The Pub, Revisited

We have company - husband's sister is staying with us for a while. This is a good thing as I'll have someone else to chat to through the day and I might be able to persuade her to accompany me to Croydon for some last minute presents. (it's Fathers Day next Sunday)

They've all gone off for a nice walk and I'm going to meet them at the pub getting the bus there. I've checked the menu and most things involve cheese - still. 

We have been threatened with a thunderstorm last night - it didn't happen. There's also the potential for one this afternoon, though no signs as yet. 

Husband's sister was in Vietnam before getting to London and picked us up some sweet treats - dark chocolate dipped satsuma pieces. They're delicious. Though by the time we started eating them we wondered why there were lots of small ants on the table. It looks like some Vietnamese small ants are having a little London break. 

So in some ways I'm kind of glad we're not eating at home (ants) as you won't find them down the pub. 

Yet in other ways I wish I was eating at home thanks to the amount of cheese I may well end up eating this afternoon. 

Hair Revisited (2)

Of course I posted about my head of hair and the lack of hairloss, with it being swiftly followed by my hair falling out.

I had a nap this afternoon, I think just thirty minutes or so. The cushion my head rested on was covered in a fine, white pile of hairs. My first thought "are the neighbours cats coming in?!" then I realised it was my hair.

I sat outside and ran my hand over the area. I got a decent clump of hair, so I'm calling it that the radiotherapy side effects have decided to start. 

This time I got photos. The hair was taken outside, the patch inside. You get the idea, anyway. 

SIGH. 

Meh

I have moments, moments where it all comes back and the enormity of all this rests itself on my shoulders. Just reminding me that it hasn't gone anywhere even if I pretend it has. If you're in denial or refusing to accept what you're told are you pretending, or is it self-preservation?

This is mainly from having being told different things about the same thing from different health professionals. Everyone knows what they know, but it isn't necessarily the same thing. So who to believe? 

Ultimately, I take all the opinions. They don't know. They only know how they're answering to me - and everyone is different. So I can ask to get some guidance but I shouldn't take it as being how it actually is, as it may well not be.

However, they do know how these types of tumours work. Some people get a short time, some people get a long time. We have no idea what happens next other than I've got to look after myself.

Yesterday I received a card from an old friend and neighbour. She heard about my health issues and was really sympathetic. Weirdly, this feels like the first time someone has addressed it directly other than health professionals. I know that's not the case - I've had many conversations with my sister and husband about it all, going over and over certain things - but never with a "why me?" angle - just a "this sucks" and a ton of positivity. 

How do I stay positive? Probably the self-preservation/denial. Probably. 

Steroids Revisited (2)

Well that's a turn up for the books - I can stop taking steroids without weaning.

I took 4mg which went down to 2mg, and only two weeks worth (says the nurse, I ran out of fingers to count). 

No weaning necessary as it was such a short time taking it.

So now I'm building up to not taking insulin any more as it seems a bit contradictory to be taking it if my sugars aren't being raised by the steroids? 

Driving Revisited

I really miss jumping in the car and getting something from the shops that's that little bit too far to walk to.

That's all.

I really fancy a Feast ice cream and only the shops can satisfy my craving.

I wish I was allowed to drive. 

Steroids Revisited

This one is an odd one. When everything started and all manner of drugs were being prescribed to me, one of them was dexamethasone - a steroid. This was to help reduce the swelling around the tumour, and was one of the medications I successfully weaned myself from. 

But then chemo #2 started and for the first time I vomited - so I contacted my team who put me back on the dex at the high dose as well as a few others.

NOW. The thing is - the first time I took dex my legs became like lead weights. I could barely walk upstairs - every night was a real effort, though it helped me be tired. I weaned off the tablets and my legs went straight back to normal. Then I started taking the tablets again - but this time my legs are unaffected - there's no additional issues at all. 

(I find stuff like this quite interesting)

It feels like some weird lottery where I don't know what's going to happen other than something *probably will*.... 

(this also takes me back to the phone conversation about chemo where I was told 'no hair loss' 'some hair loss' and 'total hair loss' by different people on the team - and it was in fact 'no hair loss' which won, as radiotherapy was the hair removing treatment I had)

So I'm waiting wondering if my legs will start doing that again, hopeful it won't be the case as it should have happened by now.... 

Revisiting the old Runny Nose thing

This hasn't gone away. Every time I eat my nose runs. It started after the operation and was something I hoped would move on eventually, but no, it's quite happy sticking around. In most cases I can deal with it, however, there was one occasion which threw me - though was resolvable. 

Back at the start of the year we went for lunch at The Clink at the prison near the hospital. There's a strict list of things that you can't take in with you - from the obvious (phones) to the lesser obvious (tissues). After chatting with staff at the restaurant it was obvious why - you could smuggle in drugs on a tissue for an inmate who is working at the Clink. Whether you would or not is by the by - it could happen, so you don't get to take in tissues. 

However, all is not lost as The Clink has toilets next to the dining area, so you can get your loo roll which works just as fine, it just isn't as soft. 

The annoying thing about my nose is I can eat the mildest of foods and it happens, the spiciest of foods and it happens - so I'm resigned to this being something I'm stuck with unless my head decides to find a new pathway to fix runny noses.