The Hunger

My hunger issues appear to be over. However, in place of this is the need to be eating all the time, ever.

Right now I want Pringles. It is a bad idea for me to have Pringles as I've just done my blood sugar test and it was high (we had a Greek lunch). But I need to eat. My tastebuds are dictating they need a slightly cheesy crispy thing and they need it now. 

So I have to pretend I'm not hungry and don't need this food more than anything else ever. I distract myself, classic distraction technique, watch some crappy tv to make me think of other things.

But still the taste of the Pringles is in my head. 

I am grateful I seem to be eating normally, but resentful of the Pringles cravings I'm having. At least they're on offer with the supermarket at the moment...

In summary, I'm a diabetic (insulin controlled) as I'm back on steroids and my diet needs to improve. As in, no Pringles. So I think I've done okay today denying this craving. 

A Long Weekend

I like how when we get an extra day off, a bank holiday it's classed as a long weekend. It also means I have no radiotherapy on Monday because of this - so all back to normal on Tuesday. 

That extra day makes all the difference. 

I can tell I've got a dry cough, not sure if it's hayfever or an actual cold but as I'm so close to the end of this phase of treatment I'm hopeful things will be fine, especially with the extra day. Oh and a nice sunny weekend and a child-free weekend too as she's going off on her practice trek for Duke of Edinburgh Bronze. 

So it feels like it could be a nice time to just slow down, eat well and relax. 

(and miss my child)

Side-effect wise, everything feels normal again other than not being able to sleep properly. My legs are a little bit dry, remedied with some moisturising cream I've been prescribed, and a drowsy antihistamine. I get there in the end, though last night slept from around 11pm until 6.30am which was the old sleep patterns I had back in the pre-brain-injury days. I'm sure tonight it'll get wonky again. I'm sure. 

So this phase of treatment will end soon, then more MRI scans to see if it did any good. Then we'll know more. My sister asked if all the waiting was frustrating, but I don't think about it. I don't think it would be helpful - we get the info when we get it (so to speak). They moved me forward with this Radiotherapy as there was a space and accommodated what needed doing. 

So yeah, who knows what happens next? 

What Date is It?

Well, considering I wasn't sure what day it was yesterday, it now appears I've lost a whole date. I'm not sure how. 

I log my blood sugars three times a day - all for the diabetes reporting of course. But today as I put in the next date, the 22nd May, I realised it is in fact the 23rd. I'm not aware of missing a day - lord knows I'd happily skip a day if I could. But it's not there, it's missing. The 22nd definitely happened because it was yesterday and I had a friend pop over for a catch up - so I didn't sleep through it or anything (if only). 

It's a bit weird. Not losing sleep weird, but weird. 

What Day Is It?

I know it's Monday, I got so confused. Looked at my spreadsheet diary and couldn't work out why I didn't have an appointment today, until husband pointed out it's the 22nd and actually I do. 

I've had a few unsettled nights sleep these last few nights. Lots going on in my head and I've also been busy too. As long as I turn up where I'm meant to be things are good. 

The joy in life is putting on a Eurovision playlist that we created years ago and which I add songs to. So we had fun singing along to 'Cha Cha Cha' even though we can't do any of the Finnish parts. I keep singing 'Poe Poe Poe' to the tune of 'No Limits' by 2 Unlimited which winds up the teen. If you can get your laughter that way, then why not? I have to keep laughing. 

Anyway, it's Monday and another week begins. I have a friend visiting later and I'm looking forward to it. It's all good.

Nails.

The latest side effect is ridges on my nails - see the photo. These weren't on my nails yesterday. Weirdness...

Fortunately my sister was around to take a nice macro picture of them. And a crumb. 

Tumour Part Deux

The thing I like the most about Radiotherapy is seeing the scans that they use, and today I had more things explained to me. 

So the tumour that is a new one is in the Cerebellum. That section controls balance, but the tumour is so small that it wouldn't affect anything right now - we've caught it very early. (the original tumour is in the frontal lobe)

I've had a few Radiotherapy sessions in this new batch and got to see my scans today - and it's in a different place to where I thought. The cerebellum is a bit lower - and yes, getting near the spinal cord.  This also helped me understand why I am only having two weeks rather than three - because it could damage that area. So I have to try and be positive because I don't know what else to be. It took until 3am before I got to sleep last night. 

You have so much whizzing around your head, so when it stops and you sleep and you process the day's happenings, it's difficult when the happenings aren't the greatest. 

"Pallative" though. Everything is Pallative. Not end of life pallative, just treating the tumours pallative. 

I'm not sad, just thoughtful. Dealing with my thoughts and getting things in order. 

Nausea and Dry Legs

Oh my word, did the nausea make an appearance. No sickness, just feeling nauseous. 

But it's affecting what I eat (again). So I guess that's a Radiotherapy side effect making a return there. 

So... I'm back on dexamethasone (sad times) at 4mg a day (that I just weaned off), and I'm taking more drugs which have very long names that I can't remember what they are.  Fortunately I now have a spreadsheet with a description saying what each tablet actually is. 

Flipping dexamethasone though. And all the others. 

I had my dermatology appointment today - and the doc was impressed I had so many photos of my side effects. I have dry legs apparently, so have been prescribed more creams which will help. So I'll be reporting back on that in a few days... 

I tell you what though, feeling nauseous and having the world's worst itchy legs is not a great combination. At all. 

More trips to hospital....

So tomorrow as well as continuing with radiotherapy (which is kind of weird as the laser/zapper is at a different angle), I have my first Dermatology appointment. 

Which is a bit of a pain, as all the reactions I've been having are calming down now. I'm hoping it won't be put down to "A chemo allergy, let's see what happens" and that actually when the appointment begins, I hope my legs flare up with the mother of all itches so they can see what has been happening. 

The only thing that calms it down is a hot bath soak, and at night some of the foot cream I bought a couple of weeks ago. My skin on my feet has almost finished peeling off (such a lovely sight) so it's not even like I can show that. BUT I am good and I take photos of these things. So instead I'll label those..

It was weird being back in the Radiotherapy dept and seeing some of the Radiographers who obviously don't recognise me (although someone did in my new Radiotherapy room and I only went there before Christmas!) - but nice to be back in there. Everyone is so friendly. 

Right, off to label photos... lucky me. 

Dance Dance Dance to the Radio (therapy)

Radiotherapy will recommence soon. I've had my mask fitting so things should move quickly which is good news. 

Having my mask fitting a second time was weird - I don't remember it being like that the first time, but maybe it was just my rubbish memory and it has been so long ago. 

They asked if I wanted music then forgot to put it on - though I had earplugs and headphones to drown out the clanking ("is that a machine working?!" I asked a radiographer when I was there recently, outside another radiotherapy room. It is loud, incredibly loud). I was looking forward to a bit of smooth eighties movie soundtrack style tunes. 

Anyway, Radiotherapy will recommence soon. Two weeks only. I'm not stressing about it because I like going there (we have normal conversations, although I'm in a different room this time) and because I refuse to think about outcomes and why I'm there. Hopefully by the end tumour #2 will have been blitzed. 

Yes, tumour #2. I don't know what this all means, I'll only know after radiotherapy finishes and I have another MRI (hopefully with music this time). It's very small and we've caught it early. I've been told I won't lose hair with this radiotherapy so let's hope that's the case. 

Sponsorship

I will always and forever feel really awkward about asking people to sponsor me. I guess it comes from the side of my personality which doesn't like to shout about things - I'm one of those people who prefers to stay in the background.

However, when husband and the teen are doing something to raise funds and I physically can't do it then it is worth shouting about. I'm just out of practice. 

But then I was too shy to tell work, for ages. Husband finally got me to do it - and oh lordy, I've just had to bump up my target to £1400 (from £500) because husband mentioned it to his work too and those sponsors keep coming in - which is awesome. 

I wish I could do it, though as I can't I'm going to look after my nephew and we'll get a cab down to the hospital when the family get near the end and meet up with them. 

I'm hoping the weather holds out.... 

Diabetes

I had my phone call with the diabetic doctor today. It was an interesting call - mainly as I got a lot of answers to questions I hadn't thought about properly up to now, or had only rambled on about here. 

In summary, I can lower my insulin further as I'm managing with the decrease fine. However, my doc wants me to do a blood sugar test an hour or two after food - which should say whether I'm diabetic or not. I couldn't work out why, and mentioned how my consultant had said I probably am diabetic now as I'm not reacting while I'm still taking insulin. It didn't make sense to me, so I asked the doc what she might have meant. 

So... the insulin I have is a slow one which releases the insulin over a 24 hour period. (I didn't know this but it makes sense) because it's a slow release injection there's very little chance of me ever having a hypo. If I was using the fast insulin then it's more likely, but I've only ever used it 2 or 3 times in the last almost seven months. 

Doc suggested that I do one test a day after food which will give me more of an idea if I'm diabetic or not - if it's over 7 I have diabetes. If it's under 7 then I don't.** So I did that after lunch today (a cheese toastie and a pack of healthy crisps), and my reading came in - 6.7! So that's great, and is making me feel positive. 

Anyway, we both decided* that my diabetes check should happen when the radiotherapy session finishes. 

* Okay, it was just the doc. 

** two days later, two under 7 results, it's looking promising....

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.