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 

well well well Hazel, you do get about dont you . hahaha 

Lovely to see you here , you are so proactive and  such great support to many people  

A small update. 

I received a call from my CNS Nurse, Sarah, this morning telling me i did not need to come for todays appointment as the pathalogy report was back and the consultants advised surgery was not necessary and I will continue on the path of radiotherapy and Chemo ..  

I also mentioned I had not yet had a date for my PET scan and she advised she would chase this but that I shouldnt worry as they really did not expect to find anything and it was simply a belts and braces procedure. 

Felt so good to actually receive some postivie news today .. my first buzz of real happiness since February .. 

Jo

x

Hi Jo,

Great news!, its amazing how much of a lift you get from having a plan in place. Now for u to get that PET scan out of the wy and get the treatment started!.

I also have some updates. Just got back from hospital dentist and have to have 2 teeth out, wasn't absolutely necessary but I thought I would err on the side of caution and it was better than I expected. Arrived home to a letter for my first visit to the hospital where I will be having my treatment....that is this Friday at 10am, and also just had a call for a visit from a nurse the day before my PEG fitting on the 14th.....phew!

Edging closer to claiming our lives back! I told my friends I will be buying them all t shirts saying "he beat cancer" with an arrow pointing to me for them to wear when we meet up.....they weren't impressed :laugh:

Bring it on!

Al

x

Hi Jo yep I get around   

If you're really bored look on here at our thread if you look under RadioactiveRaz in the search person you'll find the thread

Radiotherapy For Throat Cancer

it will keep you amused with our ramblings whilst I and a few others were going through treatment

Hazel  

Haha thanks Hazel - interesting to read through ️

Update alert  

PET scan booked for next Thursday - i really do think they held back waiting on final biopsy result - anyhow , there must be ryhme and reason for how they function - was told to stay away from my daughter for 6 hrs after as I will be radiactive ️
 

Al, do you have stay in overnight to have your peg fitted or are you on day surgery ?

Jo

x

Hi Jo,

Good news about the PET scan...when it comes back all cler it will be another big step forward. I noticed something really strange in the PET paperwork.....no knitting before the scan! :laugh:

As far as I'm aware I should be out the same day as the PEG is fitted, certainly thats what all the paperwork says....in at 10.25 and should be out 4 hours after the op around 4ish I reckon. I have a nurse visiting me the day before the op to talk about PEG care etc so will confirm it with her.

Also just found out my final ultrasound (to check the lymph nodes in the left side of my neck) will be on the 22nd.

All being well I hope to start my chemo/radio before the end of the month.

Al

x

Hi Jo yes you'll be radioactive hence my name on here Radioactiveraz!  I was told not to see grandson for 12 hours and no baby's fir 24. I wasn't allowed to read look at my phone or anything for the one hour after I was inhdcted with the radioactive serum. I was in a room with nothing on the walls ti distract yiu. Now dani in other hand  could  read. No rhyme nor reason . It's fascinating watching the serum come into took in its own box with yellow skul n crossbow on it. After an hour where you have ti drink you're allowed a loo visit then intk the scanner. It's quieter than the mri ms Hines. As fir org again friends in hospital trust policy. 
thjngs are starting to move. 
Hazel x

Yes we rambled on am stil in touch with the guys as well 

hazel xx

Hi Jo/Sue and all on here,

Update from me. I had my first visit to the hospital where I will be receiving my chemo/radio yesterday. Met all my nurses and the doctor who will be looking after me and what a lovely bunch they are!

First bit of news was good news and that is that the type of cancer I have is the more treatable one...p16.....woohoo!!!!. They went thru all the possible side effects I may suffer (which I know off by heart now) and surprised me by asking if I wanted my mask fitted there and then...I wasn't expecting that but it was a doddle and not at all uncomfortable. I also learned a painful lesson yesterday, drink plenty of water before having any blood tests or cannula's inserted.....I didn't and they couldn't find my veins!....I was a human pin cushion by the end of the visit and they ended up using the back of my hand (which I actually prefer tbh).

I now have a schedule for my treatment which is fantastic!. I start on the 25th with a 10 hour chemo session (whoop whoop) followed 2 days later by the start of my radiotherapy which will finish on the 7th June (big big date in the calendar!), I also have another chemo session on week 5.

Next week is fun packed, Monday I have a hearing test (one of the drugs may cause tinnitus so depending on the results that will dictate which drug they give me), Tuesday I have 2 teeth out, Wednesday I have a visit from the PEG nurse to coach me on using it and Thursday I have the PEG fitted....phew!

It may sound strange but I'm so happy to have an actual schedule in front of me but at the same time I am under no illusions about the possible side effects (Hazel I read your blog wich was amazing and inspiring).

Anyway, enough about me, Jo/Sue, and anyone else reading this, how are you doing?

Al

xx

Hi Jo/Sue and all on here,

Update from me. I had my first visit to the hospital where I will be receiving my chemo/radio yesterday. Met all my nurses and the doctor who will be looking after me and what a lovely bunch they are!

First bit of news was good news and that is that the type of cancer I have is the more treatable one...p16.....woohoo!!!!. They went thru all the possible side effects I may suffer (which I know off by heart now) and surprised me by asking if I wanted my mask fitted there and then...I wasn't expecting that but it was a doddle and not at all uncomfortable. I also learned a painful lesson yesterday, drink plenty of water before having any blood tests or cannula's inserted.....I didn't and they couldn't find my veins!....I was a human pin cushion by the end of the visit and they ended up using the back of my hand (which I actually prefer tbh).

I now have a schedule for my treatment which is fantastic!. I start on the 25th with a 10 hour chemo session (whoop whoop) followed 2 days later by the start of my radiotherapy which will finish on the 7th June (big big date in the calendar!), I also have another chemo session on week 5.

Next week is fun packed, Monday I have a hearing test (one of the drugs may cause tinnitus so depending on the results that will dictate which drug they give me), Tuesday I have 2 teeth out, Wednesday I have a visit from the PEG nurse to coach me on using it and Thursday I have the PEG fitted....phew!

It may sound strange but I'm so happy to have an actual schedule in front of me but at the same time I am under no illusions about the possible side effects (Hazel I read your blog wich was amazing and inspiring).

Anyway, enough about me, Jo/Sue, and anyone else reading this, how are you doing?

Al

xx

oh my gosh ,,  I am left eating your dust , speeding off ahead of me .. lol 

Great news all round..  

you are going to be a few weeks ahead of me at this rate.. wow , I feel so worried mine just isnt moving so fast as yours ... eeek! 

Blimey 10hrs of chemo - thats is a darn long day ! are you in and out the same day  or is that an overnighter ? 

x

Hi Jo,

I'm surprisingly shocked by how fast things are moving and cannot fault the NHS. I wouldn't worry if I was you, I think I have just been lucky and I'm sure a couple of weeks won't make any difference in the grand scheme of things....... we will be comparing treatment notes very soon.

Both chemo sessions are home the same day, my daughter is taking me for the first one and and will bring her laptop so she can work whilst I'm being drugged up.....second session my girlfriend will do the same. Actually it may not be as long as 10 hours I'm not sure where I got that number from (may have read it somewhere) it was information overload yesterday :laugh:.....I do know that it is an all dayer tho but I will only stay overnight if I have a very bad reaction.

Al

x

Hi A, 

Just came on to check how everyone was doing.. 

I'm so glad to read that your getting seen to so quickly. You will be back and raring to go in no time. Especially in time for your daughters 30th .. can I ask when she's 30 to be nosey, I will turn 30 in September :). 

In regards to myself , I had my MDT meeting which shows there was no spread , and that it was caught really early. 
i am to have an intense operation on the inside of my cheek followed by speech therapy and maybe some radio to follow. My operation is due on the 26th. 
 

hope your holding up well. 
 

S x 

Hi S,

I'm doing ok thanks.

Great news that there is no spread and that it has been caught early!...... that was a game changer for me and realy gave me a much needed lift. Also glad to hear they are fast tracking you for an op. You sound much better now that you have a plan?

I have just returned from dentist where I was supposed to have 2 teeth out...I saw the head dentist and he didn't agree at all with his colleagues assessment and said I can keep them!....woohoo......a little victory, I actually ran out of the surgery before he changed his mind!:laugh:

My daugter will be 30 on 1st August so I'm full on convincing myself I will have recovered enough to go away and celebrate with her. Its something for me to aim for.

Al

x

Hi, 

woohoo! That's great about the teeth , I bet they couldn't see you for dust when you left.. 

yeah feel much better now I know a bit more. I think it's the unknown that makes you feel worse doesn't it. 

i bet your daughter will be over the moon to have you celebrate with her and I'm sure you will. 
 

take care

S x 

Hi Al and all 

Had my appt with MDT today and I am now full steam ahead..  Tomorrow my PET scan is being done but that has been booked since last week. 

But had a long meeting with the team this morning.  .My mask is being fitted next Wednesday and I have to have a CT scan straight after so they can accurately determine their treatment point .. my biospy site is still messy so they need get locations spot on.  I am then due to have my PEG fitted on the 21st ,, into hospital very early and home mid afternoon .. They seem to thnk treatment will begin 3rd. May , the day after my birthday .  Plan to go off for a slap up meal on the  weekend before and make the most of it whilst I can.  

So Al, will look like we will be one week apart in treatment 

Hope all goes well for you with your PEG fitting tomorrow 

Jo

x 

HI JO,

Its all systems go for you now!...woohoo!, sorry to hear the biopsy site is still giving you gip :angry:.

Are you like me, can't wait to get the treatment started?....I know it will be very hard going at times but I just want this bloody thing out of my body, my throat has become much more painful the last few days and I'm alsoo feeling something happening on the left side of my neck and its stressing me out a bit.

Mask fitting was a doddle and they actually scanned me whilst the mask was drying...all in all took about 10 mins. Are you far from your treatment centre?.....mine is 45 mins each way provided no traffic. How many chemo sessions are u having?.....I have 2 scheduled, one of the first day and another after 5 weeks.....first day for me is 27th.

Peg fitting today for me so will message again later when I get home....I'm scared but not terrified as I would normally be. The nurse visited me yesterday and went thru all the care of the peg....OMG!..information overload!.... it requires daily care (flushing/cleaning etc)....not what I expected and needs to be rotated every 7 days or so....hey ho I'm sure I will get used to it.

One more hurdle for me to get over after today and that is the ultrasound on left lymph glands...I'm hoping its just a scan and not a needle biopsy again!.....:cry:

Make sure you have a damn good meal before the treatment starts and have a few drinks for me!

Will check in again later

Al

xx

Morning Al

I am sat getting my radioactive juice .  

uff, I get jumpy at the slightest niggle at the momemt and my mouth is hella painfull-  I am now really upping the ante on codiene to help as from speaking to others I wasnt really taking enough pain relief .. 

I am so happy that everything is on the move but still quaking in my boots lol    

My Hospital is the same,  45 minutes to get there  but chaos traffick and roadworks so setting off giving myself 1hr 30 to be safe .. 

Did you have a contrast dye for CT scan at mask fitting ?  I was told I do  so I think another longer day like the PET scan hey ho ... 

The cost of fuel is going to be a stinger during treatment 

My glands under my ears feel wierd somedays , like they are buzzing .. almost like when i was ill as a kid .. it comes and goes but it makes me feel out of sorts .. 

i am having two sessions of chemo and 30 rad just like you .. first treatment is chemo and radiotherapy combined 

speak later ... today will be a doddle for you 

X 

Hi Jo,

That must be awful!, constant pain wears you down and is draining, just like worrying.....throw some of those Codiene down you!

I was supposed to have a contrast dye at mask fitting but because they told me not to drink water I was dehydrated and they couldt find my veins.....the nurse had 4 attempts and gave up but she said that it wouldn't make any difference to the scan, lets hope not!

Exactly the same as you my glandsunder my ears feel permanently swollen now and very uncomfortable. Makes me feel like it is spreading but when i spke to my MacMillan nurse he said that is quite normal and he would expect some swelling.

So, the peg......what a strange experience!.....it only took 15 mins thank god but 10 of that wwas spent gagging with the tube despite being sedated and numbed......it wasn't painful just very uncomfortable and I'm glad its over. Spent 4 hours recovering from the sedation and I wanted to prove I could feed myself thru the peg before I left, I also suggested that clean it as well, otherwise it might have freaked me out......I'm in pain now bit thats mostly because they pump air into your stomach and some of it remains......feeling tender now that I have got back home.

Just showed my daughter and she didnt think it was that bad....its bloody big tho so I won't be wearing my pink spandex shirt until its removed! :laugh:

I'm exhausted now so need to recover.

Will check in again tomorrow to let you know how it is settling down.

Another massive hurdle jumped over!

Take care

Al

xx

Oh lordy Al, the nurse told me I probably wouldn't even remember the peg being fitted lol.. got a bit of sa weat on now lol .. 

The CNS nurse showed me the peg yesterday and my chap was like 'yikes it so long, what if i lay on it in the night lol' .. the thought made me cringe.. but she said it can be taped up etc.. my dad was telling me some funny stories when he had is but he didnt have to deal with his own peg feeding as he was in hospital for 6 months but eventually got his swallow back and learnt to eat again .. so they removed his peg before he went home ,.  

Codeine makes me feel crap tbh ... it helps with pain but makes me totally out of sorts and  I feel good for nothing so its the devil and the deep blue sea at the moment . 

Hope today is a better day comfort wise for you ..

x

Jo