Chapter 10: Brain soup 🧠 & what not to say

Previously on Lucy & the big C…

I wish my blog came with its own TV-series-style voiceover at the start giving a recap of last weeks episode! 😂

I am extremely happy to say that I am 100% back to my normal, positive, chipper self and that the changeable mood and brain fog have lifted! Turns out it was just another symptom of the chemotherapy; something that I hadn’t really considered until speaking with another patient during my recent long weekend getaway back at the hospital (stay tuned for more on that…).

They call it ‘chemo brain’, which in my opinion trivialises it and makes it seem a lot less scary than it really is, and it comprises of any (or most in my case) of the following symptoms:

• memory loss – forgetting things that you would normally remember
• difficulty thinking of the right word for a particular object
• difficulty following the flow of a conversation
• trouble concentrating on more than one thing at a time (multitasking)
• more difficulty doing things you used to do easily such as adding up in your head
• fatigue
• mood changes
• confusion
• mental fogginess.

How I feel during intense brain fog moments…

I don’t think doctors and researchers are entirely clear what causes these problems, or are even sure what percentage of people going through cancer treatment struggle with these problems; I guess that’s because its not exactly something that can be quantitatively measured. For me anyway, I have experienced every single one of the symptoms listed above. The most difficult ones for me to deal with were the mental fogginess and the confusion; I felt completely numb in my head and I didn’t want to do anything. It was like having a dark cloud over me making me feel confused and worried over nothing. The difficulty in thinking of the right word has been a problem for me since my first round of chemo; it’s so frustrating to not be able to articulate yourself, especially when you know that you know the word you are trying to find, but its like someone has doctored the list of vocabulary in your head with a thick black marker pen so you know the word is there but you cannot read it (funnily enough I sat here at my laptop for a few minutes before I could find the word ‘articulate’ in my head for this paragraph 😂). I have been taking supportive meds alongside my treatment now for 5 months and yet I still forget most mornings and most evenings. I tried to calculate what time I needed to set an alarm to get up for a clinic appointment about a week ago and I just could not work it out in my head. I knew what time my appointment was, but could I work backwards from 10:30 to give myself enough time to get up, have breakfast and drive there? No, I couldn’t. It’s honestly scary.

You & me both, Winona

Pretty much my whole life up until this point has been studying, having got my Master’s degree in December 2017, and I love that I am intelligent and that I like to use my brain and learn new things, so to struggle to do the simplest tasks is kind of terrifying. The mood swings are another symptom that I hate. I think my friends and family sometimes find it easy to forget that I’m not just being ‘stroppy’ or ‘antisocial’ and that my brain chemistry is being altered by all the drugs I am on. I mean, once every few weeks my brain is literally being marinated in chemotoxic drugs via intrathecal (lumbar puncture) injections. My brain sits in a soup of cerebrospinal fluid and cytotoxic chemicals. What a mental image.

A week ago I went for my bi-weekly blood test and checkup and never came home. Hello, neutropenic fever my old friend. Cue the start of a course of IV antibiotics, an 8-hour wait for an ambulance transfer to my treatment hospital, 4 days on the ward, 2 platelet transfusions and 2 blood transfusions. The staff on my ward at UHCW must think I can’t stand to be away from them! (Jokes aside, they’re bloody fantastic).

I’ve also started to compile a list in my head (if I don’t forget it 😂) of things not to say to someone with cancer, and here are some of them:

1. “If you’re gonna get cancer, it’s one of the best ones to get.” – I’m sorry, what?!! How is any cancer a ‘good one’ to get, and what even makes a cancer a ‘good’ one?! Funnily enough, I was actually told this by a consultant, near the beginning of my treatment, when I had was in A&E!
2. “You’re such an inspiration! / You’re so brave!” – I know what you mean when you say this, but bravery is something that happens when someone chooses to confront something scary and this was no choice for me. The same goes for telling someone that they are an inspiration – it is not my job to inspire other people – I’m literally just trying to not die. It’s too much pressure to put on someone who is ill and it makes them feel like every day has to be an up day and that having a down day isn’t good enough because it’s not ‘inspiring’.
3. “You look so good! / You don’t look like you have cancer!” – I’m not really sure what ‘someone with cancer’ looks like, but saying this doesn’t really help at all. Are we all supposed to lose our hair (okay, I did that…), lose weight (okay, I also did that…) and become a shell of the person we used to be?! Until I was diagnosed I was walking around looking ‘normal’ and had no idea that I was full of cancer. Not every person who has chemotherapy will lose their hair and not every person will look ‘ill’. We need to get over the mindset that cancer is a visible illness, because often it is not. If someone says they have cancer, believe them, regardless of how they look to your eyes.
4. “I know someone who had that / My *insert relative here* had that.” – This one really gets under my skin. There are more than 200 different types of cancer that are understood at the moment, as different from each other as a broken leg and the common cold. There are more than 90 different types of Non-Hodgkins Lymphoma alone. I have an uncommon subtype of NHL; I have diffuse large b-cell lymphoma (DLBCL) that has the presence of the gene BCL2, meaning that the standard treatment for DLBCL would be unsuccessful. Therefore telling me that your “Uncle’s best friend had lymphoma 30 years ago and is fine now” is not helpful in the slightest. Each subtype of cancer, of which there are thousands, has a different line of treatment, and each person reacts completely different to this treatment. Just because Sally who works with your Mum went into remission, and has been cancer free for 10 years, doesn’t mean that the same will happen for another person with the same disease.
5. “Stay positive.” – This one is heard the most and really, really bugged me near the start. I do not need you to tell me to stay positive in order for me to do this. Your ‘advice’ on this matter isn’t helpful. It’s not like I was wallowing in a corner feeling sorry for myself until someone had the genius idea to tell me to “stay positive”, and then suddenly my whole outlook changed. This also makes people with cancer feel like it’s not okay to wallow in a corner and it is. I have had bad days. I have cried until I couldn’t breathe and those days are needed and valid. Don’t let other people tell you how you should feel.

Anyway, let’s bring the mood back up again. I’m so close to my last round of chemo I can almost taste it (not a good analogy, chemo tastes horrible). Hopefully, I will be back in hospital to start it within the next week or so; not something I thought I’d be looking forward to but the sooner it’s started the sooner I am finished with treatment!