Nasopharyngeal Cancer sucks

Feel for you both Carolyn, the feeling of being on your own after constant care is very hard to take and the two weeks post treatment when the cumulative effect of the RT is still happening are the most difficult time for most.

Try to remember though that his life is not ruined forever (and neither is yours), it's in all probability been saved, It's a dark time but it'll get better I promise. If you can't get a GP appointment call his specialist nurse, make some noise because if you don't tell people you're struggling they'll assume you're OK.

Hello Carolyn, i cannot see any doctor or consultant letting your son go through pain as bad as this , have you told them about his issues as im sure they can help reduce the pain using something else .Your son should be under his consultant so its better to contact him or one of his team . I think you need to take a step back from all of this before you become ill , maybe have a word with a councillor or Macmillan nurse to get you some help also . Please do not say he and you have ruined your life , at the moment you are going through a bad patch but in time and with help it will all become good . Take care .

                                                             Chris x

Hi. Took my son back to the oncology dept and all they said was to increase the morphine.  This week is week 5 after treatment and I have tried all that I have been advised to do and nothing is working, pain on tongue, roof of mouth, down the throat.  I am beginning to wonder if the radiotherapy was too strong and it will never get better.  No one cares.

Hi Carolyn, I too suffered with tremendous pain in the last two weeks of my treatment. I was told that I had been given the maximum radiation dose that they could which was obviously the cause. In addition to morphene patches, MST morphine and Oromorph I was given a spray which I believe was Cocaine based and Lidocaine which I had to use very carefully. I was also given access to the Palliative Care Nurse whose job was to control my pain. I was on this high dosage of pain  killer for about two to three months after treatment finished before I could start weaning myself off. They did get my pain under control although it did subdue me and make me very sleepy. Two and a half years down the line I am still on pain relief for the minor residue pain but life is so much better than two years ago. Good luck and I hope your team are able to sort the pain out.

Clive

Hi Carolyn66, have you been back to see the consultant who diagnosed your son rather than the oncologist  also is he eating yet as it could be some types of food causing the reaction . Or maybe as the other post says its just going to take longer to sort out and get the right . Some one should also let the pain management team know about your son as it seemed to have helped in the previous post . On the whole people do care its just finding the right people who deal with pain . Please dont give up hope , keep pestering if you dont get any joy . We care on here but unfortunately we are not professionals . Best wishes .

                                                                                        Chris x

Hi Chris thank you for your reply.  I rang the Consultant Secretary but was told that he had been passed to the ENT Dept and an apt is on 21 August.  He is not eating to painful.  When he was in hospital for a chest infections about 4 weeks ago he saw the pain management team and they said it was out of their league!  Just to take Morphone.  Thank you for your kinds thoughss

Hi Clive thank you for your reply.  Looking at the consultants letters he was given 70gy radiotherapy which is very high.  That's the problem with drugs they make you subdued.  He has an appt on 21 August to see ENT to have q scope put up his nose, which obviously is not nice.

The pain is greater than you can anticipate.   My partner was on oromorph and then was given fentanyl patches when morphine wasn’t enough from about week 5 post radio until week 8 or 9 when we began to wean down the doses. He was also taking paracetamol and iboprofen.   He was constantly sleepy which was maybe not a bad thing. Constipation was a big problem so sachets of Fybogel helped  There were also rinses, and difflam spray and mouthwash which you can get over the counter.  It’s horrible to watch someone is pain that can’t apparently be eased but the pain team at his hospital were very understanding and helpful, and it’s as if constantly pumping drugs into the body.  However, Carolyn, it will pass, but this is probably the most difficult time for you all.  Thinking of you.

Hi Carolyn,

This is really just a follow up on what you have been going through with your son. I too had Nasopharyngeal Cancer this time last year, and had just finished my course of intensive Chemo and Radiation (Sept 2017)

I have written numerous blogs on here outlining my journey ( including the hard to read bits ) and came back today to give a year on follow up for those still going through or in the throws of treatment.

You will of course know this is an "Un-operable" Cancer, and I will never forget my Head Consultant's words when she said " Mr Robbins, because the treatment is combined with both Chemotherapy and Radiation, there is a sustained recovery period, and at times during that recovery period you may well experience symptoms that leads you to believe the Cancer is attacking your mind and body from every angle .... but let me assure you now, that will in fact be the intensity of the treatment and medication, NOT the Cancer itself " 

She, and my whole team were right on every occasion, particularly with respect to what was coming next......

I have detailed the whole trauma from diagnosis, to face mask phobia, to sheer exhaustion and pain, and back again in my various posts on here, but let me say this, It is a very, very, very, difficult time, for both patient and carer, the accumulation of all that Chemo and Radiation Therapy has to exit the body at some time, and when it does, for some of us it is the most testing time we will ever go through in our lives. To tell you I was scrunched up on the floor in our bathroom shower cubicle, unable to breathe properly, mucus pouring from my mouth, unable to get any more Morphine down my P.E.G tube as swallowing ( and even talking sometimes ) was just so painful and impossible, my teeth, my gums, my throat, the radiation burns on the outside and inside my throat almost impossible to bare, I had lost nearly three stone in weight, my partner was at her wit's end, and frequently in tears herself with the enormity of it all........BUT .....You come through it, you really do, and for some people it can be an excruciatingly slow process, almost as if it will never end, but trust me, and all the other good people on here who have given you advice, it doe's ! .....slowly, slower than you would like at times, your son ( and you ) will turn a corner, and there is not one, but many, sometimes he will go days or weeks and everything will be good, only for some recurring pain or ailment to rear it's head again when you least expect it.

I got used to the Cancer treatment saying " Here you go, I haven't finished with you yet " and as I got stronger and healthier, I just kept as positive and resilient attitude as I could, and believe me when I say, you "Will" see improvements, they just take their time in coming ........but they will, and they do.

Here I am writing this to you with the last year and a half just a distant memory, at times I can hardly believe I went through what I did, and overcome it ......

Stay strong Carolyn, but most of all "Stay Positive" not only for your son's sake, but for your's too .......and I know that sounds like hollow advice, but never stop believing that things will change and get better, they will.

I always end by saying there are lot's of great people on here who really do know what you are experiencing, the details may be different, but the worries and anguish for loved one's are always the same, never hesitate to reach out or vent your frustrations, always be someone on here to listen.

Wishing your son and yourself the absolute best for the future.

Marcus.       

Hi Marcus

thank you for your encouraging words.  I have read your blog and brings me to tears and my son is going through the same.  My son is 7 weeks post treatment, his mouth is still full of ukcers, I rang the hospital last week and was told no one could see him until this week.  I have had enough of him being in pain,  all they say is increase the morphine.  It's not good enough.  I took him to the dentist and they say they cannot x Ray him because he had radiotherapy, but they think there is a problem at the back near wisdom teeth as the gums are very swollen etc.  They said he needs urgent referral to the team asap.

He is very down, angry and has fear for his life, he is convinced it has not gone or will come back and he will not s e his children grown up, which I can understand, am trying to stay positive but it is hard.  We are waiting for a date foe PET scan in October, but was told the results may be all fuzzy and may have to be done again.