Day 216: Goodbye Steroids
Day 216 marks the point when we get to say goodbye steroids…this afternoon i’ve given Bilbo his last dose.
And I’m bloody delighted! Steroids are the worst.
Steroids take your sweet loving little boy and turns them into a monster.
What is so bad about steroids?
Where do I start.
Dexamethasone the corticosteroid that Bilbo takes has a variety of side effects.
- vision changes,
- rapid weight gain,
- sleep problems (insomnia),
- mood changes,
- dry skin,
- thinning skin,
- bruising or discoloration,
- slow wound healing,
- increased sweating,
- spinning sensation,
- stomach pain,
- muscle weakness, or
- changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).
For Bilbo increased appetite and mood changes are the most obvious. But for a 5 year old these are significant.
The mood changes leave the whole family riding a rollercoaster. One minute he is happy and enjoying life. Then in a second he flips out. I think Harrison has probably felt the brunt of this.
But we’ve all had our turn. Instead of our loving Bilbo we get an endless tirade of nonsense from him.
Yesterday it was “you’re a horrible lady” on repeat to me, to my mum and to little nanny. It can only be described as wittering. He’s not even really talking directly to you he’s just making noise for noise sake.
Then it is sentences on repeat…I think we heard “is it ready yet” about 40 times. We have to zone out.
Then there is the incessant whine…it isn’t words just a noise.
And the insecurity and emotional need to be near me, on me, holding me or at the very least I need to be in his sight.
He’s constantly agitated, he can’t concentrate so watching movies, playing with his lego and doing things he normally loves is out of the window.
He loses his temper incredibly quickly.
And he’s unkind, he says things for impact, for attention and their hurtful to us, to his brother and to his friends.
My mum has reminded me repeatedly “it isn’t him it is the steroids” and i’ve done the same to her and Rich when they’ve felt burnt out.
But knowing it isn’t him doesn’t make it any easier to witness.
Rapid Weight Gain
On Thursday I weighed Bilbo he was 2 stone 11lbs I weighed him tonight and he’s 3 stone 2lbs, a gain of 5lbs in 5 days. For a 5 year old that is huge.
What is really scary is it is all round his middle. His little tummy is stretched like a baby bump.
And the rapid weight gain comes from the increased appetite and often crazy cravings. Last time it was garlic, in spaghetti, garlic bread, garlic dough balls. This time it is Shepherd’s pie.
On Thursday I took him into Asda to try and find something he wanted to eat. We walked the aisles, I tempted him with meals i’ve known he’s loved before. Fresh made pizza, Fish Pie, spaghetti, fish fingers, chips, pies, peas, fruit, veggies and hummus, cheese on crackers…nope, nope, nope.
I don’t think there is anything more soul destroying than having a starving child on steroids in a supermarket and not being able to find something he is interested in eating.
And after 20 mins walking up and down the aisles and losing a toy panda (Harrison left him on a shelf) we struck gold. He fancied a frozen Shepherd’s Pie.
We’ve wiped our local Asda out. Today has been a record he’s had four. And two were before 8:30am.
And so 7 days have passed in a fog of deep breaths and cuddles. I gave him the final dose this afternoon and now we wait for the side effects to pass.
And we thank our lucky stars we got the ALL trial and we won’t have to have the steroids every month through maintenance. I don’t think my nerves could have taken it.
We’re not sorry to see them go, goodbye steroids…it hasn’t been fun!”
How’s Bilbo Doing?
I don’t know whether it is the steroids or the chemo from the last 3 weeks kicking in but Bilbo has been especially tired. He looks worn out, he looks like someone who is poorly.
Steroids aside his body is struggling.
On Saturday he had a sleepover at nanny’s he fell asleep on the sofa.
He wanted to go to school this morning but by lunchtime he was ready to come home.
And tonight he has complained about his legs aching and asked to go to bed at 6:30pm.
Where He’s At With Treatment?
This week is the final week of the first half of Delayed Intensification. Tomorrow he will have bloods done and we will see how long it will be before we can start the second half.
His blood needs to get to a certain level before they will let us move forward.
Once we get the green light the second half of treatment will start off with X2 Monday visits to Oxford. Then the rest of his chemo will be administered through the nurses in Milton Keynes.
And daily i’m looking for the signs of his hair falling out – AGAIN. So far he’s clinging on to it but we know it is coming. I can’t bare thinking about how that is going to play out.
How Am I Doing?
I am feeling a bit better, today has been a good day. But this week has taken its toll. I made the right decision to ask for help and take some time out.
A HUGE thank you to Jo for being around this morning. Our little walk turned into a pretty epic walk and it was simply stunning. The sun, the breeze and the views really helped to ground me and left me feeling really positive to tackle the week ahead.
I Am Still Struggling
Mentally i’m still struggling…if I had a magic wand I wouldn’t know what to fix first. Because every day is different, the anxiety I have falls into different categories.
For example last night at 12:30am it was about a family who’s little boy has lost his battle with cancer – Harry. The trouble with being a cancer family, you’re surrounded by this type of news. It is hard to avoid.
And we have only felt an ounce of their pain. But it hit me hard. As I scrolled through their story I was left feeling broken.
And in that moment my brain tells me to be grateful that Bilbo is fighting this disease and we’re lucky.
But like a bolt of lightening i’m transported to the dark thoughts of what if…what if they haven’t got it all? what if he relapses? will we ever have a normal life? will I always be wondering if an ache or pain, a fever or a stubborn bruise is the cancer coming back?
And I’m lying there crying, emotional, exhausted and wanting to climb into Bilbo’s bed and just lie next to him to make sure he’s breathing.
I’m lying in bed feeling guilty for all the moments in the day that i’ve lost my temper with him. Where i’ve not been able to be strong.
And then i’m having a word with myself because we’ve worked so hard to do this cancer thing right. We’re doing a good job.
I’m not used to feeling like this, or being open about these feelings. On the few occasions i’ve struggled I’ve always pushed feelings of self doubt out of my mind. I always tried to wake up every day with a renewed energy “today is a new day” and all that. But this is harder so much harder.
It is a fog that won’t lift. No matter how much positivity I want to throw at it. It is an energy suck, it literally sucks the life out of you. And at times it takes everything i’ve got to get out of bed, get showered and put on the cancer mum face.
So for the rest of this week i’m focusing on doing one thing for myself each day. A walk, reading a chapter in a book, listening to a podcast, tending to the garden. I’m hoping I can retrain myself, refocus myself so I can hopefully lift the fog.
The list of thank you’s right now is endless but please know for every single message of support, gift in the post for the boys, check in, walk in the sunshine or those picking up the slack around me at work and at home. I’m forever grateful.
I know this isn’t forever but for right now it is so so hard. I will get through it and I will be stronger on the other side.