Hi guys
Ananth.
I don't think you are nuts at all, my friend. I had come to exactly the same decision before going into the assessment. No more operations, no more hospitals. Not as far as this condition is concerned anyway, Ive an upcoming cataract operation but I can handle that. Keep strong, it's probably only a pain caused by England thrashing India in the recent one-dayers.
Chelle
I am very impressed. You actually saw Simcock. This man is my consultant and and I have not seen
him since early May, way before treatment even started. However, they have done the job in the end, got rid of the cancer. They may have caused me a lot of needless distress along the way but now that's all OK. You can't help but wonder how many other poor souls have suuffered because of their incompetence and have not had such a favourable result.
Love and regards.

Brilliant James. fantastic to hear good news! Re sore throat, I think you're lucky to have your RIG out already! Bill is nearly two months ex r/t and still unable to swallow - but trying hard.

Onwards and upwards!

Hi Ananth, Everybody
Yes, I've been out of the loop for a while it seems. Not intentional, time is just rushing by and travelling to Adelaide everyday (only 42kms) has been exhausting, which is just ridiculous.
However our great news is the fact that Trevor had his last chemo on Tuesday and today his last r/t. The last seven weeks seem to have flown by although as it was happening, probably for the first three weeks at least, we seemed to be in a time warp and it felt that we'd never get to the end of it all.
TTs a bit of a mess right now. I think he's totally overwhelmed by fatigue to begin with and that just makes everything else more of a trial as well. He has terrible pain as you would all know but with a different doctor over the last week has had better results with the pain management ~ she has been fantastic. He's having a patch (Fentanyl) plus Panadol rapid 4xdaily with Oxycodone for back up. He is sleeping so much I wonder how much is due to medication and how much is a result of the treatment. I don't care where it's coming from so long as he is getting some rest from the whole thing.
Coughing up mucous is terrifying, again, as you would all be aware (moreso than me) but time now will be the healer and there is nought we can do but wait it out. T has an appt tomorrow with the med oncologist, he sees the ENT specialist next month and then an r/t review in Nov. What are they going to tell us? If they couldn't find it in the first place, they aren't going to be able to give us any results, just hope it all did the job.
Ananth, yesterday I was talking to a lady waiting to have her r/t and she has lung cancer. She was telling me that her three sisters and her mother have also had cancer, all different. One sister had cancer of the tongue and has been on a PEG for six years ~ remind you of anyone? She is also looking into having an esophagus constructed. I felt like she was talking about you!
Don't go getting too cocky about the cricket now, Ananth. We're just lulling the rest of the world into a false sense of security so that we can sneak up and pull the turf out from under our competition! Great news on the cricket front this week was that Glen McGrath's wife has won her latest battle with cancer. She is such a young woman and I think this is the third time around for her.
Well, as always, it's 12.30 am now so I'll be off.
Take care everyone ~ hope you're all on top of things.
Love from the land down under
Deborah

Hey Deborah,
Can't believe Trevs almost done with it all! It really has flown by.
They should have sorted his pain managment before now... That's not good enough really .
Give him a big hug from me! & make sure he gets all that rest and all the feed he needs to start healing now!
Well done you!
Michelle

Hi
Angiebaby, many thanks for your good wishes. I'm sure Bill start to notice the difference very slowly day by day now. I'm at exactly the same stage (nearly 2 months ex RT), but was very fortunate to have the help of the Martletts Hospice for 3 weeks. I think my rig came out a month too early, it's extremely painful to eat anything, but now I have no choice. Good luck and best wishes to you both.
Require a bit of help from anyone. If you send a private message to someone via the forum how do you know if you've got a reply? I sent a message to member Robert in Thailand who posted on Hughmans thread on 2nd June. There seems to be no word from him since. Anybody know anything.

Love and regards.

Hi Michelle
Trevor is still having a struggle with pain. I phoned the hospital this morning and have to contact our surgery tomorrow to see about having the strength upped on the fentanyl patches because he is having to have full doses of oxycodone and that shouldn't be happening.
I've given him a 'thoughtie' hug from you. He looks so frail I think the real thing might snap him!! Trevor has always been 'big'. His big strong arms were an early attraction for me, but the poor thing is getting a bit scrawny on it. He'll have the time of his life when he can get back to eating and going to the gym.
How's your business going, Michelle? My poor, poor neglected dogs could do with your services ~ any chance of you dropping by???
Cheers
Deborah

Hi Chelle
Sorry I have been so slow in thanking you for your good wishes. I hope you are keeping well and improving all the time. I actually had a consultation with Dr. Simcock last week. It was a shock to discover just how advanced the tumour had been (T4), especially as they took over 5 months from the time I gave My GP an MRI scan taken abroad that clearly showed a lump, to starting treatment. He apologised for the previous cock-ups and organised a scan for next week and a further appointment 2 weeks later. Only then will we know where I really am. Best wishes to you.
Love and regards.

Hello James

You sound to be on the up, thats good. I know I am nosey but why did it take so long before treatment? What about the MRSA? are your still troubled with the dreaded phlegm, how's your eating going?

Otherwise all the very best for next week, will keep everything crossed for you.

Hi Angie and Bill
Thanks for your reply. Hope things are getting better for Bill. To be fair to the Cancer Centre the delay in starting treatment was not their fault. My GP reffered me to Neurology at Haywards Heath and waiting for appointments, further scans, biopsy and diognosis took 4 months. I hsd MRSA in 2 places, at the RIG site which was caused no problems really and in a huge abcess in my arm from a syringe driver. That one wiped me out and led to my stay in the Hospice. They treated it with some nasty antibiotics and Manuka honey and it cleared up. So all the horror stories we read about MRSA are not always true. The phlegm hs eased off condiderably in the past week, it was so bad at one time that I had to have daily injections of Robinul. It's now a nuisance instead of a problem. But now the stuff is going I have a ferocious dry mouth and the pain in my throat is not improving at all making eating very difficult so I'm maintaining weight by drinking Fortisips. I finished RT on July 25th which must have been around the same time as Bill so I really feel for him. Give him my very best wishes and take care of yourself.
Love and regards
James

Hi James, You have been through a lot. Bill finished r/t on 29th July still has the NG tube (same one since middle of r/t) fitted and is still not much further on taking food orally although he can now sip a teaspoon of water at a time. We did however achieve a result yesterday when a friend had recommended Iron Bru so I am expecting great things soon! I am now termporarily giving up on liquidising everything and anything in my fridge and will leave it to him to decide when, otherwise we will be divorced before we get the all clear. So, you have done very well having your tube out so early. Also, when you mentioned Robinul is one of year earlier posts, I asked the Dr and she said she didnt want to prescribe it, I must ask her why.

All the best

Hi Angie
I don't understand why your GP is against Robinul. At the very worst time of the mucous problem it proved hugely effective. The nurse used to come every evening and it lasts for about 12 hours. The only drawback is it swings you the other way and dries the mouth but at least you get some sleep with that way. I would think that Bill is past the worst and doesn't need it now. I know they do it in tablet form, which should go through the RIG. If Bill is really suffering get onto your GP again. If he can take a sip of water he's nearly there. The more sips you can get him to take the easier it becomes. Your local Cancer Centre should have a SALT team ( I forget what it stands for) and should be giving Bill regular swallowing assessments and help. He's getting there Angie and I'll follow his progress with great interest. Love, James.

SALT = Speech And Language Therapist
Robinul reduces salivary, tracheobronchial, and pharyngeal secretions.

Thanks you two

Hi James,
Good to hear things are on the mend and you FINALLY got to see Dr.Simcock.
Try not to dwell too much on the tumour staging. There are people that get the all clear from a T4 & then there are others that sadly don't survive a T2. Its bizarre the way this disease pans out. Why it works for some and why others don't make it. Why some have recurrance and some have their happily ever after.
I hope someday they figure it out so we ALL get a happy ending!
Let us know how the scan goes.
Keep your chin up!
Michelle x

Hi everyone
2 weeks ago I had an MRI neck scan to see if there were any infected nodes or glands left behind by the treatment. Got the result today and it's all clear. So after a long and horrible journey I have a reprieve, let's just hope it's a long one. I sincerely thank you all for your support and I will continue to follow your progress and contribute in any small way I can. Just have the small matter of a cataract operation next month and then I can go and visit my family in the Far Est for the first time in a year. This thing continues to come and kick you though. Months later I have now developed chemo-induced neuropathy in both feet. More uncomfortable than painful but just shows you can't take anything for granted.
Love and best wishes
James.