I have now had 12 sessions of Radiotherapy and my toungue is badly blistered and sore.So much so I have now been prescribed liquid morphine to relieve the pain.

On day 9 I started takin Cocodamol dissolvable in water and also Asprin dissolvable in Lemon Mucilage.

Am I experiencing the normal progression of the side effects of Radiotherapy or is there a possibilty that I may be having an allergic reaction to the cocodamol or Mucilage.

Hi Robert,
I don't know about the blisters, as I don't remember having blisters, but the pain is fairly standard for Radiotherapy to the mouth/neck. I'm surprised that this was not explained to you before the treatment started, as I was warned that the treatment was painful, but was told that they would give me morphine to alleviate the pain.
I did notice that the NHS seems to operate a policy of only divulging information in small amounts, as and when you need it, rather than giving you the whole picture up front. From reading other peoples stories, it would appear that I was not alone in this experince.
Keep taking the medicine regularly. One of those tablet organisers, that you use to put in the tablets you take at breakfast, lunch, and dinner time is useful, although you cannot use it for the liquid medicines, as it allowqs you to check that you have taken your medication, and haven't taken too much. It's very easy to get confused once you start taking the morphine.
Try and maintain an oral hygeine routine, and use the recommended cream on your skin to protect it. You may find a babys toothbrush easier and gentler to use.

Robert, Check that you don't have thrush as this is very sore. I think that sometimes its overlooked as a problem as it is so common with people like us. I found that by the second week of radiotherapy my mouth was so sore that I just used my PEG all the time.Unfotunately you will be sore for a few weeks after your therapy finishes. You should be given some special cream after you have finished your treatment to help with the exterior burns to your skin.
Hope this helps

Anne

Robert......if the pain gets really bad then ask for cocaine mouthwash which is prescribed in small amounts (for obvious reasons). This is the most effective painkiller for your mouth that you will find.

Cheers guys

Only to say that the pain is getting worse by the day.But the drugs to combat this get better also .I am now off work and my life at the moment is governed by the routine of treatment and measures to cope with the side effects.

My oncologist said that he was suprised at my mouth and tongue reacting so early in the treatment but only another 17 days to go

He is also reluctant to attach a peg as my throat needs to remain active.He stated that it could scab up if I do not use it all which will make the recovery longer

Eating is still a problem but I am still knocking back the 40 sips .Little or no solids are being taken though.

Robert,

So long as you're taking the fortisips you'll be getting all the nutrition you need. It's all about making sure that the body has enough building blocks to rebuild the tissue destroyed by the radiation.
I learnt to cook the perfect boiled egg during my radiotherapy, I also found that the tubes of fromage frais were easy to eat, and I ate a lot of noodles. Be careful though, if you're taking strong painkillers its easy to get careless, and I left the gas ring on on a couple of occasions. Once I then put a bag of shopping on top, and if my husband hadn't reacted quickly to me saying 'um... errr... ooh' and jumping up and down, I probably would have burnt the house down. (Somehow the morphine affected my brain, and shouting FIRE loudly was something I just didn't think of).

Look after yourself well, and don't be afraid to ask for any help you need, from the hospital staff, or family and friends. This is a very tough time, but hopefully it will all be worth it in the end. The forum is here for support if you need to let of any steam.

Good Luck

Jenni

What a relief, reading your forum Robert it has helped me, I’ve just completed 15 session of RAD and my mouth is in bits. Talk about Sore’s on the tongue, Lip’s and edge of my defect. I’m almost crying with the pain. This is by far the worst pain I have been in since being told I have a tumour this bet’s everything!! Reading the replies I shall be asking for some really strong pain killers I just hope it doesn’t get worse.
Rolf

Rolf, please make sure you drink LOADS of water it really does help with the recovery and the pain.
Cheers Anne

Rolf,

If you're not sure if you will make it through the night then call out your own GP and show him this discussion. He can prescribe you the Oramorph, but I'm not sure if he can get you any before tommorrow morning.

When you go to the hospital, make sure that they know you want to see the registrar. I had a late appointment, and the registrar had gone to a meeting, so I couldn't see him til the next day. The following day I asked to see him before my radiotherapy, but he wasn't available. By the time I got to see him the hospital pharmacy had shut, so I couldn't get the Oramorph until the following morning, when my husband drove down specially to get it for me. So be firm and get your painkillers, you will need them.

Do be careful though when you start taking the stronger painkillers, and assess whether you should drive yourself to the hospital and have help with household chores. As I said above I nearly burnt the house down.

Many thanks for your advice caught the consult scurrying along the corridor today, and managed to get some stuff off him: Morphine Sulphate (Zomorph) and Lidocaine and Hydrocortisone mouthwash. Got my fingers crossed this will ease the pain.
Thanks agian
Rolf

Hi Rolf,
Glad you got the medication you need. Most of the stuff they give us works pretty quickly so you'll know whewther it's strong enough by tommorrow. if you're still having problems tommorrow then nab the consultant again. Once you let them know you've got pain they're quite good at handing out the remedies. There is definitely no need to suffer bravely, as it won't make any difference to your treatment or recovery. I was lucky that I was warned by the macmillan nurse before my treatment started that it would probably get really painful, and that I would be prescribed morphine for the pain. So at least it wasn't a surprise, and I knew that I could get medication to help.

Morphine is really strong stuff though, so now is the time to make sure that you keep careful track of all the medications you are taking.

Rolf

As Jenni says take what medication is available to dull the pain.Its a great help during recovery and it does take a lot of mental strain off you to ensure you can relax.

As for me I have suffered a wee bit also but it has now been two and a weeks since my radiotherapy finsihed and my pain has diminished slightly but not enough to let me off the morphine

I am now encountering another problem with a sensation of congestion and blockage at the top of my throat.The Doc has prescribed steriods but I am not too sure if they are making it worse or not

Currently I am taking

Morphine
Steriods
Asprin with Lemon mucilage to cleanse the mouth

Sometimes I think they are not mixing very well and causing me problems

Anyway what I am saying is it does get better over time and be patient and brave
all the best

Robert

Robert,

A lot of people have suffered from mucositis. It might be worth looking at postings on this forum about this to see if this is what the congestion you're suffering is.

Hello Robert

The congestion and blockage sensation could be the tenacious phlegm / stringy saliva that forms as the saliva glands affected by the irradiation begin to shut down heading towards 'dry mouth contry'. If so, rinsing/gargling with saline helps clear it; you could try Mucodyne (see link given) too.

Best wishes
Vinod