[EmmaParticipant]

Mum's now developed a sore tongue. She's on her 3rd week of the 1st cycle of CDT and now salty foods are too salty for her and it hurts to brush her teeth as the toothpaste stings. She's mentioned it to the Dr on the ward who has prescribed a mouth wash. This hadn't arrived by the time I left at the end of visiting this evening and was wondering of anyone else has any advice?
I've not been impressed with the staff today as yesterday they made a mistake with mum's dex and last night they didn't give her the cyclophosphamide! Luckily mum has still been on the ball and brought it to theur attention, i was not impressed!

Emma. X

[HelenParticipant]

Hi Emma
2 things, if mouthwash stings ,and is her tongue very red? with white patches? If so I'd very tactfully suggest your mum has mouth swabs taken, could be thrush, very common on high dose dex, then she needs correct treatment . Soon or she wont feel like drinking if her mouth gets too sore. Try not to get too het up about the ward, it's not haematology so will be alien for the ward staff not knowing the routine with the drugs , or the side effects. Ask to speak to the haematology specialist nurse and get her on side. It's hard to sit on the sidelines when your loved one is suffering. Keep in touch
Love Helen

[EmmaParticipant]

Thanks Helen I'll speak to them about thrush today. She's on the haematology ward so that's what was worrying me that they made mistakes but I'll not dwell on it I'll just make sure I keep an eye on it. Mum's haematology nurse is really good and she is visiting mum everyday. Unfortunately she was off sick yesterday but I made sure they contacted mum's Dr to let her know about the mistake with the meds and seek advice. Basically one nurse only gave mum 1 dex instead of 10 and another didn't give her any cyclophosphamide at all! This is the last week of the 1st cycle so I reassured mum by letting her know 1 down 5 to go!

Xx

[tomParticipant]

Hi Emma and Mum

Sorry Mum's got a poorly mouth, I was told to use a soft tooth brush during my treatment on CTD and I always have used mothwash but used it four/five times as much as i do when on treatment.

Get the Nurses to get the act together I had a chart for all my drugs to take at a certain time I would make sure that your Mum is getting the tabs at the correct time and ammount its what the Nurses are there for.

Keep strong and Give my Love to your Mum

Love Tom "Onwards and Upwards" xx

[HelenParticipant]

Hmm, oh dear it's not easy is it? It's a good job you were there! How is your mum today?
Love Helen

[EmmaParticipant]

Hi Helen,

Mum wasn't too good yesterday, her tongue was better but her throat was very sore. She's using the mouthwash and says its helping. She is now on her 3rd day post dex so I'm hoping she has a bit more energy today, she just wanted to sleep yesterday but managed to get the energy to get up out of bed. I only stayed 30 mins yesterday as she was so exhausted. Me and my husband are taking the kids to center parcs on Mon, it's been booked since Jan. I'm nervous about leaving mum but arranged plenty of visitors and going to get her tv and hospital phone up and running so I can keep in touch. Just hoping she's ok while I'm away. I'll be back on Friday so not too long away.

Xx

[GillParticipant]

Do check with the doctor but Stephen used Corsodyl toothpaste and mouthwash during treatment (not good to use it on a long term basis but it really helps)

He managed to get through all treatment with not one ulcer or mouth problem.

Good luck from Gill xx

[Author]

Posts