Been keeping head down with my husband and becoming quite deperate with his recovery .He finished his treatment on the 6th of December2005. 35 daily doses of RT plus 3sets of 4day chemo intravenous of Cisplatin and 5 Fu He is unable to get on his feet ,still bed to chair for a few hours in afternoon.Six weeks ago he took sore joints and swelling in his hands.He is on anti-depressants and also spent 6weeks on a syrige driver with cyclizine plus Halloperidol for persistant vomiting.He is now on this orally but still the vomiting is occurring.Before he was started on this medication he was experiencing terrible agitation and the medication for his vomiting i have been told is not helping this.His legs swing about constantly and his feet are never still.His dry mouth is bad but using biotine products and he is on anti-biotics constantly for throat infections and thrush .He takes 2 ,5 mls of the thrush medicine evry morning also to try and prevent this.Also oxeticaine plus antacid mixture to help throat swallow small liquidized foods if we are well enough to see if we can get him off his peg tube.He still has no appetite and is on Megace for this but is not stimulating any appetite at all.I was wondering if anyone else who has had similar treatment has experienced any of this and how long did it take to get some kind of regime sorted to achieve a little quality of life.We have our 6 weekly check up next week and i keep a diary but once we get there and come home i don't feel we are any further forward. The vomiting and constant agitation and weakness in his legs is really brnging us down and he is becoming more withdrawn and just wants to stay in bed and wont see anybody except his mum ,sister and our 3 adult daughter'.I would be so grateful forany advice or tips .
Bell.

My goodness - I really feel for you - what a wonderful wife you are. I had a radical neck dissection oct 2 2004 followed by 33 sessions of RT (no chemo)which finished dec22 2004.
I was heavily depressed and was on anti depressants. My depression was killing me and it was the devotion of my wife which helped to get me through.

I found the RT a real ordeal. Radiotherapists at the hospital told me (after its completion) that they thought I wouldn't finish it.
Of course I had to - it's the goal you set yourself to live. When it was completed I was totally wacked for many months - still am to some extent. I really don't know how I would have managed if I had had chemo as well. Your husband's reaction to it all are understandable.

I used to stay in bed all day and stay up all night for months. My appetite was awful but my wife did her best to feed me with moist foods that i could swallow. I would start my first meal of the day at midnight sometimes and complete it at 3 am. Eating was a chore and very difficult but I knew I needed to keep my weight up (I was always worried about what lay ahead). I ate rubbish at times - apple pie lathered with spray cream. I would use up a tube a night - it kept my weight up though!!

After my RT finished I thought I would improve quickly - unfortunately it rarely happens and this triggered my nervous breakdown. It takes time but things do get better eventually.
I'm talking months here or more. Your hubby's been through a lot physically and mentally.

Go with the flow - things will improve eventually. My family just carried on as normal as they could around me when I was in my darkest days. Stangely enough this helped as I did not want them to mope around worrying about me all the time. I wanted my children to go out with their mates etc and have a bit of fun.

I have a more normal life now. Came off the anti depressants 3 weeks ago and am working part time. It all helps. I still have "issues" - but I have much more of a "normal" family life now with the usual routines that it involves.

Good luck to you and your husband - he will improve over time - no doubt about it.

my best wishes - Tony

Dear Tony,Thank you for your reply.You have been through that tunnel of terror also and i am so pleased you are now at a point where you see a future unfolding in front of you albeit a very different place from where as a family we were used to.This gives me inspiration for Paul and myself and reminds me that patience and time are the best healers also the family unit around us.It is helpful to communicate with others that are in the same time zone of the this dreadul disease where the treatment can cause more harm and traumatic problems which sem unbearable to overcome both physically and mentally.You have come through so much hourself and your family must be so proud of you.You also must be feeling a sense of achievement gaining back your strength and control on your life.I look forward to Paul getting to this stage." morrow is our 6 week appointment ,hopefully all will be well and we can tackle the other issues of his hands ,vomiting and muscle agitation in his legs.These problems seem to be outweighing the dry mouth and peg feeding at moment which he has accepted as part of his life at moment.
Thak you for being so supportive Tony it is greatly appreciated.I wil post an update once we have been to hospital.Keep up yur positivity and good health .Getting back to work part time must have been a great boost and will help cope with the other "issues" you didn't go into detail with.
My best wishes to you ,Bell.

Thanks for replying so promptly Bell particularly as you have so much to deal with.

I've just had a thought - the worrying agitation in Paul's legs might be L'heurette's syndrome (sp?). Does it become apparent when he bends his head forward. If so it's a side effect of RT which had been given around the spinal area at the top of the neck. It kicks in about 2months or so after the RT has finished and can last a long time.

It happened to me and it was an incredible worry until it was explained to me what it was.
"Issues" - these are the general aches, pains and weaknesses around my mouth throat and body which still make me worry.- The consultant says to stop worrying - but it's difficult not to let these things prey on your mind.

Good luck - Tony

Thank you Tony for your your prompt reply .Jangling this morning ready to face the Grim Reaper(Oncologist who talks to my feet and doesn't really explain much )and ENT specialist who found the cancer .Our appointment is this afternoon and trying to memorize how to put all my questions in order to get a proper explanation of his symptoms and how best to deal with them .That was a positive sugeestion about the agitation as it does worsens when he is on his feet ,ie bath and moving him into chair where he is at these times bending over at times my best description is when motion occurs, also the vomiting.
This at least gives me something concrete to mention so they know i am searching for solutions and answers and not some stupid woman who is content to be fobbed off due to lack of knowledge.I feel i can cope better if i have a sound knowledge of what we are dealing with and allows me to judge better how and when i can encourage him on to get him out a bit more for walking in garden and exrcise his weak legs.
I totally understand the mouth weakness, throat and body issues .We are the same and as soon as Paul feels his throat starting up as if there is something stuck there i have the torch out trying to see .Usually it is another infection or the nasty recurrent thrush.On the plus side after the aggressive RT it stands to reas0n there will be delicate scar tissue there and i am led to believe it does take te body some time usualy years to heal.Most importantly it is the back up system of lotions and potions to make these symptoms managable .This is where we are falling short at the moment i think.Worrying comes with the territory here and it is really hard to learn to deal with that as we are learning.You Tony have come a long way though, here you are helping us and expressing yourself and giving helpful advice .This is proof you have your life back and are in control again which is an accolade indeed.Paul on the other hand is still in that dark place where i feel he is still traumatized and will not talk about anything including his feelings and just hiding and accepting everthing with such a wee brave face. It just breaks my heart to watch him and i find it all surreal like a nightmare, hoping when i wake up it will just have been a dream.Now it all has become very real and i just prattle on for both of us .Thanks again Tony for the advice i am so grateful to be able to confide and express myself on this wonderful web site .It truly is a god send ,all due to Dr Vinod god bless him. Take care Tony best wishes to your family.Will let you know how to day's consultion goes ,fingers crossed.

Best wishes, Bell.