And yes it is Walmer, did the forms online the other day, my friend said it took ages but I thought it was quite straight forward, just x`s 3!

Nickerless.............where do you live? I think I have asked you before. Tell me not to be so nosey if you want to!

Its my sad version of an Xmas name, but you know me, it might change in a couple of weeks.
How is your forms x3 doing for school, they have to be in by the 7th don't they. Is it still Walmer?
Walmer finishes at 3pm now don't they. Short day, although dd finishes at 2.40!!! she is home from Canterbury, before her brother who goes to the village primary is home!!!

Its my sad version of an Xmas name, but you me, it might change in a couple of weeks.
How is your forms x3 doing for school, they have to be in by the 7th don't they. Is it still Walmer?
Walmer finishes at 3pm now don't they. Short day, although dd finishes at 2.40!!! she is home from Canterbury, before her brother who goes to the village primary is home!!!

Lurrrrve the name nickerless! Thanks for your lovely words, home tomorrow, less than a week, its amazing! Sooooooooo pleased for you too Mr and Mrs UC, yes, I think someone up there is looking out for us all, bless them, and thank you for saying Matthews name, when its unexpected it always makes me feel happy, just to see it xxxx

Trifle here
And I am
So much that my face is splitting
So much that I am ignoring the puppy playing with dp's shoes
One for Mr and Mrs UC and the little ones
And one for Trips, Mr T and the (4) Trips (because Matthew is soo on your side here Trips)
and what the hell, once more

Oh Triplets what great news !!! am so pleased for you all. You so deserve good news. How are the children with everything going on? Mine seem totally oblivious most of the time but i think that's probably the best way of coping tbh!

Hi Trifle - glad pup is settling in well - think you are very brave, i just have loads of children rather than animals . Mr UC's appt went brill. We have to go up monthly and went last week. Onc said they are amazed at his progress/voice strength/eating. Waiting for scan dates now but onc doesnt give us impression they will find anything unexpected. So good news here too!
xx

He is coming home tomorrow, yippee!

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.

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?

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 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)

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 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!

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

(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.

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

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?

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

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

Hi,
Quick update. Harry had his last chemo today, we hope! Got his ct scan next Thurs, results on the 9th. Fingers x`d the lesions have shrunk, so he`ll 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 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 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, hasn`t 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 wasn`t pleased he had not been out walking, so it sounds as though she has had a word!

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 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?

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

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

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

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

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

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

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,
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 wouldn`t do it as they has forgotten to tell him not 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 won`tget 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 x`d 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 Thomas`s 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

Thanks Trifle - you are a sweetheart

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.

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

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!

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

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)

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.

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?

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.

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 and thank you trifle xx

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.

your lad is a cutie.

Hi you guys,
How are things? Sorry I haven`t 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 couldn`t 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

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!

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!

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 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?!

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.

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?

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.

thinking of you. x

hopsital sounds nice

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 didn`t have the result of the CT scan, won`t 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

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!

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

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!!

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

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

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

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

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

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

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

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

best wishes. x

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.

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?

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

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

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 !

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.

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.

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.

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 can`t start until they sort this anemia problem out. On Frid they said if the level hadn`t 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 couldn`t come home!! They checked his blood again this morning and it was up to 9.7, so he`s 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!!

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.

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!

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.

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!

I asked dh dad and he had a ctscan before his radiotherapy. He also had a mask made so they could protect the rest of him.
I hope all is going well for you and yours, best wishes.

triplets - how are things going?

thanks trifle and the icepopqueen. He is ok today - feeling better now the anti-biotics have kicked in

theicepopqueen can i pick your brain again?! The hosp rang and he has to go for a CT scan next week - is this normal before radiotherapy starts? Do they normally check for any more cancer before it starts? He didnt ask why they wanted him to have the scan - just wondered if it could be related to the extra tests they told us they are doing on the tonsil they took out.
Forewarned is forearmed and all that

I hope all is going well for you and Mr UC.

HI UC, sorry not on last night. Unfortunately if Mr UC has had a neck disection it is quite common to have a problem with the shoulder. It may just be related to the infection but it could be due to removal of involved tissues. His throat tightness could be to do with being dehydrated and the surgery at the back of throat can make things feel quite constricted unless he is drinking more. it would be a good idea to see the dietician - this should happen as a matter of course but there is no harming in prompting the matter.

His shoulder sounds awful UC. Has he been told if he has an infection from the operation, or is this 'normal' (I don't recall dh dad getting this)
I wonder if his throat is so tight because the bruising has come out and it is swollen post op, or if that is an infection.
I missed a bit out of my last post, with ds and with fil too, to build their weight up, we have been adding a high calorific vanilla ice cream to the plain buildup (its called Ensure and its for adults) drink as well as the nesquik. Easyish to swallow, but more calories, but obviously he/you will no when the time comes for him to be able to drink it. Has he lost much weight?
Best wishes. Trifle

build up drinks is a very good idea - have passed it on to him that mobile!

icepopqueen - is it usual to get a swollen shoulder post op? He has an infection and on antibiotics and in a lot of pain.His throat feels tighter too. Is this usual?