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,
Just calling in to see how things are with you all. Been pretty miserable here. Dh went for the picc line to be fitted on the 11th, spent 5 hours in hospital then phoned me up to say they wouldnt do it as they has forgotten to tell him <strong>not</strong> to self inject the blood thinner that morning for the blood clot! So they arranged it 2 days later so that chemo could restart the following day. The next day he went for his routine pre chemo blood test, that afternoon the chemo unit phone up to speak to him, he was out so they took his mobile number. An hour later I get a call from the hospital asking him to go to the day surgery suite at 1pm for the picc line to be inserted, I said he was told to go to the chemo unit at 8.30am for it, no they said its here at 1pm. I said should I phone the chemo unit to tell them that, they said no they would do it. At 5pm the chemo unit phone and ask me to tell Harry to be at their unit at 8.30am, I said no, the day surgery unit should have phoned, they are doing the picc at 1pm. She then said, this has nothing to do with the picc line, Harry had his routine blood taken this morning, we have lost the sample, and unless he gets here for another sample by 8.30am tomorrow we wontget the result back in time for Thurs and there will be no chemo!So he left home at 7.45am and got back at 3pm and the chemo restarted on the Thurs! He had the pump off on the Sat, and then has spent the last 9 days in bed, really tired, great loss of appetite so has lost alot of weight, kids hardly seen him, so with the awful weather it has been miserable. Today he has felt better, but its chemo again on Thur.He also had to see the oncologist last week and the latest ct shows no evidence of any further spread, only that the largest lesion on the liver has increased in size which they say is normal, the next scan is after the next 3 cycles so fingers xd the lesion will have reduced, then its up to London for liver surgery! My brother has not been good, so I made a sneaky call to St Thomass and his by-pass op has been brought forward to the 1st Sept, a weight off of my mind. Also the kids godmother 2 doors away goes in to have her bowel tumour removed on the 8th! Kids not back to school until the 3rd, and I need a holiday

Oh my goodness Triplets - I got stressed just reading your update your poor hubby and you, what a stressful time! Why do these things have to happen - makes me wonder whether I have to personally check every bloomin arrangement too, so it's strangely comforting that things go like that for others!!! Oh that sounds a horrid thing to say, but am sure you understand what I mean

Good to hear your update though, was wondering how you were xx

Hi Triplets and Trifle, how you both doing?

wondered how the op went today Triplets and how your brother and dh are, really hope it was successful and you can have a bit of good news - you so deserve it.

Trifle - again Mr UC has a question for your long suffering FIL!! He feels all the time as though he has food stuck in his throat. Did your FIL have this kind of feeling?Of course I have simplified the explanation he gave me about how it feels, but it comes down to that. Not sure if its thrush in throat or why, but the feeling is getting worse. He is 6 weeks post RT so things SHOULD be settling, but havent really and is still on orimorph

Hope all is well with you both xx

Hello UC, I've just read your thread having lost my brother to cancer and am in the process of watching my father fight it.

I completely sympathise with your frustration at the services you have received. My brother was in a situation like that, a massive number of professionals and nurses, none knowing quite what the other is doing, but all well-meaning of course. My father on the other hand was given, early on, support from a hospice. It began with counselling, not only for him but to the family, went on to physiotherapy, help with sorting out benefits and physical support at home. He went into the hospice after a minor operation and recovered and is back at home. Whenever he needs anything he calls them and they deal with it, day or night.

Basically, the difference between my brother and my father's cases were immense. I hope this helps, but when it comes down to it you deserve the best support right now, not more hassle.

Dad's doing well and I think at peace with himself, knowing that the hospice are going to be there if things get worse.

All the best
TS

Thanks Ts - you've had a hard time how old was your brother? And what kind of cancer was it if you dont mind me asking?

We had the Mac nurse round today as one of the dds wanted to ask questions and I think didnt want to upset us by asking. It really helped her so am really pleased with that.
Think I am passed the point of them helping tbh - needed that a month ago. Though if dh gets worse of course I will need them, but trying not to think that way.

Thanks so much for your post xx

Heh, its trifle here.
Nice to hear from you UC and Trip.
How are things with your husbands. I hope they are feeling better.
Taxi, how is your dad and brother now.
Thinking of you all. Trifle. x

Hi UC and lickleolme
Thanks for asking, my brother passed away around 3 months after lung cancer diagnosis - he was 50 and a very heavy smoker. My Dad's OK but getting fantastic treatment by all the services now - unfair as brother's support was so poor. Getting support from the hospice has definitely made a massive difference.
Take care all of you.
x

Hope things are OK.
Thinking of you all. Trifle.

Hi all,
An update! H just had round 5 of chemo, one more to go on the 25th. Then ct scan of the liver on the 2nd, result on the 9th Oct. Then if there is enough shrinkage up to Kings for surgery, then 3 more months chemo, then scans etc, then ileostomy reversal, should take us up to about next May!!! Side effect bearable for him poor thing. My brother had his op on the 1st, all went well, but he is not helping himself to the road to recovery, not walking as he should, so I am abit cross with him atm! How is everyone else doing?

Hi all! You are really going through it aren't you Triplets how are your children coping? Do they talk much about it? Is so hard to know how much to let it rule your life isnt it.
We seem to be coping ok. Not had any scans yet to see if the cancer is still there or not. Have appt with consultant next week so am hoping he will advise us of dates. The waiting is so awful.
How is your brother now? Hope he is helping himself a bit more.

Hope all are as well as possible xx

Hi UC, its nerve racking waiting for scans, then results. I have been on the Cancerbackup forum and in touch with two people in Aussie, they get the scan and the results immediatly! Harry not good again today, went to bed at 8pm same last night, hasnt had a proper meal for over a week, just living on soup, at least its homemade! Its such a worry though. Kids seem ok, they actually talk quite casually about it now, strange how quickly they adjust, they have certainly seen him looking very poorly, toughies really, its me who crumbles inside. Scared for him, scared for them, already being born to older parents, feel in the middle of it all at times. My brother I hear is improving, the cardiac nurse was with him for 2 hours yesterday and wasnt pleased he had not been out walking, so it sounds as though she has had a word!

Hi UC, how did your appt go with the Consultant? I hope all was well and all of you are doing OK. How are you and your tribe doing trip? I hope your dh and bro are doing better.
Things are Ok here. Anyway sending best wishes to you all. Trifle.

Hi,
Quick update. Harry had his last chemo today, we hope! Got his ct scan next Thurs, results on the 9th. Fingers xd the lesions have shrunk, so hell go up to London next for liver surgery. My brother came outtoday for the first time, door to door in a car, still not walking, yet he can grrrrrrrrr! I have had sore pain in my lower right side all week, either bowel, appendix or ovaries, jolly, got to to docs next Weds, something else to worry about! Hope eveyone else is ok xx

Hi Trifle and Triplets
Good to hear from you both. So sorry you having troubles Triplets, hope your doc appt goes ok, please let us know.
Thanks for remembering my dh appt Trifle it went very well. Oncologist checked him out and couldnt see or feel any bumps or lumps horray! Next appt he will arrange for scans to be done. That will be interesting. We have been to Minehead Butlins over the weekend and he has gone down with a cold and spent most of saturday in bed, so was a shame but did the dcs and me good - Chico was there and it was a good show! He had a bad tum too which worried him but seems better now.

Hope you all okay and good to hear from you xx

I mean dh had a bad tum, not Chico lol - he looked fine and dandy

Hi UC and Trip, I hope things are going ok in your homes and your dh's are doing well. How is school hunting going for your three Trip? Sandwich, Walmer or Dover?

Hi there,
all is settling down thank goodness. We have just had a lovely night away and enjoyed the peace!! Mr UC doing great and I would say 60% back to "normal" which I couldnt imagine saying a month or so ago.Hope things are going well for you all too xx

(trifle here)I am so chuffed that things have turned a corner for Mr UC.
I have to tell you about this morning, dh's dad came around we were all going to a funeral, before hand, dh, dfil and I had a cup of tea.
Dfil took his chewing gum out of his mouth to drink the tea, rolled the chewy up and stuck it to his forehead. Now dfil always has chewing gum in his mouth to counter act the dryness, so it would be resonable to assume he has a stash in his pocket?
Well I couldn't concentrate, he was sipping his tea and talking and all I could see was that lump of chewy on his head, so I picked it off and threw it in the bin. Where upon dfil complained that it was he last bit of chewing gum, luckily dd has some in the back of the cubboard, but the thing is was not chewy it was bubblegum and it was bright pink! So all three of us trapse of to the funeral and dfil is blowing bubbles like a good 'un. Anyway after the service we are in the carpark and the priest comes up behind dfil to talk to us, just as dfil blows the biggest pink bubble I have seen in years, Thats it really, it doesn't sound funny now but it was at the time.

Trifle............you are confusing me with all this name changing, now I have forgotten, you must live near me? As it looks like being Walmer! Anyway good news at last! After losing almost 4 stone and looking dreadful the 6 cycle of chemo finished almost 4 weeks ago now and the ct scan was fantastic, more than we dared hope for. There is no new spread, inc bones and the three lesions on the liver, the 2 smaller ones have virtually gone and the 3cm one has shrunk by 50%! So now we go up to Kings in London on Thurs for a consultation for the next stage which is liver surgery! All fingers x`d it will go ahead before Christmas, but H needs to be built up first I think as it has left him quite frail. It was just the best news though Hope everyone else is doing ok xx

Hi all,
Went up to London today to see Prof Rela ar Kings. He was so lovely, told us the scan was an even better result than the oncologist had told us and wants Harry in next Tues for surgery on Weds! He is removing 60% of the liver, it will be a 4 hour op and he will be in hospital for a week. Its just going to be hard for me to get up there as it took us three trains this morning, three hours, and next week my trio are on half-term and as they are under 12 they are not allowed on that particular ward. But its such good news!

Well done Mr triplets! That is fab news. You must all be so relieved. Sounds absolutley gruelling the chemo he has gone through - 4 stones he has lost . Will be thinking of you this week, esp on Wed. Hope you manage to cope with it all - you sound an incredible lady.

Lol Triplets your post really made me laugh - sticking it on his forehead!! Must be such a natural thing for him to do at home! My dh is surgically attached to his water bottle, not got into gum much yet. Goodness only knows where he will stick it

We all doing well, have appt on monday with oncologist for monthly check up. Not expecting any great news but hoping for scan dates to be sorted.

Have lovely weekend all xx

Hi Trip and UC, well all sounds promising in your families at last. Good luck with Mr Trips op, and I am glad that Mr UC is feeling better.
(had to be quick, as we have stupidly brought the kids a puppy; its her first night here and she won't stop crying)

Hi Trifle - how's the puppy doing? (Glutton for punishment you!)

Triplets - hope things went ok today. Was thinking of you. Any good news?

Hi all, Trifle here. This is my halloween name. The pup is gorgeous, and has found a friend in one of dh's socks, rather her than me!
How did the appt with Mr UC's oncologist go?

Lots of good news
Harry went into hospital last Tues and had his op on Weds morning. They phoned me at 6pm to say he was fine and al had gone ok. He phoned me the next day and sounded wonderful, he said the team had been round to explain the surgery. He was to have lost 60% of the liver, the whole of the left lobe containing 2 tumours, and 10% of the right containing one tiny spot. When they opened him up the did a ct scan to check that since the scan on the 2nd, things were still the same. They were not. So they did another scan to make sure and oh boy! They ended up only removing approx 20% of the left lobe as the tumours had shrunk even more since the 2nd, so they did a wedge cut as they called it and took them out. The scan of the right lobe showed no evidence of any cancer at all, all gone, so no surgery needed! So as far as Prof Rela is concerned an even better outcome. He was up and walking about within 24 hours and eating. I have managed to get up to see him today, he was very pale and feeling sick. They have removed the epidural and catheter, so given him tramadol for the pain which has made him feel yukky, and he can`t eat. They will try something else tomorrow, also remove the drain and he could be home on Mon! So lovely to be living in the light again after 10 mnths of darkness.