Extremely Helpful Group

He is doing amazingly well to still be eating all those things! I am sure this determination and good nutrition will help him to a quick recovery afterwards.

Hi BrandyGirl

i can’t believe you have to go to your GP for treatment pain relief. 

Have you a head and neck nurse support team? 

I saw mine every week together with my oncologist’s registrar.

The RT staff are also available everyday of course and you should be able to fill a prescription at the hospital pharmacy that day 

You should ask 

morphine was my total friend by the time I was on week 4 

There is no need to suffer

Good luck

Gosh - aren't hospitals different! We didn't have anything like that level of support. Husband's radiotherapy was in a different hospital (and trust and county) from his surgical treatment and clinics, so throughout the radiotherapy it was impossible for him to have any sessions with his primary care team - the whole day was taken up with travelling to the hospital where the RT was given, waiting for it, having it, and travelling home...  So for us, too, the GP and the district nurse team were the main/only recourse if there were any issues. Appointments at the original hospital started again after the end of radiotherapy.

As others have said , he’s doing well! My husband is 6 days post treatment, I’m sure you have already clocked these but one of the things my husband finds helpful is the xyliomelts for over night, can’t get on prescription but he says worth the money! Also finds the humidifier helpful!

good luck with the rest of the journey!

L

Hi this is Hazel  I am almost a year post radiotherapy for tonsil cancer with affected lymph nodes ,take it from me your hubby is doing well if he is managing to eat all that ! I had a nasal feeding tube in week 4 ! I have a blog id you haven’t seen it www.radioactiveraz.wordpress.com where I give a few tips and a record of my experiences.

ask your radiotherapy tram to help with pain relief insaw my oncologist every week throughout treatment and a nurse twice a week plus if I had any issues the radiotherapy team would arrange for me to see a nurse. My G P wasn’t much use at this stage as they have a lot of general knowledge but not the specifics. Dry mouth unfortunately is the most common side effect I am still suffering but at night time xymelts from the mouth ulcer  company online really help. Does your hubby have a humidifier for the bedroom again invaluable also a nebuliser loaned from the hospital helps 

good luck Hazel x

Thanks Hazel.  Hubby seeing dtr once a week and has paid medication (paracetamol, liquid of course) and antacid with oxycetacaine.  Nothing for dry mouth.  She even looked in his mouth and throat this week and said she could see how sore it was, then told him to go to GP for his low blood pressure.  It was just pure coincidence that the PEG Nurse was coming to show us how to rotate the feeding tube (which has been in five weeks now) and during conversation we told her about the dry mouth etc.  She gave us the names of a couple of products and said ask GP if they would prescribe which she did with no fuss.  Might ask hospital Dtr about nebuliser for home use next week.  I hope you dont mind me asking what type of humidifier did you use.  I had thought about the aroma stream that we have but its a bit noisy for overnight use.

I have order the xylimelts and hopefully here by this Saturday - hadnt heard of them until today.

Glad to hear you are keeping well.  It is great to hear the success stories as it gives hope for the future after treatment ends.  

Hi Alichapp

Yes hospitals appear to be very different.  Like you the treatment is at a dedicated cancer centre, at another hospital trust and the 'catchment' area is huge.  Hubby also has to use patient transport to get to and from and sometimes he is picked up over 2 hours before his treatment time and has to wait after treatment for the transport home.  Our GPs have been excellent and he has had 5 star assistance from them.  We have also just got two appointments at the original hospital for after his treatment ends in two weeks time so they will pick up his ongoing care.  Reassuring to know that they are on the ball with that.

Hope you are keeping well.

That sounds exactly like our situation - husband also had to use patient transport and it was very much a lottery when it would turn up relative to the appointments at the cancer centre in Gloucester. 

We are both doing well - husband is now nearly 4 years post-treatment and down to a 6 monthly check-up regime. Back at work full time within 6 months of starting treatment. All the very best for you and hope it goes well for you both. 

Cheers xx

Hi Thank you one if the reason she I did my blog and still appear on the forums is to pass on any help I can No one was more shocked than me at my diagnosis and I set about finding things Fromm day 1 my oncologist has been marvellous throughout and he’s using my blog as a teaching tool like his manta says he knows the science and we know our own bodies .nothing  beats personal experiences ok we are all different and experience different things ,

the humidifier came from Amazon a Cool mist one was the name cost approximately £25 was large enough to do the bedroom but nit noisy at all onky used plain tap water nomoils or anything as throat linings were delicate enough in fact still are pretty delicate .

The xyimelts I don’t use a full one hubby breaks them in half using his nails we tried all waysbti break them including using a dremmel cutting tool !!!! I find one creates too much gunk but half of ine I Niw pop in when I wake up dry as my salivating is slowly returning when I go to bed mouth is fairly moist  but about 3/4 hours n few sips of water I pop half in and then get another 4 hours 

ask any questions don’t be afraid to get more pain relief if he needs it now s not the time to be brave !

Hazel x