I cant offer any experience but I have been referred to ENT by. my doctor today due to abnormal swelling around my left tonsil area.  I had ongoing throat irritation in the new year,  a course of antibiotics did nothing to help .. 

I have my fingers crossed all will be okay for you today and your diagnosis will be much of nothing or easily rectified. 

Thank you for your reply. I've had a friend with swellings on their tonsils, which turned out to be harmless cysts. So I guess a lump in that area isn't always as bad as it seems.

My issue is a little lower down. Tried looking with a torch, but its somewhere near base of tongue or slightly lower I think, so couldn't see it. Probably best I don't see it. I did a week of antibiotics for something else coincidentelly. Did nothing for my issue either.

Preparing for the worse today. Not sure how you do that. I feel tired, weak and worried all a the same time. Trying also to tell myself that perhaps ignorance, at least for the next few hours, is bliss.

Great to hear , there is me blending spag bol meat to pulp  and you are enlarging it

Yes , it seemed to make the anaesthetists day .. she was telling others when I was being zipped off to theatre  -  they're all stood around sticking electrodes patches on me and catheters in yabbering away and I am like 'please hurry up or you may need to de-fib me at this rate".  .. 

I never realised how awful anxiety is and how badly it can destroy you ..  I cant imagine how it must be for people who have to face these scenarios alone . Hopefully today as eased your mind some since your phone calls   ️

X 

Hahaha love it! 
 

yes anxiety is bloody awful. CBT is great but I think everything goes out the window when you're in that state of panic. Yes I can't even begin to imagine what those people go through, hopefully they get support through charities as there are some really amazing ones. My mind has eased so much from those phone calls and I'm so so grateful. 
 

how are you feeling? Please let me know how you get on tomorrow I will be thinking of you x

MDT meeting complete and all seemed to happen at once..  My radiotherapy mask is being fitted next Wednesday followed straight after by a CT scan.  Then blood tests ready for my PEG surgery the very next day.  

They said treatment normally starts a week or so after the mask fitting , so they thnk it will begin 3rd May , the day after my birthday lol.... lucky ole me lol .. 

It is nice to see action at last .. daunting times ahead but its a ride i have to take and all I have to remember is it will end ..  

x

Good that the ball is rolling and the sooner you can get started the sooner it's all over. Will it be GA for the peg surgery? 
 

Oh typical. There's never a good day for these things though. Don't be drinking too much ha! We are supposed to move house on the 3rd may. Will be thinking of you.

I'll be here for a chat anytime you want to moan or talk about things xxx

Oh apparently I will be heavily sedated but not knocked out .. she said i wont really remember anything and it is over very quickly .. 

oh house move is so stressful ,, exciting but hectic 

We intend to go out for a meal the weekend before and I probably will have more drink than I should , but whilst I can eh

I will be looking out for an update from you tomorrow too 

x

Oh that's good - better than GA. 
 

you deserve it! Hope you have a great time. 
 

hope your PET scan is going well. Just had a call from hospital to say my results aren't back so appointment moved to next week. Typical. X

another week waiting for  you grrr !  
 

I am presently sat in a comfy armchair in a liitle room hooked up to a drip for my radioactive glucose ... scan wont be for an hour or so though 
 

x

I know! I had a funny feeling it would happen when they said they'd not got them on Monday. Hopefully it's nothing too bad though after speaking with doc about my mri, so trying to think positivity.

how does the drip feel? And have they said when you'll get the results? X

All done and dusted and we managed to squeeze a walk in around nearby woods when we got home .

I didnt feel a thing with the drip, they took some blood did a small flush of saline water which just felt cold and then 15 minutes of the Kryptonite stuff haha .. PET scan is certainty quiet compared to MRI - i nodded off as it was so slow 

The results go straight to my consultant who I do get to see next week so i guess if there is anything ontoward she will tell me then - the only niggle I have is maybe my neck lymph nodes but the glands under my ears are definetly reactive at the moment.  I am not sure if its from stress or just my body trying to fend off the cancer - my consultant  did say they may simply be reactive but if it was spread they were easily treated at the same time as my throat 

Long weekend to look forward to now but my chap is working tomorrow to make up for time lost over the past few days 

Do you have anything nice planned over Easter? 
x

Aww lovely - it's been nice and mild today hasn't it. Hoping for a nice warm weekend. We were up all night with our wheezy toddler last night so spent the day on the sofa. Think this weekend may be a write off now too which is not ideal as we have a house to pack up! 
 

Ah doesn't sound too bad! I hate that saline flush they do I always nearly faint! Glad it's over! Did you say you see your consultant on Tuesdays? 
 

ah I hope it's just the stress! The amount of stress you'll be experiencing must be a shock to the system so you'd expect glands to be up wouldn't you. Fingers crossed that's just the case.

what do you have planned for Easter? X 

Aww lovely - it's been nice and mild today hasn't it. Hoping for a nice warm weekend. We were up all night with our wheezy toddler last night so spent the day on the sofa. Think this weekend may be a write off now too which is not ideal as we have a house to pack up! 
 

Ah doesn't sound too bad! I hate that saline flush they do I always nearly faint! Glad it's over! Did you say you see your consultant on Tuesdays? 
 

ah I hope it's just the stress! The amount of stress you'll be experiencing must be a shock to the system so you'd expect glands to be up wouldn't you. Fingers crossed that's just the case.

what do you have planned for Easter? X 

Ah , always tough when you have poorly young ones.. the best way to catch up is to sleep when they sleep even if its during the day time.  it gets easier when they get older and can deal with being ill better.  

We dont really have any plans, it will probably be a weekend like anyother but I do think the weather is supposed to be very nice ,so we will probably work on the garden and zip out for a few walks etc. .. 

Felt pretty *** yesterday evening , I think I took too much codiene and it makes me feel really out of sorts , it tackles pain but has it own downside.  The ENT department rang me yesterday evening and told me to up my codeine to 60mg 4 times a day,, but yikes it made me feel awful. .. 

I have been told that when my therapy starts the constant pain I am experiencing should stop when  therapy kicks in as it acts quite quickly shrinking and killing the cancer so I may have a few weeks where I feel better before the therapy side effects kick in and I get a whole new load of problems lol . . to be painfree and feel like the old me for just a week or two would be bliss even if it is for a limted time.. 

Hope your little one is feeling better today

x

Yes she's had such a tough time with her chest over the last year bless her. Just hoping she will grow out of it and it won't be asthma. 
 

Oh sorry to hear you're still in so much pain! I wasn't a fan of the codiene either, made me feel like I was constantly swaying! How come they have asked you to up it? That would be good if you could get a few weeks in pain free, I will keep my fingers crossed for you. 
 

hope you've had a nice day in the garden! Been beautiful weather. I need to get onto my weeding tomorrow but it's one of those jobs that seem impossible to start but not too bad once you get going ha x

Hey hey

How are you ? Is you throat pain easing up now ! I had an enjoyable long weekend - lots of work done in the garden ,  energy is failing me lately but i decided to try red bull and I must say it does give me a liltle ooopmh so may drink this more to get me throgh the days 

I have my therapy mask fitting tomorrow and CT scan  but my peg fitting is now moved to Monday .. 

Truly hoping you get your results through this week

Hope your little girl is recovered too
 

Jo

x 

I'm good! My throat is back to normal now thankfully, I just have the feeling that somethings stuck in it all the time but hoping it's scar tissue or just my throat adapting to the huge chunk they cut away ha. Been throwing down all the chocolate cake and Easter eggs to try get abit of weight back on, feel like a frail old lady.
 

so glad you had a good weekend, the weather was gorgeous wasn't it! Oh bless you, these last few weeks will have wiped you out! The red bull is a good idea ha! Not had any of that stuff in years. 
 

is it tomorrow you see consultant about pet scan? You'll have to let me know how the mask fitting is. Are you going to ask for the eye and nose holes? I might ring tomorrow to see if they've had results back - I'm too impatient for this kind of stuff. 
 

my daughter is a lot better thank you! She's been helping unpack all the boxes I've packed this weekend for the house move. Little monkey x

Hi ,

What a day I  have had, my appointment was at 11am , I got home at 4pm lol .  Today was my mask fitting day.. what an experience.  It can be quite a claustrophobic feeling but got through it okay and then went on to the CT scan where the set and finished mask is fitted again for the scan and  for them to get there therpay co-ordinates I guess.  The CT  part was swfit even with contrast halfway.  I did get eye holes put in, which will be beneficial for therapy and even with my CT scan it was great being able to see and not have my eyelids firmly closed down. 

I had a little set back yesterday, when cleaning my teeth for bed my mouth flooded with blood and my biopsy that was almost healing over (albeit a mess) , had burst open.. Gutted! My CNS nurse thinks it will not truly heal over until therapy destroys the tumour growing there. 

I have my therapy dates and OMG I start therpay next Monday ,, so pleased but also quaking in my boots lol.  I meet my consultant again tomorrow , she wants to see the wound before treatment starts and maybe discuss stronger pain relief and I imagine my final results following all scans etc. 

My PEG fitting dates have been jumbled around a lot and they had moved it to a Monday fitting but when I told them that today they got all flustered because of my therapy already being booked and in place, I think there had been a boo boo and they did not want my therapy delayed so an urgent PEG fitting now arranged for Friday at 1pm .. 

Did you ring the hospital today? 

Jo

x

Oh wow what a day you've had indeed! Glad you got through the mask fitting ok and glad you got eye holes! I thought it sounded abit claustrophobic but I guess once you've had it on once you adapt fast. Sounds like you've done great - well done you! 
 

Aww jo I'm gutted for you! Is it more painful now it's been disturbed? What a nightmare. 
 

I know its scary that your therapy starts Monday but it's also a really great thing - glad they've got it all booked in - let's get it over with! And hopefully you'll have a break from all this pain. Friday for the PEG fitting too!! They can move fast when they want to! 
 

Let me know how tomorrow goes won't you. I rang the hospital and they still haven't got my results so looks like another week of waiting. They're going to ring me in the morning to confirm but I don't have high hopes. This house move has been a blessing in disguise for keeping me occupied.  X

Hey jo - how are you and how was today? How was the peg and how is it? So many questions! Hope you're doing ok been thinking about you a lot xxx

Hey There 

So sorry for the silence .. hectic has been putting it mildy and slightly exhausted.  Peg fitting was a horrid day , and not a great experience.  I had lots of pain afterwards and could hardly move but that now seems to get better daily and I am much more agile again now.

Chemo, uff what a long day ..  i had it my mind I would sleep if i could to kill time but after reading for while , I dozed off and woke myself from my own snoring.  So embarrasing when in a bay with 8 others.  I have had this snore since my tumour started to appear but that was it then fought sleep off all day long.   When Chemo finally ended at 5.40 I was whizzed to radiotherapy for my first session .  This did not go well. the mask seemed so very tight and I felt like I was choking.  They said it was common and due to the fluid intake through the day.  But I had to quit at one point stop, be unclamped drink some water, and have the mask slight adjusted to start all over again.  uff, I felt like an idiot but they were very understanding. The radiotherapy actually only takes a few minutes .. it scans, they check the scans and then tell you when treatment is starting , I  had around 2 minutes on each beam and job is done. 

I slept till 11.30 today and then my chap came home to take me for day 2 this afternoon, no issue with the mask this time round, thankfully. 

How are you ? 

x

Hello!! Don't apologise I can imagine it's been exhausting for you. What a busy week for you. But alot of hurdles overcome! 
 

sorry to hear the peg fitting wasn't good. From what I read about it it didn't sound pleasant but like you said it's getting better everyday and you're over the worst of it so well done you! Have you tried it out yet or do you have to wait? 
 

Haha snore all you want! Im sure the others wouldn't mind too much. What did you take for entertainment? And you only have 2 chemo sessions right? So half way through chemo already!? Amazing.

Aww bless you, I'm glad your second session of radio therapy was better. Although it's a positive that it is so quick! I thought it would be a lot longer for some reason. Do you have to go everyday for it?

im good thanks - still waiting for results and still waiting to move house! X 

Hi jo - just checking in and sending some positivity your way!  hope you are doing ok? Been thinking of you x