Books

So I have a cold. I cough all night, so much that husband slept on the settee last night so he'd get some sleep. Me and colds never get on well and this is no exception. 

It's so boring though. I get tired - I spent a lot of yesterday napping and fell asleep on the settee last night, waking up at 10.30pm and being really confused as to where I was. 

Today I've had a bit more energy so decided it was time to sort out the bookshelves because that's a really sensible thing to do when you spent most of the previous day sleeping. Obviously I've got half way and I'm really tired. BUT! I have bookshelves which have books with the same coloured spine and it looks so much nicer. Let's not mention where I missed a few books, I'll work on that another time. 

This was all inspired by me knowing I have a book on pancake recipes. Except it's nowhere to be found. I am putting it down to delirium induced by this cold. It's bumping up my blood sugars again so maybe I'm hallucinating and it never existed and was just a knitting book. 

The plus side is I've found loads of books I forgot I had. 

The down side is I've got to put the books back on the shelves. 

The biggest bonus is I've got a load of books to read so I can't complain! 

Cold

It has taken over three months but I've finally caught a cold. My voice is croaky and deep, I have an annoying cough. I was up quite a few times in the night. It's not fun - though I'm pleased I haven't been ill before now. 

I'm also annoyed that I'm ill now and hope that my low platelet levels don't stop me from getting better. Meh.

Anyway, I'm taking it easy for a couple of days in the hope this'll sort itself out. 

Cancer

The teen told me that both myself and her dad didn't say I had cancer. We had been protecting her so much that I guess that slipped our minds - we'd refer to Greebo as "my tumour" but that doesn't really say a lot. 

Heck, even I've learned about my tumour and stages over what I thought I knew. 

So we're sat somewhere (probably a National Trust cafe having a baked potato) and mentioned "my cancer" and my child kept quiet for several months until mentioning it late last week. 

There's me thinking I had been quite open talking about it too. 

Levels

Still not high enough. I knew this though, I'm happy as my levels were higher. Let's get to the next appointment and see what happens though.

We had a pretty long wait in the hospital though that was to our benefit. I've found out the reason I have to go on Mondays is due to them having cancer/chemo meetings on a Monday (I always thought it was a Thursday/Friday though). 

So we get to the hospital for around 9.30am in the hope the blood test room isn't too busy. The last couple of times we've got in straight away, though that might be due to hospital staff being on strike the previous week maybe? I don't know, just speculation there. After 30 minutes waiting I was called for my bloods, fortunately there was a vein found quickly and I was out of that section quickly.

So you queue for a second time in the outpatients part so the nurses/doctors can then see you. We had an angry lady we dealt with - she couldn't hear me. "I've just had a blood test, I just need to make sure the doctor knows I'm here" I told her - she looked at me with a bit of an angry stare and told me off. "Why didn't you mention that you've had a blood test?" when I quite clearly had - and had to get husband to speak for me. I am genuinely wondering if I've lost some hearing recently so I'm talking quieter than usual and not picking up on what people are saying. Or maybe it's them! 

I then asked about free parking. I got an angry stare again, not sure why. "are you having three treatments per month?" she asked, to which we both confirmed that I am. It eventually got sorted out. 

Anyway. We then waited until around 11.45 for the neuro appointment - so we've been waiting nearly two hours - and finally got called. We saw the male doctor we've seen a couple of times who confirmed my levels aren't high enough but he's happy with how things are progressing. While I hated waiting, it was quite good as we had the results through. We eventually left the hospital over two hours later. 

So actually, being made to wait was beneficial, I'd rather not be around hospital germs, though fortunately we've all got face masks on. 

Planning Ahead

The single most frustrating thing about all of this is that I can't plan anything in advance. I don't know when my treatment will start so I don't know if I'll be on a treatment or recovery week. 

So, for example the teen tells me that "Heathers is going on tour soon" - I can't commit until I know how I react to the treatment, so it's a "you're going to have to tell your dad" moment. 

I had a look at the Annie dates on tour, so far we can get reasonably priced tickets and we want to see Craig Revel Horwood as Miss Hannigan (as we haven't seen him in the role yet, just lots of other people) - but yet again I can't book - though there are two or three options here which aren't too far. 

Uuuhhhhhh!

Fortunately, Come From Away is on tour next year so I'm not thinking about it at all. Plus there aren't any dates announced yet. 

I want to go back to watching football matches (Spurs Women of course) - I'm not quite in the headspace to go now but when things get warmer if dates match up then I definitely want to try. 

I want to do what would have been normal before all this happened, I know my limits and I know I can't just book and go - it's annoying. 

I get the feeling my platelet levels still aren't playing ball. I got slightly annoyed the hospital wrote to the GP and said my throat had swelled up with my new antibiotics allergy (as it didn't, at all and it's guesswork by them as nobody tested me for it). BUT this means that chemo won't start until it does. It's annoying. 

Performance Status

This is a new one. Got a copy of the latest letter from the hospital to my GP (always make sure you get copies, you learn a lot about yourself) and it has a Performance Status for me. 

ECOG Performance Status 2

Karnofksy Performance Status 90

These are both excellent - an ECOG Performance 1 means things are really normal.

Karnofsky Performance 100 the same. The fact my scores are so close is a good thing - if it was the opposite things would be way more serious. This gives me another question to ask at my next hospital visit too. 

This has given me a much needed cheer up (I wasn't too miserable though) - I feel like there's some hope or light at the end of the tunnel.

Legs

Okay, this is interesting. Since I started this journey way too long ago I've had a heavy, cumbersome feeling in my thighs. Walking upstairs has been difficult later in the day - I've previously described it as like wearing a diving suit and being held back by the weight of it. 

Every Tuesday I've cut back by 0.5mg of the steroid I'm taking - and one of its side effects is making your leg muscles feel as I've described above.

This week I'm down to 0.5mg, the lowest I've been on since all this started. Last night I went up to bed and made it upstairs like I used to - there was no heavy feeling in my legs. It felt normal - pre-tumour normal. I got to the top of the stairs and felt like things were how they used to be.

If things go back to how they were (which is possible), I'm glad that I could feel 'normal' again so quickly on a lower dose of steroid - that makes me wonder how much my blood sugars could be affected too. 

I've described this as being like the triangle with taking photos* - you change one bit of medication and the other two parts need to be looked at as well so things don't get really wonky. 

I know this is a positive thing overall but doesn't really change anything, I'm taking the positives though, it's a good mental health thing. 

*technical term there