Thanks for your reply Woz

hope you are so far doing well with treatment, any tips or helpful points would be great.

How soon after having mask measured did your first treament start if you don't mind me asking ? I am due

to be measured tomorrow Tues.

wishing you all the best 

paul 

Hiya Wozzer, 

hope all is ok with you ?

Had my mask fitting on Tuesday along with CT scan.

its a strange sensation with when the blue dye gets down to the groin area, along with this the mask going face same time, that said i did ok and another hurdle jumped.

Start chemo & radio 1st June, nurses said I will be in hospital most of day but in some ways can't wait to get going now as it's been the longest darkest period of my life, no doubt mate you felt similar , the waiting is punishing but must admit last week or so knowing that it's not that far away has softened the anxiety.

Will be in touch soon but in the meantime you stay strong, I wish you all the very best .

Having a few bottle of beers tonight ( first time in weeks)

Paul x

Hello mate

Sorry for the delay, it's been a funny ol' week....

Good that you have your start date!

Am almost at the half-way stage of treatment tomorrow is 15 of 30. First two weeks were pertty easy going (no chemo), but it all caught up this week. Getting the right dose of morphine wasn't easy - but hopefully I'm there now. Main pain is from back of throat and ulcers on tounge.

So that meant I was using the PEG for all - food, water and medicines.

As with most things, it was a lack of fluids that made me feel worse :-(

Feeling better now and ready for week 4...
 

Woz

Hi , my husband was diagnosed at eight years ago with tonsil cancer and secondary lymph-node,He had both tonsils removed a full neck dissection and eight teeth plus radiotherapy no chemo.

The worst thing for him he says was the sore mouth and not being able to eat and drink ,he wishes he had a peg fitted.

He has now been clear for seven years and the homely problems he has now is that he has to drink water with every mail due to having saliva glands removed.

please feel free to ask anymore questions.x

Hi Deb

thanks for the info on your husband, it must have been a tough period loosing his teeth and then not being able to eat/drink properly. It's nice to hear he is well again and living a nearly normal life once more.

I don't know yet wether they will fit a peg as it was a little unclear but consultant did say they could fit one during treatment if they had too.

My treatment starts Monday 1st June, it been a hard road waiting to get to this point, just want to get underway now on back on the recovery road.

I don't  know what to expect of how my body will react, I'm  sure I will be asking some questions further down the line.

Just want to say thank you for your information so far.

Paul x

Good luck for Monday you can do it baby steps , keep on top of pain killers when the time comes and remember hydration is the key keep on top of water wateeandmore water.

Hazel x shout out if yiu need help 

Hazel x

Thanks Hazel

Will take note of drinking more water, thanks for your

advice really thoughtful, I will let you all know how I get on next week, twins 6th birthday tomorrow so that will keep me occupied!!!!!

Paul x

HI

Hope the treatment goes well for you, Ive just been diagnosed a few days ago, MDT on 4th, at the moment its T2N1, not had PET scan yet. They have said surgery first, tonsilectomy, neck dissection and teeth removal, not sure if all at same time, followed by some kind of RT/chemo combination.  Hope to know more soon.

Best fo luck to you

Pamela

Hi Pamela, 

it's devastating to diagnosed with such news, when I was told I went numb for a good couple of weeks trying to come to terms.

my consultant said in the beginning it was likely they would remove my tonsil, 4 back teeth and maybe my lymph nodes but we're undicided for serveral weeks and eventually said I was going to have chemo & radio.

i had a dentist inspect condition of my teeth and confirmed they were in decent condition and no need to remove. 

My experience so far it's about sharing feelings and letting emotions out, don't bottle them up and it actually helps relieve some stress by letting go.

it takes its toll waiting for next steps but don't forget your in very good hands with the NHS.

i wish you the very best over the coming weeks 

Paul x