, I would be nothing. He is determined, ambitious and so so generous. He is always putting me and the kids first in everything he does. He makes me want to be the best I can be, the best we can be as a family. We may not have much in life in the way of assets or material things, but we have each other. There is nothing that I would trade that for.

Not even Phillip Schofield.

(Well ok, maybe Phil, but shhh)

Xxx

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

You’re not stuck in, you’re safe. There is a difference.

I’m fed up of seeing people out and about soaking up the sun with no care in the world, when we have to continue to shield until the end of June.

Iris’ friends will be starting go back to school, while she has to stay off. Try explaining that to a 5 year old who misses her friends.

In an already hard time, Covid-19 has made it harder. A lot harder.

We clean lots. And I mean lots. Disinfectant, bleach, sprays. All to keep germs at bay. Normal day to day germs that wouldn’t affect you and I, but to someone with no immune system, could be bad. Desperately trying to make sure he doesn’t get a fever and end up back at our local children’s ward, because we know he is safer at home. Using your gut instinct, so commonly talked about amongst my ‘cancer mum’ friends about how to keep them safe. On edge with every single ring little cough, raised temperature or new symptom, each time thinking “Could it be Covid” even though he is screened regularly for it.

Ellis is not himself this week, he’s struggling. He feels sick, his mouth is full of blisters, his saliva is thick and gloopy, his bones hurt from the GSF injections, his little hair that started to grow back gave him false hope and has fallen out again. His eyes are sore, his chest hurts and stomach hurts and he feels sick. These are the “normal” symptoms he has had since the chemo started, the things he has accepted are now just part of his life.

On his rare time off chemo, we would love to take him out for the day to get some fresh air and exercise.

To visit family to help him feel part of everyone like he’s not doing it alone. To give him something to look forward to when he’s in the ward, crying his eyes out because he feels alone.

To treat him to something simple like an ice cream down the beach, something we used to do regularly. Something to bring comfort in his ever changing fast paced life.

To meet his friends and feel like a kid, rather than a patient.

All I see over Facebook is healthy people moaning about being “stuck in”.

You’re not “stuck” anywhere, you are safe. Your children are safe. Your loved ones are safe.

Being “stuck” is being on a hospital ward for 72 hours each week, not even able to go to the toilet on your own because you are attached to 4 drip machines. It’s having to have drugs pumped into your body, which poison you and make you feel rubbish but at the same time save your life. It’s longing, aching to go home, to the place everyone else feels like they’re stuck.

I wish our problems were just feeling stuck indoors, in our safe home, with our health.

Im trying to be ok and get on with things, but some days are tough. Some days I write off before the day has properly begun because I juts know that I have no fight. But that’s ok. I know we all need to allow ourselves to feel how we need to feel, as long as there is an end point.

A lovely friend, a lady of a boy with osteosarcoma too, told me about something she does. When she is struggling she will think of one thing she is grateful for, one positive thing. She said it works and helps her, so I am trying it too.

One thing I am grateful for despite all this is quality time with my family. I love them all so much and love our little family unit.

But I don’t like my husband when he challenges me to 30 days of yoga.

Especially when I realise why the instructor has over 5 million views. Yoga pants don’t leave much to the imagination.

We’re on day 4 and I’m considering filing for a divorce.

I’m not even joking.

Xxx

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

Half way through 💛

He did it.

Half way through his MAP treatment plan.

He’s had 2 operations, 1 biopsy, 2 kidney function tests, 3 rounds of chemo (which is 9 lots), 3 CT scans, 2 MRIs, 3 audiology tests, 2 echocardiograms, 1 specialist dental appointment and 20 blood tests. That’s insane seeing it all written down.

He’s come so far in such a short space of time, which makes me sad but proud- a real mix of emotions.

It’s robbed the last little bit of his childhood and made him grow up.

We were looking through holiday pictures from California the other day, which was only last October- one month before it all happened. He was so little and innocent.

Now he does his own injections, he makes important decisions about his health and care, he knows what medications to take and when (including knowing all the names of them), he has had the hardest most grown up conversations with strangers about fertility and choosing to go through an operation to preserve his. He is even sitting now doing school work.

He makes me prouder with each obstacle that’s put in his way.

But he is finally half way. We all are. At the top of this huge mountain that was thrown at us with great speed and force.

So Cancer, you tried to break us AGAIN, but haven’t. We are stronger than we ever realised, every single one of us. The girls have learnt that’s it’s ok to be sad and worried and more importantly that it’s good to talk about how you feel and it’s good to recognise your emotions.

We’ve learnt that we are allowed to crumble and there is no shame in asking for help. We have faced our worst fear head on, something no parent should ever face. but we have come out the other side.

Ellis has learnt resilience and that he can achieve anything he puts his mind to. He has also learnt that he is loved, so loved, by lots and lots of people. The gifts, the cards, the well wishes all lift him up when he’s feeling down.

So we are now on the home stretch. The last leg. 3 more rounds, 9 more chemos, 20 more blood tests, 1 new drug, 1 new injection and a whole load of end of chemo tests.

As long as we have each other, we will get through it.

Xxx

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