I stand corrected..
Oh I shudder at the thought ugh!
They sent me home with a big bag of bannana, vanilla plus same in powder form and wee bottles of ensure compact.
I tried the coffee one in hospital as I love coffee. Wrong!! most revolting stuff ever.
Ive only lost 4.5lbs last week so I don`t know why they were so weight obssesed. They were showing my food tray to charge nurse, that really annoyed me. As I said I will eat better when I get my appetite back, I like my food and goodies.
I tried adding real bannana in the nutri bullet my daughter has loaned me, nope still tasted of chemicals to me.
I am dreaming of Paella and a cold Sangria Oh yes and Churros. Now Im crying in my soup.
Take care speak soon. xxx
PS We have flipping snow!!!
the onky way I couldn’t get the ensures down little,tip,is to,dilute with bottled water ,added bonus is you are increasing hydration. Likewise the coffee toffee and chocolate ones all revolted me .imcould just about do vanilla banana and strawberry especially when dilute. I too have a nutri bucket but everything tasted like chemicals have brought it out tomspain with me must try and use it,
paelle still a ni ni then ruce justbsticks in mynthroat can manage 2 churros as long a season I have chocolate sauce ,then the rest have gone cold so,end up bumming them .managage Gaelic cold potatoes today and battered prawns , but most meats are still sticking indream if yiu remains lamb s gambolling in way to my plate sorry all u vegetarians but I live a lamb chop .
alchol doubt if any will ever enter my mouth again last drink was a g n t out here last April thunk I have lost the urge to drink I haven’t been a big drinker for nearly 10 years and before then was onky odd glass of red wine or g n t.
Onward n upward doe yiu keep taking the ensures I along with anchor 1707 called them bush tucker trials like I’m a celebrity get me out of here.
No Im quite a distance from Glasgow. I had my surgery there as they have a dedicated centre for H&N cancer. But its quite scarey when in there you meet folks still fighting this 3rd time round. To be honest I couldnt go there. The surgery is brutal.
Two weeks till I get pathology results. Dreading that.
Bush Tucker Trials is an excellent description. I never want to have a nasogastric tube ever again!
Speak soon take care xxx
Dear Clara hope you are a bit better than you have been..I havent been intouch because I thought maybe I should just give you your own time to get your head around what you have just gone through...I just want you to know I think about you every day hoping that you are a wee bit stronger...your friend Dee xo
I'm glad that your surgery is behind you now. It cetainly isn't for the faint hearted. Neither is the recuperation, so I hope that you are doing well.
Two weeks must seem like forever to get your pathology results. Hope they turn out well.
fingers n toes crossed for you please let us know when yiu have path results back.
Glad you like the analogy bushbtucker trials.
Yes I don’t know how people can keepmhaving surgery but don’t think about it
Great to hear from you!
Been a bit up and down but I am getting there. Am determined to eat food. I am a woman on a mission. Taste is very off,did you have that? I was thirsty and opened a can of cola, ugh it made my glands go crazy and was like vinegar to tongue. So many things I wasnt expecting. Some foods like beef, cheese,salt etc just dont taste right.
Took longer to get over anaesthesia than I would have thought,but I had problems with very low oxygen levels so that probably slowed things up.
I had a look in mouth with an led torch ugh not pretty! They have removed palate right up to tonsil pillar.So I have a tonsil with no arch, I was sure they had removed tonsil. Stitches in tongue and palate havent dissolved yet either,so need to use saline rinse alot more often.
I am definately stronger though not back to normal(was I ever normal Im not sure)
Keep well speak soon xxx
You have that correct re faint hearted. I think I just switched myself off in advance,and didnt overthink things.
A young student nurse asked to watch procedure of 4 radioactive injections into tumour. Consultant gave her the job of grasping my tongue with a swab. As I was watching her face she looked ill. Afterwards she told me that Im the bravest woman she has ever met. Ha looks are deceiving! Mind you she was pulling my tongue against my teeth and it hurt,but I didnt tell her that
Kindest regards & keep well xx
Forgot to say my results are 4weeks following op feels such an age,was too dopey to ask questions after op unfortunately.
I surely will let you know how it goes. Being the woose that I am its fingers crossed for no RT!
Read your update on your post. Two mountains!! Are you superwoman??
Photos are smashing you both look so well.
I am sure John doesnt get fed up listening to any complaints from you.He will just be happy that you are there to make any complaints But you already know that.
Hair looking good too. Im going to treat myself to a salon do as well!
Take care keep well xx
I know how it feels when it takes so long to get results. I had 2 excision biopsies for Melanoma nearly 2 weeks ago. I was told to return in 1 week to remove the stitches from my face and 4 weeks for my pathology results. When the appointments came through, i got the one for a week, but the other was for 4 months. I phoned my consultant's secretary and was told that this was the first available appointment. She said that the only way to get an earlier appointment was to phone regularly in the hope of getting a cancellation.
I went back on Monday. and, I got the same nurse who assisted at my biopsy. When I told her that I had got an appointment for 4 months instead of 4 weeks, she seemed very concerned and went off to find my plastic surgeon.
When he came in he advised me to phone his secretary again and to tell her that he had advised me to phone her again. The previous week he had asked me to photocopy a letter I had received from the dermatologist, advising that she would only look at the lesion I was referred for and no others. He has been getting a lot of requests from patients to look at other lesions and, this letter would explain why. As cancer lead for the area, it is up to him to change this process, so, he was keen to see this for himself.
I guess that he then had second thoughts, or decided that one good turn deserved another. Next thing I knew, he was on the phone to his secretary himself. When he returned, he told me that he had rushed my biopsies off to pathology as an emergency and, that the results were back. The face is completely clear and the leg looks as if it is also clear. The presentation of both had looked suspect, which is why he biopsied them and, he still had to discuss them at his MDT. He then discharged me. Hopefully, I’ll not get a recall after his MDT and, I’ve been on Cloud Nine since – it makes such a pleasant change to get some good news.
How are you coping at present? I hope that your pathology results are reassuring. Don't forget to let us know the outcome. We are always here for you.
Thinking of you.
thanks re hair didn’t want to get it chopped but agree it does look better ,itbwas just the fact that the cancer made me have it cut that I moaned about.
Yep 2 mountains the 2 nd one included being on a blooming goat track with precipititious drops in one side I did try pullingbyhe cancer card out but got shirt shrif from John lol .am findingvthe exercise is really helping the road to recovery strange as it may seem.
sont panic if yiu have to have r t we will get you through it
i know that John is really a guy of few words probably due to being a coal miner he finds it hard to expressing himself sometimes
keep in touch anither 32 km today oops
Many thanks - I'm still finding it hard to believe my good fortune this time.
I'm glad to see that you are enjoying your hols. I'm in awe of how active you are!
Thank yiu haven’t always been it’s onlyvsincex2015 when I rediscovered biking ! Typical last year I had never been as fit and look what I got !,,
determined now not to let it define me so onward and uoward
Hello Clara great to read you are getting through the hellish time you have had, getting back to normal takes a while but you will get there! yes lots of drinks and food dont seem to taste the same even 2 years later i dont enjoy my food at all the way i used to...infact i dont eat that much any more can go a couple of days with out eating if its not soft then dont want it because i find it hard to break it down... think it affects every one differently. God Clara to have your palate removed up to tonsil piller!... how do you manage to eat, swallow food?? I couldnt even drink water properly had to take small sips...you are doing so well you really are... keep it up Clara you will get ups and downs too we all have, but wer all here for you lots hugs best wishes always> your friend dee xo
It's just as well you were as fit as you were last year. I'm sure that all that biking in Spain has helped to pull you through the nightmare you've endured in the past year. Long may you continue on this onward and upward path, or road in your case.
Thank you am off to bed now , been reading up on parotid gland as my right one isn’t producing thin saliva and untilmitbdoes if it does dry mouth is here to stay .so thinking about acupuncture when we get home willing to try anything.
I have had a lot of bother with dry mouth, due to medication. Have you tried any of the sprays or lozenges, or found anything that works? Please let me know how acupuncture works for this. I have never heard of it being used for this condition.
i have tried all the spray including buying ones in Spain for dry mouth 1 they all taste of fish oil ! Lol which is revolting
2 get no more than a few mins relief from them
I use bioxtradry as a mouthwashwhuch is £9 online but eventually I got dr to prescribe me one a month at a time after a battle but uve has that with my drs all the way through all I get is budget budget .
mine isvaused by the radiotherapy that was targeted through the parotid gland not chemo or meds I know atvtheb2 year stage whatbuvw gornis likely to be as good as it gets .
Re acupuncture will let yiu know an alternative therapist recomenened I try it when we get home I will look around.
ps why are u awake at 0220 !
Hi Hazel. Its me again!!
My husband had his parotid removed. Then the RT left his mouth like a desert. We carried copious amounts of water everywhere we went. I noticed he gradually was drinking less. Around about the 1yr mark his other saliva glands started to compensate and he was fine from then on, but still prefered moist foods.
The downside was gustatory sweating. The nerves from removed gland rejoined and saliva used to leak from side of his head. We tried botox injections but nothing helped. He used to get very annoyed and embarrased with it. He avoided eating out etc.
Take care speak soon xx
I have found the same with sprays, but am interested in how accupuncture goes if you decide to go down that route. I have had dry mouth for 9 years and it is getting worse.
As to being awake at this hour, I'm just a night owl.
I can understand what you mean about being difficult to chew and break down food to swallow. I am having to take tiny amounts on a fork, food is stone cold its taking so long to eat. Choke easily too. Tongue doesnt shape food properly for swallowing.
I cant open my mouth very far my jaw is very painful and stiff, I hope this gets better. 3 weeks since op and still a way to go healing. I was taking liqiud ibuprofen to deal with inflammation but had to stop as I had stomach pain with it.
I had a notion for scone and strawberry jam oh dear when jam touched my mouth it was more like a lemon. Quite bizzare. Tried a sip of cola it was like vinegar. I thought this would only come with RT.
Sending you a big hug :-)))) xx
Hello Clara its so good to hear from you, Hope you are slowly getting back to your old self... 3 weeks since your op? you know clara time goes so quick all this discomfort will get a bit better week by week you are doing well trying to eat your scone and jam! funny how you take a pang for things that you used to love to eat then find it so difficult to break down and swallow I found bread so hard...still do Clara wee tip regarding radio try to drink as much water as you can before and after each session of radio it will stand by you so so much...a lady i met at cancer hospital told me to drink drink drink as much water as you can, I did i truly felt so good for drinking so much my skin was able to stand the 30 doses of radio with out breaking down tho i wouldnt have been able for many more! Clara do wee excercises with your mouth every day more so when having radio gotta keep your mouth muscles moving i was told i would maybe have to get mouth clamp em dont think so! I sang to Adele cd the whole way home! all of 80 miles 160 return every day!! poor husband was tortured hahaa Stay well Clara speak soon. your friend Dee.xo
Hope you don't mind me hijacking your posts.
I went to hospital yesterday to see consultant about small white spot (about size of small finger nail) on the right hand side of tongue also got some red patches & soreness behind spot. Think doc said he thought it was Leukoplakia but I'm not 100% as it all happened so fast. He said doubt it's anything to worry about but to have a biopsy to be sure & id get a call in few days to book slot, got call today & booked in at end of April, my heads in a bit of a whizz!!!
try and chill out drs most if time do know what they are looking at .in my case my local dr put me straight into the 14 day cancer pathway due to swollen protruding lymph node .best advise u can give you in keep off dr google the information is not regulated. If yiu mustvsurf stick to cancer U.K. sit and Macmillan.
Good luck don’t fret until you have news from biopsy easy for me to say but believe me I’ve been there and done it. Tonsil cancer last year with multiple lymph nodes given all clear in January
Hazel come back and update please