Fine.

"How are you?"

"I'm fine"

Is the general conversation I have with most people at the moment. Then I remember. I have brain cancer and they're being caring and polite. So I then have to add

"apart from the old brain tumour, aahahaahahaha"

which then leaves me feeling like I have a terrible sense of humour. Although I'd like to think people going through this might take up this level of humour so I'm not the only person. 

So how am I?

Overall, I feel normal. I don't feel like anything weird is going on with me. Then I feel my head, then I have a sit down after a walk and I seize up. I move around a fair bit, probably not as much as the hospital would like me to but I do. "Oh yeah, I have cancer" goes my brain, forever forgetful of random things. 

I think because I only dwell on it some of the time (like now, writing about it) that I don't give myself the headspace to get angry at it all. I think this could come in the future, but right now it isn't needed. I need to be strong and to work through this. The doctors, nurses, consultants all nod positively when we're at an appointment and I tell them this. "You've a good attitude towards it" they ask, before then checking "have you had any seizures? have you collapsed?" sort of questions, all of which are answered "no, no, no" 

Today I had a covid booster, went to the local centre with husband. He wasn't allowed to have one though (yet). The government have changed the criteria and as he's only my carer rather than someone with a condition he doesn't qualify. To that, I say "tsk!" though I know it's not the centre's problem - it's coming from higher up. 

I was told to bring prescriptions to prove that I need the vaccine, so carefully picked out some bits. They didn't ask, they never have done. Good job I didn't bring the lot! 

Ants

Okay, this ants thing is getting out of hand. Husband is trying to find the nest (no luck so far) but there aren't enough ants to trace it. 

But you can guarantee that when you're not looking for ants you then see five of the things.

They're like London Buses - they all come at once when you don't need one. 

The good news is that despite not doing much yesterday (but feeling pretty tired), I fell asleep quickly and didn't dream of ants. Long may that continue.... I'm sure my next dreams will be peeling feet anyway. 

Itchiness Be Gone

I'm now at the stage where I don't have to put as much cream on the itchy areas (other than my feet) which is great.

I'm guessing it's as chemo and I are becoming further apart in time I'm regaining things which I lost. 

Like no more itchy, flaky skin! 

BUT

We have ants. Ants in the kitchen, though we think we've got rid of them - until today. Husband and teen are on a walk and I spotted an ant on our table in the living room. Then I spotted two more on the carpet. I can only think that there's a nest we haven't found yet. This is not good. Not good at all. 

Worst of all I have little itchy patches on my body and my brain is overplaying it, imagining I have ants crawling all over me. 

I think I should go back to bed. 

Forgetfulness

I'm not a fan of forgetting things though am getting used to this annoying side-effect.

Mainly as I've been SO clever, buying birthday presents for birthdays at the end of the year, hiding the presents "somewhere safe".

Can I remember where that is? Can I heck. Some bits are together but there are several things which I'm sure I've bought but not where I've hidden. Which is annoying. 

"Oh just check your emails you're probably thinking. Well I was being so good at hiding things so the people wouldn't see that I can no longer remember where the emails are - other than not in my inbox. Oh, and the companies I've ordered from use different names on statements, so that's not the best suggestion either. 

ARGH. 

Hair

I've always been aware that hairloss would be something I'd experience. 2023 has been the year of the hairloss, most definitely. 

I lost a lot of hair at the front of my head, though it's long at the back. I am currently rocking a prog style cut but I'm hopeful it'll grow back quickly - mainly as I've already got 1cm regrowth in a lot of places. This is where I wish I had kept a log of when things happened rather than guessing (as I'm sure you're aware with my lack of days and time).

I shaved my underarm area over two months ago and it still hasn't grown back. My hair in the more sensitive area has thinned considerably - I can even see my c-section scar again. 

Eyebrows, I remember rubbing them a lot during phase 2 of my treatment (chemo and radiotherapy), they haven't grown back yet, although a few stubborn hairs are sticking around just in case. Eyelashes seem fine which is a relief. 

Generally my body hair seems to be growing (mostly) and none of it seems to be different. So no eighties perm style hair currently. I'm quite relieved.

I've been told the next radiotherapy is in such a small area that I won't lose any more hair too. 

Given I was told chemo would give me total hair loss (and it didn't) I'm going to tread (and brush) carefully...  but I think I'm due some good news, if only so it's one less thing to think about. 

Anyway, here's the hair. Lookin' good.... 

Ugh.

So we were back at the hospital today to discuss the results of my MRI from last week. Plus talking about chemo, the side effects and the next steps 

It's a weird meeting. My first notification from the hospital gave me a time tomorrow. Then I received an amended time for today. Then I received a phone call to amend my time today to a bit earlier. (which isn't a good idea as we're waiting for blood test results based on the blood test taken an hour beforehand) 

Then while we were waiting there was an announcement that appointments were running up to an hour and a half late anyway. 

Incredibly they found a vein quickly for my blood test which helped - unlike last week and the cannula. 

We did that part, and waited for the follow up meeting. It was the first time I've seen our Neuro nurse properly - she's worn a face mask up to now at appointments. 

We talked about the side effects. I need to be phoning/calling them if I get a rash, although it won't be due to this chemo as we've decided I should stop taking it. Now that sounds drastic and it is. My tumour is meant to respond well to that chemo, which overall it seems is working. But my side effects are too much. 

However, I have a new, very small, probable growth. Another tumour in a different part of my head. It's small, that much I do know. 

So we decided that I should have it treated with radiotherapy. At this point I said "oh brilliant! I love it there!!" (I really do) so now my consultant and nurse think I'm weird, as apparently nobody else has said that before. 

I asked my usual pointless questions which I got satisfactory answers for. I've been told to take photos of weird skin reactions (as I have my first dermatology appointment soon) - what are the chances that I'll be absolutely fine? High, I suspect.

When we got home we told the teen. She knows a lot and now knows a lot more. There were tears and hugs and all of us promising to communicate better. 

I still haven't cried. I'm still not sure why. 

Michael J Fox

There's a great* article about Michael J Fox in The Guardian. He talks about his Parkinsons diagnosis and how he won't live to 80. This part stuck with me though, it applies to anyone who is feeling the way I am currently, and I'm sure millions of others. 

He added: “I recognise how hard this is for people and recognise how hard it is for me but I have a certain set of skills that allow me to deal with this stuff and I realise, with gratitude, optimism is sustainable. If you can find something to be grateful for then you find something to look forward to and you carry on.”

It's so true. The hospital tell me that every time. I can do doom and gloom as well as the next person, but when it comes to me and my own way of dealing with things, this sums it up. 

* I realise talking about something which is eventually going to kill you or contribute to it is not a good thing, but I think it's really good to talk about it. Awareness is so important.