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.
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?
It’s now a week since the worst weekend of my life. Things are a little calmer and life’s a little easier.
Ellis is home and is doing really well. He’s spent most of the time back at home eating sweets in his pants playing Xbox. Living the 12 year old dream!
The girls are incredible and it’s been overwhelming being back at home with them. Iris told me she missed my boobies the most- that kid is obsessed. We’ve spent quality time together having living room discos, watching frozen 2 and playing games. My heart is full ❤️
I’ve had lots of messages from the most amazing people in my life during this last week, which was really kept me going. The random “I’m thinking of you” or “You’ve got this” means more than I can ever explain. I have had socially distanced walks with a very good friend of mine, who no matter what, will drop everything to make sure I am ok. I’ve had another amazing friend (don’t tell her I called her amazing, she’s normally a dick head 😜) who has just been incredible. Texting even late into the night when she knew I needed someone. Making me laugh with her dickheadness and keeping me grounded. Those are the kinds of people that I couldn’t do any of this without.
It’s been hard. Harder than I can explain, but we did it. We got through it together. I can now allow myself to see the end. Things can go wrong very quickly, as last week has taught me, but without hope, what do we have?
The first thing Ellis said to me when he was diagnosed has now been the mantra to this enormous wave we’ve been riding. He said, “What’s the point in being scared, it won’t change anything” and he is right. We have all carried that with us since the beginning. Of course this doesn’t mean we haven’t felt scared at all. Of course we have. More scared that I can describe. The kind of fear that echoes though your very soul, destroying everything in its wake. The biggest fear a parent could ever imagine. But we have used Ellis’ words to help us back up, to control the fear. We won.
So the end is now in sight. Up until now I have been scared to fully allow myself to see it. But there it is. 2 more weeks of methotrexate and possibly a day of the dreaded doxorubicin and he is done! 7 months of the most intense roller coaster of feelings, over. And I am allowing myself to fully believe we will get there.
I know myself that life after cancer is tough. A lot of the time and especially for me, it was tougher than life with cancer.
So this time, I’m in control. I am choosing to be prepared for the last fight against this horrible situation. I have supplied Ellis with as much Information as possible around what support is available for him in terms of counselling etc. I can’t make him do it, but I can give him everything he needs to make an informed decision.
For me, I want to give something back. The individuals that we have met have been incredible. The passion in their jobs and the genuine care they have for us a family is inspiring and something that will stay with me forever. It’s reignited my passion for all things medical and helping people in their time of need.
I want to make a difference.
So on Sunday 26th July I have an interview to become a volunteer for St. John’s Ambulance.
I am aware I have 4 children and I work full time. I’ve been called mad, been doubted and tried to be put off the idea.
But I am stubborn and years of self evaluation know has given me the power to trust myself. I am going to grab the opportunity with both hands and give it everything I have.
When the treatment is over, the hospital stays are no more and we are all back to school and work it will be so difficult to adjust to. Being busy and focused on something for this long- for it to all suddenly stop…. that’s when it gets hard. That when your doubt creeps in, your mind starts to wander and fears rear their ugly heads again. I will not let that happen again. Not this time.
I am going to put every single thing that’s happened this past 7 months and use it for the good.
And I will absolutely smash it. Not because I’m arrogant and big headed, but because know I have the skills to really make a difference.
After 2 nights at Great Ormond Street in Intensive care, we are now back at our local hospital. His blood pressure needs to be stable on his heart meds, before we can go home.
Every single person we have met have been incredible. From the doctors, the nurses, ambulance driver who kept making us laugh to the cleaners who work tirelessly making sure more than ever now, that everything is clean.
When faced with a situation like we’ve been in, it’s very hard to hand your baby over to someone else to care for, no matter how big they are. Relying on these amazing people to make him better, to monitor him closely to make sure he is safe and to make decisions about his life based on a few notes.
At UCLH where Ellis has his chemo, the team feel like family to us now. Even during the worst of the pandemic, they carried on working, leaving their own fears at the door, ready to care for the children. They have continued to smile, to laugh and do their job with the utmost care and skill. T11 North at UCLH, I cannot thank you enough for what you have all done for us. 7 months of chemos, test, operations and visits. You have made us feel safe, valued and in control of this horrendous rollercoaster of a year. You have taught Ellis not not be afraid and to fight, because he wasn’t in it alone.
The staff here in Rainbow Ward in QEQM Margate are absolutely amazing. The nurses are all so kind and not only make sure Ellis is ok, but that I’m ok too. Because of Covid, we are not allowed to leave our room so we both get food brought into us. We cant use the parent kitchen either, so the little walks around to get a tea a few times a day, to stretch my legs and get a change of scenery can’t happen. The lovely nurses have been offering me teas and coffees on top of their own already stretched workload. They are amazing.
The cleaning team work tirelessly to make sure the hospital is clean and safe.
The ambulance drivers both times, were both great. They were happy and jolly and kept making us laugh. They made me feel at ease in the worst situation of my whole life. I will be forever grateful for that.
Our team of community nurses who visit us weekly are just something else. We chat like friends and they nag Ellis is only a way a Mum would! They tell him to drink more, to wash more, to do homework and exercise. They genuinely care about him and it’s very heartwarming to see.
My Mum is a community Nurse and she makes me proud every single day. She has the hardest days that I can’t begin to imagine, she carries her work home with her in her heart because she genuinely cares. She has been scared for Ellis as much as me during this, but she gets up each morning, puts on her uniform and goes to work. My Mum hates to be called a hero and thinks she doesn’t deserve the title. But she is my hero. Now more than ever.
The NHS and it’s staff deserve more than a clap. They deserve to be paid what they are worth.
I have had 5 days in a mask and it’s unbearable, I can’t imagine how they must feel.
They are scared the same as us, they have children the same as us and they want to hide just as much as us. But they can’t. They show up for their long shifts and care for our families right on the front line during this pandemic. They are incredible.
If you know a nurse, thank them. Thank them for putting others before themselves and pushing through their own fears. Because without them, things could have been very different.
It’s currently 1.39am and I’ve just got into bed. I am in a parent accommodation next to Great Ormond Street Hospital, where Ellis is laying in intensive care.
I don’t even know where to start. So bear with me.
Ellis was tested positive for Covid-19 on Thursday morning. As well as being in the middle of chemotherapy for Osteosarcoma.
Today his temperature spiked. He was so angry at me, but I knew we had to go to our local hospital. We followed the normal protocol we are given, but making sure I mention 100 times that he has covid.
He arrived to an amazingly safe ward, the nurses were the absolute best. They made us feel at ease straight away.
The first obs showed that Ellis was still 38 but she thought the blood pressure machine was broken. No one can have blood pressure that low.
It was 78/38.
That’s as a low as a baby. Not my huge man child! They checked again…. and again and again. It started to get busier rather quickly from this point. His heart was struggling so it’s a good job we came in when we did.
Before we knew it, he was being whisked away to HDU with all kinds of wires coming out of him. In the space of an hour he had 4 antibiotics pumped into him, 2litres of fluids and an oxygen mask. He had two failed attempts at a cannula, because his veins were just non existent. I genuinely thought he was going to die.
They came in and told us he was going to be blue lighted in an ambulance to Great Ormond Street Intensive Care.
The wait was about 4 hours until they got there and during this time Ellis really started to perk up. He sat up and asked to go to the toilet. The nurses were discussing amongst themselves where to find a wheelchair from for him, because someone with blood pressure that low wouldn’t be able to walk. Meanwhile, Ellis was bowling around the corridor, into the toilet like a boss. No one could believe it.
He then came back and started eating sweets and crisps…. all the while his heart hasn’t improved. The Ellis charm that he is renowned for at UCLH and GOSH was in full swing. The nurses loved him! They even asked him to at least pretend to be ill when the ambulance arrived!
The ambulance came with 2 doctors in. The did. lots of obs on him trying to get a better picture of what was happening. She said his bloods were showing an infection of some kind, a bad one, but they don’t know where it was coming from.
She wanted to do an artery cannula, which is exactly what it sounds like. Ellis hates his wrists being touched or anything on them, so he started to panic. They normally do them under anaesthetic, but because of his BP they said it wasn’t safe. So she injected local around the area and proceeded to single handedly create the single worst moment of my whole entire life.
Ellis was in agony as she routed around trying to find his artery. He was screaming in pain, telling her to stop. His eyes were blood red and he looked terrified. There was blood splurting out everywhere, it was terrifying. She pulled the cannula out and apologised. There was blood on the bed, up his arms and on her visor.
All I had eaten in the last 3 days was a couple of bananas and some porridge. The sight of him absolutely terrified and the sheer volume of the blood took its toll on me. I fainted.
Not there and then, I know too well what it feels like so I recognised the signs of my vision going, my hearing going and feeling so hot I felt like I was in fire. So I walked out.
I left him.
I left him crying, terrified and needing me. What mum does that? When I came round I felt sick with guilt. How could I just leave like that? Why can’t my body work like a normal body just this once. I had to have some water and a fan before I could get back up.
Back in the room, Ellis was in bits by this point and due to covid I was having to sit the other side of the room and just watch. Until this time.
This time was even worse. She was digging around with this huge needle, ignorant to the fact his BP had shot right up, she was shaking and couldn’t breathe.
Not having that. Not my baby.
So I got up and covid went out of the window. I grabbed him, wiped his tears and told her to back the fuck up. He has had enough.
He lay in my arms sobbing in the way that only a toddler would. It was horrendous.
No one hurts my kid.
She sheepishly went out of the room to phone an anaesthetic to come and do it. By this time Ellis was inconsolable. There was no way I was letting her try again. Over my dead body, bitch.
Three professionals all in his room, all trying to persuade him to ‘try one more time’. Not happening. Not with Mamma Bear in your way. He was safe.
Turns out they didn’t need it after all. They can just monitor him.
We then got into the ambulance and were taken to GOSH- our home from home. The weirdly familiar smell and the font of the writing. I felt safe.
He was wheeled directly to Paediatric Intensive Care, which is called Dolphin ward. It was very surreal. A once full, busy unit… empty.
I had to wait outside while they settled him in and got him onto a comfy bed. The nurse with was lovely, her name was Grace. She told me that she would sort my accommodation out for me.
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.
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.
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.
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.
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.