Today was a good day ,got the phone call and MRI has shown no problems so we are over the moon to put it mildly .So would appear Paul is experiencing some nerve damage from last RT .Hopefully this will not be permanent as he is fed up with taking so many tablets but happy there is not another serious problem.

This will be a wait and see but at least medication at moment is working and life is managable .

Happy Bunnies.

Thank God, Bell! What fabulous news, I'm really relieved and happy for you both. I would celebrate every time Paul has to put a tablet down the hatch.
I know they get frustrated having to take all the medication but the alternative is so much worse. Pretend it's chocolate ~ that would work for me!!!!!
Onwards and upwards
Deborah

Thank you Debs he is quite relieved and is now feeling more positive about the current problem of his head which is behaving strangely and very sore .New medication is working well but he has now got into the habit of using his left arm and hand and is constantly dong circular movements over and around his head like a wee monkey .Not my description but one Paul said himself in humour.

So we are hoping the next week or so will follow on with some good results with our daughter now .There are some things we don't want to keep in the family.As far as the chocloate goes Debs that is my munchie as Paul cannot eat this becuase of his total lack of saliva and ocasionally he will have a go but ends up worse than a toddler and his mouth becomes a mud slick and his teeth take ages to clean ,he is very dapper in his manner and hates getting in a mess we have such a good titter when he succumbs and has a try .

Thinking about you and Trev and do hope oncolgist has something new to offer.There would appear there are new treatments and tablet form chemo available for certain cases .I know you will keep us all updated on Trevors thread .

Warmest wishes to you both .

Bell

fantastic news what a relief for you both.very happy for you.love shirl xxx

Hello all, as I have said already today we have been offline for a while .Progress here is slow and Pauls face ,ear and head pain has gotten worse again and meds not controlling it.He says he can feel a thumping and is back to rubbing his head and down the side of his face ,was a really bad night but is marginally bearable this morning after more medication .

Will phone on Monday and see if they can improve things .Although they said MRI was clear I am at a loss to understanding why this intermidable pain is not receeding and beinning to wonder if this is going to be a permanent legacy .Get so cross sometimes that we can't get a straight answer and any advice on some kind of solution or exact explanation .

Is there anyone else on the forum that could share their post RT nerve pain and tell us how bad the pain was and where and if at any point it did go away ,also what medication they used .Paul has tried quite a few and currently on Gabapentin high dose plus co-codomol 2 3x times a day plus Meloxicam .On top of this he is also on Omeprazole ,low dose steroid and maintenace Aciclovir for recurrent cold sores .

Last night he felt his eyes were bulging and the pain so bad that his head was going to explode his jaw felt totally seized also. He sometimes feels it is starting from the damaged ear and I did ask last time if their was a possibility of a tear or perforation but they said they could not see one .

Putting my thoughts down and maybe wondered if anyone elsa has experienced this .My other concern is he is feeling a bit of a twinge around chest area and wondering whether one of these medications is causing heart problems .
Any thoughts from anyone with similar problems would be appreciated ,

Bell .

Hi Bell,

Its nice to see you here again, but I am sorry not under happier circumstances. I was getting worried about your absence.

I really feel that you need/deserve some answers and support from the medical team and hope you don't have to make too much of a fuss to get it.

I understand that Paul had re-irradiation and IMRT, and that this is quite unusual and a relatively new treatment option. Are you able to talk directly/pose your questions to specialists at the Marsden who presumably have the biggest body of case study experience to draw on when it comes to assessing whether what Paul is experiencing is likely due to extreme toxicity of re-irradition or something else?

I really hope you both find some answers soon as it seems that you have been having a really difficult time for some months now.

Best wishes,

Cathy

hi bell
as my cancer was at the base of my tongue the radiotherapy was aimed at different positions than paul's.i had nerve damage in my shoulders which was so painful and it just gets you down.i have just spoken to my husband and asked how long did he think mine lasted for and we came to the figure of roughly 6 months although it felt much longer.i could not get any straight answers and my g.p said oh it's a frozen shoulder and after a couple of weeks it affected both shoulders.the pain in his chest could be caused by the steroids as i had pain in my chest when on steroids and they are meant to be taken with food (well the one's i was on)and because i couldn't eat it gave me a dreadful pain and a couple of times i wondered if i was having a heart attack as the pain was so severe and down the centre of my chest.bell i really hope you get some answers soon as once you have finished treatment you just expect everything to go back to normal but it doesn't work like that as i have found out.take care.love shirl xxx

Bell,

I hope you can find some answers this week - answers that work. It's Monday already where you are and I hope you'll be on the phone in a few hours demanding an appointment and some answers (easier said than done, I know).

Take care - we still have to get together! I'll come your way.

Mimi

Thank you Girl's for your response ,Everything you have said makes sense and I know this will probably be the case ,just been one of thosse really low points where I feel helpless to find him some relief .Shirl,thank you for that information have a feeling this may be the case with Paul he is around 4 month mark with this pain so will hang on to your six month time line as a mark.The weekend before last was his 60th birthday and we had a family celebration in house and it was a lovely day he managed well and retired to bed at tea time .On Thursday he had a dental appointment was in chair for a good hour and a half with hygenist and then some small fillings with dentist as we were there, so am now thinking in hindsight this has maybe triggered off a bad reaction with facial nerves .It was far too long for him to have his mouth open so wide ,should have intervened, will know better next time .

Mimi ,I am up and clock watching already to hit the phone and I do hope we will meet in the near future that is a definate date for the diary to look forward to.Cathy was lovely to hear from you also your a great girl and I do hope life with Chaz is going well and you are enjoying the new car and out and about .Well I am off to get Paul's breakies out and have my fingers crossed the pain is less this morning ,will let u know how we get on .

Have a good week everyone ,

Love Bell .

What an awful trial you and Paul are having, Bell. I hope you can find relief for him soon. In saying that though, it's also very important that you find some relief for yourself. Don't wear yourself out, and be hard on yourself because you can't fix things. The miracle work we do is being there and looking after our loved ones ~ it can't ever be stressed enough. Unfortunately for us carers, sometimes we just can't do EVERYTHING (although it's very hard to swallow).
Love to you both. Take care.
Deborah
x

Does sound as if that dentist visit could have triggered the pain. I do hope they get it under control soon, but still hope that you do have some contact with the folks at the Marsden.

We are doing pretty well. Chaz was a bit down a few weeks ago, but I managed to get him to Morocco for a week and we had the most fabulous time in a lovely Riad and I can't recommend Marrakesh enough at this time of year for a relaxing break that does not involve a difficult journey. He refound his energy and bartering abilities and we came home with a case full of swords, daggers, leather bags, bellows etc etc. I totally relaxed and read 4 novels and it was all made more fun by the fcat that our riad had elec problems and the owners offered us a huge discount which really made Chaz's month.

Sadly he picked up a bit of a cold and I was getting worried about him complaining about his sore throat. However, he has just been to his dentist who is a good friend and she has given him a thorough check up including his lymph glands, which she does for all patients and she says it all looks good. I must say I am most impressed by the way she checks the lymphs - much more thorough than his oncologist! Apparently all dentists should do that as a matter of course - a useful thing to know.

So all in all we are doing very well and excited cos we are off to see Ian Mckellan and Patrick Stewart in Waiting for Godot on Thursday and Antony Sher in the Tempest on Friday and then its the start of the Grand Prix seasons YAAAAAAAAAAAAAAAAAY!!! we are total addicts!

Phoned today and they are going to see Paul tomorrow so hopefully will get things under control again .What a lovely post Cathy, you and Chaz have indeed been having an exciting time was lovely to hear all your news full interesting travel and a wee windfall to brighten up Chaz ,excellent.

Keep the excitement going and pass it around the forum , there seems to have been a lot of down turns recently and good times are special and worth sharing .Your shopping spree sounded great fun and I hope you have all your swords etc now suitably dislplayed on the walls ,that would make a good picture for the Album which I have not got the hang of yet ,lol.Regards the dentist ,I do agree they are very important after treatment and ours does the same but in future we need to address time spent with mouth open I think !!!.

Bell and Paul

Hey Bell

Rob suffered excriciating pain with trigeminal neuralgia.The trigeminal nerve is around the junction of the hinge in your jaw bone just in front of the ear,and radiates right down the side of the cheek ,under The eye,and down the side of the face.Post neck dissection he had no problems,but about two months out he was climbing the wall,and we were told it was because the nerve had been damaged during surgery.At first the nerve is paralysed,and as healing progresses and it comes back to life the pain kicks in,Robs worst pain was caused when cold air hit his face,and he had to wear a hooded top and a scarf wrapped round his face every time we went out.Pain killers don't touch that pain and he was desperate.It has been discovered that a small dose of an antidepressant called amitryptilline given once at night can help.It takes about 10 days to kick in and it made a huge difference for Rob.His pain improved no end ,and stayed good until his recurrence when he had problems again,so they increased the strength of his amitryptilline.
Nerve pain is very debillitating,and horribly hard to treat,but it can be done.

love liz

Hi Cookey, we are seeing Cathy today from pain control so will take this with us .Your description of the area concerned is exactly the problem with Paul and the pain indeed is severe especially during the night to the extent it is triggering of SVT attacks which he has not had for years .

There are too many tablets on the go here with him and last night I was concerned that I would need to give him a beta blocker on top to settle his SVT but eventually managed to stop it and was ready for taking him to hospital so major rethink is needed today .

Thank you for your help Cookey your wisdom in these matters is appreciated, wish we could move you over here and start an aftercare and advice programme .Will post and let you know what is decided.

Love Bell

Well had our meeting and decision was to up the Gabapentin at moment and they will check in on Thursdy and make a decision about the Amytriptiline .Last night was another gruelling ordeal and I wish I could video him for them to see the extent of discomfort it fills me with fear and helplessness to watch and then I get angry .

I am so tired of hearing this type of nerve pain is difficult to deal with and then it is back to finding relief without rendering quality of life to a comatose state .There definately is a need for a better after care programme in this disease for pain control and although I know we are getting everything available it has been left to the hospice palliative care to help out here .

The treaments given are more aggressive but the control of side effects and regaining some kind of life afterwards in a majority of cases is not being taken into account in my book .Finding a cure for this intermidable disease is important I know but surely more research and quality of life afterwards needs to be in the balance and work hand in hand .But I guess it is all back to the green stuff and not enough resources .

Sorry ,having a mump but maybe the next few days things will improve ,thanks for listening .

Bell.