Day 825: Cruel Cancer Side Effects
Before I share some of the challenges Bilbo has been experiencing it is worth remembering he’s been having Chemo for 825 days. Every day for the last 2 and a half years Bilbo has been pumped with chemo. He still has daily, weekly and quarterly chemo. Daily anti sickness and weekend antibiotics.
The last few months have felt particularly frustrating because all of his issues have been under the back drop of Covid. Everything is harder, more complicated and slower because of Covid.
I want to caveat our frustration that at no point have our Oncology team let us down. THEY ARE THE BEST. We get nothing but the very best care from our consultants and community team.
But it has taken its toll. I feel so empty right now. My normal positivity has been in short supply these last few weeks.
Leaving it so long to write this blog means there is a lot to share so I’m going to try and focus on the timeline (for our records as much as anything).
**Warning** I have included some photos which you might want to scroll past quickly. I’m sharing to show you the severity of what we’ve been dealing with.
In my last post I had mentioned that we had some issues with Bilbo’s skin and we were waiting for a dermatology appointment. Unfortunately the appointment didn’t come through (Covid) and by the end of November the mild irritation he had on his hands and feet had become infected. Bilbo has a staphylococcus infection the same infection he had in early 2020. It had required IV antibiotics in hospital and a course of oral antibiotics for 3 months to reslove.
At the same time, Bilbo was regularly struggling to stay alert at school. His neutrophils were on the low side. It was clear he was trying incredibly hard to fight something. His Dr prescribed antibiotics.
But we’d also started to worry that Bilbo was suffering from anxiety. He was chewing his hands and picking the skin. We talked to The Henry Allen Trust and they put us in touch with the wonderful Kat for a check in. Little did we know just how much he was struggling but not how we thought.
Bilbo was in a lot more pain and discomfort than he had let on. He was feeling more tired than we knew but he didn’t tell us. His feet and hands were hurting more than we had realised.
Bilbo was worried he would upset us. He feared having to go back to hospital. Bilbo now understands his cancer side effects have consequences and often they aren’t very nice for him – so he suffered in silence. (we were mortified)
The final blow was the cancellation of our Make A Wish for the second time due to the lockdown. Not the end of the world but it would have been a welcome distraction.
Bilbo completed his antibiotics. As soon as the antibiotics were finished the infection started to take hold again. After gymnastics on Saturday 5th December I agreed with the community team to bring Bilbo into Ward 4 to get checked over. His hands and feet had both taken a turn for the worst.
Armed with the Nintendo Switch and a couple of chargers we set up camp in an isolated area. I genuinely thought we’d be in and out in a few hours. I was wrong and it was quickly agreed Bilbo would need to be admitted to Ward 5.
When I say I’m exhausted – I want to clarify, this isn’t parenting exhaustion. It isn’t like the kind of tired when you want to keep your eyes open with match sticks as you sit feeding your baby for the 3rd time in the night. It isn’t the kind of tired you get from a broken nights sleep as little wriggle pot decided to starfish your bed.
This is a physical, mental and emotional exhaustion that comes from constantly living in fear. Fear for so many things.
As soon as I knew we were being admitted I started mentally preparing for what comes next. Trying everything in my power to make it as painless as possible. I brief the doctor and nurse – don’t faff, no magic cream or cold spray – just get your tray ready and get on with it.
I begin mentally recalling the time the Junior Doctor took 15mins to get it in and left a blood bath. The time Bilbo screamed how much he hated me. The times I’ve begged the doctor to do it quickly and instead they’ve faffed about and made the entire process deeply traumatic. So imagine how Bilbo feels…
Then my mind jumps to thinking about how this process will happen multiple times in the next few days as Bilbo’s veins only work for about 24hrs.
On this occasion we went through all the rollercoaster of emotions. First he screamed and refused to sit still. He begged me “mummy no” “not the needles, I want to go home” after some negotiation we got him to sit on my lap. With his head resting in the crook of my neck we reverted to our special way of coping. I ssssshhhhh in his ear, we breath in we shhhhhh out, his body slowly relaxed as he gave in to the inevitable.
4 Days in Hospital
When Bilbo has to stay in ward 5 we get a private room. This is to protect Bilbo from picking up any other nasties. Normally Rich and I stay with Bilbo through the day and then take it in turns to sleep over. Due to Covid there can only be one parent on the ward at a time. Harrison can’t visit with Nanny.
And of course now with Covid Bilbo has to be swabbed. He was swabbed on arrival, swabbed the following day and then swabbed on the 3rd day. We can add Covid swabs to the long list of things Bilbo hates about having cancer.
I can tell you the only thing worse than having a Covid swab is watching your child repeatedly have to have a Covid swab.
As predicted Bilbo’s cannula failed after 24hrs. A new one was put in.
By the time we were ready to be discharged the second one was failing too.
When the cannula fails for Bilbo it means the infusions hurt him. As they push the saline through he can feel it and he is in pain. So now not only is he scared of having the cannula put in he now fears the nurses doing anything with it. Not helpful when he was having fluid and 3 different antibiotics pushed through round the clock.
One bonus of being inpatient was being able to expidite his dermatology appointment. We were given a diagnosis – paranychia. So the finger chewing and possible ingrowing toenail that we thought had got infected was in fact a thing. He actually had a condition that was lifting the nail from his finger.
We were sent home with three different oral antibiotics to be given four times a day. Bilbo is a pro at taking tablets but unfortunately two of the antibiotics were only available in Bilbo’s dose in liquid form.
The antibiotics he needs to swallow are disgusting. They make him miserable – but he complies. We put him in charge. He lets us know when he’s ready. He composes himself, he takes a deep breath and he tells us to get on with it – when he is ready.
Giving him the control is incredibly important because right now Bilbo’s control is in short supply. We erode it with every prode and poke.
To get the doses in we have to spread them out through the day, this also means waking him at 1am EVERY night. This went on all over Christmas and into the New Year.
Anyone who has been on antibiotics will know they can make you feel like crap. The one Bilbo was on for a month was no exception. He started to be very lethargic, he couldn’t concentrate, he seemed to lose his spark and enthusiasm.
Cancellations, Covid and Christmas
Bilbo was scheduled for his LP on 23rd December but due to him still being on one antibiotic and repeating a weeks dose of the second antibiotic the lumbar puncture would have to wait. Bilbo has an LP every 12 weeks there is some flex on when he has to have it so postponing didn’t concern me too much. They also only put the children under a general anaesthetic when they are well. I just felt bad we took the decision post Covid swab not before. Sods law.
We also got a text on the morning of the 23rd to say Harrison had a classmate test positive for Covid and we should isolate him for 10 days.
We hadn’t planned on going any where any way since we were in tier 4 in Milton Keynes. But it did mean we couldn’t take our daily exercise.
At least we had Christmas to distract us…we had a wonderful Christmas Eve and Christmas morning. Just after lunch Harrison appeared to be quite hot and snotty. I started to feel a bit rough, Rich was also not feeling brilliant. My temperature was up. We began to regularly take all of our temperatures. By about 10pm I’d booked us all a drive in Covid test.
At 10am on Boxing day Rich, Harrison and I took a family trip to the drive in Covid testing centre.
By 8pm Harrison’s results were back – negative.
By 2am Rich and I had both had a negative test result.
It was the first time I think I’d genuinely been really scared about Covid. It felt too close for comfort.
Aches and Pains
The other major concern for us was Bilbo’s complaints of aches in his legs and ankle joints.
Children are often asked when they have a check up to “do the penguin feet” or the “pigeon feet” I never really understood it until Bilbo complained of discomfort doing both.
Physio appointments are pretty hard to come by during Covid. Most of it is over the phone or by Zoom. One of the bonuses of visiting the Kamran ward is you can get support on the ward. The cancelled LP meant we would need to see someone locally. The appointment was booked for NYE and was then cancelled because of Covid.
We started 2021 on antibiotics and full of hope that his infection would finally get under control. We felt positive.
Unfortunately it wasn’t to be. Adding to the toe and hands, a little scab Bilbo had from the cannula tape wasn’t healing as quickly as we’d like. Also Bilbo had taken to washing the area with bubble bath and shower gel. A little scab had started to become a very red an angry area, made worse by the fact the infection was back.
His antifungal/antibiotic was extended for another month.
Emotional Lumbar Puncture
I am going to write a whole other post about our pending move. But needless to say a house move means moving Bilbo’s care. You might be wondering why are we moving Bilbo’s care when there is still a year to go?
There are a million and one reasons why a move is a good thing for our family and I will share in time. Regardless of the positives moving is still stressful and this last few months hasn’t helped my anxiety about it.
Our visit to Oxford served three purposes. His LP, a chance to talk through his hand over of care and an opportunity to see a physio in person.
Lumbar Punctures are the norm for us. Kamran Ward is our second home and this visit was no exception. it is still weird wearing masks and not being able to wander about freely but familiar faces are always a welcome treat.
Bilbo breezed his general anaesthetic and LP.
And the physio agreed that Bilbo has been experiencing some grumbles from his meds. He’s been growing ALOT and the pain in his toe has caused him to adapt how he walks. All manageable outcomes.
Walking out of the ward for the last time – left me overwhelmed with emotion. I will save my eternal gratitude to the Kamran team for another day. But we will always be grateful for the team there.
Bilbo has regular blood work. The nurses visit our house every 2 weeks. His results presented an increase in his kidney markers. His consultant at Oxford and Milton Keynes both agreed to pause on his antibiotics to give his body a break.
Over the next week Bilbo got worse. On Friday we went back into Milton Keynes to work out a new plan.
We are back on antibiotics for a week, we have a cream for his fingers and his arm.
We will redo bloods on the 10th February and await the swab and nail results.
I am hopeful that the new plan will bring Bilbo some comfort in the long term. Unfortunately it means some short term pain.
How’s Bilbo doing?
He is at the end of his tether. He’s been prodded, poked, clipped, swabbed, woken up in the middle of the night. He’s swallowing pills, having yukky medicine forced on him multiple times a day. He’s tired. He’s frustrated. The medicine has made him foggy and feel weird. His body is exhausted. He’s had aches and pains all over his body. He can’t wear shoes comfortably, he hates socks. His clothes stick to his arm, we have to peel them off. He hates the texture of the cream on his skin.
He is obsessed with being clean. He doesn’t understand that being clean is what caused his arm to become sore. And then doesn’t understand why I obsessively make him wash his hands. He is terrified of having to go back into hospital over night. He has nightmares worrying about cannulas. His brain is playing tricks on him and makes learning really hard. He just wants to run, dance and ride his bike, his body doesn’t always want to cooperate. He hates the sight of blood.
He has had enough and in the last 48hrs he’s cried more than he has has in the last year. He’s begged us not to give him the medicine, apply the cream. He’s asked me multiple times why is it always him. Why does he have cancer? Why doesn’t everyone else have to have all the yukky medicine and treatment that he does?
I don’t have the answers.
I fear the worst going to bed thinking about facing it all again the next day and then he wakes up with a big smile and a brand new positive attitude. I look at him in awe, I beam with pride at his resilience and then over the day we erode it all over again when the whole cycle repeats. I hate it!
It is devastating to watch. And the truth is I wish he was more difficult about it all. He is a FUCKING hero. He is incredible – I challenge any grown adult to go through what he has and wake up smiling every day the way he does.
How am I doing?
And as I get to the final few paragraphs, I have a lump in my throat and my eyes are stinging as I feel the all so familiar need to have a good cry.
I am not good. I am tired. Our little family is tired.
All I want is to wave a magic wand and fix it all. And I can’t. Everything that has happened in the last 3 months has been out of my control. Ever since we got cancer we’ve been at the mercy of it and the side effects. I hate it!
There really is only so many times you can say you are fine – I am not fine.
And that is why I’ve finally sat and written this post because the whole point of this blog was to help me. To share our story when I couldn’t face repeating it over and over. I owe it to myself to let it all out.
I live in hope, tomorrow is another day. We have seen improvements in Bilbo’s skin today and I’m hopeful we’re turning a corner. But for now we focus on the next 7 days one day at a time.