30 days of cancer…
I can hardly believe we’ve been battling cancer for 30 days. Some days it feels like we’ve been doing it for a life time. Other days I feel so new and useless. It is safe to say that it has been the hardest 30 days of my life. Harder than when we brought a newborn home. Harder than when we brought a newborn home with a toddler in the house.
The last 4 days have been particularly trying, testing, stressful. There have been moments of joy, laughter and hope. But those moments have been out weighed with testing behaviour, sheer exhaustion, frustration and cancer BS.
When I read back the last post Day 26: Hair, Christmas Lights, Pirates, and Tears we were showing signs that it was taking its toll. In the last 4 days we’ve had to continue to accept that we’ve lost Bilbo to cancer physically. We’re now also dealing with losing him mentally too. We can thank the steroids for this. Luckily it is short term and in the last 24hrs the dose is coming down and by next Tuesday we will be done with them – for now.
Since diagnosis one of the medications Bilbo has taken is a steroid. I’ve included this link to help explain more of the science bit. We were warned about these, many parents I met on the ward said the “dex” were the worst bit. And now 30 days in I know why. It is hell. It is like some sort of sick twisted cancer torture.
About 2/3 weeks in we noticed Bilbo’s appetite was increasing. Slowly he was asking for more food, talking about food, having specific cravings. Egg and soldiers was his craving of choice, he was requesting chill con carne, spaghetti with sauce, he wanted rounds and rounds of toast. He licked his lips at the thought of marmite and dipped his finger in like honey, he wanted cucumber and hummus. Tuna sandwiches, chedders – NO SWEETS! And endless cheese on toast and full english breakfasts. And every day he requests garlic…garlic dough balls, garlic bread and garlic in his food.
Tonight he told us we were bad people for eating some of the garlic bread with him at dinner.
As the days and weeks went on, Bilbo’s need for food started to impact our ability to go out, we needed to make sure we had stuff packed and it needed to be the right stuff. Or we needed to know we could easily get food.
In the last few days he’s eating every 30mins. Rich, my mum and I are pretty much in the kitchen cooking, blending or working on something for Bilbo. And as the hunger has increased we’ve also seen his personality change too. If he isn’t fed when he needs to be fed, all hell breaks loose. Nil by mouth 2 weeks ago was a challenge as he couldn’t eat from his last meal until after his procedure.
He woke up one night at 4:30am asking for weetabix. The demands are many, the quantity and speed at which we’re supposed to find “garlic dough balls” is very real.
And today we experienced the crescendo of our little boy on steroids. He knew he was going to be nil by mouth, from when he woke up at 5:30am he was angry. He hit my mum (she stays over to take H to nursery) he knocked an entire cup of water over on purpose. He refused to talk to us all the way to the hospital. Once at the hospital he screamed, shouted, kicked, tried to break things, throw things, push things on the floor. THIS IS NOT NORMAL BILBO BEHAVIOUR
The team always try to get the kids on dex in first, at 9am we were first on the list. When he woke up he was grumpy, he didn’t want to eat straight away (unusual) he just wanted to cuddle. He didn’t want toast (his normal go to after waking up) we’d ordered a cheese sandwich, his other go to. Not interested.
Whilst he was under general i’d popped to Pret for a tuna sandwich and a croissant. He opted for the Tuna sandwich then the croissant, then another tuna sandwich. He requested the pizza Rich brought with us, he didn’t like it. And so began another hour of hideous, terrifying behaviour. We walked to the volunteer cafe, didn’t want anything there. We walked to Pret he cried in the middle of the shop.
Strangers looked at us. I was at a loss on what to do. He’s starving but he doesn’t know what he wants to eat. His taste buds are different. By the time we got back to the ward we were good to go home we just needed Bilbo’s new meds.
We tried containing him in a space and putting a DVD on in the ward play room. He got really angry. And tried to run away, Rich pulled him back he hit me in the face. He pulled a clump of my hair out. I took him to the outdoor play area he over turned a slide. Finally Rich decided to take him to the car and leave me to wait for the meds.
You feel helpless, heartbroken and distressed. I have no idea how to handle this behaviour, I have no idea how to help him. I don’t understand what I can do when he’s in the midst of an episode. I miss my boy and I hate cancer.
Cancer has changed Bilbo’s appearance massively. Since before he was ill he was pale and had lost weight. Then in hospital he puffed out from the fluids. And then as each day that he’s been on steroids his weight has increased. Before our eyes he’s bloated out in his face and his tummy.
For weeks he’s remained active and wanted to walk, run and jump about. But in the last few days that is harder. He is in age 7 trousers, pj’s and pants, they are too tight. He’s uncomfortable, he’s out of breath and he doesn’t look like my gorgeous boy. He doesn’t behave like my gorgeous boy. And I’m so ANGRY! In 5 weeks he’s put on 10lbs that is an increase of a quarter of his body weight.
We’re told the weight will come off. As the steroids reduce and we move into the next phase. I read topics in ALL support groups about how kids end up on feeding tubes as they don’t want to eat as the next round of chemo takes over. We have that to look forward to.
And this week he lost his hair. If you follow us on instagram, you will have seen my post about finally shaving it. The process was as challenging and upsetting as you would expect. It is such a huge signal that you have cancer, suddenly the illness is very very visible. And every time you look at your baby you’re reminded of this bastard disease.
And so cancer continues to be a cruel cruel bastard. It makes your kids sick, you have to pump them full of poison and then it takes their personality away too. And plays havoc with their body, their normality and who they are.
How’s Bilbo doing?
Aside from the steroids…30 days of medication, hospital visits and our new normal is taking its toll. He continues to NEED me all the time. This includes following me to the shower, bathroom, asking where I am if I leave the house, take a meeting with one of our hospital team, begging me not to leave if I plan to go to the shop, or hairdressers.
He misses his friends at school, we’re very much hoping we can get him into school for a visit this week.
He still has anxiety about the hospital, procedures and what is going to happen to him next.
He has told me he doesn’t want to be poorly anymore, he’s said he wishes Harrison had to take the yukky medicine. I’ve had to chase him round the house to give it to him some days. This could be the steroids but I think it is also because he is trying to regain some control.
Bedtime tonight was challenging, he’s having hot flushes, he’s uncomfortable from the lumbar puncture and he’s irritable. He wants me beside him but he doesn’t want me touching him and so tonight at bedtime we both fell asleep in our bed. I needed the nap and he finally looked peaceful.
How are we doing?
I can’t speak for Rich although I know he is tired. We’re both struggling to get a decent nights sleep as we worry about the next few days and the test results.
I am not doing so great. I’m exhausted, frustrated, angry and slowly going stir crazy. I’m finding the monotony of the days difficult. I’m finding it really hard to see my little boy suffer daily. The four walls we live in are driving me round the bend. We can’t plan further than 2 days ahead at the moment as everything depends on how Bilbo feels. Worse because we’re waiting on the results of his MRD.
But i’m determined still to put the brave face on for Bilbo. Saturday marks the 1st December and I will do my best to keep the Christmas spirit alive. We start with our annual visit to Stoke Lodge Farm to pick out a tree and a visit to Santa on Sunday assuming Bilbo is well.
The results of the MRD determine everything. We are waiting to find out if we stay on Regimen B or we need to move to Reginmen C. If we’re lucky we will learn the results on Friday, if not we wait until early next week.
The paths are very different and will impact what the next 5 weeks look like, including how many times we’ll be in hospital and whether Bilbo can think about having some time at school and Rich and I can think about some time at work.
The waiting is frustrating. To say i’m terrified we don’t stay on Regimen B is an under statement. This is giving Rich and I sleepless nights and we’re hoping for the best possible outcome.
We remain positive
It hasn’t been all bad, Bilbo has had us in stitches, we have laughed in the unlikeliest of places, we’ve sung Christmas tunes in the car as loud as we can. We’ve had wonderful visits from friends and family and Bilbo has continued to work on his writing and drawing.
We’ve continued to receive support from across the globe and every message, card, gift and knowing we’re in your thoughts continues to mean so much.
It could be worse
And every time you feel sorry for yourself, you only need to spend some time on the Kamran ward in Oxford to realise we’re one of the lucky ones. We could have it so much worse.
Bilbo has one of the more common forms of cancer and ALL has great results. When you think about cancer being a cruel cruel bastard, there are families, children suffering way more than us.
And so that is why the last few days of fundraising have actually helped me so much.
A HUGE THANK YOU to everyone who has made a donation through our GoFundMe Page we’ve raised:
As part of Giving Tuesday my work colleagues have raised funds that have been matched by Pearson and matched giving for the bake sale:
And to Amanda and Sarah who’ve been raising funds for CLIC for their birthdays through facebook another:
Here’s CLIC Sargent’s Christmas appeal, they’re blooming awesome and doing so much good for families facing cancer.
And a donation from Bilbo’s nursery Tippy Toes which we’ve doanted to Aiden’s Funds for Fun
And so many people have supported us in ways we couldn’t have imagined.
And to everyone arranging to give blood we can’t thank you enough. We’re delighted to hear so many of my colleagues in Hoboken, New Jersey have signed up to give blood when the Red Cross visit in December. We also laughed so hard when we saw a sneak peak of the costumes they have lined up…
And just like that we’ve completed the first month. 30 days of cancer complete.