Squamous Cell Carcinoma of the Tonsil and lymph node cncer in neck - anyone got any experience of it please?

[UniversallyChallenged]

Would appreciate anyone's experience

Thanks

oh that's good to know - that it's a standard thing to give the CT scan. My worry alert working overtime as usual

you're an absolute gem trifle!

Trifle here, with another new name! How is Mr UC doing? How is his food intake? How are the kids coping? And most of all, what happened with the parking ticket
You take care of yourself.

LOL - do these names have different meanings? I have a few that ive used if im in some kind of mood, tho have been UC for ages now. Feel a change coming on

Mr UC doing brill - his voice is amazingly very near normal. His mouth and the side where they cut the shoulder muscle still feels nothing think that will take a long time. He is eating very normally thank goodness - slower of course but good amounts.

The dcs are their using rowing/shouting/noisy selves and am pleased at that - though sometimes wish they would be quieter when they see him crashed out - but heyho they are kids and i dont want his illness dictating their behaviour too much.

Now for the most important bit have emailed the parking ticket office and have written to them so will hopefully fall on their mercy as he wasnt really thinking properly. Am not at all hopeful tho as it was totally his our fault I suppose!

Nah, no reason in particular for the names, I just like to ring the changes every now and then. Its strange tho, I seem to have different personaes with each name!
Mr UC, sounds as if he is doing marvellously and eating so well, which has got to be a good thing. With the kids having the next week of it will be hard for you both, huh! radiotherapy and holidaying kids, not a good combo, but, it might be good for Mr UC, (I hope!!!) and your right, they still have to be kids.
I would of thought it would take him a while to feel anything around his op site, and with radiotherapy immenent he could start feeling worse again, although I really hope not. Have you ever had a cesar, I have and it took a loong time to feel anything around the scar site, weird.
I hope all goes well for radiotherapy and you have a good week.
Good luck with the parking ticket
Take care, Trifle.

Hi UC,
What a week, my nerves are frazzled! Harry went in last Mon as I said and was given 4 units of blood. On Tues his level had gone up from 5 to 8.5, which they said should have been higher. They did an endoscopy but it showed nothing going on in the stomach. On Weds his blood dropped to 7.2, so late that night they gave him another 2 units of blood. By Thurs it was still only 8, we also had our big apt that day with the oncologist to discuss the chemo regime. That cant start until they sort this anemia problem out. On Frid they said if the level hadnt dropped he could come home, it dropped! Then on Sat they started giving him vitamin injections, the level rose to 8.2 so they said he could come home! I had slaved all week, slaved all Sat doing a surpise garden makeover for him, my brother took Rebecca over in the car at 5pm, and they had changed their mind and he couldnt come home!! They checked his blood again this morning and it was up to 9.7, so hes home and snoring as I type!! I was sooooooooooo looking forward to him coming home, but within an hour we were snapping at each other, he started moving things in the garden saying he could have done it, and he would do what he wanted and not be told by a bunch of women what he can and can`t do!!!Its been such a stressful week for me, I just wanted a hug and for him to realize this is not just about him!!

oh triplets what an awful time you've had. Am so sorry - you even did the garden you are amazing woman!!!

It's so hard when dh's are ill isnt it - that fine line between them feeling so ill and taking it out on us, and us having to cope with everything and not feeling looked after . Really hopw you get your RL hug - but am send you an empathetic MN one

thanks trifle - he was saying how odd it feel around his scar but is getting an odd feeling around the back of his head, has asked me a couple of times if it looks cut odd really. He has a few questions to ask our lovely MacMillan nurse this week.

triplets, blokes are such unfeeling arses! my dh would be like this. good luck for this week and half term.
best of wishes to Mr UC and Mr T, the kiddies and both of you.

I have no idea what fil feels or doesn't feel in his scar area, but, my csection scar took a long time for me to not feel numb, a couple of years in some places. BIO OIL is something which is good for making a scar disapear. we brought fil some, you would truly have to look to see the scar.

Thanks for your message. He is is a better mood today, so far! Yesterday 16 hours after coming out of hospital he wasout in the pouring rain dismantling a very heavy garden table! MEN !

and the weather was bloody awful yesterday trip, whats he like!

UC - My internet has been down for the last week, I hope all is going well for you and yours.

good morning! How you on this wet miserable day connie?

Yes all going ok ish thanks. He bit up and down but generally good. Has found a support group and going to their meeting tomorrow which i am pleased about as he has so many things to know from people who have been through it. In some ways the more he knows the more frightened he is getting, but forewarned is forearmed as they say!

Have sent him off shopping this morning in this horrible weather - wicked wife , but him being here seriously curtails my mnet time so things have to be prioritised !!
How you getting on triplets?

major internet probs, so quick message.
Good news re Mr Uc and the okish radiotherapy. I hope all is well with the parking ticket. Take care.

best wishes. x

Thanks and to you xx

no word back on the parking ticket yet - am panicking they havent recived my email and letter and will sting us with the big one. Would be just our luck atm. We heard that the other tonsil was cancerous too so he needs both sides radiotherapied will have peg fitted next week for feeding - maynot need it but just in case.

Hope you are all well xx

OMG UC, thats bloody awful, (triflenorks/conniedom here) have they checked the other lymph nodes on the other side of his neck yet?
My mates lad was peg fed for about three years, its not nice, but at least it gives you options. Or, is the peg for intrevenous drugs?
I would send the parking ticket people another email just to be on the safe side.
Take care, love and best wishes to you all. Trifle. x

doh, I have just re read your post and saw the peg was for food. Don't forget to take care of YOU too.

Calling Trifle!!!
Wondered if you could ask your FIL another question please

If you are around - or anyone else who has had radiotherapy on the neck/throat. Could you ask your very patient FIL when he lost taste in mouth and how long it lasted please? Were there any foods that he could always taste throughout treatment?

Thanks xx

Hi, Trifle here.
Yet another name change!
I spoke to Fil, and he said his taste buds deteriorated straight away, it was the mild stuff he couldn't taste first.
Apparently he could still sort of taste strong things like tripe, hare (which is really strong)liver and fish, but he likes stuff like that. He also said he was never sure he could actually taste it, or remember what it tasted like. iswim.
He ate loads of melon at that time! I work next to a supermarket, and every day I would be in there buying him a melon, but that was because he couldn't taste a lot, but he liked the texture (I hope that makes sense).
I asked him when things improved for him. (he had his dx xmas, op soon after, radiotherapy started at easter) He said when the radiotherapy started, he lost taste quickly, but in degrees, and when radio therapy ended he got his taste back in degrees but much more slowly. ie 2 weeks to lose taste, 5 months for it to be at the level he is now. Remember though, they had told him, he might never get his taste buds back, and although he has them back, they are not 100% like what they were. I hope that helps

So, how are things going with Mr UC? I have been thinking about you. Take care, Trifle x

Thanks Trifle brill help as ever! Have just adjusted my Tesco order to include 2 melons.

Things not going well. His tastebuds have gone pretty much straight away. He says looking at food now is like looking at a plate of dog poo and realising he HAS to eat it to survive

They tried to put the peg into him but - long story- it didnt happen and he has to go in next week for general anaes to have it done. He wants it as will take the pressure off him having to eat. He is very emotional, feeling odd and like he has had enough. We went for day out today and he slept most of time in the car but as i said to him, at least he was there.

Thanks again for your FIL answer - he will never know how much it helps to be able to ask things on Mr UC behalf. I will read the answer out to him tomorrow.

Hope you are ok, and thanks again xx

Trifle here with yet another name change, I am sure it says something weird about me all these changes.
I am sad to hear Mr UC is so down, it can't help that you have little ones and have to walk around with a false smile on your face.
We saw dh's dad and stepma today, and I thought I would ask her how things were for her. (I told her about you) she says for me to say, keep your chin up, and that its hard, because everyone thinks its about your partner but it is so hard on you, that you end with mood swings and depression, and to top it of you have a false face YOU have to put on for your man, when in side you feel like asking some one to give YOU a cuddle, because you are so low. So make sure you get lots of cuddles to eh!
Anyway I asked her about food, and she said when they realised that every meal seemed like an effort and was met with loathing and depression they planned for fil to have lots of small meals, at 7am, and then a meal at 12 (after his radiotherapy) then 2.30, 5.30, 7 and 9. There would be fruit (Melon, Strawbs, Melon, Kiwi, Melon, Banana's and Melon!! etc.) for in between. Apparently the Melon went down well as it could be sucked/chewed and it went down easily. He would also have lots of milk puddings too.
I am sad to hear that Mr UC is feeling so down, but pleased to hear that he went out with you and the kids, lets hope that as time goes on, when the radiotherapy is finished and with the help of the peg, then maybe he will feal more up.
Mr UC seems so much more ill than Fil was, I hope his health improves. How is his radiotherapy going he must be half way there now? When his radiotherapy finishes, he will surely feel a lot better. Its how grey they look which worries you more than anything, that and the fact they look weird with a growth (if they have never had one before) and fil's growth was only on half of his face, which looked really strange.
When he has his Peg in, then surely that will make food seem like less pressure. I so hope everything goes well for you.
Please take care of your self. Love xx

Here I am! I have lost my way recently, though little ewonder. UC, sorry to read you too are having uch a worryingly rotten time, I truly feel for you. Its ages since I have been in touch, chemo has started since then, two weeks ago. Basically he has been coping well, the chemo was 4 hours in hopsital for 1 lot then home with a pump for 48 hours for the second lot. So life has been a round of bloord tests, chemo, pump removed, picc line flushed etc etc etc. Tomorrow we see the consultant who did the bowel surgery and will get the result of the latest ct scan, all fingers x`d. Then Tues its blood, then Thurs its chemo, then Sat the pump comes off and the picc line is flushed, a lovely week to look forward to. Last week we went away for 4 days to friends in Cornwall, the kids went to the IOW with school for 5 days, it was a long way to go but I think it did us good. I think as the chemo progresses we are going to be able to do less and less. On top of all of this, my lovely eldest brother has to have a triple heart by pass, prob in the next 3 weeks in London! He lives alone, had an awful car accident 8 years ago and has been putting the pains in his chest down to the injuries from that. Anyway they decided to do an angiogram, Harry actually took him over and that was the shock result. So I can see its going to be a very busy summer! Thats my news!!

Excuse my ignorance, please tell me what a peg is?

Hi there Triplets and Trifle
That smile is wearing thin a bit at the moment but we coping fine really. He will be half through RT soon so that will help his mental state to think the end is in sight.

Sorry you're brother is so unwell Triplets. What a shock for you and your family. You must be feeling overwhelmed at times with it all. I often wonder how many ways we can be spread before it snaps but that's not a very encouraging comment for you, sorry. Sounds like you and dh are holding up well!

Oh and a peg is a common term for the tube you put into tummy through the belly button, so you can be liquid fed through that. TBH I dont know the proper word for it!