Hi everyone.

Busy week. Paul had appointment with consultant who did neck dissection on Monday. He was really pleased both in terms of his handywork and also the fact that Paul is doing so well. He has generally been pretty good and sort of back at work. He gets a bit tired and his neck aches but rests in between and every day better. Eating well, numbness and swelling all improving. Put on about 5 pounds.

Today Sandra, Paul and I went to Barts. He had fitting for mask and then would have had calabration for radiotherapy done but that has been delayed until Friday. He had a dental appointment booked for tomorrow and although we knew he didn't need to have any extractions, we wasn't sure if he needed any fillings replaced. Apparently it does make a difference if the fillings are altered as changes the calabrations so they said best to get that checked first. Off the train, straight to the dentist. Check-up, fillings sound, scale and polish done, tomorrows appointment cancelled. We did however ask some questions and the nurse asked us if we would like to wait and see a doctor. Registrar saw us about half and hour later and went through everything with us. What a difference that made, he talked through all the treatment. Radiotherapy starts on the 15th of November, Monday to Friday. Thursdays he will have the Chemotherapy for six weeks. It all finishes Christmas Eve. Paul can get a taxi there and back, if he becomes really poorly, they will book him in the hostel they have at the hospital. Also Sandra has applied for a disabled badge which will last for a year. He has to have peg fitted on 30th of October. At least now we feel pretty prepared, at least as much as we can be in the circumstances. Sandra hasn't slept at all well since this all started so hope tonight she will be better. Of course none of this makes any difference to whats ahead as far as Paul is concerned but talking to registrar today made such a difference in terms of what to expect. This forum has been brilliant for support and information. Thanks everyone.

Hi ,that is great news Joan ,sounds as if you have managed to get everything all sorted out ,pleased he got all the dental checks done and you are now more settled about everything .The fact that his peg tube has already been discussed will make a huge difference as nutrition through treatment is of the utmost importance ,that is where my Paul fell by the way side and delayed healing and getting on his feet by nearly a year.It was never discussed prior to treatment and when the time came it was needed it was too late ,this was not down to the hospital but Paul being distressed and allowing it to be done too late .

Will be thinking of you keep us posted .

Best wishes Bell and Paul.

Hi Bell,

Yes, you are right, am much more settled. Last six weeks have been a proper fact finding mission but will back off now. Guess its something in one's personality, probably not always a good thing but have never liked surprises as can knock you off balance. Also like to always have a bit of a contingency. Wish I had called Paul by another name now as so many of them. My husband is a Paul as well and we have another Paul friend. When we all get together someone says Paul and they all answer, very confusing.

Joan xx

Hello Joan ,been trying to catch up with all your previous postings .My Husband had to go through more treatent 3 years later which was in May but he had to go to the Royal Marsden in London which was a distance from us in Scotland.It was an excellent hospital and we stayed in accomodation provided by the hospital which was paid for by the NHS.A lot of patients there stayed there for treatment during the week and travelled home at week ends as they were England based .

Not sure which hopsital your friends are going to .

The Chemo and RT together is a very aggressive treatment and everyone responds differently .Regarding lotions and potions.I would wait for the hospital to decide which ones to use as they will monitor his skin and reactions closley .If He needs any topical lotions they will supply theese via the hospital pharmacy .In the meantime he is best to use nothing on his face and only baby shampoo for hair.Also not to use any any shaving creams or razors just an electric shaver .

Some people cope well with their skin through RT but with the chemo alongside it is more difficult .He will become very tired as the weeks progress and plenty of fluids and nourishment is the key at all times .Be assured the hospital team will keep a close eye and if problems arise they will issue him with whatever he needs .Just be aware that all problems are made aware of at his weekly check ups.Also the RT department will send him to see doctors if they are concerned also.

During weekends further down the line make sure you are up to speed with looking out for infection signs due to Chemo as shivering and coldness are a sure sign and need anti biotics straight away .I eventually invested in one of thoose fancy thermometers as Paul was prone to infection and in the the middle of treatment suffered from cold hands and feet due to one of his chemos, he had peripheral neuralgia for a long while but thankfully did heal .he still suffers from cold feet though.

Not trying to scaremonger here but you seem to be a girl who likes to be organised .I also stopped visitors who had sniffly colds etc .

All said and done he will be carefully looked after and get through this, just takes patience and good care .Everyone here on the forum has had a different reaction to combined chemo and RT and a good few have have come through very well without too many problems .

For myself I wish had found this site earlier and if so would have known the consequences and talked Paul into the peg tube way before it became a crisis for him .

Were all here for you .

Bell and Paul

Hi Bell,

Have also read your posts - what a nightmare that must have been for you to travel to London but good you went to the Marsden. A friend of mine was treated there a while ago and my husband's cousin worked as a specialist nurse there for years. Paul is being treated at Barts, another centre of Excellence and a teaching hospital so his treatment will be good. You have been really helpful, really good to know what to look out for. As I said, his treatment finishes christmas eve so will be great if we can plain sail all the way till then. Usually pack at least a week before I ever go away, thought I only had one little foyble but think I now have another.

L o L

Joan x

Glad to hear everything is moving for Paul Joan. Thinking of him and stay strong

Love Chloex

Hi! Joan,
Great to hear things are running smoothly and Paul & Sandra are clued up, Make sure that Paul starts putting sorbelene cream on the site that will be zapped (really slaver it on), by starting early there is a good chance that Paul will have only minimul scarring and blistering. I started a couple of weeks early and apart from a bit of redness and a blister on mi right ear lobe I was clear SO good tip.
Pass on my best wishes to Paul & Sandra and you take care of yourself as well.
TREV

Good to hear things are getting done now Joan. The quicker it starts the quicker it finishes and at least it will be finished on xmas eve.
I had to go through xmas '97 knowing my RT was going to start Jan 6th and it wasn't a happy new year. Didn't have access to the site then so didn't really know what RT was all about for sure. It turned out that my over active imagination had made it out to be much worse than it actually was, hopefully it will be the same for Paul. Hagg.

Hi everyone,

Thanks for support, have passed your good wishes to Paul and Sandra and they are very much appreciated. Paul went back to Barts on Friday and had all the measurements done and the mask checked and MRI scan. Touch and go about the scan as he had taken his medication for diabetis. Wish these hospitals would sort their notes out. Suggested he take a red felt tip next time and ask a nurse to write it on the outside of his notes as it keeps getting missed. He was the one who mentioned it so the radiographers had to phone oncolgist who said that as he is good shape they could go ahead and inject him with whatever it is they use. All done now till peg fitting.

Also - accosted abulance driver who was picking a patient and asked him about transport. He told us all about ambulance service and wrote down the taxi service number which (Paul on the forum) had mentioned when he went to and fro to UCH. I wonder why at the hospital, they don't give out information about all these bits and pieces. Seems you have to get yourself clued up or have other people on here had other experiences. Interested to know?

Hi Choex, on countdown now for Wednesday eh.

L o L

Joan xx