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.