Nasopharyngeal cancer

• I am now just two weeks post treatment  after 35 radiotherapy sessions and 3 chemotherapy. They said I would still feel the effects of treatment after it finished but would start to feel better around week 2. I lasted 5 days at home but was quite unwell and have been brought back into hospital , now on day 9 with no plans as yet for release. My body reacted really badly to the final radiotherapy sessions and even worse to the last chemo. I felt like it just started to shut down, I had the worst fatigue, everthing smelt repugnant, including me  although I was assured I didn't. I balked and gagged all day long and had consistent nausea  I could not put a thing near my mouth or in my peg after day three of my final session. I am now on a syringe drive that feeds antisickness into my body 24/7 and have been managing ensure through my tube for the past 5 days although on some days including today I have had to have extra antisickness.  Mouth and throat feel thick and clogged so I have a nebuliser after each feed which seems to help break down the thickness. I often cough up thick phlegm. It helps for me to also use Tellodont mouthwash regularly and I have another that numbs my mouth which helps with tablet taking. I wear a polymer bandage around my neck for the burns  which do seem to be healing  OK. I still take everything 1 day at a time, but feel this is the hardest thing I have ever had to go through and really don't think I would do it again.  I was stage three and the aggressive nature of the treatment was for a cure  here's hoping that it has paid off. Keep positive and strong and gather your friends, family and supporters close  don't be afraid to ask for favours. I set up a close family and friends what's app group which I feel has been a life saver. Sometimes others don't know what to fo for the best  I went through a period when no-one  was visiting because people where scared of my vulnerability. This skyrocketed my mental health and isolation, so we put testing in place  befor visits, hand sanitiser and masks in the hallway , windows open and social distancing. I can only hope that one day I will feel normal again but do worry about some of the side effects that may take much longer or never return again x 

Unknown said:

. I can only hope that one day I will feel normal again but do worry about some of the side effects that may take much longer or never return again x 

You will feel better. It might take some time maybe even a year considering how badly the treatment affected you. I realise that a year seems a lifetime away but it does come. Take it a day at a time and Christmas after this one will be a great one to celebrate. 
I can’t understand why clinicians persist in saying we start feeling better two weeks after treatment ends. It’s patently NEVER true. I don’t know anybody who did and I have seen quite a few people come and go through these pages in the last three years. 
I’m chasing three years and apart from a dry mouth and altered taste I’m the same as I ever was physically. Mentally is a different matter but I’m still me. 
Wise words about gathering your loved ones about you. They suffer too albeit in a different way but being together makes a whole of all of you. 
Hang on in there. And best wishes 

Hi Lioness.I too had  35 radiotherapy sessions and 2 out of 3 planned chemo The  2 weeks is quite common unfortunately I know if no one who bounced back after the 2 week period. I too was badly burned on the neck area and the polymer  bandages do work. Sorry to hear you are in hospital and hope you are home shortly.

Life does get better you may not  think so at the minute. I am now 3 years post radiotherapy and have just returned from an extended trip to Spain ,where I’ve cycled 1100 km and walked over 450.

I have been where you are now it’s nit pleasant to say the least. But listen to your body don’t try to push yourself, around week 12 many experience a turning point. If you say cancer will take a year out of  your life, it’s a small price to pay to live-blogged the rest of your life. You’ll get there it’s somedays 2 steps forward and 1 step back. My oncologist aimed for cure which is what I got ,he also said it would be the hardest thing I’ve ever done it was but I’m still here helping others  if I can.

I started  my blog for family and friends to read niw many others have read it.

Hugs Hazel x

Wow, I am feeling a bit scared as have had surgery to remove cancer, but now also have to have chemoradiotherapy to sterilise the area. I have to have my molars removed due to the 'scatter' of radiotherapy and having gingivitus, this is to prevent future problems with bones and teeth. I am going with whatever consultants are advising and like others have said it is a small price to pay for getting my long term life back.

I have to say though the staff that are caring for me are all wonderful people. I have read about cisplatin which is the recommended chemo drug and the side effects are many, not looking forward to it but hope my body can cope. Mentally some days I feel better and able to handle anything life throws at me and other days the opposite but hang in threre as there are many inspirational people on this forum who are living proof that there is light at the end of the tunnel. God bless.

Hi Ashley best advise I can give you is after chemo you’ll be given a tablet pack tske exactly as directed. If the anti sickness meds don’t work tell the team straightaway. We are  all started off on the cheapest anti sickness tablets they may or may not work for you. If they don’t get others.

Your hair may loose body but the cisplatin rarely causes hair loss. I was lucky the chemo didn’t cause me any major issues just make sure you drink or take via peg at least 2 litres of water daily  

The radiotherapy May at the back of your head cause a crescent shape hair loss but it grows back once treatment finishes. If I could do it at 61 you can. It may take a year out if your life but it’s worth it. 
Hazel x

Ashley. Lioness’ experience is rare. Most of us have a pretty unpleasant time but avoid hospitalisation so hold on to that. 

Hi Hazel, Beesuit and Lionness. I had my pre-radiotherapy meeting today. I probably wont start the chemo and radiotherapy till January as need 10 molars extracting which will be over 3 weeks in December then a week to heal before mask is made. This works well for me. The keyworker was very precise and all the items I had listed from your blogs they were already aware off and sent to GP to prescribe. They did make it sound like a walk in the park but o long as I dont go deaf or blind anything else I can cope with. Although my cancer has been surgically removed, as it was an aggresive type this will hopefully make sure any cells that are too small to detect are rid off, feel hopeful again.

I hope Lionness you are feeling better one thing I was advised was to eat smaller portions as needed to keep my energy levels up, this was as my olfactory was removed so have no sense of smell and limited taste. I take several herbal remedies since my diagnosis and I feel they also help support my immune system. Take care all and god bless.

Hi Ashley Thank you for kind comments glad we all helped you. It takes time for everything to get planned as well. Yes smaller portions  will also be the norm for a while when treatment finishes. I found myself in the early days having up to 6 a day smaller plates as well. 
we are all here for you any questions just ask. 
It’s not a walk in the park buts it’s doable listen to your team and they are your first point of contact every day so any issues make them aware.

Hazel 

Bless you Ashley!

Hazels said it all. 
RT is rubbish but doable. 
We are all here for you so just shout when you need a little help. No plea or question is daft and somebody will be along with an answer 

Meanwhile teeth notwithstanding enjoy Christmas. Next Christmas will be wonderful. Xx

Hi all 

after 2 wreks 2 days i am  finally back home. After 4  types of anti sickness on a 24 hour syringe drive. The last one is kind of working. I say kind of as since changing from 24 hour syringe drive to three tablets a day I do wake up feeling quite nauseous, up until the second tablet mid afternoon.

I have to feed  ensures through my peg 4 times a day. Spoke to them today to ask if maybe one more tablet that I could take before bed may leave less time in between and maybe  I would feel a little better.

Although I was so looking forward to getting home  due to isolation and no visitors allowed, which was causing my mental health to suffer  I do feel really anxious.

Although I can't smell much I can smell anything nasty, cooking anything on fat has me gagging and today fried fish had me running. Certain candles or perfumes can do the same, It's really overwhelming.

I tried eating a chip and really fancied it but could only taste fat. Feel like in regards to actually getting back to eating I may have to start the weaning process  as a baby does. It's not just the smell  and taste of things but I am also really struggling with texture  nothing is as it was or how I remembered food which I absolutely loved, now all I feel is anxiety  but would ove to at least have a saucer of  Christmas dinner if I could. Will just have to wait and see.  Stay safe and strong and thanks so much for this platform to allow me to talk xxxx