Day 9,10,11 – Cancer we Hate You
The last 3 days have been a lot to deal with, we knew they would not least because being at home, being almost normal made it really feel like the week in hospital was a bad dream.
So what’s happened in 3 days…
Bilbo has had X2 blood tests, X1 cannula in, X1 cannula out, X2 general anesthetics, X1 lumbar puncture, X1 line insertion, X2 chemo, X1 platalet transfusion, sterioids twice a day, gastro medication daily and observations throughout each hospital visit.
On Tuesday we met the oncology team at Milton Keynes. Dr Aye and Jodie our key worker for treatment in MK, they were both fabulous. I was in the right frame of mind to tackle a recap of what exactly is going on. We walked through the treatment plan, the different types of chemo meds etc. Jodie talked me through the support we can expect from MK and reassured us no end. I left feeling much better about understanding the current process and procedures.
Unfortunately the situation for Bilbo wasn’t as pleasant. He needed to have his bloods done cue trauma for him.
The worst part of this journey
I can confirm through our experiences this week that there is nothing worse than hearing your most precious little human screaming, suffering and crying out your name. Asking you to make the medical team stop, telling them to go away “I’m tired” “I don’t like it” etc etc. And when the noise stops his eyes still tell me everything.
For those who don’t know Bilbo well, he is the same as me, his eyes are big and wide and he can’t conceal how he really feels. The combination of the sounds and the look, crush us. And has continued to crush us on Wednesday and again today.
In one long week Bilbo now has a fear of needles and in particular the cannula has caused a lot of stress. It’s hardly surprising but when every treatment involves it in some way you can quickly understand that stress levels are high. He also has a gastro tablet that is causing ridiculous amounts of stress it comes in tablet, he can’t swallow it. We’ve been crushing it but it sticks or has lumps, it tastes gross and night after night it is breaking my heart negotiating ways we can get him to take it.
We just have to hold him tight, sssshhhh in his ear stroke his face, tell him how brave he is and how this will make him better. It feels shit!
In direct contrast to the morning we were able to arrange to meet some of Bilbo’s friends at the park after they finished school. With his hand bandaged up with to protect the cannula, we joked about him being a pirate with a hook. He had the biggest grin on his face as he played stuck in the mud, hugged his friends and was able to have some normality.
Wednesday saw us return to Oxford. At 6:30am the sat nav said we’d arrive at 7:25. And then we hit traffic…my stress levels began to rise we were supposed to be at the hospital for 8am – we finally made it at 8:20am.
Bilbo was on the list for his first lumbar puncture and his first general unaesthetic. Being on the list means nil by mouth (NBM). NBM for a child isn’t easy, NBM for a child on steroids is stressful, almost as soon as we got into the car Bilbo was complaining of being hungry…as we sat in traffic he complained of being hungry and as soon as we arrived at hospital he was complaining of being hungry…
As per usual everyone in the team on Kamran ward put us at ease ready for his procedure, he cried not because he knew what was happening but because the sleepy medicine was going into the cannula. And just like that he was asleep.
It was quick and before we knew it he was out, awake and up eating toast and cheese sandwiches.
As the newbies I took a moment to reflect the day unit has 5 beds and some shared seating…it was full and as one child woke up and got up they were stripping the bed ready for the next one…other 5 year olds, toddlers, babies, older kids, girls, boys – cancer doesn’t discriminate.
But hold on a minute a conveyor belt of BABIES/CHILDREN being put to sleep for invasive procedures WTAF!!! A stark reminder that cancer sucks F**K you cancer. And also a reminder I’m still not classing myself fully in the cancer club as I look at other poorly children and tilt my head and get tears in my eyes and then realise that’s us too!
I registered to give blood
I stole some time away to hunt down a parcel that had been delivered to the hospital but hadn’t made its way to the ward.
My walk took me via the blood donation center for the hospital. And I popped in to see if I could register myself and make an appointment. Not many places do platelet transfusions but you can at John Radcliffe.
As I stood giving my details my eyes wandered to the people relaxing hooked up to the platelet equipment. Suddenly I couldn’t breath, then my eyes welled up and hot tears came from no where. Right in the middle of the blood donor reception I was a blubbering mess. They ushered me into a room and gave me some water. I was mortified and a little embarrassed, but then super proud of the people I could see.
I wondered if they had any idea just how important what they were doing was? How eternally grateful I was to them for providing us with precious liquid gold. Find out more about donating here. I will be back next Wednesday to give blood.
Wall of Love
We were home by lunch and as we pulled up we met the postman he was weighed down with a pile of letters for Bilbo…such thoughtful, beautiful letters, cards and gifts. A heartfelt thank you. Our wall of love is taking shape nicely.
Bilbo was on the list again today, but he needed his platelet transfusion before he could have his line procedure. Again the topic of conversation was food, when could he have food and what food would he have once he was done. Unlike yesterday we had to take him down to radiology for his treatment. I carried him the whole way as he was already tearful, fearful and upset. We left daddy in the waiting area. He screamed as soon as they started to even look at his hand, he gripped me and shouted “mummy no” like Wednesday he was suddenly silent. I laid him down kissed his forehead and was ushered out. My heart ached, my bottom lip quivered, my poor baby.
Rich and I took some time out to get some breakfast and I let it all out, whilst I waited for my cheese toastie in pret I sobbed. And when we sat in the little parent room on the ward I also sobbed. I’m sobbing right now. I F**King hate this situation, I hate that my baby is so poorly, I F**king hate the journey to Oxford (even though i’m not the one driving) I hate the F**king gastro tablets I have to crush every night. And tonight I can’t bare the fact this is at least 3 and a half years of our lives. HOW ARE WE GOING TO COPE?
I HATE this life
So there you have it, I hate this life that has been chosen for us.
I hate that I was so excited my son got to have a line put in because it is better than a cannula, how is that a thing. I hate that when we get a glimmer of a smile from Bilbo today when he was allowed to pick from the bravery box. I am surrounded by families on their own shitty cancer journey. Cancer does discriminate it picks all the bloody nice people to pick on…
Ray of Light
After 3 shitty shitty days the knock on the door from my good friend Lex saved us tonight. She came bearing freshly made bolognese sauce from her slow cooker. The beautiful tree made at Tippy Toes by Harrison, the teachers and Bilbo’s friends made my day and the bath time with Harrison where we sang and danced to Baby Shark made it all a little less shitty.
We now have 4 days at home before we start the next round. We have to keep an eye on Bilbo’s temperature religiously to make sure he doesn’t get sick or get an infection. I’m terrified for him to sleep on his own as the chemo he had today is gross. I need to wear gloves when I help him to the toilet and make sure I wash him. And there’s a sick bowl on the side.
We don’t know what is in store for the next few days, time will tell…
How can you help?
Keep being there for us, keep supporting us the way you have been and please, please, please donate blood if you can.