Hemiglossectomy, Hemi mandiblectomy and selective right neck dissection surgery

Thank you Dani I will have a look at these x

HunKellie take a whiteboard and a marker in with you. Then yiubcan write down what you need. Plus remember long charge for phone or tablet as usually the plugs are a distance away. Download something to watch be it a trashy box set or something you’ll enjoy. I watched masterchef  australia during my treatment.  I couldn’t  eat but watched lots of cooking  programmes sad or what  

The fear often is worse than the act itself  

hugs Hazel x

Lol I love you were watching MasterChef it's a great program well done considering you couldn't eat 

I love food so much   

Whiteboard great will get one tomorrow it's the little things that my brain isn't concentrating on at the moment x

Hazel is right it can get very boring in ICU after you start to feel a bit better after the anaesthetic. I was there for 5 days and  ended up watching TV although the offerings were rather poor. Your phone will be a lifesaver as you can access so much on it.  The physio came in daily and got me up walking straight away and gave me exercises. Get out of bed as much as possible even if you don't feel like it as the sooner you get going the sooner you get out on the ward.

Lyn

Hello I just wanted to say thank you for your replies on my thread again 

I am home now after having my Peg fitted yesterday I feel liked I've been kicked in the stomach by a horse but I also didn't sleep in the hospital last night either.

I have spoken to my CNS again today she has told me they have staged the cancer now... I told her I still did not want to know as I feel that I will concentrate on getting on with the operation and radiotherapy afterwards more positively if I didn't know. 

Anyone think perhaps this is wrong? I am focusing on their wishes that surgery is curative with 7 weeks radiotherapy (adjuvant after) they have told me they can tell me at any stage later on for insurance policies etc but also focused on the complex H&N staging.

I also know there is likely no right or wrong in many situations like these am just curious if it impacted others well being knowing the stage? 

Another positive is im starting to feel mentally ready for my surgery on Tuesday 

Thank you again for reading x

Hi we are all different I worked on a need to know basis. I wanted as much info as they could give me. Then process it. But that’s just me. I wouldn’t say it affected me one way or another. Every letter I got  from hospital it was there as a main heading anyway. I presume the oncologist s medical secretary typed  up from my notes so maybe you need to reiterate to your cns you do t want the info. 
there’s no right or perk f answer we all script j fi differently. 

Hazel xx

hugs Hazel xx

Hi Hazel,

Thank you for your valuable input  my husband seems supportive of my rationale and so does a friend who's husband has cancer but others in the family have been very different.

I will speak to my CNS again strange as I've looked at every case study of the operation but feel that's different

Thank you again, Kellie x

Staggabee said:

I have spoken to my CNS again today she has told me they have staged the cancer now... I told her I still did not want to know as I feel that I will concentrate on getting on with the operation and radiotherapy afterwards more positively if I didn't know. 

Stick to whatever suits you. Hazel has said she worked on a need to know basis. My oncologist tried that but i wasn’t going to be drip fed the information he thought I should have. I pinned him down and extricated ALL of it then researched what he had told me. Luckily I knew where in google to look and where not to. 
That way we could discuss options sensibly every time I saw him. 
It helped me know there weren’t going to be any surprises. 

Staggabee said:

others in the family have been very different.

It’s your cancer. You make the rules. I can tell you I shared everything with my husband and he was my absolute rock. I wasn’t interested in others knowing and making judgements 

Thank you Dani,

My husband has been absolutely amazing he works in the labs so looks at cells and he has researched a lot about spindle cell squamous cell and I said to him if he's not panicking then I'm not. He has been amazing. 

Just extended family now you know just the comments of well I couldn't go through without knowing I've just said I trust my team they have a plan I know the operations well and only because I kept asking did they say mop up radio after. 

My CNS told me to get through one thing at a time but I wanted to know how many things as that makes a difference - I know last night I was very grumpy and all the negative thoughts popped up now today I'm home and step one - peg is done now next step x