I know how you are feeling.  I will be having a throat biospy in the coming weeks.  I was told my appt could take up to 6 week to arrive which doesnt bear thiniking about.  Every moment of the day I am lost in thought of what may lie ahead.  I feel ike I have been carved out inside... hollow  , numb and unable to communicate with others.,, people speak to me and I am not even aware,  I am so closed up inside my own head.. 

Sleeping is so hard.  I did actually download an app for mindful meditation and relaxing, which I  must admit , it did acutally distract me and send me to a better more relaxed mindset and I fell asleep to it .  Annoyingly it is only free for 28 days so looks like I may need to invest for the long time frame I know is ahead .. if my biospy takes 6 weeks and my results 2 weeks I have another 2 months of this . :neutral:

Oh my that is such a long wait. Hope you get it done sooner, it is so difficult when they find something and I feel it's the not knowing and the wait after biopsy for results is the worst, I agree you cant function or turn off no matter how much you try. I have everything crossed for you that it is quick, good news and you have a speedy recovery x 

I hope all went well with your GP yesterday , Sue 

Jo

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Hi jo,

I feel a little more positive after seeing GP, there was some abnormal cells but the results were inconclusive which apparently is a positive sign. She hasn't received all the results from hospital so couldn't totally rule anything out but it's a start and a little more than I knew before I went to see her. Hopefully my appointment with consultant will arrive soon and I get confirmed answers.

hope you are starting to feel better and praying for good news for you.

hugs

sue x

Thats such great news Sue.  I was thinking lastnight that the fact they dont seem to be rushing you back in , is a positive sign , in that they dont think your condition serious and seem to be letting you now drift through the system . Hopefully you are able to eat better now ? How is the biopsy site, can you see yours ?  Was you lesion sore before you were referred by GP ? 

Sadly, I think all my stitches have now been rejected by my body but I am not in so much pain and even find I am not taking so many painkillers .   I am glad I went and got anitbiotics last week though as they did seem to reduce the inflammation hugely even though the Dr said it didnt look infected , the pain was making me question that but then most peoples stitches dont pop out  in less than 48 hrs  of an op so maybe this was what the pain was all about.   I am not tempted to try and eat anything solid until I see the wound start to close up ..its pretty weird ( and grim)  to be able to see above the roof of your mouth lol TMI  I know ... the only thng is how long it will take to heal over naturally as they took quite a lot away * shrugs  

Jo

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Hi Sue,

At least you have some idea of where you are now, fingers crossed you get more good news going forward!

Jo

Glad to hear the biopsy site seems to be settling down now.

It sounds like you are both tough cookies and I think its fantastic that you are both remaining so positive. Its inspiring me to do the same although my throat has been very sore the last couple of days and it feels like the lump is getting bigger (probably just my imagination). Time seems to have slowed down now. I have my needle biopsy at 2pm today, I'm pretty relaxed about that at the moment but once its doen it will be another box ticked.

I just want rid of this thing now!....today in particular I'm angry at it (how stupid is that?)

Alan

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Hi Alan

All the best for todays biospy .  I have read many who have had these tyoe of biopsies and nobody said it was a bad experience .

And yes today my mouth feels soooo much better and I  have yet to take painkillers today so that is progress for sure .  I have taken so many tablets this past week I would rattle if you pick me uo and shook me lol

I think we experience every emotion there is during these times .  The slightest thing upsets me these days and yesterday I had my first little meltdown but i think I had  been trying too hard to put a brave face on and my cork  popped .. it was needed and I am sure it wont be my last..

Treat yourself to something special after your hospital appt ..   

X

Hi Alan,

yes I feel a bit more positive now and my throat is starting to feel loads better at last, I still have the odd meltdown which is to be expected, luckily my hubby just shrugs it of and I never lose control in front of my kids or grandkids, I would hate for them to see devils daughter that comes out when I lose it .

good luck with your needle biopsy, hope it is quick and painless for you.

hugs

sue x

Hi Ladies,

Just got back from my needle biopsy......forgive the language but ******* ouch!!.....it wasnt what I expected at all....3 biopsies he took with what they call a 'punch biopsy needle' feels like someone is kicking you in the neck each time......I'm so sore now!.......what a wuss! :laugh:. as my girlfiend keeps reminding me " you want to try giving birth!"......that old chestnut! :laugh:

It wasnt what I expected at all....but hey ho its another box ticked.

Up to 10 days wait for the results now......watch this space.

I'm scared to move my neck now :laugh:

I'm off for a lie down....have a good evening both of you

Alan

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Aww bless ya, 

definately rest up and yes it's another box ticked as for the pain I personally would rather give birth lol.

sue x

Oh ... a punch biopsy? a new one on me  , I have a vision of Alien opening its jaws and that thing punching out lol 

Wish you  a chilled evening ahead  
 

Jo

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Evening Jo/Sue,

I hope you are both well?

I've just got home from my tongue biopsy!...what a weird experience!.......out cold in seconds and woke up feeling so chilled....I had to ask if I was awake :laugh:....it all went well and I am relatively pain free....... at the moment.....I'm also throwing some milkshakes down my throat whilst I can.......the surgeon took 5 samples but I havent had any stitches. No extra painkillers prescribed either so I will have to see how I feel in the morning.

The surgeon is talking like its definitely cancer even before seeing the results of the biopsies and is already preparing me for potential radiotherapy....I was a bit gutted when he said I woud almost certainly need a stomach peg before I start the treatment becuse it will be too painful to eat!.....great!! something else to worry about!.....and he has also ordered a full body PET "scan just to be safe"....again slightly worrying but he said he may cancel that depending on the results of the biopsies.

So all in all a bitter sweet day.......overall relief but more things to worry about.

To end on a plus note as long as it is above my neck then he says it is totally curable.

Anyways I'm on the sofa chilling....will take some pain killers before bed and hope for the best in the morning.

Alan

xx

Evening Jo/Sue,

I hope you are both well?

I've just got home from my tongue biopsy!...what a weird experience!.......out cold in seconds and woke up feeling so chilled....I had to ask if I was awake :laugh:....it all went well and I am relatively pain free....... at the moment.....I'm also throwing some milkshakes down my throat whilst I can.......the surgeon took 5 samples but I havent had any stitches. No extra painkillers prescribed either so I will have to see how I feel in the morning.

The surgeon is talking like its definitely cancer even before seeing the results of the biopsies and is already preparing me for potential radiotherapy....I was a bit gutted when he said I woud almost certainly need a stomach peg before I start the treatment becuse it will be too painful to eat!.....great!! something else to worry about!.....and he has also ordered a full body PET "scan just to be safe"....again slightly worrying but he said he may cancel that depending on the results of the biopsies.

So all in all a bitter sweet day.......overall relief but more things to worry about.

To end on a plus note as long as it is above my neck then he says it is totally curable.

Anyways I'm on the sofa chilling....will take some pain killers before bed and hope for the best in the morning.

Alan

xx

Hi Alan, 

so pleased your biopsy is over with and up to now you are pain free, fingers and everything else crossed that you get positive news. If you have to get a stomach peg don't worry too much, it's pretty simple to use and heals pretty quickly once tube is removed, as long as the area is kept clean they tend to be trouble free which is a positive, in my job I dealt with them on a daily basis, definitely relax, sleep and take some pain killers just in case, please keep us posted.

I have just received my appointment to see consultant, he wanted to see me in 2-3 weeks my appointment is 26th April which will be coming up 2 months since I last seen him. They said it's the best they can do as they are that far behind and trying to catch up.

sue x 

Thanks Sue!,

great to hear that about the peg!.......likewise I'm crossing everything for you and your visit with your consultant.

Early night for me now but will keep you both posted on my progress.

Alan

x

Hope you have a pain free night and sleep well.

night night

sue x

Hi Alan

Great news about biopsy going smoothly.  I hope you are still comforntable this morning .  No stitches has to be a bonus .  

My dad had a peg fitted last year when he was recovering from a brain haemorrhage.  He had it done under local and it was  pretty hassle free for him .

It is good they are planning ahead well in advance . 

Hopefully your PET scan wont be necsaary . (fingers crossed) 

All the best for now

Jo

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Hi Jo,

Amazingly still pain free today!.....I have a sore throat from the tube but no pain from my tongue.....I'm hoping it stays that way but don't want to tempt fate!.

Chilling on sofa now but may go out for a walk soon as its such a beautiful day.

Feel like that was a massive psychological hurdle for me yesterday but looking back it was fairly stress free in the end. I certainly won't have any fear about going under again if I have to.

I hope you are well?

Alan

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Hello Both

An update:

Met with my consultant yesterday and was confirmed i have cancer.  I am awaiting a pet scan too  and some more info on biospy . Presently it is presenting as squamous cell but they are checking no deeper tissue involved.  Forecast is 6 weeks radiotherapy and some Chemo .  A peg will also be fitted .  Had teeth xray and likey some teeth will need removing before treatment 

In a daze today . Spent most my night crying even though I was prepared for cancer it still feels like I  have been struck with a wrecking ball 

Hope you are still pain free Al and hooe you get some  postive news Sue on your next appt 

All the best both

x 

Aww jo I am heartbroken for you and so sorry to hear that, I have everything crossed for you that it isn't deeper or anywhere else. Wishing you an easy time with your treatment and hoping you don't get poorly off it. Also Wishing you a speedy recovery.
Sending the biggest hug to you

sue xxxx

Hi Jo,

So so sorry to hear the bad news, I'm gutted for you but from what little I know of you I know you will beat this thing. I will also be crossing everything in the hope that it doesn't show up anywhere else.

I spoke to a friend of a friend yesterday who has been thru the same thing, tongue operations, chemo and radiotherapy and he said it wasn't as bad as he thought it would be and he has been clear for over 5 years now. He told me he carried on drinking all the way through his treatment!...that made me smile.

I'm sure I will be in the same position as you in a few weeks time and even though I'm prepared for the worst I'm sure that wrecking ball will be paying me a visit. My surgeon (who I find a little bit cold if I'm honest) has been talking to me like it is already confirmed in his mind so I have no doubts about the outcome of the biopsies.

On a plus note I have had no ill effects yet from the tongue biopsy and am able to eat normal food after 2 days of milkshakes and baby food. I'm hoping that bodes well for the upcoming treatment.

Like you Jo I expect to be getting at least 6 weeks radiotherapy and dependant upon a PET scan and teeth x ray possibly chemo.

I find myself thinking "what have I done to deserve this?", I'm a nice person and its just not right!.....I'm sure you both feel the same.

Stay strong

Al

xx

Hi Jo,

Was just wondering how you are feeling?

Alan

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Morning Al

Still a little shell shocked really. I guess reality has kicked in .  I am still in a strange limbo waiting on full results and pet scan .  I was told by my consultant to make my way to ENT next tuesday even if i get no appt letter, so far i havent had one . Seems odd to just tip up when they are so busy , how do i squeeze in and how long will i wait in there! I am going to email one of the CNS  nurses to try and get it set in stone or clarification  . 

I think you and me are in unison on this  , both waiting on pet scan erc .

What county are you in ? 
 

Jo

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