Day 4: Reward Charts, Leaflets and Pooh
I don’t think i’ve paid much attention to things like a Macmillan Cancer Support leaflets before, but then i’ve never been the mother of a child with cancer before…today I picked one up.
I spotted it on my long walk to M&S (this hospital is amazing in more ways than one) to pick up some dinner. Rich took H home around 5pm and left my mum and I to get Bilbo settled ready for bed and settled for the night. The walk was helpful because I used it to think, to just be on my own. Make mental lists.
Tonight I mostly thought about what a crapper of a day it has been and little did I know it was going to get worse before I got to sit and write it all down.
The thing is cancer is shit…and today it has been shit in the literal sense too.
About last night
Posting about Bilbo’s illness last night felt like a huge weight. The love and support has really lifted our spirits and confirmed what we already knew – we have the best friends and family. The comments also softened the blow of an over 20mile out of my way route home from Oxford due to missing a turning and a closed A5. I was listening to a hilarious podcast The Guilty Feminist because I needed the laugh and music would probably turn me into the opening scene of Bridget Jones Diary or Sad from Inside Out.
By the end of yesterday I had no tears left and a banging headache – plus I love a good podcast feel free to share your favs in the comments below I have a feeling I will need some more on my playlist.
Being home felt weird. I immediately felt guilty for not being with Bilbo and then felt guilty for feeling guilty as I knew H hadn’t seen me since Monday morning.
Apparently mummy guilt quadruples when your kid has cancer – AWESOME!
Rich had let me know Bilbo had also had a nightmare and then taken a long time to get to sleep. He started steroids yesterday and we know they will affect his moods and sleep. He’s also in a strange place and connected to “the robot” Rich was able to calm him down with cuddles but I felt so far away.
What day of the week is it…Thursday?
4 days in i’ve already lost the plot on days of the week. Days and dates mean little it is all about what does today entail what is happening next and “have you eaten?”
After some good sleep I felt good but as the day has progressed and we’ve watched Bilbo every step of the day, I am exhausted and in the last hour my heart has shattered a bit.
We don’t know what we’re doing?
We’re day 4 of course we don’t but i’m sure we’re writing the text book right now on how not do the your kid has cancer thing…we’re bribing Bilbo to take his yucky medicine with sips of diet coke. We have a star reward chart that once completed means a new piece of dino lego and we’re talking a “big bit” not the teeny tiny boxes. But you know what I don’t give a crap, because right now I just got to get through this week and get him kicking cancers butt before we can start thinking about how we manage this longer term. So i’m handing stickers out like their candy because a. sweet bribes aren’t working and b. this stuff isn’t easy.
Bilbo looked puffy, he looked different. That is a combination of all the fluids he’s getting to flush his system (mostly for his kidneys) and the steroids starting to work. He was pretty despondent even Harrison playing peekaboo didn’t really lift his spirits.
H took it in his stride but the room is scary and his brother is in a big bed surrounded by tubes and wires and funny noises.
The highlight of my day was when we were all trying to work out how Bilbo’s bed was moving backwards and forwards. Bilbo kept saying “who’s doing that” we thought it was him joking but no little old H had shimmered down the bottom of the bed and had found the big control panel and was having a whale of a time pressing the buttons. (it is the small things that keep you sane)
Bilbo needed another blood transfusion, these give him a little more energy so as soon as it kicked in we headed to the playroom. Bilbo’s energy didn’t last long.But H loved the home corner.
The thing about being on Day 4 is you’re the new kid on the block…everyone needs/wants to talk to you. So Bilbo’s room has been a revolving door. Doctors, nurses, the play team, a teacher, a physio, a music man, the cleaner, the porter with food. I have a notebook now for names and jobs. I use the notebook to make lists and to make notes about treatment. Bilbo has medicine orally (which he hates) he has anti sickness meds, he has chemo, more fluids, more blood. It is never ending and it is exhausting keeping up and it is ONLY day 4.
And truth be told i’m not keeping up. I have a pile of papers to read, a book about ALL and a book for Bilbo. My mum had read snippets to me tonight and i’ve shut it out. Because I know when I start reading, this will all stop being about the fun ward with the lovely kids room. And a tubes of different coloured liquid feeding into Bilbo and it will be about him having the big C word and me having to be a grown up. There I said it I’m not feeling very grown up right now and whilst we’re on confessions the real highlight of my day was when both the boys napped at the same time!
Day 4 sucks because weve also seen Bilbo is starting to suffer. He doesn’t want to eat…but he needs to eat to take meds. He needs to pee all the time due to all the fluids, the chemo is an irritant on your skin so if we don’t clean him he will get sore. He is tired and grumpy yet every time he’s comfortable or sleepy we wake him for more meds, or prodding and poking him for observations…or in the case of the last 20 mins he’s restless pulled his cannula out and we’ve had a blood bath much to Bilbo’s horror.
And tonight much like last night he lost it, he screamed, he growled, he cried for his mummy and I couldn’t do a thing apart from hold him. My mum held him, he kicked her, he screamed, he shouted and sobbed. And do you know what so did I my tears flowed because I got it – I felt like doing all those things too. So they say keep a brave face, smile, happy face in front of them but tonight I couldn’t I let my tears fall. Then I pulled myself together cleared up the pooh because diarrhea is another gift from the cancer gods and got on here to bash out my anger on the keyboard.
Some questions you’re asking…
What can we do to help?
There are lots of things you can do. Firstly knowing you are there is making us feel supported and loved. The wave of positivity has been immense – so thank you! Right now there isn’t much else. We are just trying to work out what the road looks like for Bilbo, we know it is going to be long and we know it will be bumpy. So there will be times when we’ll need all sorts of things, support, understanding, babysitters etc. etc.
How can we find out more about ALL?
Check out these links they’re reputable and speak in facts:
Can we have your address?
We’ve already received some beautiful heartfelt letters/cards so feel free to keep the positive vibes going, we’re adding them to Bilbo’s wall in his room on the ward and when we go home we will decorate a wall with your support. I’m going to call it our love wall because we’ve made a decision that to fight cancer we’re going to fill this journey to the top with love.
If you’d like to send us something please send an email to email@example.com or message us on our facebook page and we can send you our details.
I feel helpless…
Don’t feel helpless, there are so many things you can do we’ve picked out a few that are specific to the situation we’re in.
Bilbo has had two blood transfusions so far and 3 lots of platelets. They have to come from somewhere, so look up your local blood donation and go give a few pints, apparently they give you a biscuit in return.
And despite day 4 being rubbish for Bilbo I feel better after getting it all out. So signing off now as I need to make up my camp bed and tidy up ready to take on day 5.