Nasopharyngeal cancer

VVN said:

GP said I didn’t have enough symptoms

Well done for advocating for yourself. I hope you make a good recovery. 
I diagnosed my own cancer too but I’m a retired vet and knew exactly what I was looking at. Like you my GP wasn’t convinced but as a curtesy to a fellow professional I got that urgent referral. 

Hi there, I’m new to this forum, my husband was diagnosed with  NON HPV tonsil, tongue and lymph node cancer in Dec last year. It was (is?) T4 and was diagnosed quickly due to pain and bleeding. He had 2 lots of chemo (massive doses) at the beginning and the last week of treatment and underwent 6 weeks of radiotherapy.

My husband has had 3 lots of antibiotics before, during and after treatment and was hospitalised 3 weeks in to stabilise the infection and released the day treatment finished. 

All I can say is be prepared for things to get worse before they get better. I think he felt at his worst 6 weeks into recuperation, not helped at all by very bad oral thrush.

He is now 17 weeks into recuperation, managing to eat mushy food and drink more or less normally albeit it slowly,  He has to be careful as he does get nasal regurgitation. He’s been lucky (if you can call it that … ) to retain his ability to taste food and the mucus is much more manageable than it was. He still suffers from a sore tongue, ulcers and sometimes his throat just hurts. 

Is it normal to have these problems 17 weeks into recovery? 

he’s like Dani, definitely a half glass empty guy and now we wait for the PET scan results …. No MRI …. Just a PET scan. 

We’ve been pretty lucky, we’re definitely not in denial …. But we’ve argued very little. We’re unbelievably stressed and very frightened. A decent nights sleep would help but if I get 4 hours I’m lucky. Hubby hasn’t made it back upstairs yet so we’re not keeping each other awake it’s just the anxiety wears you out.

I‘m wishing you all the luck in the world, if you ever need a shoulder to cry on or a rant, obviously you can reach out to the really kind and supportive people on this forum. Or just give me a nudge. I’ve got a spare shoulder.

Best wishes to you both Debbie.

Hello Deb, I’m Nige, I have tongue stage 4 and lymph node cancer. - I was diagnosed in October last year - I completed chemotherapy & radiotherapy on the 10th January - I was hospitalised on yhe 30th December for a week with a chest infection that took 4 doses of antibiotics, increasing in strength as I went on before it cleared.

I can appreciate your anxiety’s, fears, low feeling, absolute bottom of the pit feelings - I had and still have oral thrush (not nice), ulcers across the back of my throat, pain in the throat , continued soreness , a dry mouth which I think has been home to cactus on occasions, on going mucus My taste buds went awol quite quickly into the treatment but are very slowly appearing one by one.

similar to your husband, I have a remarkable wife who has been my rock and inspiration- Ellise has and is amazing - similar to yourselves, we slept down stairs on an arrange of seats as I couldn’t llay flat for a long time and was coughing and bringing up mucus and flem - we stayed close together - it’s been about 2 weeks we’ve been back in a bed .

Sleep was difficult and as you describe, the mind takes you to all sorts of dark deep places -BUT you are together and have each other, that’s massive!

I had my first mri,3 month  followed by doc appt - I as sent for a petct scan after that due to things that showed up in the scan, since then I’ve had another appt with doc, there are signs of cancer cells still - I go for a biopsy op on my throat on 10th June under general anaesthetic, then we’ll see what comes from there.

My rollercoaster journey continues, on here, this forum, I’ve had the help and support of amazing people, the champions (absolute gems), folk who are further into their journeys, some just starting out, but the support, help and strength from everyone is incredible - the sharing of stories and the shoulders to lean on are invaluable.

All here together, we’ll get through this together - stay strong, and positive - sending you well wishes and big hugs of support.

Nige 

Incredible post, Nige.

I'm certain everyone who read it, and particularly those still navigating the trials and obstacles.of the long journey ahead, will draw strength from it.

Wishing all on here my utmost best wishes.

Gill xx 

Hi Nige, thank you so much for responding. My heart goes out to you and your wife, what a dreadful worry for you both.  I am keeping everything crossed that you get a good result from the biopsy.

On a much lighter note, I see we have more than the big C in common … you are obviously a dog lover … as are we. I have 3 Leonbergers, they keep me grounded, make me smile and give me a reason every morning to get up and get on with life, despite whatever else is bringing me down, my dogs constantly make me happy.

Hang in there and thankyou for adding to the support I’ve already had from people on this forum.

It really helps to feel less alone. X

ps if I work out how to add pictures, then I will be the lady with the very big dogs.

Hey Deb, wow, three leonbergets ! Certainly keep you busy and a handful .

The beauty you see on here is Saffy , the cherub isn’t ours, we look after her - we look after dogs, or should I really said that we are blessed to look after the dogs. Saffy is about 26 months, and we’ve looked after her since she was 6 months old - days weeks, no matter just love having her. Saffy has been part of my inspiration, for about 8/9 months  in her first 14 months, Saffy had to spend the time in a cage because of a leg/hip problem - she had two major operations - we have been part of her recovery and rehabilitation; if you saw her now, just amazing her recovery, lightening quick and the most affectionate darling !!

The folk who we look after the dogs fo have been sending me loads of photos and videos of the dogs and a few I have been getting back out with or they’ve come to stay.

As I said Deb, just so lucky to be blessed in looking after some fabulous dogs and doubly so as the owners are just as nice.

There was one  boxer , Fred, he was incredible, - we took him through four bouts of cancer , he beat it every time, I have t shirts with pictures of Fred on  (some of Saffy to) and I wear one on each and every appt - I feel that Fred is watching over me - a bit numpty I guess, but he was so close to us, spending more time with us than his owners - no complaints, we’d have had Freddyboy all the time.

They give us so much and ask for little in return - unconditional !!

must be so good for your husband too

.

stay strong  

Noge

Hi Nige, I have at last managed to change my profile picture. It took me some time … you really wouldn’t believe I worked in IT for 30 years .. lol.

My big boy, sitting beside me is Buck, (Big Buck) he is 7.5 and 75kgs. He went in for cruciate ligament surgery on his left back leg, the day before Jon’s cancer was diagnosed. It was really an emotional week. He’s still recovering, taken a couple of knocks unfortunately when I’ve had to leave them with friends during my hospital trips (hour and 30 mins each way) which means he’s healed as well as he can do. I can’t put him through that again, Leo’s don’t do well under anaesthesia and I’m not prepared to tempt fate again, he’s a happy boy but limps badly. 

The other 2 are Honey (4) and the fluff bunny sitting on the far seat is Teddy (2).

We love them to bits and take them everywhere with us … even to the hospital a few times if we knew it was going to be a quick visit.

Your wife sounds like a real gem. It is so important to have somebody to share your feelings and fears with. It must be awful going through something like this alone. 

As you say, we need to stay strong … I just wish I could sleep  

Debbie

Morning Deb.

Aww, I've just looked at the picture of your trio of absolute beauties!  I bet you both give them wonderful cuddles and they reciprocate in kind?  I wouldn't be able to keep my hands off them, for sure, although they must add a tidy amount to the food bills!  All totally worth it as priceless family members.  Oh, and I always smile when golden girl Saffy appears on Nige's posts - he adores her.

You're not alone in the insomnia department - I finally dozed off after 2 am and up again before 6 am.  Ridiculous, but then again I've never been great at getting a good night's sleep.  Posting in the Awake and up all night thread helps as other night owls frequent there, too.  It helps to know I can go there for a ramble and not annoy (I hope!) others.

All best wishes to yourself, Jon and the super dogs.

Gill xx 

Hiya Gill

Thankyou, we do adore our dogs and they really help when I’m having a down hour or 2.  I always try to snap myself out of it as it really doesn’t help does it ….

Sleep … now that’s a real problem. Like you I get about 3 to 4 hours a night and even that’s interrupted. I don’t worry about it as like you I’ve always had trouble sleeping especially when I’m stressed. I will definitely check out the other thread, thank you for that. 

yes Nige, looks to be a big dog softy as well 

H️ope you have a good day, take care, hugs to you and H.

Deb x

Thanks Deb.

I took advantage of my crazed sleep patterns and walked down town (non driver) to do the shopping.  H is still in bed, almost nine weeks post RT and still fatigued, but I don't mind at all and a daily paper's waiting when he gets up.

Unfortunately, we aren't able to share our bed yet as H has to sleep practically sitting up, mainly due to the mucous in his lungs, and sometimes I need to go upstairs several times to help with that or put him on the nebuliser.  All in all, my poor fella's problems and my ludicrous sleep habits wouldn't be conducive for either of us getting any zeds in at all. No matter, it'll resolve eventually.

Now please give your gorgeous hounds a hug from me and I'm sending one to you.

Take care,

Gill xx