Time for advice again please! I have been slavishly covering Roberts neck (and ears) in the aqueous cream and radiance skin gel which has worked great. The skin on his face and neck really does look quite lovely. However, this week he has had 5 additional more intense sessions of radiotherapy. These sessions have caused the most awful burns to his collar bone area. The doctor gave us some geliperm hydrogel wound dressing to apply to the area. However, this just makes it look worse as it is now constantly wet and oozing awful green/yellow stuff. He's in such pain he can't move his head. Is the idea to keep it wet as it's a burn? Will it heal if it's constantly wet? He was taking 5ml of Oromorph every 4 hrs but he's now taking 20ml. I don't know if he's overdosing on it or not. I rang NHS Direct for advice but they couldn't answer my queries as they were very busy dealing with calls from people in London panicking regarding the radiation poisoning of the Russian!

Hi Lorraine,

I can tell you are very worried. Robert is really lucky to have you caring for him. I've got records of the Oramorph I was taking from about one week after the radiotherapy finished. I was taking 15 ml every 3-4 hours then, and I'm pretty sure that I was taking more than that the week before. I was also taking paracetomol and ibubprofen at the maximum allowable levels. My Doctor wasn't really worried about the amount of Oramorph I was taking, and seemed to be happy for me to take as much as I needed to dull the pain. I know my Husband and my Sister were worried that I might overdose, and that I might get addicted, so I tried to restrict how much I took, but my husband heard me crying with pain in the middle of the night, and changed his mind. I was really suggestible whilst I was taking the morphine, so I did what my husband told me. If Robert is the same he will need you to help ensure that the medical staff really understand the issues he has at the moment. I wouldn't worry about the amount of Oramorph that Robert is taking. If you want to then keep a record of it, and check with your doctor later. I also wouldn't bother with NHS Direct, I don't think its really meant to cover people in the middle of cancer treatment. If you are worried then phone your Doctors surgery, as they will have some sort of weekend or overnight cover, or phone the oncology department at the hospital, as they may have a doctor on call.

Sorry I can't offer any help with regards to his burns. I had a small area behind my ear that I obviously neglected, and it felt as if the skin just fell off. It was horrible! However the doctor didn't think it was infected, so I didn't need antibiotics, and it did heal OK. If Robert's wound is oozing, then I would call out your Doctor as he may need anti-biotics, and he probably won't be strong enough to fight of the infection on his own.

I'm really sorry that you are both having such a hard time. The treatment is really hard to cope with, but you will both get through this.
Has Robert finished his Radiotherapy yet? I found the few weeks after were the hardest, partly because without the daily appointments at the hospital a small problem could escalate to a large one if I didn't get treatment quickly enough.

Anyway my experience is that you should contact your Doctor. My Doctors Surgery seemed to have me on fast-track over this period, and I always got a doctors appointment on the day that I phoned, things have gone back to normal now though and I have to wait over a week!

Dear Lorraine, I,m sorry to hear Robert is having such a hard time. Please dont worry about giving him the Oramorph, he really needs it. When he goes in for his Radiotherapy (on Monday I presume) ask to speak to his Oncologist or Oncologists nurse, He/she will adjust the medication so that he is not suffering. Brian was taking 30mgms Morphia twice a day eventually with Oramorph for "Breakthrough" pain.
Re his neck: Your GP should have a District Nurse on call. If you dont know who she is, your local general hospital should be able to tell you & give the phone number. She/he will be able to tell you if the moisture from the dressing is normal or infection & take things from there.Please phone now, there will be a nurse on duty
As Jenni has said you could also phone the Oncologist on call at the Oncology unit.
Its horrible coping with this at weekends, you really feel you are on your own.I found the Dr. at NHS 24 was very sympathetic but they were not geared up for our problems.
Lots of good wishes to both of you, you will get through this. Let us know how you get on. Fran

Hello Lorraine
So sorry to hear Robert is suffering so much. suffer is the correct word. It's exceptionally painful. The only comfort Ican offer is that it is normal for the course. I think though it is frightening when it happens. You do keep wondering if it is normal.

Just to add to the typical dosage during the weeping burn pain period. Like the others I found morphine a blessing for pain relief.

I took morphine slow release tablets night and morning (can't find the dosage right now as husband sleeping in room where the old tablets might still be), plus 20 ml breakthrough Oramorph every 4 hours, plus 8 a day pharmacy higher dose Solpadol (each soluble tablet has paracetamol with extra codeine of 30 mg compared to 8mg over the counter), plus 600mg Ibuprofen tablets 3 times a day, plus Omerparozole equivalent (I think then it was lanzaparozole) for gastric reflux, plus a nausea drug and a laxative. This does all help make you sleepy which is just as well when it's painful.
My husband queried the volume of breakthrough oramorph I was taking with the local chemist who said if the pain is bad the body accepts more and more.

District nurses organised a whole box of kit for me with all sorts of things like rubber gloves, dressings, tape etc. They cleaned the burns with saline solution, applied the hydrogel and dressed it with special burn dressings each morning about 10 or 11 am and then again at about 7 or 8 pm. I also did this same procedure in the middle of the night about 2 am as I always woke at the time the solpadol and morphine tablet wore off.

I alternated the Solpadol with the oramorph. I kept very detailed records and laid out the tablets for the day and the dressing change ready for the middle of the night.

Get your husband to take the oramorph just about 5 to 15 minutes before changing the dressing as it helps if the wounds get knocked as you do it that the morphine is working freshly. The saline solution is used to squirt flush away debris (green gunge)and is given on prescription or you could if desperate make your own as I did once or twice. The gel and special burn dressing pads are intended to keep moisture in the burn area and help prevent scarring. The only time you must not use the gel is if the area gets infected. So it's crucial to keep hands very clean and from touching it over much. I used savlon spray solution on my hands whenever I went to touch myself in the day or to unwrap the dressing if I was in the bed and lacking enregy to get up and go wash hands.

It's a tough time and you want to tear out your hair with not knowing what to do with yourself. He will feel lousy. In fact if he feels like I did he will feel as if it is the end.

I actually had better response from district nurses than at the hospital. I think the dis nurses were more shocked by what they saw. At the hospital they were good, but they are very used to seeing it and I think - forgive me any nurses reading this - I think they do become a bit blase.

One thing which may help - I was given antibiotics for pneumonia as I had very bad bronchitis after the radiotherapy ended. I think the antibiotic helped the skin heal just a bit faster.

Have you seen my photos on my website? I could email you some if you want. The green gunge is normal, but I agree quite disgusting. Your husband will feel like his flesh has gone off. The photos on my website are actually not as bad as the originals as the ones on site are compressed so a bit blurred!

Hi Lorraine
I sypathise with your hubby and his burns. I too had terrible burns to the right side of my neck from the top of my jaw to the bottom of my neck.
I have to say if it wasn't for Pauline's web page I would have freaked out, her photos were a great help to me during my treatment. I used her diary as a reference then I knew what I was going through was expected.
The green gunge oozing was quite disturbing and my skin peeling off a worry. I had my dressings changed every day at the hospital while going through radiotherapy and then the district nurse came in daily. I was also giving my own pack for changing dressings.
The painkillers were very powerful....but we need it, I was a walking zombie, but the pain doesn't have kick in when they start to wear off.
Take everything they give you, and be aware that the burns do heal, It is hard to believe looking at my neck now that there is no mark left from them.

Best wishes
Tracey

I think we're asll agreed that Pauline's Web pages were really useful. I found them before my treatment and showed them to my husband. It really helped us to know what to expect. Thanks Pauline for sharing some of your worst times with us. It's been really helpful.

Lorraine do check out Paulines Story on the home page of this site. I'm sure it will help to reassure you.

You can really help Robert at the moment by making sure that he gets the best possible medical care. Whilst he's taking lots of morphine he may not be at his most forceful. I found that rather than making a fuss and getting things fixed, I would quite happily go away and just take more morphine to kill the pain. Combine this with the dramatic loss of self confidence that some of us seem to get when we go through the cancer treatment, and he may be at his least assertive at the moment.

Thankyou all so much for the advice. I took Robert to A&E yesterday where we had to wait 3 hours to see a Doctor. The Doctor was very reluctant to prescribe anything or put anything on the burns in case it interferred with Robert's radiotherapy treatment. So after being told that indeed his neck was infected we just came back home. We've had an awful night with little sleep as the back of Robert's throat is so swollen and full of mucus he was finding it difficult to breathe in his sleep and kept waking up choking. I rang the Radiotherapy dept first thing this morning and they told us to come up straightaway. They gave Robert his treatment (only 2 more to go) and he saw the Doctor. They've prescribed him antibiotics for the infection on his neck (no dressings) and Morphine Sulphate 30mg for the pain. They seemed to think that the large quantities of liquid morphine he was taking was causing the breathing difficulties, so we'll just have to wait and see how he gets on with the tablets. They wanted to admit him to try and stabilise the pain and to get some fluids into him but he was having none of it, he just wants to be at home. Nice to hear from the Scottish contingency as Robert is from Glasgow. Thanks again.

Dear Lorraine, Im so glad that you & Robert are finally getting the treament he is needing. The Morphine Sulphate will give him much needed relief. Your experience echoes mine of 2yrs ago when everything seemed to go wrong at the weekends.
Do you have an understanding GP? Let them know whats happening to you both. Ours was a gem & although Brian was the first patient in their practice with Tonsil cancer, did her utmost to support us both.
I hope you have an easier night tonight. The drugs will make him sleepy so when he sleeps,you try to rest also. The house work can wait!
I,ll be thinking of you.

Lorraine,

I can't believe that A&E didn't give Robert any treatment, when he was obviously suffering so much. Thank goodness he's got something for the pain, and the infection now.

As Fran says, you must both be exhausted, so rest as much as you can. Also it might be worth trying out something that was suggested to me by the midwives after I had my son. Put a note on the door explaining why you don't want any callers at the moment. It's really annoying if you get market research people waking you up.

I'll be thinking of you, and I hope that everything goes well from now on. It sounds as if you are in the toughest period now. Don't forget to look after yourself as well as Robert.

As Fran says you will need to let your GP know what is going on. He will have had letters from the hospital, but these are not instantaneous, so he won't know the up-to-date situation. After Robert has completedc his Radiotherapy you will need to go directly to the doctor for his medication, as you won't be going to the hospital every day. The surgery staff soon learn your name, and will arrange for a doctor to see Robert urgently. The staff at my surgery now greet me by name when I go in.

I agree with the others. Make the time to see the GP now so he can see and measure your husband's progress. It never hurts to get an anothe ropiion and as others say it's the GP that picks up the pieces.

FWIW I slep sleeping sitting propped up on several pillows for about 2 months as you do when you have this wheeze and choking happening when you try to lie down flatter. This happens especially during latter stages and immediately in the weeks after finishing treatment.

Do hope Robert and you get some rest soon. But the pain is only something that can be understood when it happens. Robert will want to tear his hair out and weep with the frustration of pain and not being able to scratch at it. And you will be suffering watching him suffer.

Thank you ladies for comments on my web diary photos. I had read Barry's (of acor listserv head and neck) early diary pages from his hn cancer experience and it helped me no end to know the progression of treatment stages/discomfort. But his pictures were limited and I needed to know just what it looked like - you tend to mainly see a pic of someone just under the accelerator at day 1.
I think women are more vain and just want to know what might happen to the skin.
It was hard to sit up for husband to take those pics. It also would make me wash my hair and all that just helps make you feel better and in control more. I also tried to wear make up to eyes and lips. It made me feel better even if it looked grim really.
I think peope write little about the green scabby gunge as it is horrid. But it is important to know it may happen.

Sleeping propped up does seem to be the key. My husband pointed out that I seemed to sleep better during the day on the settee, than I did at night. I also wasn't as hoarse when I woke up. In the end I slept on the settee in the lounge for about two months, it was just where I was most comfortable.

Another point Lorraine. Please ban anybody with a cold or cough from the house over the next couple of months. I can still remember the first time I sneezed after the radiotherapy. You really wouldn't believe how strange and painful it felt. I used to pinch my nose when I sneezed, but I can't do that anymore.

Well they admitted Robert into hospital on Tuesday after his Oncologist came to have a look at him in the Radiotherapy dept. He was very worried about his neck infection as it has started to spread up into his face. They've put him on a drip to get some fluids into him and he's also having antibiotics and morphine intra venously. The pain is still very bad in his throat and he can't even sip water now. Unfortunately as he was admitted as an emergency he's on a surgical ward and I don't think the nurses are used to dealing with Roberts condition. Yesterday they brought him a roast dinner to eat! I have tried to explain about the pain and the fact that he can't eat ANYTHING but they still insist on giving him a menu to fill out. Also last night I caught one of the nurses trying to get him to drink some lemon juice! I explained that she might aswell give him a drink of acid. Hopefully he won't be in there too long and can come back home where I can look after him. Actually I'm also a bit concerned as the nurses don't wash their hands when they 'tend' to Robert and are injecting him without wearing any gloves. Am I just being completely paranoid now?

Lorraine,

You are not at all paranoid, surely they can see that in his current state that Robert will find it really difficult to fight off infections. If I was you I would spend as much time as possible at the hospital, and expain Roberts problems to the nurses. Also talk to his doctor about the problems he is having. I can't imagine anyone trying to force lemon juice down my throat at that time! Can you ask that they put up a nil by mouth sign, the sort they use before operations, and that might prevent some of these problems. Honestly why do the nurses think he's being given morphine.

I'm sure you have asked if they can transfer him to an oncology ward, as I think the nurses there are more aware of the problems that Robert is facing. I'm really sad that things have got so bad for Robert, but he is supposed to be in the place where he will get the best possible care. If that is not the case then please do complain, as Robert is probably not up to it himself at the moment.

Well, no surprise that I've just heard on the news that a nurse and a patient have both died from a new MRSA superbug at the hospital where Robert was admitted. Seems I was right to be paranoid.