Paula

i had nothing, no sores or anything in my mouth pre treatment

but a few weeks post treatment I had to have a young biopsy ... painful to say the least

as I had minimal saliva, keeping my mouth clean and free from infection was difficult but had to follow a good routine of constantly gargling with diphlam but also investigated other oral solutions that I talk about in the following blog page

gammaraygary.wordpress.com/.../

thankfully I was not able to eat food and had the peg feeds me as there was no way I could have chewed anything 

so I sympathise paula

how are you doing today anyway and have you learnt anything new about you cancer today as this is as much a self education process, amongst others.

vatch

Kathleen

Chip shop chips may not be the best ... even now, although I can get through them , I can’t get past my second medium sized chip, before I need a large gulp of water to get the lump down ... and I’m 3.5 years post treatment

my advice would be McDonald’s skinny fries, less of a moisture sucking vampire and two won’t glue you mouth together.

i ate a lot of fruit youghart, as it was not as cold as ice cream, it was not too much of a liquid and gave me some sense of normality that could eat proper food in the right way .... you will know what I mean there

thanks for your kind words about my blog ... there is a lot in there post treatment, so I hope it’s of some benefit

as for me getting back to normal, it was more a desire to not let cancer define me and getting back to work was a normal thing that I had to do ... in hindsight I went back too early as I was a danger on the roads especially coming home ... very stupid of me really .... but blokes are blokes

let us know how you are getting on and the changes you are having to make

vatch

Hi Vatch 

this is the gift that just keeps giving isnt it...

on tuesday I am going to have all my back teeth top and bottom removed on both sidea as i have old amalgam fillings ...my lovely dentist said is you have four tetth at the top on the fromt and four on the bottom you can eat! so im going to be lucky because i will have 8 at the top and the bototm! 

did you warn me about teeth I dont rmemeber and that for me has been oneof the most shocking things I have had to hear so farlet alone have them out ! the dentist was terrified of me by the time I left the first consult...lol...then I told him if he was taking these ones out it was going to be his responsibility to make sure I never lost another until either he or I were dead! he was afraid very afraid!

did you have teeth out? was it in your blog? did I miss this?

love Paula...x

I have my treatment plan in a rough outline for radio....six weeks five times a day 

high dose to right side slightly lower to left, soft pallat included ...so i suspect no  swallow for me after a wee while...but i will persevere as instructed...having a PEG in but not next week because they are taking my teeth out...did I mention that! lol..and I have to wait 10-15 days for sockets to heal before we start then go for yet a nother CT to measure for treatment ,also having ultrasound biopsies of my lymph nodes but not until thursday and if they are clear which they dodnt think they are ..but if they are clear even just on one side that will be teeth I did not need removed and I will be so to say very ******* angry...did I mention they were taking out most of my teeth?...!!! lol

chemo as well at the same time..but I have not actually seen an oncologist yet????? I have known that I have cancer for several weeks but have not seen a cancer Dr...so I think the system is a little squiffed!

but we rae slowly getting there

meanwhile the lesion in my mouth has grown a lot and I am now worried ...if my teeth cant survive or heal if injured what happens to the lesion...and I have no one to ask...as I dint have a cancer Dr...so its naff at the moment and I have not even started...

But im over my first big melt down and calmer again so thats good..

did i mention they are taking my teeth out!  only joking...

bye for now...paula

Hi Paula

you are perfectly entitled to have a meltdown - it truly is a crap time before you start the actual treatment. I can remember thinking cant we just get on with it - Im sure the general population thinks that you get told you have cancer one day and start treatment the next - they have no idea of the timeframes. As for the teeth ! I have to say we truly weren’t expecting that my hubby would loose any as we’ve always been so careful. When the dentist said we’ve got to take - for him only 4 - it was still a shocking moment. It really affected us in a way we didn’t expect! So I can understand your shock and anger. Nit only have you got cancer, got to have chemo and radiotherapy, wont be able to swallow they want your teeth too. 

Your treatment sounds much the same as my hubbys - 6 weeks of radiotherapy- 5 days a week plus chemo once a week. He also had a neck dissection afterwards as it didn't clear hus lymph nodes. When you go for your planning CT be prepared for them to make your mask which they use to accurately line up the radiotherapy beam - take your time - take deep breaths and tell the radiographer if you feel claustrophobic- they will do their best to get you through it.

wishing you so much luck as you start your journey.

best wishes 

Emma

Paula 

xxxxxx

Emma

Hi paula

sorry to hear about you teeth

i did not miss it out of my blog .... it sort of got missed with me

i had a pre cancer treatment check up with my local dentis and they then sent this on to my medical team .... it was assessed that I did not need to have any out

however a few weeks after treatment I had very painful mouth ulcers ..... and an open sore on the side of my tongue that eventullly sent to get a biopsy

now Ulsers in the main are annoying but try having them after 6 weeks of tomotherapy ..... the pain was unbearable and depressing at times

when my hospital team did a full investigation as to what was going on the told me a if they had done the dental check that they would have taken out several top and bottom teeth .... and this is what what causing al my problems

i do believe though you post treatment you can get them all fixed ..... but someone else will have to confirm the extent of that

It’s good to hear that you have you treatment schedule, have you had your mask fitting yet? That’s a strange experience 

two little tips if I had not already mentioned it

1. Get loads of e45 cream ....don’t get a lotion it made differently and make sure it’s water based....rub loads of this around you neck area after every radiotherapy session .... start early and keep it it all the way through ... it helps believe me

2. As you are have chemo you may need to find yourself a place in the house to put all you drugs ... I bought myself a little wheeler plastic unit that I put beside my bed ..... it helps ..... you get loads of syringes too to feed your peg ... I put them all in this unit and laying on my bed was a nice quiet place to feed myself ..... I did not think it was the thing to do at the dinner table with everyone watching!,,,,

hows you doing anyway?

vatch

Hiya.. I'm ok.. Dentist again tomorrow then surgery to have my teeth out likely on Tuesday... Joy! They don't provide any post radio dental funding and don't recommend you have dentures or anything for fear of ulcers anyway... So now I wonder what will happen to the rather large hole on the inside of my cheek and tonsil and soft palate.mi guess I will find out! Lol... It is a truly unforgiving thing this disease and it's barbaric treatment.. But we persevere.... Thanks for asking... Lol... How are you? 

Paula I’ve just added a bit more to my latest post for you