Hi all, hope you’re doing well?
I mentioned a while back that I was being seen by a urologist for some bladder issues, caused by my tumour removal op, that were really getting me down.
I had many and various tests; scans, output, input function, a camera up my pee pipe.
Nothing showed up. Which is great news because my head, went straight to cancer. It always does. And I’m sure it always will.
But what I was left with is a bladder that overly works in the night time. It’s as if I have a tilt switch. I’m fine all day, no leaks, no problems. Just as soon as I lay down at night it’s off.
Now there could be two things at play here. One, because I have insomnia, when I wake up my brain assumes it’s for a wee and therefore can’t resettle until it gets one. Or two, my bladder has something called nocturia. Which is overly needing a wee in the night.
(There’s a three actually, but I’ve not discussed it with the urologist yet, that maybe I have sleep apnea. I’m going to ask him next week about that possibility).
When I saw the urologist a few months back, he prescribed a drug to try.
I took this suggestion very badly.
He prescribed Amitriptyline. It’s what I would call a big boy drug.
It was first used as a antidepressant back in the 50s and 60s, and then found to have good results on nerve ending issues, it’s prescribed for back pain amongst other things now.
I am very anti drugs (this wasn’t always the case, but that’s besides the point) so the thought of taking something so hardcore (in my opinion) was very disturbing to me.
I was meant to go back to the urologist to report how I was getting on last week. But I cancelled the appointment because I hadn’t actually got round to taking them. (Don’t worry, it was a private patient appointment, I wouldn’t dream of wasting NHS resources like that).
I thought it wasn’t best to take up his precious time, you can just imagine how that would go.
”So Mrs Doré how have the tablets been?”
”yeah, about that…..”
The reason I hadn’t gotten round to it was since the urologist appointment I’ve had all that bother with my tooth. I was focusing on what was pressing issue at the time (Still having issues with my gum by the way, I’ve now been referred to a hospital dentist as I have an infected granuloma on the extraction site, some seven weeks later!).
Anyway. I cancelled the original urologist appointment and rebooked it for a couple of weeks time. Which has given me the chance to trial this apparent wonder drug.
I can report that no improvement has been made at all, plus I now have painful boobs, constipation and a general groggy feeling.
And I have a horrible feeling that when I do go and report the findings to him, his answer will be to increase the dose, of a drug I don’t want to take anyway.
I suppose I am grateful that the 8 pees a night whilst we were on holiday in Bulgaria, is now down to 4 or 5. But it’s certainly not the vast improvement I was hoping for.
We’ll see. Worse things happen at sea and all that pro positivity gumph. Probably does, but that doesn’t really help me much right here, right now.
Anyway on to fun things.
Last week went in a blur. Having Monday afternoon in London seemed to fast track the week. So now I know what to do if I want the week to pass quickly, I just need to pop to Harrods on a school day! Hahahahaha.
On Thursday I had a fantastic meeting for Bowel Research UK.
I love volunteering in my free time. I’m rather lucky that all my time is free time.
Surviving cancer, Sam and my dad surviving cancer too, means I have a very different outlook on life to some.
I need to put my gratitude to the universe to good use. So, far from being a goody two shoes, as was suggested by the rampant anti vaxxer that screamed abuse at me at the vaccine centre last year, I am just making use of the extra time I’ve been given on the planet. I don’t work a proper job, and have no wish for one, volunteering is a great way to give back.
The meeting was really good. I felt like I was a part of something really important, for everyone’s future. We’re not allowed to discuss projects outside of the meetings. But this is a good one that I believe in whole heartedly.
If you are interested in volunteering with BRUK please feel free to get in touch with me and I can pass it on. Or contact them direct and say you are interested in PPIE.
Dress from Sainsbury’s, Tights from Tesco.
Dolled up for an online meeting.
Then the weekend came. And it was a gooden!!
We went to visit friends in Somerset. Which happens to be one of our favourite places in the world anyway. So that’s handy.
Jumper from Gyles and George, Faux shirt from Amazon, Jeans from Next, Shoes from Christian Dior
We were invited to stay at their home. But I have some difficulties actually staying with people in their homes.
I know it’s ridiculous, I write a blog about positivity with a stoma. But I’m not terribly comfortable changing my bag in public or in other people’s homes. Having a colostomy doesn’t stop me from doing things or going places. I just do it my way.
I have changed my bag at friend’s houses before, in an emergency, but my preference would be not to. Should I be embarrassed or ashamed of the smell of bag change time? No, definitely not. And I’m not ashamed of any aspect of having a stoma. Quite the opposite in fact.
But I’m a lady (this will come as a shock to my friends), and as such I don’t like other people having to smell my bag change odour.
Yes all poo smells, I’m not suggesting otherwise. But some of my poo has been sitting in that bag for 24 hours. Which means it’s incredibly smelly, and cloying. So it’s not as simple as open the window, which obviously does help. I use stoma specific room sprays too, and perfume.
I tried normal room air freshener, but the mix of smells smelt worse than the bag change smell. The Ostomy room sprays are ideal.
I’m not suggesting by any means that no one should go and stay with people if they have a stoma. God no. If you’re happy to, that’s fantastic. Good for you. You do you babes. :)
Nothing I say is an instruction to anyone else. I’m just telling the story of my life.
I noticed someone say that they felt I might be being overly cautious because I don’t sleep on my front anymore, I haven’t done since my bag was added 12 years ago.
But if you want to, then obviously, do it. I just mentioned that I don’t, I’d never mean for others to follow suit.
I was surprised to find that people do sleep on their fronts with a stoma though. I’m very impressed.
I *sleep on my back, and in 12 years of stoma-ing I have never ever ever had a bag leak, a filter failure or pancaking in the night - ever. So I’m going to stick with it.
*I say sleep, I don’t sleep that well, so I just mean the act of laying there waiting for it, is all done on my back.
For the weekend away we decided to book into a hotel near by.
It’s the first time we visited their new home. I had such an emotional reaction to it. It is my dream house! Everything about it made me feel so deeply appreciative and affectionate towards it. It looks beautiful, but it has an amazing feeling too.
It certainly helps that our friends have an incredible eye for interior design, but the house itself spoke to me.
It’s a converted water mill. The conversion left a lot of the original features in place. It is nothing short of spectacular. If I could I’d move into it today and live there very happily…our friends might be a bit miffed I’d just moved myself in, but hey, I’m sure they’d get used up it. Hahahahaha
I’m so happy for them that they are living the dream, in a dream house. I wish them every happiness. Plus I get to visit, so that’s nice for me. :)
They’re not far from the cottage that Chris and I honeymooned in. So the area is very familiar.
We arrived on Saturday and had a lovely lunch in a really nice restaurant not far from their house. And then on to Wells for a look round.
We used to be very familiar with Wells, but haven’t been since Sam was a baby.
It was so lovely to be back. If you’ve been, you’ll know it’s absolutely stunning. If you haven’t…what are you waiting for? :)
Then it was back to the mill, for coffee , cheese board and chats.
After which, Chris and I headed back to the hotel. It was nice enough, and close to their house. But the heating wasn’t working and it was so cold.
It very much reminded me of our honeymoon. We stayed at a family member of Chris’s cottage. We were townies. We had no idea how to light a log burner, and the central heating only came on if the log burner was lit. It was very cold (we got married on Valentine’s Day). We had no money back then, so we had to stick it out. But to keep warm in the day times we went to the McDonald’s in Bath. Happy memories. :)
The hotel we stayed in on Saturday, didn’t have the log burning powered central heating issue. The radiators were obviously broken. They put a tiny free standing heater in there but it wasn’t quite up to the job. So unless you stood astride it (and before you ask, yes I did!) there was no warmth coming from it.
I don’t much like being cold. But at least we had each other to snuggle.
Cheeseboard at the mill. :)
We went back to our friends first thing in the morning. And I mean first thing. Probably got them out of bed.
We had a delicious breakfast. And then headed into Bath. It’s definitely a must see city.
It was built back in the day (I’ve no idea what time frame, because I fail to listen properly to history talks ever), as a playground for the rich. With casinos and restaurants and bars. It was the Monte Carlo of its day (no, I still don’t know which day that might be).
It is beautiful. It’s a must see. Put it on your list.
We took our friends, one of whom is a Bath native, for her very first Sally Lunn Bath Bun.
They are slightly different to the other Bath bun. God it gets all very confusing.
We had a lovely walk round. And then headed home.
Can’t wait to go back and see them too.
Top from The White Company. Jumper from DKNY, Trousers from Next, Boots from Woden.
I had the Sally Lunn bun with lemon curd. But they can be served sweet or savoury. It was nice to introduce our friends from Bath, to an apparently Bath legend status delicacy.
We brought home the other traditional Bath Bun, and a renewed interest in home styling. :)
As soon as we got home I started restyling our house. Don’t get me wrong. I love my house. We live in a converted Victorian school. It’s such a lovely place to live.
But I had got out of the habit of styling it. So the visit to our friends revitalised my interest.
I got busy arranging my new lamps…
I bought a couple of lamps from TK Max the other day. A friend had spotted them in there and posted on her socials about it.
They really took my fancy. So on top on the Easter decorations she suggested I could make a home for, I treated myself to them.
The Easter decorations are similar to the Christmas ones I bought, and tried to get away with suggesting they were family heirlooms. I gave it a go with these ones too. He wasn’t fooled. He’s as smart as I am devious ~ he’s terribly smart! ;)
The lamps are Ralph Lauren. And they’re absolutely beautiful.
I had a look on Ralph Lauren’s website and they are selling similar, not the same obviously, but very close, for over £1200.
My Ralph Lauren from TK Maxx lamps were £79 and £89.
So just think of the saving I made! Hahahahaha. Chris always likes to point out that it’s not a saving if you weren’t planning on buying something, but I do think that takes all the joy out of bargain hunting. ;)
Some Easter heirlooms to add to my Christmas heirloom collection. :)
We’ve got Ben and Kaitlyn coming for dinner tonight.
I can cook 3 dishes, which I rotate. My passion isn’t for cooking…eating…Yes, cooking, not so much.
But Kaitlyn loves my casserole, and Chris and Ben can tolerate it (praise indeed ;) )
But my real passion is table scaping. I set up an account on Instagram, to store all my past, present and future scapes on.
It’s called The Great Escape if you fancy having a look, or a follow even.
the_great_escape73 on Instagram
It’s an anthology of my favourite table settings.
I’ve added on tonight’s one too.
These rechargeable lamps are amazing! They are perfect for all over the home where there isn’t a plug socket readily to hand.
I use them in the garden too.
I bought them in Neptune Colchester. I have them in the chrome too. I like to change things around. And these lamps can go anywhere, no cables, no plugs, no fuss. :)
Just one more thing before I go…
A little life hack; You remember the whole I lost my new Christmas present earring extravaganza. Well a very kind friend of a friend suggested I invest in some earring backs designed for slip on earrings.
Never heard of them before but really happy with them. £1.65 off eBay and I now have peace of mind that I’m unlikely to lose them again.
I’m probably the only one that didn’t know about them, but I thought I’d pass it on just in case anyone else finds themselves crying in a jewellery store.
I hope you have a lovely weekend. Keep well. Xx
