Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

And @Silkierabbit the issues between dentists and GPs and the overlap of care is v frustrating!

Yes @dotty2. With luck I’ll never get another 4 months off work to bond with and train a pup. We’re not due another pandemic for 100 years either.
Pup is very calm and chilled - completely vaccinated and ready for walkies.

@LemonDrizzle10 ahhhhhhhh 🥰🥰🥰🥰 more more more 😍

It’s DD’s first birthday today, the sun is shining and I have woken up with some eyelashes. Maybe I won’t need the Rage Room today (although it’s probably too early in the day to call it)

A very happy birthday to your DD @WorryMcGee . I hope you can bury the rage under sunshine and cake for one whole day at least.

@LemonDrizzle10 I thought the same about our new cat: might as well do it while I'm going to be at home a lot. It has also given us all something different to talk about at a time when life is otherwise a bit dull.

@Catswithhats - EC gave me ulcers too. I tried gengigel and alloclair mouthwashes which both aim to help the gums heal in different ways. I also tried gengigel gel which you dab on, and manuka honey - both dabbing it on and holding a spoonful in your mouth. (Difflam contains a painkillers so numbs them, but I don't think it really helps with healing, though I might be wrong.) My oncologist was dismissive about the honey, but there have been some small-scale studies which suggest it might work. I'm not sure what out of all of that made the difference, but they did heal, so something worked. It's miserable, so I hope you get some relief soon.

@Catswithhats I've had such a sore ulcerated mouth on my maintenance chemo for OC to the point where I couldn't eat and had to buy a blender to puree food. The chemo unit said to use the Difflam every 3 hours to get it under control which did work and then when my mouth was better I went to one dose every single night after I've done my teeth. I have it on a repeat prescription, don't buy it! I've been on these drugs for 20 cycles now and the ulcers still appear out of nowhere and then I revert to the 3 hourly method until it's under control again. I also bought a pack of soft children's toothbrushes as they are smaller and you can clean your teeth more gently when your mouth is bad. Also, avoid spicy and sharp foods like crisps when you're having a flare-up. I ate some cheerios the other night and grazed my tongue which then wouldn't stop bleeding and was so sore for a couple of days, it doesn't take much to set it off. Ulcers sound very trivial to people in Normal-land but they really get me down, it's horrible when your mouth is constantly sore and you can hardly eat.

@WorryMcGee very happy first birthday to your DD!

@WorryMcGee Wishing your DD a very happy birthday!
good news about your eyelashes too!

I was told to use zero alcohol mouthwash after brushing my teeth with a baby toothbrush. I have on occasion woken with the beginning of a mouth ulcer in the middle of the night - I get the mouthwash on it straight away which has so far stopped them getting worse. Yesterday I got some high flouride toothpaste on prescription from my dentist - hoping to protect my gnashers.

I’ll get some more pup pics. She’s a border collie called Wilson. Her name is a tribute to my collie who I lost recently, he was the love of my life (obsessed with tennis balls). It was his actions that alerted me to my breast cancer.

Wilson!

Thanks @Silkierabbit that’s reassuring, when I googled it seemed to say I should be back to normal within a few weeks. I have been carrying on as normal so this is a prompt to look after myself better. My Covid came from a friend who said she just had a cold but it turned out later she hadn’t tested. I was silly to go out with her really, but it was a way of managing my anxiety at the time.

@Catswithhats have you had iron and B12 checked? That could be contributing.

Happy birthday to @WorryMcGee s DD here’s my grandpuppy to celebrate with.
What @LemonDrizzle10 said about mouth ulcers too. Worked for me.

I got Bloods done this morning, and as they moved phlebotomy yet again I did my days step count walking round the hospital looking for it! There are volunteers in tabards there to help you find places. That’s a sign of a poorly laid out building to me. When I got there it was deserted (as presumably nobody else could find them either) so no waiting around.

@TopOfTheCliff cute pup! What’s yours called?

It appears we're all suffering with our mouths! I've just been to the drs for a painful mouth. I've got antibiotics because the roof of my mouth is literally covered in pustules and my tonsils are not doing anything at all to stop it spreading so I've had some bloods to see why it's suddenly gone out of control.

I'd say there are at least 50 pustules all over the uvula, roof of my mouth and near my tonsils but they're not swollen or red..

I've got difflam, clarithromycin and some mouthwash. No penicillin because I'm allergic (anaphylaxis)

My dog. Her name is Holly :)

Oh my goodness, your Holly is sooooo cute @FangedFrisbee

The pup is Wilma. She is hyperactive like my DD.
I just got my blood results. All okay but being overweight is affecting my liver and I am drifting towards type 2 diabetes. Time to get a grip and lose the excess. If I survive the cancer then diabetes and heart disease is the next threat. In a way it’s good to have a wake up call as I have been a bit complacent.

Went to breast clinic today.
had very painful mammogram, I understand why they had to squish, not complaining, just moaning. Then scan. Oh great, two areas of concern.
I cannot hop back on this merry go round, I literally just got off it. I’m back at work, my hairs coming back, I was looking to the future.
Biopsies taken, results in a week to ten days.
It’s not even been a year.
I would like to put in a complaint please ( only slightly joking)

That's rotten @Podgedodge - something we all dread. The only positive is that they are on to it and you know they're being extra cautious with you. Everything crossed that these become areas of no concern! In the meantime, whatever you need to get through the next week or so.

Sort of connected - has anyone got a link to the mountain lion story?

My sister has the same dog, Lenny. Hes 15 and not going anywhere. The vet wanted to put him down just when covid started said he had lung cancer. My sister was adamant she was taking him home and to this day shes convinced he had covid. It will be heartbreaking when he goes. He was the son they never had after four girls. Then the boy came along when she was 43😯 hes never even needed a lead so beautifully intelligent.

Loving all the doggy spam. I would love a dog but only one that sounds like your sister’s @EachandEveryone ! No guarantee of that so happy to enjoy other’s pups!

@Podgedodge thats truly crap. Sending you positive thoughts and fingers crossed.

I’m quite excited as tomorrow as it’s the next stage in my treatment…my first Phesgo injection. I feel so grateful it’s 2023 and it’s invented! Hope it’s not a big needle though! 😂 Then onto the next block of chemo. Sigh.

@Podgedodge I'm so sorry to read your update, it's really not fair after all you've been through Xxx

Sending all the positive thoughts and hugs I can your way - I'm in the same position so know how you're feeling.

Omg all the dogs are so 🥺 cute.

Well, I am sure, in my positive moments, that it’s too soon for metastasis or recurrence, so it’s scar tissue which is being difficult.
That sounds right to my ears. I’m going with that for the next week.
Thank you so much for lovely replies and @Chocolateismyfavourite , so sorry you’re in same boat. The universe definitely needs a reset…

@ajandjjmum https://www.cancerpal.co.uk/amp/what-it-s-really-like-to-receive-a-cancer-diagnosis

@Podgedodge that is so rubbish. I am sorry.

@TopOfTheCliff Is it definitely being overweight that's affecting your liver, not being on AIs (if you still are)? I had to give up Exemestane as it was affecting my liver.

I might be joining the rubbish mouth brigade soon but on the dental side. I've got a dental appointment to see if I have any issues prior to starting zolendronic acid infusions. I've had to go for a private dentist as our NHS one has gone to pot. Ever since I made the appointment my teeth have been hurting & I think I will find out that the chemo has wrecked them.

I'm also finding that post-exercise, instead of the nice ache I used to get the day afterwards, I now get aches that are more uncomfortable & sore. Still I know it's good to be active & at least I'm able to be, even if I don't like it!

Sending healing vibes to sore mouths & hoping for unremarkable results for those awaiting them.

Hi all.
Can anyone help me re who I talk to about this? Is it the cancer hospital helpline or my GP? I haven't had any medication to cause this, I've been on antibiotics since last week, and pain killers etc but I've not had any chemo type things?

It's only on the left hand side of my throat. Absolutely agony