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

Morning Jo,

Poor you, you have been suffering for so long now.....hang in there!......things can only get better as the song goes.

Stomach is tender and windy today but I managed to get dressed (10 mins!) and walk the dog twice, I'm determined not to lie on the sofa and feel sorry for myself (altho I must admit I have the odd moment when it still hits me like a train.

The peg is a lot longer than I expected and I have just bought some surgical tape to tape it to my belly cos it catches when I take my tee off.

Cleaned and flushed this morning, I'm finding that I can't think too much about it or it freaks me out and I want to pull it out :laugh: The flushing is quite easy but I get a bit squeamish lifting it up to wash and dry underneath it.....I think I was lucky that they placed the peg right in the middle of my stomach so I should be able to sleep either side or on my back. I would defo recommend buying some tape to stop it flapping around. Trust me there is no bigger wuss than me when it comes to all this so you will take it in your stride

Relax and enjoy the rest of the weekend!

Al

xx

Morning all,

Quick peg update from me. Had it fitted last Thursday and for the first couple of days it freaked me out and felt totally alien, also felt like I had been trampled on by and elephant :laugh:.

Now its settling down and I am getting used to cleaning it 3 times daily and also flushing it 3 times daily (it's amazing what you can get used to). Pain now down to a slightly bruised sensation and stinging around the stoma (that goes once I have cleaned it).

Jo I know I said this before but definitely invest in some surgical tape to stick the tube to your belly when not flushing/washing, just on a pyschological level it makes me feel like its part of me rather than having it flapping around catching on clothes.

Also think I was lucky with the positioning because it is dead centre of my stomach which means I can sleep on either side now or my back if I choose to (not sure if you would prefer that and it's something you can ask before they place it?).

Since having the peg fitted my throat has felt so much better! Before I could feel the lump in my neck every day and was in considerable pain some days with swollen glands, now I can barely feel a thing.....very strange, maybe the peg has focused my thoughts away from it.

Anyways hope you are all as well as can be expected in these trying times?

Al

x