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.