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I have a date for surgery

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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 8/16/2022 5:55 PM (GMT -8)
On the... *drum roll*

...23rd August! There, suspense over, now you can stop reading :p

The surgery is going to be a proctectomy (removal of the rectum) and I'll be given a permanent ileostomy. Had my colon yeeted out as far back as 2013 and had a stoma for 2 years. Then I got it reversed in 2015. The reversal turned out to be a massive mistake and so here I am, seeking a third and - I hope to god - final surgery. I've been waiting a year for this. I wasn't on a waiting list for a whole year but I failed a pre-op health assessment and that delayed things massively: I had to wait forever for an echocardiogram and clearance by a cardiologist. The actual waiting list for surgery was shorter but still took nearly 4 months.

In fact I'm in a bit of a dilemma now. I have to have two Covid tests beforehand - one 3 days before the operation, the other on the morning of the op itself. Needless to say, I was absolutely terrified when two weeks ago my mum came down with a cold and I followed suit a few days later. Both our tests have been negative for Covid, thank god. But I'm still not fully over my cold - I still have a slight sore throat and occasional coughing fit. I've been dithering over whether to tell the surgeon's office or not. So far I haven't. If this operation is cancelled, god knows when I'll next be able to get it done. However, the cough is nothing like as bad as when I had Covid for real last Christmas. In fact I haven't coughed all day today. I've still got a week left to recover, so I'm basically hiding my head in the sand and hoping it will be okay.

Anyway. I'm so sorry for not writing sooner. It's been a long, weird summer. A few of you may remember I was talking a lot about my dad and his dementia. Well, he died suddenly two months ago. Completely unexpected collapse, I've never seen anyone - outside of a heart attack - go so quickly. We had decided to go to the local pub for dinner; right up until the point we left the house my dad seemed fine. He was listening to our conversation, he showed interest, he even laughed at something I said. There was no indication that he was seriously ill. Also, a GP had checked him over a few weeks beforehand: his blood tests showed nothing worse than mild anaemia. We walked to the pub - a 10-minute walk that my dad had done many times before - and on the way he started complaining about the walk. My dad complaining about exercise was not some new and unheard of thing, but I do remember being a bit surprised by just how bad it was. But it was a hot day and I assumed he would feel better after some food and drink.

He did not feel better. In fact he barely touched his meal. He started rambling non-stop, nothing really making any sense. He kept on talking about wanting to bring something up - he clearly felt sick and we were terrified he was gonna be sick over the table. I tried to help him up, but it was like lifting a dead weight and he fell back in his chair. My mum got tearful and upset and said she would never go out for a meal with my dad again - she was stressing me out as much, if not more so, than my dad. Eventually I agreed to walk home and bring the car to the pub as there was clearly no way on earth my dad could walk home. In all honesty, I felt furious with him. I knew he couldn't help it but it just felt like yet another thing was being taken away from us - I had looked forward to our meals out and it seemed like we weren't even going to be do that anymore. My mum was already close to the point of being unable to leave my dad home alone at all, even for an hour or two.

Anyway I grabbed the car and when I came back my dad was even worse. The people in the pub were so kind. They called an ambulance for us. A woman sat with my dad and tried to comfort him. The ambulance came and I could tell the ambulance woman thought it was bad, but she spent ages with my dad in the ambulance doing what she could for him before driving to the hospital. Me and my mum followed in the car. It took ages to see our dad and then when we did, he was wearing an oxygen mask and it was hard to hear him. But he was still conscious at that point and trying to speak. My mum thought that dad couldn't recognise her but I definitely heard him say her name. And that was the last time we saw him conscious. The next day we went to hospital - very stupidly we went to the wrong hospital because nobody thought to tell us ward 2a was in another hospital! Anyway due to that, and various other reasons, we didn't make it to the other hospital until about 10pm. My brother turned up. My dad was unconscious and dying, but he seemed at peace. We said our goodbyes - if he could hear anything, or make sense of anything, I'll never know. But he died about 45 minutes after we left. Almost as soon as we had got into the house the phone rang. At a quarter to one in the morning it couldn't possibly be anything else, and it wasn't.

The cause of my dad's death was mysterious and for a while there was doubt about whether there was going to be an inquest or not. In the end there wasn't. His cause of death was put down to ischaemic heart disease, although he didn't actually die of a heart attack - his blood pressure and heart rate just crashed through the floor and never recovered, even with drugs. Because of that, the funeral was delayed but we had it about a month ago. It was touching. He was 87 years old. And, to be honest, I am glad he did not make it to the final stages of dementia: I would not wish that on my worst enemy.

I'd almost forgotten, but he also died a week before my parents' 60th wedding anniversary. I know he wouldn't have remembered how long he was married for, but it was still such a shame he couldn't make it just one more week.

I spent a lot of time with my brother and mum. He stayed at my mum's house for a few weeks, but he's gone back home now. It's just my mum living in the house alone, although some nights I stay with her. She's not on her own - she's got plenty of family who keep in touch and sometimes visit.

Living costs are spiralling out of control in the UK, but for this winter at least we'll cope. My dad left my mum with a complete mess to sort out, but he did do one very useful thing in what must have been a rare moment of lucidity: he put their energy tariff on a fixed rate until August 2023. Guys, I cannot tell you how envious I am of that right now: I'm currently paying more for my 1-bedroom flat than my mum is for a 4-bedroom house! (I've decided to pay off what I owe - fortunately not a vast sum - then cancel my direct debit and tell my energy supplier I will only pay them for exactly what I use. Then try to go a whole winter without central heating and pray and hope that the prices drop in 2023/4. It's that or pay up to £5k a year for energy, which is insane.)

So yeah, that's almost it. On Thursday I'm seeing the stoma nurse to get measured up for a stoma. As the old stoma scar is still there, that'll be easy lol. Then hopefully next week I'll be going in for surgery.

I hope everyone here is doing well. I apologise for another massive wall of text. I either seem utterly unable to write anything at all or write War and Peace-length posts.

Post Edited (NiceCupOfTea) : 8/16/2022 7:53:05 PM (GMT-7)

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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2567
Posted 8/16/2022 6:39 PM (GMT -8)
NCOT! Nice to see you.

You have so much going on, I don't have any idea how you manage it all. I would have curled up into a ball and not come out again.

So sorry for the loss of your father, and what you had to experience. Wow. That must have been so traumatic for you and your family. I understand what you mean about being glad he did not have to suffer through the late stages of dementia. The silver lining of my mom's quick passing (cancer) was that she did not have to suffer any longer than she did. But at the same time I was sorry I didn't have more time with her. sad

I am shocked at the energy costs! I will quit my whining at the increased bills we are getting.

Best wishes to you for your surgery!! Hoping it will take place as planned and nothing, COVID or otherwise, causes any further delays.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2469
Posted 8/16/2022 7:16 PM (GMT -8)
So sorry for the loss of you father and how traumatic that all was. But at least he's at peace and your and your family were spared seeing him deteriorate with the dementia. It will be a tough time for your mom for a long while. A 4 bedroom house could be lonely by herself. Does she own the house? Maybe when things settle a little more she might think about downsizing to a smaller house. Anyway ... sending you virtual hugs.

You have a little over a week til your surgery so you have plenty of time to kick the cold. No point in saying anything until you have to. Drink lots of water and take extra vitamin C (my go to cold remedy ... sometimes works, sometimes doesn't).

Really nice to hear from you. I hope the surgery goes well and you recover super fast smile
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 8/16/2022 8:20 PM (GMT -8)
Hey Miranda. I am so sorry for your loss. I lost my dad somewhere recently, too, and even more suddenly then yours. He was just gone one day. They said it was an aneurysm. Totally shocking and upsetting. I am in the same boat with the utilities in the US. Between the taxes and the utilities, it's very costly. It's getting to be such a chore waking up everyday. Anyway, I am so sorry. On the other hand, I wish you the best of luck with your surgery. It doesn't sound like covid so I would just keep testing and hope you stay negative. I hope this surgery will be the last for you, and that you find happiness and health in the future. Xo. K
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clo2014
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Joined : Feb 2015
Posts : 1773
Posted 8/16/2022 8:38 PM (GMT -8)
Congratulations NCOT!!!!! Yea!!!!!! I bet you are so excited and yet sorta scared.

I hope the head cold goes away. How long will they keep you after the surgery? Are you going to go stay with your Mum for awhile? You've arranged your supplies and support? Can they put the stoma where it used to be?

I wish we all lived close to one another... We could help one another out when we were going thru difficult times. I'll be thinking of you, saying lots of prayers and sending happy thoughts and healing energy your way. (((HUGS)))

I am so so sorry about your Father. It's difficult even if you are sorta expecting it. I miss my parents so much. I made a journal of the things they would do or say right after they passed so when time passed and I needed a reminder I'd have it. Some days it gives me comfort--others I want to toss them across the floor.....and they've both been gone for years and years.

You take care of yourself and please check in so we know you are ok.

Clo
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1597
Posted 8/16/2022 8:54 PM (GMT -8)
My condolences for your loss! But I have to say that I agree that it was almost a blessing that he didn’t suffer longer with the dementia.

Good luck on your surgery! Funny thing — I was just thinking of you today and wondering how you were. Please update us as soon as you’re able!
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19273
Posted 8/17/2022 7:50 AM (GMT -8)
Congrats on finally getting your surgery date. I know it sounds weird saying this, however, hopefully this will get you back on your feet & feeling better. about the cold, consider some vitamin c & zinc.

I think someone else asked about perhaps staying with your mum for a couple of weeks after surgery? If possible it would maybe benefit both of you.

I am sorry to hear about your dad, I understand what you are saying about dementia. I lost a sister earlier this year to dementia, it was terrible.

Take care.
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 8/17/2022 11:16 AM (GMT -8)
Hello everyone! This will probably be a much shorter post as, while I'm feeling better cold-wise, I'm feeling pretty groggy from some melatonin I took last night. I took it far too late, really, but I just wanted to sleep :/

I will be staying with my mum after surgery. There's loads of room and my mum was the one who suggested it. Only drawback is I won't be able to drive for 4 weeks and my mum doesn't drive: my dad's ancient Toyota Corolla is still sitting in the driveway. (What a job it was getting him to give up driving, but that's another story.) It's not so bad where I am, as I'm pretty central and close to supermarkets and shops, but my mum lives in a village that may as well be in the highlands of Scotland for all the public transport connections it has. There is one bus which serves the village, but it's a really poor service. I just wish my parents had never left their house in northwest London. It was a lovely house, nicer than the one my mum has now imo. And if I think if my dad had died 10 years earlier, my mum probably would have tried to move back into outer London or at least just outside it.

But my mum is 82 years old and I don't think she has the energy to move now. She says she'll think about it in a year's time, but honestly I don't think she'll bother. She owns the house outright, so mortgage payments aren't an issue (unlike for her neighbour who is selling because they can't afford the mortgage anymore).

I will go and buy some vitamin C and zinc. Talk about closing the stable door after the horse has bolted, as the cold is 95% over >_>. But I could probably use the extra vitamin C and zinc anyway - haven't exactly been eating a load of fresh fruit and veg lately. In fact I got so fed up with my bowels keeping me awake at night, I went on a semi-liquid diet for a while. I'm not really following that anymore, but I'm still trying to get in the bulk of my food before 6pm, so I'm less disturbed at night.

@nssg - I'm sorry about your dad. At least my dad was very old, but aneurysms can strike at any time: nasty things. And yeah, everywhere is seeing rising prices right now, but the UK is being hit with a perfect storm and it does make me worry: inflation just hit 10% today and hasn't stopped rising. Meanwhile, we've got a government of the worst, most useless, grotesques I can imagine: all they care about is their failing right wing ideology, their manufactured culture wars, and lining their own pockets (actually that one should be first on the list). The outgoing PM is openly refusing to govern and the two candidates lined up to replace him make me want to bang my head against a wall and gently weep. Okay, enough said skull

@Clo - I'm so sorry about your parents: I don't know what I'll do when my mum goes. I had a complicated relationship with my dad, so my feelings about him are rather mixed. He was definitely a very difficult person and didn't seem to be a happy man: I think he had what I've got; basically, autism and depression. However he could sometimes be kind and helpful and when he succumbed to dementia, he actually became nicer - the rages disappeared, he became meek and mild. And one day when he found me crying in the kitchen, he was so sweet and lovely about it. He was patting me on the back, trying to gently reassure me. Then he referred me to as his "dear cousin" :/

(Fortunately those memory lapses were still fairly rare even by the time he died. Most of the time he knew who me and my mum were.)

That said, I still would not wish even a "good" case of dementia on anybody. It's just horrible seeing somebody's personality erased before your eyes.

I ended up managing to write rather a lot after all, groggy or not >.> Anyway, thank you for your good thoughts, everyone! I appreciate them.
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quincy
Elite Member
Joined : May 2003
Posts : 33488
Posted 8/17/2022 12:10 PM (GMT -8)
Hi NCOT...very sad to hear of your dad's sudden death 😔 and I do feel the same as you that you didnt have to experience the more painful progression of his dementia. My best friend has been going through this for years...and although a painful grieving process while her mom basically slowly fades physically, her demise will be a relief.

I am happy you will be having your surgery finally. I hope your cold diminishes quickly this week. The cough can last a while.

Take good care...looking forward to your updates.
Hugs,
q
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Old Mike
Veteran Member
Joined : Jan 2007
Posts : 4073
Posted 8/17/2022 1:54 PM (GMT -8)
Hi Ncot: Good luck.
If getting a ileo tell the surgeon the stoma has to stick out a little, not flat or inverted with the skin.
The skin problems I see with bag seal leaks amd multiple bag changes a day,from stomas
that dont stick out far enough are amazing. This is on an ostomy group.
Good luck
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 8/17/2022 7:36 PM (GMT -8)
Hi quincy. Thank you. I'm sorry about your best friend - truly, if I could pick a cure for only one disease, I'd be seriously tempted to pick dementia (all the different types like alzheimer's, vascular, etc.). IBD is a misery but we have a lot of good treatments for it now - there are no treatments for dementia. At least nothing which works beyond the early stages or puts it into remission. Progression is grim and inevitable.

This cough is small beer to the Covid cough I had at Christmas fortunately. My brother, on the other hand (who I caught Covid from on Christmas Day ¬_¬), didn't develop a cough at all and was over Covid far more quickly than me.

(Hugs back to you.)

@Mike - Hi. I couldn't agree with you more about your advice. Fortunately I have a really good surgeon (the same one who did my last two surgeries) who knows the importance of making stomas stick out, so I have no worries on that front. But the number of surgeons who don't appear to know this astound me. Another really important thing is to get measured correctly for a stoma: you don't want it too near any skin folds or too low/high.

Anyway, thanks!

Edit: HW won't update my sig :-(

Post Edited (NiceCupOfTea) : 8/17/2022 8:46:17 PM (GMT-7)

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quincy
Elite Member
Joined : May 2003
Posts : 33488
Posted 8/17/2022 10:59 PM (GMT -8)
NCOT...her dementia is TIA induced. I agree a cure for that would be a miracle!
q
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2580
Posted 8/18/2022 8:39 AM (GMT -8)
I hope you recover from this cold quickly and your surgery goes well. So sorry to hear about your dad. My great grandmother lived with us growing up and she always said she would rather have her body fall apart than her mind because that’s the one thing no one can fix.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7543
Posted 8/18/2022 9:14 PM (GMT -8)
Hi NCOT. I hope your surgery and recovery go well! I'm sorry to hear about your dad.
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 8/19/2022 3:20 PM (GMT -8)
Thanks folks.

Saw the stoma nurse yesterday. That went fine. She marked the spot where my new stoma would be - basically the exact same spot as my old stoma.

Still negative for Covid skull

I bought a nice new wooden toilet seat for my bathroom a while ago. Tried to install it today, but the entire structure was more unstable than an elephant perched on top of a tightrope, so I took it out. Unfortunately now the old seat is just as precariously balanced and it's already nearly sent me flying to the floor twice. I really, really did not want to hire a handyman just to install a toilet seat but I may have no other choice at this rate. I've been spoiled by my dad and my mum's friend doing all the family's DIY until now :/ The friend is still alive but she has serious health issues of her own now, so I don't want to ask her to do any more work for me.

Meanwhile two spiders have decided to set up camp next to my toilet. Cellarspider bro is still there, undeterred by the banging, the cursing, endless toilet trips, etc. You would think he would have picked somewhere quieter to go by now, but no. The other one only seems to come out late at night when the light is switched off. That one is scaryspiderbro.
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2567
Posted 8/19/2022 4:23 PM (GMT -8)
NO!!! - what is with forum members and SPIDERS! Like we don't have enough to deal with???
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 8/19/2022 4:50 PM (GMT -8)
Between catastrophically unsafe toilet seats and spiders camping out next to my toilet, my bathroom is no longer a safe space :'-(
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2567
Posted 8/19/2022 5:48 PM (GMT -8)
Augh, with everyone else you have going on, you do not need that to deal with!
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1773
Posted 8/19/2022 6:54 PM (GMT -8)
NCOT.....

OMG..... Water sprayed out of my nose across the room. I could not stop laughing. I love your way with words.

Those toilet seats are tricky. Sometimes I have to wait a day or two and then try again. And sliding off of them... Yes,... I too have done that.

The bathroom spiders are the worse!! I hate those sneaky things. They should all be born with a bell jingle sound when they move! I put those critter catcher sticky pieces of paper around where I say them hang out. Sometimes I get lucky and they actually do walk on it and then are stuck..

Glad your visit with the nurse went well. I was just speaking to another person about how much healthier we both feel since getting stomas.

You are in my thoughts and prayers.

Clo
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 8/21/2022 5:34 PM (GMT -8)
Clo - The two spiderbros are still there - I am starting to become almost fond of scaryspiderbro >_>. He is much more timid than cellarspiderbro, and will retreat if there's an unexpected noise or if the overhead light is left on. So I've taken to leaving off the overhead light off: at this rate I'll be leaving them saucers of food and water, and putting on the heating for them while I'm in hospital - I'm such a soft touch, smh.

Still haven't sorted out the toilet seat. Think I'll just give it to my mum, who needs a new toilet seat. I wanted to sort it out before surgery but I won't have time now.

Today has been a kind of weird day. I've not done much, except do a little bit of shopping and buy a few frozen meals. Tomorrow I'll have to get down to business and start packing everything. And try to decide what books to get for my kindle as well - I'm really having trouble deciding. This year I've just mostly been rereading old books that I've already read, though I have just finished a book my brother gave me for Christmas - The Every by Dave Eggers. Still not sure what I think of it. Anyway I'm rambling now.
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1773
Posted 8/21/2022 10:25 PM (GMT -8)
Not much longer now before your surgery. Do you have all your supplies at your Mum's?

I thought of you tonight. I went in to the bathroom and there was this spider there.... It just looked at me. I sprayed him. With baby oil... (I didn't have any spider poison) he leapt off the toilet seat down to the floor and ran right at me. I was spraying baby oil everywhere. I finally managed to get a hand towel and thru it on top of him, I stepped on it and the darn spider climbed out the other side almost onto my foot. So then I tried to toss that towel over him again, but baby oil was everywhere.... I was skidding all over that room and that darn spider got away....

I had to chase him clear into the kitchen. And of course, by that time, I was determined he had to die cause I knew I had probably ticked him off and he was gonna bite me in my sleep. I finally got him.

Don't feed the spiders. You don't want them to multiply while you are at your Mum's.

Please try to check in so we know you are ok. Gosh I wish we all lived by one another--we could help each other out.

(((Hugggggggs)))
Clo
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11145
Posted 8/22/2022 7:34 AM (GMT -8)
Clo - I'm packing today. My mum is coming over to me because we need to do a few things in town first, then we're going back to her place. Unfortunately the bus she was gonna get never arrived, so now she has to wait nearly two hours for the next one - how dare the bus company even call themselves a 'bus service'? Anyway, I'll sleep overnight at my mum's because her house is much closer to the hospital. Got to be at the hospital by 7am. Obviously daren't rely on the local bus (which doesn't even go all the way to the hospital anymore, which it used to), so I'm getting a taxi.

I had to laugh at your battle with the poor spider. Was it a very large one or poisonous one? Don't worry, I wasn't remotely serious about feeding the spiders - the last thing I want to do is come back to a flat which has been overtaken by spiders, particularly the massive house spiders. (Well, 'massive' by UK standards.)

I'll post before I leave but don't know yet if I'll be able to post from hospital. It depends on if I can get 4G on my phone, as there's no wifi in the wards.

*hugs back* :p
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2567
Posted 8/22/2022 7:41 AM (GMT -8)
Clo!! You had me LOLing again - spiders and baby oil! Oh my. I've had to resort to spraying some strange things at spiders, using whatever is at hand (Windex and hairspray come to mind) but never baby oil!!

Best wishes to you NCOT, I will be thinking of you.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 19273
Posted 8/22/2022 8:24 AM (GMT -8)
I can't stand bugs of any kind, lol. I have my house exterminated which helps a lot. I also use an outdoor spray called Cutter that is non-toxic to pets & kids. It attaches to the water hose & easy to use, lasts about 12 weeks. It does the trick on over 100 different species. I spray the yard, bushes & around the foundation of my house. If you live in a house this works, but in an apartment it's a different story for sure.

NCOT your new sig line is showing up, it takes a bit for it to catch up.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2469
Posted 8/22/2022 4:19 PM (GMT -8)
In my thoughts, Miranda. Hope that everything goes easy peasy with the surgery tomorrow!

All this spider talk has to stop ... it's making spiders everywhere bolder. There was one on my toilet seat a couple nights ago. Thank the gods I turned the light on or I would have sat on him! Instead I flushed him smile
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