27th of the Twelfth

Technically this project bit is over. I haven't finished though, oh no no. I could probably write forever and it'd make no sense.

This is the phone v laptop argument. I know I communicate better on my phone, but it makes less sense. Whereas I can spend ages on the laptop rewriting things which still make no sense.

I have managed to develop an unnatural fear of people. The idea of answering the door in my pyjamas makes me feel queasy.

It goes much further though. I have to be out of my pyjamas by 11am and ready to leave to stand a chance for anything to happen that day. No phone call pics here, let me tell you. 

(I don't actually want anything to happen, I'd rather a few days off and if I can read and write at the same time, then job done!)🏃🧘🤸🤾🦂🕷️🪱🍟🥨🍕

Head Clear

can I mention how confused I am again? Only Connect, Mastermind, University Challenge. All quizzy Monday programmes ON A THURSDAY.

Husband and teen are both full of cold so we're all avoiding each other. 

Which is sort of weird as we're used to lounging around in here having random conversations. I'm glad this doesn't happen all the time. 

Instead my head has 'Discoteque' by Le Roop on repeat, a song which came eighth in the finals, though apparently 'We Are the Winners' scored more (and yes, of course we know the words).

Fara Williams, Mary Earps and the teen.

ANYWAY today's update is that I have a wheelchair (not yet needed), I'm getting an emergency box (ditto) and a hospital bed will be on order too. I have also run out of steroids (not wise). 

I always have so much to witter on about, which is often forgotten as it takes me so long to get in here and I'm distracted. Must do better. I'll just say we're delighted Mary Earps won footballer of the year because she's not afraid to speak out - more people should do it.

The teen and Fran Kirby aaaaaages ago. 

I'm having a confidence crisis. Should I post my beige food pics? It helps me remember where I was from day to day, though the actual day might not be right. 

This is my Bill's meal. Oh it was SO good. Inside that big loaf is cheese, cheese and more cheese. 

Bill's fondue and halloumi fries, yum. Beige. Yum.

Ouch

This is not the start of the evil headaches though this one is making sure I know it can. 

It's painful in a 2/10 constant ache where paracetamol doesn't touch it. 

Manageable but irritating. I want to sit in the bath and relax but I probably won't be able to get out of the bath. (this happened the other night)

I want to smell good again (always guaranteed with a bath). 

We chatted with hospice doc today as husband is concerned about my side effects whereas I think it's part of it all. I think I'm right, thanks Dr Google. 

Hospice nurse is visiting tomorrow. I like her, she's very straightforward. 

We're chatting with so many people I'm losing track again, sigh. 

I'll Be Surprised If She Comes Back

The first rule of anything is don't do anything. You might find something you didn't want to read. Then you want to make sure everyone knows that's not the case.

"Well how on earth do they know that?" says one of my imaginary friends. They don't.

But when you find out that people are wondering when I'll be back you feel like you're kind of wanted in an unexpected way.

Which is nice too. 

Bruise Glorious Bruise.

Saucy shoulder shot. It's slowly going....

Do the Collapse

This is not going well.

I keep randomly falling over. Apparently I have a bruise on my forehead, and I definitely have a bloody blotch on my leg. 

I was getting out of the bath, lost my balance and a couple of crashes later and I'm looking suitably war torn. Maybe.

My hospice nurse was wonderfully sympathetic, though there's very little we can do other than wait for it to heal. 

So I'm off baths for the time being and hoping that showers won't be as problematic. I get randomly dizzy and that's when the problems start. 

I wish it was all nice and straightforward. 

Stuff

I have a lot of posts in draft at the mo, this is the latest one.

My problem is that I can never remember what I was going to waffle on about.

Like now.

Irritating.

Vomity

Phew. What a horrible night last night. 

I appear to have caught something. I'm unsure what but I managed to be very very sick last night, couldn't take any tablets and generally felt sorry for myself under the spare duvet in the front room.

At one point I needed the loo which was quite unsuccessful - I stood and fell on top of husband, unable to manoeuvre myself off him. If I hadn't felt so rubbish I'd have had the energy to laugh. Fast forward a couple of days and I've got a pair of quite spectacular bruises. 

Fortunately we worked it out. Fortunately.

I've no idea where this came from, other than every ten minutes or so I had to be sick. That was delightful. 

I did get a very good sleep last night and this morning. As in, I woke up about 10.30-11.00. I'm so very tired still.

We plod on, let's hope this is on its way out....

Baby Bruise Fingers

If I could get a good photograph of the tips of my fingers I would, but I don't think the lighting works in my favour. 

On almost all my fingers are tiny fading bruises from months of blood sugar testing, pricking the end of my finger and taking bloods to check everything is behaving. 

Then I get a text from my GP who wants to talk about cholesterol. OH Cholesterol. This has always been an issue, it goes back years - back to when I was previously diabetic. I think they just want to phone me rather than have an appointment, I can deal with that. "Did you know your cholesterol levels are higher than they should be?" "yes" "okay, good stuff, bye" would be the ideal outcome here, though I know it'll be "eat less chips - eat less pasta - portion sizes - graze" sort of conversations. Those foods are faves at the moment as they're easy to eat and I don't feel unwell eating them. 

While the small circular bruises disappear back into my skin, only to be reactivated when I choose that finger. The blood thinner tablets are definitely doing what they're meant to... 

The bonus of diabetes was my nurse checking my feet last week and instructing my husband he has to moisturise my legs and feet once a week. Something I don't think I'll forget quickly anyway....

Hello Monday

My head is so tired. There, I've said it. I think this is a hangover from our trip to York and everything that came with it - which was two weeks ago now. But maybe it isn't?

Maybe this is just how my head is meant to go? Every day I need a little lie down on the settee to reset my brain and have a nap. Sometimes the nap is five minutes, sometimes it's over an hour. 

I'm probably due a side effects post, the only new thing (which isn't that new, I just forgot) is the heavy feeling in my legs again, thanks steroids. Dragging myself upstairs every day isn't much fun - though there's very little you can do about it without medical guidance. 

As I'm being very strict about what I can and can't use based on what the GP/NO tell me things take longer to be a part of my daily life - if allowed. 

The main thing is I'm allowed PIZZA and this makes me very happy indeed. That's all. 

Told

Mum has now been told, face to face.

It went okay, as well as could be expected. There were tears, and we were asked (by mum) to leave to give her time to process it all. Which we did.

It's weird telling your parent you have a terminal illness, especially when she wants to do something to help. But there isn't anything, just what we're already doing. 

I didn't cry, just lots of hugs and trying to make sure mum didn't get too upset. We don't know how much she'll retain that she has been told. The key thing is the C-Word - cancer. 

It's all a bit rubbish really. 

A Logistical Nightmare

Things are going well. I currently have four or five hospitals/medical establishments which are issuing prescriptions to me. I've completely lost track of who has issued what and what my medication actually is. 

So my days are phoning the GP, hospital, other hospital and so on to try and work out what is going on. 

Some of my prescriptions are different dosages so I need to make sure I have the correct dose handy as well so I don't run out. Uuuhh.

Too much to think about!! 

Monthly Donation

One thing I've noticed more than anything in this year I've been off work and life is that there appears to be a huge market for charities convincing you to give them money. 

For example, there are a lot of "we know you don't like funerals, so when your loved one dies they can organise it all so you can do something nice to remember them afterwards" which kind of makes sense.

Within this group of adverts there is one where a (quite clearly not) 50 year old lady is playing hide and seek with her granddaughter. "I'm 50 and a non-smoker" she tells the people down the phone. Now, I've been teaching myself to be kinder these last few... well, I'm not sure how long, but long enough. She is quite clearly not 50, more like at least another 10-15 years older. It isn't even dubbed so you can't blame that route either. For a parallel, I dislike this advert as much as the 'On the beach' one that was on every single ad break in the summer. 

Cars. Lots of "you won't lose your no claims with us" sort of ads. 

Then there are the next lot of adverts. Free wills with cancer charities. Possibly a bit close to home right now but something that needs looking into. Mainly as Shaun won't have a clue what to do with all my rubbish. Another thing is a Power of Attorney - having used ours with mum a lot I can see this is very important. 

Then, there are the animals that need help charities. Donkeys, horses, cats, dogs, rabbits,  oh just name them, they will be covered somewhere. I've noticed these charities encourage you to donate £5 - I'm assuming a month, but I don't actually know. All I know is the animals look like they need lots of love and I hope someone is able to do it. 

Finally, there are the children in poorer countries who can't afford doctors/hospital treatment, encouraging us to donate. I can't remember how much, just how sad the children seem. I'd donate money to most of these but right now we need every penny we can get. So instead I'll watch and wish. 

Bleh.

Well I can't type up anything about my hospital visit. Mainly because I need to email a lot of people first. I can see views on the posts on here now, only small numbers but they could be anyone - including people I know. 

But yeah, things are moving again. 

Blood Thinner

Oh the joys. I took my two plasters off last night after the cannula fitting I'd had earlier in the day. 

I was greeted by these beauties. My photos do not do them justice. 

The nurse who tried to put in the cannula said "oh I think I felt it pop?" which wasn't at all worrying. Okay, it was. 

Wednesday Thoughts

Ha, see, if I call each post the actual day it's published, maybe that will help me. 

Though right now my biggest problem is that I think of something I want to post here, I log on, create a new post and oh, guess what? The time it took me to do that and stop thinking about what to post, the actual post has now left my brain. Gone. Forgotten. 

The last time I remembered the post was in the middle of the night, not the most practical time. 

It's more than a bit annoying - this is low level memory stuff which is being forgotten (thanks head). 

So the question is, if I wake up at 2am and remember, should I make myself post it? 

Oh, I think I might have remembered something. For the last couple of weeks I've been trying to find the husband's nasal hair trimmer. Yesterday I found it. My long nasal hairs have been trimmed! This has led to me having a runnier nose than usual (not sure why), but it has also led to my nose no longer being itchy. Thus, it's a huge great big R E S U L T as runny noses are a bit irritating. 

Anyway....

 "GASP! Will we get to use your Blue Badge?!" excitedly asked the teen. I told her it was unlikely as there were plenty of parking spaces and we weren't going to take very long. The disappointment.... 

My brain is jumping around trying to work out what day it is. Yesterday (Monday) my head thought it was Thursday - and I ended up quite disappointed it wasn't (Taskmaster, yay) - today it's confused and not bothering. Although on saying that, I'm due at the hospital this afternoon for an appointment we're confused as to what it's about. 

(extra sidenote, our nurse had no idea she had an appointment with me so she was elsewhere for a while as well)

Anyway, everything seems to be done that needs to be. I need to have two blood clot blood tests every year to check everything is working and I need to get (one of my many) prescriptions switched from the hospital to my GP. 

So now we move onto prep for next week's appointments....

Then There's Other Stuff

I am not about to mouth off about my family, though by starting this that way I'm directing you there. Don't listen to me, ok?

ANYWAY.

The teen asked if she could be dropped off at the park when we were driving home this afternoon. I pointed out she had homework that needed doing and I wasn't happy with her priorities. She pointed out the homework wasn't due in school for a few days. 

Which then left me in the position of being quiet and hoping the husband would decide instead of me.

The teen promised she would be home by 5.30 (it was more like 5.45) and would do her homework when she got in - which is mostly done but there's still some bits that are outstanding.

We've hit that 'wants to be with her friends' phase which is fine - they all hang out in the local parks. Two days of it is quite a lot although it wasn't denied. 

I guess I'm not used to how quickly the change happened! 

Argggghhhh

I think it may have finally happened. I am getting so many appointment letters, so many alerts on the app, so many texts asking me to book appointments that I no longer know what I'm doing any more. I have appointments I didn't know about and ones which I thought I had logged which no longer exist. 

Fortunately I have a neuro phone call tomorrow so I'm going to go over what I have to make sure I've not missed anything - or logged anything twice. 

The upside of all this is the appointments are in the new cancer centre, Sutton Oak Cancer Centre which is nice and spacious and bright - and it seems quite efficient in there too. 

Anyway, it took nearly a year, but here I am, confused. Ready to work it all out! 

Hungry Like the 53 Year Old Woman I Am

I vowed if I was near the laptop and hungry I'd blog, so here I am.

I'm SO hungry. I had my usual lunch, I've had a mid-afternoon biscuit because I was still so hungry. Yet I'm still hungry, needing food for my groaning, croaky stomach which is making sure I don't forget it needs feeding. It's a bit of a pain. 

My hunger needs are definitely on the side of "feed me NOW" (a la Little Shop of Horrors) - though I am able to not eat. Then I just think about food - which we don't have as much of as I've been eating. Plus - diabetes.

I'm also annoyed as the Eat Real multipack crisps I'd been buying no longer seem to be available at my online shopping place. I don't have the energy to check all the local supermarkets so am doing without or am just splitting a large bag into smaller portions. Not quite the same but btter than nothing I guess....

I have more than enough to eat at lunchtime, it's the steroids switching my appetite around again I think.