Day 38: Things I hate about cancer

There are so many things I hate about cancer. When you get a cancer diagnosis there is no time off for good behaviour. Even on a week where we have limited time in hospital and less medication, you’re not off the hook. You can’t switch off the big C button and be normal and not deal with it.

For every moment this week we’ve enjoyed normality like Bilbo being at school and Rich and I returning to work, there are 20 things that remind us we are not the same family anymore. We took so many things before diagnosis for granted. We enjoyed so many privileges we didn’t even realise.

And so today I am ranting and feel free to join me in ranting in the comments.

Things I hate about cancer…

I don’t want to be the parent of a child with cancer…there I said it. I hate F**King cancer. I hate everything about it. I hate what it is doing to my beautiful gorgeous boy. I hate what it is doing to our family, to Harrison. I hate that I argue with Rich over stupid things due to BS cancer.

I hate that when I tell someone that our son has luekamia they tilt their head to the side and feel sorry for us. I hate that the woman in M&S asked me how I was still standing up or leaving the house.

I hate the way people look at Bilbo.

I hate that the one thing that is helping and making me feel like I have some control and some power is writing on my travel blog about BASTARD cancer. I should be writing about travel and making new plans to travel the world.

I hate that my return to work this week was a minefield for me and my colleagues. As I read every email and look at my calendar I know i’m here today but might be out again tomorrow or next week. We can’t plan, our friends can’t plan around us, I can’t plan work, I can’t plan ANYTHING.

I hate that since Wednesday my phone is glued to my hand as we wait for the MRD results. They are still not in! I hate that our friends and family are having sleepless nights waiting for us to share the results.

I hate that O2 have had an outage which I only realised at 3:20pm so had a glimmer that maybe the results were in but they couldn’t get through and then rang the ward to find they still aren’t available.

I hate that every meal choice, every food shop, every conversation about food revolves around cancer. Cravings, changes in taste, hunger, loss of appetite.

I hate that I have guilt for letting Bilbo eat crap, guilt for trying to force him to eat healthy when he just wants to eat crap. Guilt because i’m mad he won’t just eat a McDonalds on the way home (yey go Bilbo) and I will have to make scrambled egg for the hundreth time.

I hate that normal conversations Rich and I have about our future still happen, then we remember we’re dealing with cancer and we realise a dream, a plan, a hope is now out of reach.

I hate that spending time with Rich can’t extend to a night off, a weekend away or even a drink together. Because one of us needs to be sober in case we need to drive to hospital and who wants to deal with cancer with a hangover. And how can we put the burden of care on others.

I hate that I can’t make cancer disappear.

I hate that we can’t leave the house without antibacterial wipes, gel and all manner of other random cancer related stuff.

I hate that we have an overnight bag packed permanently.

I hate that I have a log book of Bilbo’s blood counts and I get excited when I get a text from the community nurses.

I hate that whilst we are dealing with cancer and everyone thinks that is terrible (it is) we are lucky! We see so many other families having a much worse time than us. Cancer is evil!

via GIPHY

I hate that I have to give Bilbo his meds every day, this is sometimes easy but other days it is super hard. I hate that he has to trust me with giving him poison.

I hate the burden of making choices about what we say yes and no to? Will a visit to the supermarket make him sick? Are we doing the right thing sending him to school?

I hate that i’m relying on other parents to keep their sick kids home to protect my baby.

I hate anti-vaxers for playing roulette with their kids health and now my kids health.

I hate that H has had to have extra vaccinations to protect his brother.

I hate steroids.

I hate that Bilbo worries he won’t have friends because he is missing school or may not be able to go to birthday parties.

I hate worrying about whether other kids will be mean to Bilbo or make fun of him.

I hate that his friends have all got books to take home to start reading and Bilbo missed out. I hate thinking about other milestones he’s going to miss. I hate that cancer is stealing his childhood.

I hate that I have pangs of jealousy that other people don’t have our life and then feel guilty for feeling that way.

I hate my en-suite.

I hate the carpet in my living room and hate that Rich doesn’t want wooden floors instead of new carpet.

I hate that it is winter because it is depressing enough having cancer but the lack of sunshine and dark days makes me feel worse.

I hate early starts and nil by mouth days at Oxford. I hate the drive to Oxford, the traffic around the hospital and the parking.

I hate Pret and their limited choice of sandwiches and it has only been 38 days.

I hate that we’re messing my mum around with her work hours and need her to help us function. Cancer doesn’t just impact us it is screwing with anyone and everyone who cares and loves us.

I hate that we can’t even book a week at Centre Parcs in January because Bilbo may or may not be able to go and we can’t claim on insurance because we have an pre-existing condition.

I hate that I have tonnes of books I’d love to read but I can’t concentrate for longer than 10mins.

I hate that Bilbo can’t enjoy a shower without us having to protect his wiggle and tape a sandwich bag to his body.

I hate that Bilbo has lost his hair and his appearance has changed beyond recognition because of bastard cancer.

I hate that I have so many things to list that are so negative, but I love that writing them all down is making me feel a little bit better.

I hate that some days I don’t want to get out of bed and I want to hide away from the entire world.

I hate that cancer makes me so angry and irritable and I take it all out on the person I love the most.

I hate that some days all I want to do is cry and scream WHY US? WHY BILBO? WHY MY BEAUTIFUL BOY? WHY A CHILD? WHY NOT ME?

I hate that when I haven’t had five seconds to myself I just want to be on my own and then when i’m on my own it hits me the hardest and I want to be back in the comfort of my family.

I hate that some days being with Bilbo all day every day pushes me to my limits.

I hate that i’m so tired all the time.

I hate that I don’t want to face people in real life because I don’t want to talk about cancer. I don’t want to have to answer “how are you?”

And more than anything I hate that I have no control over any of this BS and we’re serving a three and a half year sentence.

Yet I’m so so so grateful that we still have our little boy, he is going to get better, we’re getting the best treatment, that children have a much better survival rate in 2018 and we’re in a country where we don’t have to pick up the financial cost of cancer treatment.

And finally I hate that I can’t even write a whole blog post about hating cancer without feeling guilty, like i’m not entitled to have this massive huge rant, because it feels self indulgent and I know there are people worse off than us. But I am going to press publish because this is my truth this is how I feel and if I want to rant and rave about cancer then I bloody well will!!!