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

Hi UC,
Well we sat in the hopsital waitng room for 90 mins waiting to see the consultant, H sat reading the paper looking cool as a cucumber, me sat wringing my hands out, holding my stomach! Finally went in and he didnt have the result of the CT scan, wont get it now until the 17th!! So it ended up a general talk and that was that!! He said though that he needs Harry to try and maintain his current weight, he is losing weight atm, but then its only 9 weeks since surgery, severe anemia, ileostomy,chemo, its a hell of a lot! Hope your DH has had a good day, and you xxx

hopsital sounds nice

thinking of you. x

Trifle here, I hope all is well, dh dad came around her on tuesday and informed us, that he was a year post radiotherapy. I know that he still has some difficulty tasting, but he is doing so well. I hope all is well for you too.

Glad he is till doing well Trifle. That's really encouraging.
Mr UC is a wreck to be brutally honest cant eat properly, only swallow liquids painfully slowly, cant speak above a whisper, cant lay down so isnt sleeping properly. Is on heavy painkillers and morphine.

RT has ended tho, that is the only bright spot. Cant wait till his first scan to find out if it has worked. Trifle - can you FIL remember when they did his first scan after his treatment finished and whether they could tell him if it was successful? Thanksxx

How things going with you Triplets?

Hi, its Trifle here.
Sorry about the delay in returning your post but we have been away. I saw fil this am, and he said that when he had his first consultancy appt, after radio therapy and his scan, that was when he was told that things were ok.
I asked when he had the scan and he couldn't remember but, thought it was with in a month of radio therapy ending, his girl friend thought it was 2 weeks afterwards, sorry that is not to helpful. He sees the consultant every 4 months now, it was originally every month, then every 6 weeks, then every 2 months and it will end up as once a yr.
I am so sorry to hear that Mr UC is having such a bad time , it is an awful disease this bloody cancer. Is Mr UC having any ensure to drink? Has Mr UC asked the hospital Occupational Therapist in help with equipment for his sleeping?
Good luck, we are praying for you both. love T.

It breaks my heart to hear how ill Mr UC sounds, please send him all our best wishes from the Trifle gang, and to you and the kids too. 'one day at a time' eh. maybe he will end up doing those flick flacks yet?!

Thanks Trifle for that info. Cant wait for his first scan to say it's all gone.
Sadly he was taken in yesterday morning and admitted into hosp. Was near collapse and having panic attacks/coughing up blood. He getting good care now - the hspital were shocked he has had no aftercare with a nurse popping in, but we've been coping alone. Am releived he has gone in and is being assessed.
Am bedridden too as my back gone into spasms so on all kinds of med and I think me not being able to help him freaked him out a bit. Hoping things change soon as this is awful xx

It sounds awful whats happening with Mr UC. I am loathe to say this, but I think I will tell you what fil's consultant told him. They told him its like weeding a garden, they can 98% of the time cure this sort of cancer, those that arent cured, they can keep taking the lymph nodes out. I am only saying this from memory mind you, so don't quote me. I hope all gets better for Mr UC, I am hoping that this is the turning point for him, you guys need a break!

He has been so brave and put up with so much. Texted him tonight that ds1 is on the front of Big Chris dress up box - have another thread on it but useless with links!- and that really cheered him up!

Hi you guys,
How are things? Sorry I havent been on this thread much, its been such a roller coaster here. Basically we had started chem the last time I posted, his last chem owas the 3rd July. Just before his 3rd cycle he really deteriorated, so much so he spent 3 days in bed, was sick, and just couldnt stand up. We had to get him to the oncologist and it turned out he was severely dehydrated, a side effect of the chemo, plus the ileostomy bag was just filling with fluid. They kept him in hospital, put him on a drip for fluids and within 24 hours he was back home and quickly recovered. They decided to give him another week for his kidneys to recover before the chemo started again. Then 4 days before he developed a swollen arm where his picc line is. He ended up back in hospital for 7 hours, they found a blood clot in his arm due to the picc line not being flushed properly!. They removed the line, cancelled chemo until a new line can be inserted, which isn`t until next Mon the 11th!!!! So, he will have had a 6 week interval between chemos, now they say he will have to probably have another 2/3 extra cycles which throws the whole plan out as liver surgery should have gone ahead in Oct/Nov. On top of that he has to self inject a blood thinning drug every day for 12 weeks!!!! Then I have been to London with my brother who was suddenly diagnosed with heart problems, he has a triple by pass on the 16th Sept, he lives on his own near me. Then the kids godmother who lives 2 doors away was didagnosed with bowel cancer also last week and is awaiting a result of a second biopsy! What a dreadful year this has been. I amfinding it hard to keep sane having the kids off for 6 weeks too! Hope someone has some better news xxxxx

your lad is a cutie.

Triplets and UC, you are both going through such awful times, (btw its trifle) I am thinking of you both and your little ones, I hope and pray that your partners (and bros) come out ok. All my love Trifle.

Hi and thank you trifle xx

Thanks Trifle - I only got the call confirming they wanted him for the shoot that morning so didnt have chance to get his hair cut - was so annoyed as he looks much better with short back and sides but hey - it's an experience and he enjoyed all the fussing!!

So so Triplets what an awful awful times you have had your poor dh and you must be beside yourselves. Havent heard of a Picc line before - that's not the same as a driver is it? Dh has one of those in for his meds. Hope you hear better news soon, or at least have the strength to cope. One of our friends sent a card with the words "The problem before you is not as great as the power behind you" (hope i havent said that before!!) which has helped us a bit xx

Hi, its Trifle here. How are you all? I think about you all a lot, so I am just checking in to say, much love and prayers.

Hiya - funny to be on at same time - cant sleep as usual!

Things slowly improving - he is eating normal food again in small amounts, mouth ulcers bad. Is home for the night to see how he copes and seems to be ok.

My back went into seizure so have been flat on back for 10 days - on diazepam, pethadine etc. Kids having to be dispersed to others, not ideal but am lucky to have support to help me. Better today so hopefully we have turned a long, bendy, bumpy corner!!!

How's things with you?

Do you think your back went in to seizure because, dh was going in to hospital and you knew you would be able to have help with the kiddies. Sort of like, you coped and coped and coped, and a corner of your head said ok, now you can relax. Weird thing to say, but I could see that happening. Shit timing though. I am so glad that Mr UC is feeling slightly better, I so hope this is his corner.
Heh, do you live in Brighton?
Tell Mr UC when this is over, we will both have to learn to flick flack, and then he and I can flick flack down Brighton pier! yeah right, I'll break it!
Sending all of you love and calming thoughts.

What are they giving him for the ulcers. Dh dad had some really strong jell, which you had to dilute and swirl around your mouth, (which was really hard to do when they cut the muscles under your tongue)

I thought similar too re my back - i coped and coped with school runs/shopping/children as had to then he was taken in just after they broke up from school and bam! Back seized up. Osteopath was very helpful, said my spine is very curved probably from all the babies, and she said until it calms down and she can work on it even pilates is out! Am so so gutted as exercise has been my release valve in coping these last few months and i cant do any. Had lost a stone and it's creeping back on so back to square one Have physio booked through nhs too so should get it sorted soon - though osteo said NOT to mention to physio i was seeing both as they may not want to touch me! I DONT CARE - JUST WANT TO BE OUT OF PAIN!!

Mr UC has some gel stuff not sure what it's called (like a chemist here with all his bits) has been on it a few days should start to work soon. His skin has healed incredibly well around his neck, good old aqueous cream!

Oh and no we not in Brighton what made you think that? Though a good ol' flick flack by the sea is tempting

Don't know why I thought Brighton, I just had a feeling.
Why the hell did they not give him the gel before. I wish I had known, we had some up until dd cleaned our fridge out (yea! for bored 13yr olds) I would of sent you some, even if it was just so you could have shoved it under the consultants nose asked for some.
I am so pleased that you are getting Physio, Osteo is soo good. DS has had a lot of Osteo, it just costs so much, but heh whats DLA for!

Don't know why I thought Brighton, I just had a feeling.
Why the hell did they not give him the gel before. I wish I had known, we had some up until dd cleaned our fridge out (yea! for bored 13yr olds) I would of sent you some, even if it was just so you could have shoved it under the consultants nose asked for some.
I am so pleased that you are getting Physio, Osteo is soo good. DS has had a lot of Osteo, it just costs so much, but heh whats DLA for!

There are so many things that over the weeks have gone wrong and the ulcer thing is just the latest.

1. Why didnt they organise his peg feed to be fitted until he was almost begging for it?
2. Why when they finally got round to him going in for it and it couldnt be done due to his personal fear of things going down throat- did they not put him on the list for a general for it to be fitted?
3. Why when i told the Macmillan nurse YES to her question do you think he should be admitted as he was so ill did she just say "well just let us know if he gets worse" then when he collapsed at home 2.30am 3 days later and was admitted to hospital - where the staff were horrified at his condition and us being left alone to cope.
4. Why has our claim for DLA been disallowed when he cant walk/talk/eat and we dont know when/if he will totally recover
5. Why did it take me 3 TIMES OF CALLING did it take income to support to sort out our claim? For 5 weeks I only had child tax credit and child benefit to live on and couldnt tell Mr UC as he had to use all his energy in coping with his RT
6. Why have I been totally left by the Mac nurses - brill at first but sadly been non use in last month when our family has needed help/advice/comfort - to cope alone? No paleative(sp?) care AT ALL organised . Me having to cope with 5 children and sick dh with no help at all apart from luckily for me brilliant family. We even had to cancel his clinic TWICE as he was to sick to attend - still no call from his nurses or doc seeing what was the matter

There are so many other irritants that I wont bore you with. It just helps to rant sometimes, anonymously on the net! Sorry i hope not offended any MAC nurses - I have full respect for you. Just in this case I have been let down, but know it's very unusual.

So the latest lack of ulcer stuff is no surprise to me. Sadly

Bloody Hell UC, I didn't realise things were that bad!! You lot really have been through it. How are things going now? Did Mr UC have a good weekend? How is he feeling.
I am so shocked with what has been happening, its no wonder your back gave out, how are you feeling?
Best wishes. Trifle.

Thanks Trifle - you are a sweetheart