Nasopharyngeal Cancer sucks

Superb summary.  When we embarked on the journey, by the look on the face of the nurse giving the first infusion we knew things would be tough but neither of us realised quite how tough the side effects of the treatment were to be.  My partner is now six years post treatment.   He’s generally very healthy (touch wood).  He is prone to mouth ulcers, occasional sinus infections and blocked ears particularly in spring and summer (pollen), tinnitus and hearing loss (but manageable after seeing an audiologist- I can give you details if you need them) and finds some foods more difficult to eat than others.  But we’re at six years, so our fingers are crossed.   Thanks for so eloquently sharing your experience.  Yours is the first I’ve read that coveys the brutal reality of the treatment but gives hope and inspiration that it will eventually come to an end.  

Hi Carolyn. It’s awful to hear how your son is suffering. I’m so sorry he is not getting support from the hospital team. If the dentist thinks there may be a dental problem, you should ask that either the dentist or your Head & Nurse nurse or team refer him to the Oral & Maxillofacial Team at your hospital. I work in such a department and we receive requests every now and then from oncology teams with patients who have dental problems during or soon after chemo or radio. On the pain front - can you talk to your GP about a morphine syringe pump? I had one from the last week of treatment for 3 weeks for severe pain and it was so much better than zomorph and very frequent oramorph. It’s heart breaking to think what your son, and you, are going through. This won’t last, but you need help with his pain now. Petition the GP, the Team - ask if he can have advice from the Palliative Care Pain team(I had this even though I wasn’t dying!). I really hope you get some support.

Hilary

Hi Hikary thank you for your reply.  Took my son to the dentist last week and they say the ukcers near his wisdom teeth are not clearing up because they are rubbing on the teeth. They said cannot take X-rays becaus he has had radiotherapy.  They said they were going to refer him to the oral and maxillo facial team.  They gave him some lidocaine spray on prescription, but no chemist had it, but eventually I got it ordered.

No point taking him to GP,  the last time I took him the GP did not even look up and make eye contact with him, so rude, obviously lost his vocation in the job.

Had an apt yesterday at the hospital and a dentist from the oral team looked in his mouth and said he needs to buy a mouth guard.  So we go and buy one but he cannot get it in as his mouth is so painful.  When I ask them if they can take the wisdom teeth out so that the ukcers can clear up they said they do not want to do that. So am trying to get an appt at dentist today to have a mouth guard made for him.  More money, this cancer has a lot to answer for.

As for the pain relief he was on oramorph and patches but made him drowsy.  Was just told all the time to up the morphine again and again.  It is not good enough am very disappointed with the treatment my son has received, they have no compassion etc.

Firstly Carolyn, I have no idea where your son was treated, the NHS with it's appalling funding shortages can sometimes be a postcode lottery, through no fault of the dedicated teams who work in all areas of care.

The mouth ulcer issue is, and can be, a long term effect of the targeted radiation therapy, along with the fact that the saliva glands are inevitably damaged by the treatment itself.

I, like your son and many thousands of other's, were given every type of pain killer known, I tried everything and anything at times to stop the pain, as this increased, like your son I asked at every revue meeting what could be done to not only help the pain, but the intense nausea i was experiencing, and I truly do not exaggerate when i say i hugged the toilet bowel for hours sometimes, knelt or sitting on the floor with a blanket over me to stop the shivers and shakes, I would dry heave for what seemed like an eternity, this in itself only adding to the pain i was already feeling, Oramorph made me so incredibly nauseous, Co Codomol in the dose i needed was like being as drunk as is possible with the room spinning ...and then some ! ........ high doses of Morphiine left me constipated and delirious ....BUT as you quite rightly point out, you will go to any lengths to dull the pain, however, the hospital and team can only do so much, as hard as this is to say, in the end it is you the patient that must find the way forward as best you can with the medication available, again I must say, your son is in the eye of the storm right now (or has been) he will need all the resilience he can muster, as helpless as you feel, try only to utter positive words, because at this stage anything negative just amplifies those feelings of hopelessness even more.

I always held a place inside of me that fought like a Trojan as far as my " I'M STRONGER THAN THE CANCER" belief went, even though i knew in my mind that the reality could be very different, I never let that thought get the better of me, and i clung to each and every positive word and thought i could, even when the dark times came, laying in my bed at 4.00am with the lights on and windows thrown open, unable to breathe properly, gasping on occasion, my mouth and neck screaming with pain, medicated up to the eyeballs, my partner long since banished to the spare room for both our sanity, I still found that resolve to calm myself down, pull together what little resources i had, and tell myself over and over again, I WILL see my Son & Daughter get married, I WILL climb mountains again, I WILL feel the warmth of the sun and the joy of rain on my skin, and nothing, not even this Cancer will stop that.All cheesy stuff i know, but for me it totally got me through when the chips felt as down as they could possibly be.

What i suppose I'm trying to say to you is this ....... Don't blame, or feel as if nobody care's about your son's illness and pain, they really do, but there is only so much they can do no matter how much medication is available, and yes, I agree at times it can seem mechanical and uncaring in it's approach, but just because everything you try seems not to work that does not mean people are not trying to be helpful, it's just such a totally awful treatment regime with a recovery period that can seem never to end .....but it does, and I and many other's are proof of that.

Belief Carolyn ......you and your son must have that belief, even when it's at it's worst and both of you are in floods of tears ( which we were on many occasions ) you must somehow find that inner strength to believe.

Apologies if I've rambled on (which I have) .....stay strong, and know that better times really are ahead .........

Best wishes to you both

Marcus.

Hi I no it’s a long time ago but this the first time we can relate to the things you are saying mucus’s is horrendous omg it’s like slime and feel no one understands my hubby it’s horrible seeing hicry with frustration sleep deprived because he feels like he’s chocking on this slime any help would be amazing finshed cemo and rang the bell just a waiting game

Yes, it seems like quite a while ago, but in fact only just over a year since i really started to feel better and more of my old self again.

The sticky mucus period was horrendous in every way, at times it was like chandeliers hanging from my mouth, and i do mean chandeliers ! ..... special effects in a science fiction film springs to mind, ohhh it was awful, but you know that, once i got over the grossness of it, i just used to battle through the best i could, it does subside, but it was horrible to experience and deal with, and for those that have never had to (thank goodness) it can hard to explain.

I would rinse my mouth constantly, and i stopped drinking my "Ensure" protein bottles or feeding them down my P.E.G. as it only made it worse, much worse ! ...... the fact i lost even more weight and my nutritionist at the hospital was not at all pleased bothered me not one bit, as long as the dreaded sticky, glue like spittle and nausea stopped, that's all i wanted during that period.

It will pass ..... really it will, but oh my ....  it is a long and arduous journey i'm afraid, and all you can do is find your own way of coping, just remember that i too stood in the shower or hugged the loo with tears of frustration streaming down my cheeks, it's okay to feel sorry for yourself on occasions, I was scared, I was facing the unknown, and i was unsure of what was coming next, all of it a new and at times terrifying prospect, from diagnosis, to treatment, to recovery ........ but in the end you get through and come out the other side ! ..... you really really do. 

Stay strong, stay resilient, have total faith in yourself.

All the very best to you and your family ......

Marcus

June 2019.  

Thank you he’s been so upset cried we are only a week in from finishing treatment and being home it’s def a journey ah

Great to hear from you Marcus and sharing your experiences, hope all is well my friend, all the very best.

                                                                            Chris . 

Hibdee o this is Hazel 9 month post radiotherapy for tonsil cancer. 

Intoonhad the dreaded mucus snots do yiu have a humidifier for bedroom amazon apps £25 and a nebuliser hospitals should loan you one. The Ensure drinks I used to dilute the with bottles watee made them easie to drink and gave extra hydration.

i have a blog detailing more info www.radioactiveraz.wordpress.com

i am proof there’s is light at the end if the long tunnel .so far had 3 trips to Spain and just returned from a family holiday to Wales it’s nit easy still now have dry mouth but I am eating most things meat is  difficult but at your hubbys stage i never thought I would eat solids again. 

Like people say it’s ok ti cry  and rant these next few weeks or months aren’t easy but baby steps somedays one forward and 2 back.

any questions please ask  I have also a friend who has nasopharyngeal cancer and he too got the all clear sameness time as me lHazel x

Hi

i used to massage my sons hands and feet to try and get him to relax a little.  I really feel for you and know how you feel.  I felt totally useless when my son was going through it all.  

It is a horrendous time, it will get a little better as the days go.

Take care