Rig help

dpanky said:

its so bad i cannot swallow at all i can see them keeping me in hospital once they see the state odlf my throat and me x

Don't panic. You are in RT today. They will see how badly you are doing and you may well be admitted. I know you don't want too be there but it probably is the best place at the moment. One of our other forum members  spent most of her treatment time in hospital and there were times when she wanted to give up. I have just "spoken" to her. She is away in Portugal with another of our "surviviors and thrivers"

I'll tag her. She'll likely pop on as proof that it can be done. 

 Debbielouise 

Hi

O had a PEG fitted which was one of the most excruciating experiences of my life ,buscopan really helped with the stomach cramps. If you are in severe pain ask the team for better pain relief.

Mine took 1 week of pain and another week to settle. I really strugglied with it but had a great PEG nurse who was available for me to text and would visit me weekly.I never thought I would get used to it all but now I am so thankful as it was a life saver x

This treatment is brutal and I’m sorry you have to go through it but sadly the alternative is unthinkable….

As Dani said I had a really tough time and spent most of my treatment in hospital being very i’ll but thanks to the support of my family ,my hospital Team ,Dani and Hazel and the rest of the lovely people on this site I made it through the darkest of days.

Stick with us on the site ,trust in your hospital team be in email or phone contact with your cancer nurse specialist you will need their support and hopefuly they will be really helpful over the coming months.

Im here in portugal with another survivor we were both in your position several months ago and now we are celebrating our amazing lives which we could only dream offxx

You can private message me anytime x

Debbie

thats amazing she on holiday and yes today i want to give up no way can i have treatment when iam choking on this thick phelgm every 2 mins ive contacted my radiotherapy nurse and my cancer nurse this morning so awaiting their replies it would not surprise me if they do admit me back in ttoday tbh x

Hi when I couldn’t swallow it was the tube for me and I constantly pulled mucus out with my fingers. I was using- nebuliser 6 times a day and during the night. Don’t worry about loosing swallow ability it comes back I was off my by tube week 3 of recovery. I also had a nebuliser for the bedroom . I kept doing exercises to keep the muscles working although nothing was going down my throat. You may be admitted so maybe take a bag with you. Remember your medication as sometimes the wards aren’t on top of pain medication.  

sadly what you’re feeling is par for the course fir many please don’t give up  

Hazel x

Hi Dpanky

Believe me when I say I thought I would chickrn to death due to the thick and sticky mucos which seemed to last far too long but for the majority of us it does get soooo much better I only have a little in the morning or more if Im i’ll/ have a cold etc .

My top tips which can help:

Keep your head elevated I had 7 pillows now on 4 you can also ask someone to elevate your head side of bed on Bricks /old hardback books etc

Try all the medications they offer didn’t help me but did help others on the site .

Salt water mouth wash, 4 times day this seemed to help 

You can buy little foam sticks to pull it out if you cant use your fingers( they have on Amazon) I went through boxes of tissues everyday for months

Dont worry if you see thick streaks of blood in the mucos I had it often and was told it was normal and not to worry still notify your team x

Nebulisers really help some people I was lucky my CNS loaned me a portable suction machine made life so much easier 

I know it’s hard but try to push through and maintain both excercises and mouth care( clean teeth use mouthwash provided by hospital.

Keep ahaed of the pain make sure your on the correct pain relief think I trued them all but finally found one that took the edge off.

Take one day at a time just get through each day it’s a massive achievement.

Above all know you can do this I wasn’t aware I had such inner strength but we all do it’s in there and this is the time you really need to find it 

Life is different now and still has its challenges but it can be sweet again xx

You can message me anytime xx

Debbie

excuse spellings Iam dyslexic x chocking not chickrn

thank you so much and yes i feel i cant carry on any more just spoke to my cns she said today they will nebulise me i so sleep sitting up since this thickening iam refusing treatment today i literally can not do it today x

Donna. They will get you through this. Trust them. They can stop treatment for today, admit and stabilise you then give you two sessions tomorrow. They won’t give up and please please try not to or all you have been through us for nothing. There are other ways to give you an airway so you can breathe. Believe me. My life was worth fighting for when I started all this at 68 years old. I would do it all again. 

Donna. Hazel is right. Pack a bag. PJs towel shower gel long charging lead phone and tablet and all your meds. Add a change of clothes. Hugs 

that’s ok Donna,

I never wanted to go into hospital but I quickly realised I had to be there and it was the best place for me at that time…

Dont give up hope …no matter how dark it gets there is light at the end it’s just very murky along the way.

I had days where I felt I couldn’t go on days when the pain and chocking seemed too much to bear… I didn’t want to die I just felt I couldn’t go on … but I think that’s normal for anyone in this position … being human wanting the pain to stop but also part of being human is the i vere dibble strength and resilience we all have buried deep within xx

Tomorrow is a new day Donna and hopefully a better one x sending you a big hug

Debbie