Dates, mask fitting done!

Hi. Things are moving space then. Ask them to cut eyeholes in your mask. That helps loads with the feeling of being uncontrollably pinned down. Today will be the longest you will ever be in the mask. I was usually ten minutes tops. I am terribly nosey so I just watched what the machine was doing. You can imagine a favourite walk or a holiday to keep yourself occupied. Most units play music and some folk take their own in having made a playlist. 
The treatment itself is painless. If you have chemo first you’ll be full of fluid so the mask will be tight but the team can adjust where it’s clipped down to make you more comfortable. 
I didn’t  have a stomach tube so I’ll leave that to somebody else. Have faith in yourself. You’ll be through this in no time 

Hi As Dani says today will be one of tge longest days with mask on. I had scans most week at least once a week never lasted longer than 4 tracks of music so around 12 minutes. I took my own music in on a c d. Yes ask for  eyeholes they do help. I also practised lying on bed at home put timer on fir 10 minutes and took my head on a bike ride favourite walk anything  to distract me. I then put into practice whilst treatment was happening. Never got to end of a walk. 
Yes on chemo day yours pumped full with saline so the mask will he tight just ask them ti adjust the next day your  face should return to normal. 
Likewise  I didn’t have peg/rig sure someone will pop on. 
Hazel 

Alfienangel said:

I've got to have a RIG put in, don't know much about them  betting somebody does???????

It's not the most fun in the world having one fitted, not painful as such but uncomfortable, you'll need to swallow a naso gastric tube first which they then use to inflate your stomach for the fitting. That was the worst bit for me, once it's down you'll get sedated and remember very little about it. 

Can be significant pain though over the next few days in your tummy, make sure you get, and take, plenty of pain relief....even if it feels OK before going to bed (for example) take stuff, was a mistake I made in 2013 to my great regret in the early hours.

Maintenance of it and using it quickly become habit, it's really not a big deal; I've lived using one for around eight months over two lots of treatment, nothing to worry about and a sound insurance policy in my view.

Hi Helen, yes having the mask on is very scary. I sometimes have a bit of congestion so found breathing through my nose difficult and on one occasion had a bit of a melt down. I did some steam inhalation prior to my treatment which helped. I didn’t have the eyeholes cut out, just shut them and focussed on my breathing to keep calm and put myself somewhere else.

I also had a RIG tube fitted and became reliant on it for getting my Fortisips into me later on. Installing it was OK but I did have an ongoing issue with a minor infection at the site. Overall it was for the best.

All the best for your treatment.

John

HPV + cancer of tonsil and tongue 2021

Hi, Helen, I had a RIG fitted before my treatment started, so glad I did. Like Mike has said it's not a barrel of laughs having it done, but the benifit from having it, is well worth the few days of discomfort  it gives you. They will show you how to use it and flush it out, plus give you a good supply of painkillers. When you start your treatment if you are having trouble eating, which a lot of us do, the RIG will take the worry of not eating away. All the best.

Regards Ray.

Hi Alfieangel

Alfienangel said:

Did you have your RIG put in?  How's this week gone/been???

I did eventually have my RIG put in, on Tuesday as they didn't have a bed available for Monday!  Still very painful when I cough (only done this 3 times this week) or laugh. It is settling down though each day is a little better. I haven't taken morphine today yet and only took 2.5ml once yesterday. I'd say the first night and following day were the worst, but if you are given painkillers regularly (ask them!) then that works wonders!

But I'm mid way through treatment, so your experience will likely be better than mine if you're having it before! Also, I was nil by mouth on the 2 hottest days of the year (6 hours on the Monday before it was cancelled, then about 29  hours on Tues/weds), which made it much worse. My saliva has already started to dry up so not being able to drink water was horrendous and I lost my voice (my husband would've appreciated that!).

All you need to focus on is that the pain will pass, you can throw lots of heavy duty painkillers at it and doze quite peacefully; plus you'll have a backup if you can't swallow at some point in the future.

Helen x

Hi Helen. How’s it going generally. Good to hear you’re half way through xx

Hi Dani,

Apart from the RIG pain, which takes most of my focus currently, my saliva is definitely drying up and everything tastes of nothing, so appetite has dipped. But I'm still eating everything orally - I've just had lasagna, broccoli and  coleslaw and they all tasted the same, just different textures. I've got lots Fortisip drinks, which the dietician gave to me last week; so if I feel I haven't had enough calories I have one. My mouth feels better this week, I stopped overbrushing and I'm using Duraphat only at night, it was definitely burning my mouth.

Chemo on Monday though, so can't wait to get that behind me and then focus on getting across the finish line.

Helen x

Hi Helen...I'm losing it. I've been on another thread and complained my post to you vanished...sorry, it's here

I'm in awe that you can eat anything. Well done. Yes Duraphat has a lot to answer for. I know Chris Curtis from the Swallows is trying to work with an oral prep company to get a high fluoride toothpaste on the market without mint or SLS. See really need one of these.

Yes it's demoralising the lack of taste but it does come back. AND a huge hug over the RIG...I'm amazed anything like that is being inflicted on anybody half way through and coping with an assault on their mouth. Unbelievable. I see Ruth is in the same place. I do hope it doesn't become normal.

Anyway....keep chugging along

Hi Ray - yes, I would've been in agreement to having it 3 weeks before treatment, however, mine was put in during the middle of treatment (wk3)  and less than 1 week before my 2nd chemo, which I had this Monday, so it's been a rough ride the last couple of weeks (now riding the chemo effects, hopefully they'll calm down by Sunday/ Monday!).

I've had the RIG for 8 days now and pain has subsided, still uncomfortable sometimes, but I'm promised this will be gone in a another week. I'm not using it yet but I'm flushing water through every day, which is good for my fluid intake!

Helen x