HI AL, 

Hope you had a great Easter .. we did get spoilt with the weather  too 

Well my PEG is no longer being fitted on Thursday and as of today was  moved to Monday at 8am .. thats one early day with travelling too .  I am actually wondering if my PEG should be fitted under GA as my soft palate is a such a swollem mess and I am still on blended soft food and I gag at the simplest thing, even taking painkillers is a task in itself.  If I talk too much i gag lol.. it darn ridiculous an my worst fear is they will after abort once I am in the theatre . 

My dads PEG was to his side.. so I can see how centre would be better ..    we could do with a little button that we can press and it winds it in when its not needed lol .. like those power cables on some the old vacuums lol .. 

Mask fitting for me tomorrow , CT and bloods .

That is very odd about neck pain going like that . i still get mine, it comes and goes ,, do you have to have some of your therpay on Saturdays , my hospital said three of my Monday therapies  are bank hols so I ill be going in Saturdays instead those weeks

Jo

x.. 

Hi Jo,

I had a great Easter thanks despite the discomfort of the peg.

What a trouper you are, your palate issues sound absolutely awful yet you are still keeping a sense of humour about it all......my heart goes out to you.

I would defo ask about having GA for your peg, looking back I can't really see any reason why they couldn't have done mine under GA.

Mask fitting will be a breeze, I had read some reports that it can be claustrophobic but the mask is meshed and I didn't feel that at all....in fact I found it quite relaxing because it's hot when they put it on.

I'm definitley gonna keep mine afterwards and maybe turn it into some kind of creepy wall art :laugh:

My partner came up with a thought that maybe what I was feeling was a hangover from the tongue biopsy now that has settled down I'm feeling the benefits....I think she may be right (what am I saying!....she's always right! hahahahaha!)

Looking forward to exchanging treatment notes as we progress thru and praying that your palate heals up soon.

Al

xx

Hi Al,

Today was my mask fitting day .. what an experience that was .  Very hard to explain but I can totally see how people find it a little unpleasant , obviously not painful but claustrophobic and having to stay so very still for 15 minutes.  I was so worried I would have coughing fit as I get a lot of mucus already due to the location of my tumour. 

Also had a set back last night.  Yesterday I was in an awful lot of pain, far more than usual .  Then cleaning my teeth before bed my mouth flooded with blood and my darn badly healing biopsy site had burst open . ufff. Back to having a hole in my soft palate again.   I emailed my CNS nurse and she said until therapy started the tumour was likely increasing over the weak healing area and had added too much pressure causing it to suddenly go  hence the  increased pain I had also been experiencing. 

The good news is my therapy starts MONDAY ... wow and OMG  ,! I was not expecting  so soon. I have my official timetable, but they failed to realised that my PEG was due to be fitted Monday too lol.. so , things went into a little chaos and PEG was booked as an urgent for Friday instead. 

I am back to meet with my Consultant tomorrow, more bloods and a covid test and she wants to check the bopsy wound and think about increasing pain relief

So ,level pegging i do believe .. you start Monday too , yes?  

Hi Jo,

Wow!, its all systems go!, thats great news that the treatment has been brought forward I'm so pleased for you, and awful about the hole in your palate, omg how do you cope with it?!. I feel like such a wuss whinging about a sore throat.

I actually found my very first neck MRI the most claustrophobic of all my experiences and the mask fitting was not at all unpleasant for me.

Peg tomorrow too!!....brill! you should be over the worst of the bruising by then and ready for your treatment.

You have now overtaken me...I have a PCR test on Monday and start the actual treatment on Wednesday. Are you having the same as me, 1 chemo session on the first day and another on the 5th week?

Hope they can sort that bloody biopsy wound out for you.

Al

xx

I'm really sorry to jump on your post , but I've been reading your comments , so sorry to hear your diagnosis stay strong !! I just wondered if you could help me a little -So I've been ill for quite some time , I have posted in this group before, I've been having lots of problems with dizziness and just generally feeling unwell , my anxiety is through the roof too which doesn't help. 
my throat always feels as though I'm being strangled on a daily basis, my throat is sore and I have had a lump in the back of my throat for the past 5 months but I didn't pay attention to it as I just thought it was an ulcer, i have also lost 2.5st since Jan - I went to the GP yesterday and he had a look he asked me about my symptoms and asked me how long I've had the bump in my throat - within 10mins he has scheduled an emergency app with the ENT doctors in hospital - he won't tell me anymore other than he can't diagnose me because it's not his specialty- I understand this but now I'm scared out of my mind has anyone had these symptoms ? 
thank you 

ka. X 

Hi EnT referrals are the quickest way if being seen I kniwv my trust has a general waiting list if 37 weeks for routine. Try not to read too much into anythjng. I had tonsil cancer 4 years ago it's no symptoms apart from lump in collarbone I lost no weight had no issues with throat or eating . Best advise keep off dr google you will scare yourself stupid.  Information on there is mostly unregulated Waiting's hard but if you need the forum after come back on we will all try to help. Remember 99% if all referrals are NOT cancer. 
Hazel 

Hi Ka,

Please don't apologise for joining us it helps so much to air your fears and you realise very quickly that you are not alone!. The good news is that you have actually started the ball rolling and gone to see your GP, well done!.

My symptoms were slightly different to yours. About 4 months ago I noticed what I thought was a bit of food getting lodged in my throat, I didn't think much of it and tried to gargle it out...2 weeks passed and it was still there and by this time I was getting a sore throat too....another few weeks and I started getting a pain in my jaw as well....I know google is an awful thing when you have worries but in this instance I'd googled those symptoms and the three things together convinced me somethin wasn't right. I contacted my GP who recommended I go to A&E because he didn't have the proper equipment. I had 2 Laryngoscopies which really didn't show up much but the specialist also sent me for an MRI scan. It was the scan that showed up the tumour at the base/back of my tongue. That was 2 months ago and since then its been an unbelievable whirlwind of NHS amazing care!

Its so difficult not to worry but I echo what Hazel said, the vast majority of referrals are not cancer.

Stay positive and feel free to ask any questions and keep us updated on your results.

Al

Hi all, sorry I've been so quiet what with my bowel and still not knowing what is going on with my throat I'm really not in the best of places, roll on the 26th when I see my consultant. I'm so sorry that you got bad news and am glad that you are staying so positive fingers crossed it's not long until you can ring the bell after your final treatment. I really don't know what else to say as I have no idea what you are feeling or thinking as I'm still in limbo. Even though I'm quiet at the min I'm still thinking if you and wishing you a trouble free and speedy recovery.

sending huge hugs

sue xx♥️

Hello Both 

Nice to hear from you Sue, though it seems you are stll suffering badly , I truly hope you get a more posirive outcome to your next constulant visit , it seems to have taken so long for this date to arrive.

Happy news about your gland scan Al, those little chunks of positive findings really do put your mind back on track .

As for me , uff.  The PEG .. what a *** experience that was .  The intial camera down etc, no issues at all, the peg insertion, however, , holy cow!  that was truly not pleasant . had I known I would have asked for GA lol... and why so much pain after,.?  *cries ,   I can hardly move.. the slightest movement is agony and then to hear 7 to 10 days for recovery., thats not good when I have an 8 hr Chemo on Monday. . Not sure if its more of my typical bad luck, but the Doctor seemed to have resistance on the PEG insert... I remember him trying and me thinking grrrrrrrrr! WTH and the assistance nurse asking him if he wanted to relocate and he said no i'll try again   

Fun times are a rolling Al , lol .. 

Jo

x