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

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

Think I replied to my own post there oops!

Hi There 

How are you? Have you had your results back?

I am approaching my half way mark - it is tough road for sure - I can longer eat due to severe mouth ulcers and even talking is hell so my mouth is pretty much clamped shut to avoid the pain.

Chemo was the worst experience ever and I am dreading the second lot of that as i now know what comes after and it takes about 7 days to feel normal again except this time round i have a whole ofher lot of issues to put up with as well as 

Nice to hear from you though x