My Hero

I learnt today where I get my strength from. His name is Leslie Miller and he is my grandfather.

He’s currently in hospital with a big old chest drain in and has been for almost a week now. Didn’t want to bother us with his sickness though so we only found out last night.

Considering how sick he is, with everything else that’s going on, he’s doing incredibly well.

Even with a litre of fluid in his bucket (as we fondly referred the container the drain was dripping in to) and a walking stick, he still moved quicker than me!

He’s also on a hell of lot less pain killers than I.

How is someone with spreading cancer and a big old tube sticking out of their chest, taking less pain killers than me?!

That man is a trooper and I am lucky and proud to call him my grandad.

I’m grateful he’s relatively comfortable and being well looked after. It’s just such a shame we’re so far away from him. A 3hr drive to London (through central london) is not a journey I am well enough to be doing. I’m suffering now but I don’t regret it. His face lit up when he saw mum and I.

Totally worth the extra clicks on the TENS machine and possible slight overdose on codeine. It’s ok because I’m not driving back 😅

Here’s an old pic of the great fella himself


Breaking point

That impending meltdown that I’d been avoiding, happened this morning. 

Got pushed over the edge before 8am and had a big old cry. 

Thankfully nobody else was at work by then. It’s not quite the same when you have to hold back the uncontrollable sobbing. 

Dont get me wrong. It wasn’t a big meltdown. Just a bit of tears. No wailing like a banshee. 

Just a gentle sob with a woe is me attitude. 

It’s just so exhausting trying to be a normal human being when you’re in pain. I can’t play cool and hard to get when what I really need (not even want, need) is someone to just hug me and tell me it’s going to be ok. 

I’m massively needy right now and that’s a huge turn off. But it’s that or nothingness because I’m not down for mundane chit chat. I’m on too many drugs and constantly preoccupied for that. So screw you right now dude. I don’t need extra shit piled on right now. 

Seriously when is this pain bullshit going to go away?

Today’s time hop reminded me of just how bad it was last year. I’m not far off feeling the same but more from being perpetually exhausted by the situation than the pain. The pain is bareable at this moment. 

But seriously. How long does this actually have to go on for? 40 more years? I don’t want that.
Oh and I feel I need to clarify something I said yesterday about pain not disturbing my sleep. I meant that I can sleep. Albeit for a little while but at least I’m given that respite. 

2am the drugs wore off and I was suddenly woken by the pain and the need to vomit. Praise the Lord for having antisickess and codeine by my bed at all times. As well as a vomit bowl. Never go anywhere without one. Ask anyone who has ever been in my car 😅

Getting on with things

Today I had a go at normal life. 

A crafty Sunday. 

Almost instantly I knew I had undertaken too much. I overfilled my shopping basket in the first shop I went to. Why do I never learn?

I should have done the sensible thing of taking that load to the car but instead I decided to plow on with my shopping. 

By the time I got home the codeine had worn off and I needed a rest. After I had done a couple of crafty bits I needed a nap. 

What a ridiculous life I have. 

Thank fuck that the pain is still currently letting me sleep. I’d be so much more grumpy if it was ruining that for me too!

There was a brief moment where I almost had a meltdown tonight. I’d bought new batteries for the TENS for a bit of relief but then couldn’t find the bloody machine. Looking for it was wearing me out and getting me all wound up. 

I finally found it and tbh it’s not the magical quick fix my brain had falsely remembered. 

Yeah it’s distracting and weirdly comforting but I’m still in pain and sad it’s happening still. 

Time hip kindly reminded me that this time of year always seems to suck for me

When will this actually come to an end?
I’m sorry for whinging a lot lately. I’m just getting quite down and need to vent it so I’m not complaining to everyone face to face daily. 

I don’t like people knowing I’m suffering because they look at me different. I try not to let it affect my work. I don’t want to be treated like a cripple. I just want to get on with my life. 

I know this makes me a hypocrite but it’s different writing it here. Those who read this are choosing to do so. I’m not forcing you to read nor care. 

Let’s end this on a happier note. Look at these wonderful baby shower bits I created. 

Hopefully at the very least I can make other people happy x

Tears before bedtime

I’m fairly certain everyone knows this week has been a rough one. 

There were nights where there definitely were tears before bedtime. I got myself in such a state, it only made things worse. I was hot and uncomfortable and in pain and I spiralled.

I panicked that they’d never find out what was wrong and I’d be in pain for the rest of my life. I made the decision long ago that i was not willing to live like this forever and would sooner take my life rather than continue suffering. I looked up Dignitas but I couldn’t afford it. Heck I still can’t afford it. So there’s no danger of it happening soon.

I walked in on mum having a conversation with a friend on the phone the other day. “Ny doesn’t go anywhere. She doesn’t keep well with her health”. Very true statements but they made me sad. 

I don’t go anywhere. I go to work. I come home and I’m straight to lay down in bed.  Last Monday at work I spent most of the shift laying down because it was the only way I was comfortable. 

I’ve worked my way through a blister packet of codeine already since weds. Accompanied with plenty of cyclazine to make sure breakfast stays down. It’s only Saturday 😔

I’m also incredibly big atm. I don’t know how. I’m eating so much less than I did that week in Greece. It’s not in my head either. I would deffo not be putting this body in a bikini. I feel bloated but it’s not hard. Just a big annoying belly that’s uncomfortable (yes for those that care my bowels are working)

So this is me. Beached whale. 

Sore and sad and nauseous and completely over this bullshit. 

I know my MRI has been reported. Why do I have to wait to see my gastro doctor in order to read it? If it’s normal then I’m going to have to try the hormone injections again and if it’s not then I’ll have to have treatment for whatever it is they find. If there is a treatment!

I wish they’d bloody find something so they could treat it already. 

I’m losing hope. 

I’d love to go private but I need a starting point. I can’t pay for every test imaginable.

I don’t want/need any more radiation. 

Today I learnt that I have 1/187 chance of getting cancer from my CT scans alone. Thanks for that. 

Add that to all the other examinations I’ve had and the precancerous cells they found last year, things are looking good! 

Next week I really must book in for another smear and my B12 injection. That’ll be a fun day

I just want to be normal again 😣

Another rough night

I had a really crappy night. 

It wasn’t enough that it was a billion degrees but my insides decided they didn’t like me anymore. Cramps, normal side pain and crippling nausea. I’m so glad I have those anti nausea drugs or the night would have been far worse. 

My heart rate was over 100 and generally it was not a fun time. 

I’ve spent the day feeling sorry for myself and not moving much. Up until mum came home I hadn’t eaten since breakfast. To be honest, if she hadn’t sorted dinner I probably wouldn’t have bothered with eating again. 

Being ill sucks. 

Coincidentally 2 years ago today I was in hospital with that second round of PID. 

Maybe my insides hate summer?

Thankfully tomorrow is dead people day so I won’t have to do too much in terms of heaving lifting and manual handling. 

Post Holiday Slump

After a week of work and a couple of dog walks, the pain and nausea caught up with me. 

I stayed in bed for as long as I could because I knew it was gonna be a painful day but that I had to crack on with my day eventually. 

I thought I was going to collapse in the supermarket when I put a few too many things in my basket. I swapped to a trolley and that made life easier but I was still walking around, clutching my side. 

I plodded on. Made my bits for the street party and lasted a surprisingly long time mingling with the neighbours. 

I took the dogs for a quick walk in the evening because they’d been home alone most of the day but that was a massive mistake. Shadow is far too strong for me. 

My right side is my weak side when I’m in pain and annoyingly, like Ant & Dec, the dogs have certain sides that they MUST be on. Shadow on the right, Sasha on the left. I tried holding them both with my left hand but it just was too hard. He’s too strong and he refuses to walk at a nice pace 😔 So now I’m even more sore than I was before. 

I think this rules out my plan for attempting to exercise tomorrow. We shall see.

After last week’s over indulgence, I need to start being a bit more sensible. 

Coincidentally however, since I started calorie counting again, I have been in a hell of a lot more pain. 

Just saying..

Anyhoo. A lovely day had by all 

After all the horrible things that have happened recently in the world, it’s such a lovely thing to as a community. 

Last days of the hols

Sorry there were no holiday posts the last few days. It was uneventful. I think. 

Ventured to Rhodes for a few hours. That was pretty. Took some pictures for a friend’s project for her son and nephew. I think they turned out alright 😊

For the most part it just like any other major city. All the shops you would normally encounter. But an incredible amount of umbrella stores. Very bemusing. I assume they were sun shades more than rain protectors because they did seem quite out of place.

The old town and marina were beautiful. Dotted with shops selling you the usual tourist stuff and the marina full of rich people toys.

I decided to return to the hotel in time for the pizza buffet. I was not going to miss out on that. Best part of the day!

I saw my brother again and witnessed him singing and dancing to Abba. That was an experience 😅

The rest of the trip was just me trying to get as dark as I could without burning. I did a good job even if I do say so myself. 

The sun did a blinding job of bleaching my hair though! Look at the colour difference!

What else happened?

I was relatively pain free for most of the trip. I had a couple of uncomfortable days but nothing a few cocktails couldn’t fix. 

The plane ride both ways, plus coach journeys were hellish but my old buddy codeine helped me out with that. I started to wonder if maybe it was happiness that made me sore? 😅

I’ve felt pretty crappy today. The familiar crippling pain of air moving too quickly through my bowel and the general side ache. Nothing worth taking anything for so far but I do feel pretty nauseous. 

Finally got my prescription card through though so I don’t have to shell out a fortune for drugs anymore. Paid £100 or so for the year and I can have as many as I like. Which is good because a recent prescription cost me over £30!

£8 a month for crazy pills too, soon adds up. 

Oh and today I had the pleasure of seeing the dentist for the first time in about 10 years, as I managed to chip a molar on my last night of holiday. That pleasure cost me over £50 and a very numb face. 

That’ll teach me for going away and having a lovely week away in the sun!

So back to normal service now. 

Fingers crossed the pain remains at this dull ache. I can deal with this 😊