Hello people.

I noticed a lump in my left neck gland area in May.

As per the NHS site, I left it 3 weeks and then went to my GP. She was great, in referring me to a consultant and I feel very lucky, given it was hard to get an appointment, let alone looked at.The consultant even said it was only my GP's basically begging letter that made him look at me(!)

Anyway, I'm still not 100% sure what the diagnosis was, because I didn't want to read the paperwork, but the cancer was in my tonsils and had spread to my left neck lymph gland.

I was prescribed 30 radios and 5 chemos and treatment started in July sometime.

My big issue was getting adequate nutrition, because I have a serious dislike for most foods. I don't like seafood, pasta, pork, fruit, cereals and a lot of vegetables. Weird, I know, but food has really never interested me and I've always eaten out of necessity, not desire. Hence my weight has always been on the low side for a 5' 7" male, at about 9 stone 7.

I struggled to eat anything during my treatment. I'd be given Fortisips, but I felt they were making me ill.

I was forcing them down and got to 5 a day, where I ended up so violently sick that I vomited up the NG tube that I'd been given a couple of weeks into the treatment.

I then refused to take any more Fortisips, telling the dieticians that I'd rather starve, even if it was reducing my chances of a good recovery.

It turns out that didn't do me much harm, as my appetite improved pretty quickly. I suspect I'm allergic to something in the Fortisips. maybe the Lactose.

Anyway, food has been a constant struggle. I lost all sense of taste and a lot of things were burning my mouth. I couldn't taste anything for a good few weeks, until I had one of those mini strawberry trifles, where I actually tasted something sweet. Oh, the joy of that!

Full red meat, particularly is bad for me, but I'm not too bad with mince. Tomatoes are a no-no.

I basically find I'm living on Roast chicken dinners, with lots of gravy and veg, where peas have been my saviour in acting as a brilliant lubricant. Otherwise, it's boiled or scrambled eggs with toast. If I take a gram of paracetamol and maybe a bit of oromorph, I can do some crusts. Oh, Big soups are ok for me too.

I've put most of the weight back on, but my big concern now is that I think the pain in my throat is getting worse. I don't know if this is down to me pushing things too much. If so, I can live with it.

A bit of self diagnosis via the net tells me I have quite bad lymphodema, which may also be causing the pain, because of the swelling. I'll find out more when I see the consultant.

I have a PET scan on the 18th of Jan and I'll find out the results on the 28th.

I'm more worried about this part than anything that's happened previously, but hey ho, I'll cross any bridges when I need to.

The point in my post is, as much as you might think it's bad at the time, it does get better.

I feel pretty good at the moment. Not going to work good, as I still get tired easily, but reasonable.

For info, I'm 58 and worked 7 days a week previously, so was fairly fit.

PS.

The other point is that anyone suffering this isn't alone.

I've felt it very awkward to discuss things with the missus, as my priorities are to make sure she's ok if I snuff it!

I've hinted to her that we have to accept that my condition might kill me, but I don't think she wants to contemplate that, so it's awkward. I've thought about me dying and can accept that it might happen. I'm fortunate in that I'm young, but not so young, if you see what I mean.

It seems to me, this is the worst part of having cancer or any other serious illness, in that it's almost taboo to discuss it.

But I'm sure these sort of thoughts must massively play on any sufferer's mind. And that's where people have my sympathy.

I know exactly how you feel.

The good news is I was given a 60/40 chance of surviving 2 years. I take that as a positive until I have reason to think otherwise.

Hello to Everyone.

Hope you are able to enjoy Valentines Day!!

 i haven't been on here for a while so thought I would update you. Some of the info might be helpful.

I was diagnosed 2 days before my 57th Birthday. Found a lump left side of neck whilst applying moisturiser. No sore throat. No earache. No tiredness. In fact I had not long been retired and we were in first lockdown so I had bought an electric bike and was on a health kick. Had never felt more relaxed, fit and happy so diagnosis was a shock

DIAGNOSIS & TREATMENT

OK. So grade 2 to 3 tumour in tonsil. Spread to one lymph. I had surgery to remove tonsil and at same time neck disection to remove lymph node  Radiotherpy was delayed as a further operation for deeper tissue biopsy was needed. That proved clear. 

6 weeks daily radiotherapy. No chemo.Nurses were marvelous. The mask is panic inducing at first as it fits so tightly across face but you get used to it. Just breath. Thinking positive thoughts during treatment might help. I used to recite in my head " Iam being cured I am being healed" or maybe they can put some music on to disguise the clanking of machines.Sessions go so quickly (10 mins) I finished Dec 11th 2020

RECOVERY

I have been fortunate. I believe my age and my nutrition prior to diagnosis has helped my recovery. The professionals paint a worse case scenario but my advise is everyone is different so please don't expect the worse  scenario. I do not want to make light of this as I know  many patients do struggle but not all are effected so badly.

This is my personal experience: 

I had one inflamed ulcerated area only. I was able to swallow throughout. I ate slowly and carefully and chose bland food with sauce or gravy. Eveything seemed to have sand in it. Taste buds were effected so some things I couldn't taste and some things didn't taste right. The scar tissue in my mouth was  troublesome. It felt like someone had stuck two fingers down my throat but it was manageable. I produced saliva throughout and managed my Christmas Dinner. I used fluoride toothpaste, a soft toothbrush and swilled my mouth with the hospital mouth wash up to 10 times a day. This reduced the prickly sensation in mouth. I lost just 6lbs during treatment.

NOW

Last night I celebrated Valentines with a hot madras king prawn curry from the takeaway!!! I could taste it almost as I remembered it. Yes it was hot and I had to have a glass of almond milk close by but I managed it and enjoyed it. I am eating anything I want. Textures and spices etc  and only 8 weeks after treatment ended! My energy levels have remained more or less the same throughout. Scar tissue in mouth is still troublesome and is dryer next day if I have had wine or a g&t but yes I do have the odd glass and can taste it now.  Even prosecco. I couldn't tolerate any alcohol at Christmas and still find baileys too strong but dilute it in a drop of milk if I fancy one.

My voice has altered. Slightly gravelly and I used to sing soprano in the choir!! Singing is a real problem. It is as though the scar tissue is compressing my vocals but I am having voice therapy zoom with NHS from Tuesday. I have lip turn down which means my mouth looks a bit like a stroke but is improving slowly and because if scarting my tongue bizarrely is no longer central!

Speak to your nutritionist at hospital. Drink plenty of chilled water. Eat fruit and veg and seeds and nuts and remove fast food and processed food from diet. Cut down on sugar and try to include "live" yoghurt., Kefir milk products and pro biotics. If your gut is healthy your body is healthy. Take some exercise. Get fresh air and fill your lungs. 

I am no health freak but the doctors are astonished at how well I have done . Take time for yourself and look at replacing your usual shampoos and skin care with Tropic products which contains no nasties.

I try not to worry but because there is no final scan to give you the  all clear there is always some concern. I am trying to listen to my body and trying to differentiate between healing twinges and red flag concerns. 

Good luck everyone. The outlook is good for us. Stay positive and you will get through it. lLve your  life well and with a smile.xx

Sharon

Hi Julie.

So sorry you have become a member of the club!!

My consultant believes because I was otherwise healthy before diagnosis and relatively young at 56 it has been helpful to my recovery but have a chat with the nutritionist because I was shocked to be told that before my radiotherapy healthy eating, supplements and definitely herbal remedies were not permitted. The reason given is that if you take lots of turmeric and anti oxidant foods the cancer cells don't like it and "hide" so the treatment can't zap them.  Six weeks after  treatnent  you can resume your healthy eating plan. Just thought I would mention it. Stay positive Julie and my very best wishes xx

thanks for your response Sharon, it is great having this little group who can really empathise.

Really interesting about the nutrition, wont go mad, just will try and not do too much sugar etc.  Was really trying to lose weight when this started so had switched to better eating anyway, also a lot more water.  Hopefully, my lack of other illness and 52 years of age will also help me.  Have just had a call this morning to say MRI and CT on Thurs so moving forward really well.  Must admit though, the idea of radiotherapy if required is scaring me the most at the moment, especially if I have to have teeth removed?!?!  Not going to dwell on it though as no point until I have had follow up with the consultant.  Impatience is most definitely NOT a virtue :laugh:

Hi Julie. Dont panic about teeth. That was the only time I cried when the emergency covid dentist agreed to see me and told me on the phone there would be no problem for him to remove ALL my teeth!!. Needless to say none needed to be removed. Get your dentist to give you a prescription for fluoride toothpaste and use just a little each day. 

The radio therapy team were so very lovely where I went (Carlisle) . The mask is not pleasant at first cos it fits tightly across face and shoulders and is strapped  to the couch.

Some places play music. Ask if you want some.Sometimes I did especially the Christmas songs!!

Eventually you will recognize the clanks and noises of the machine and will know when your sesdion (10 mins) is about to end.

I used to say a little mantra in my head  "I am being healed I am being cured"  you might think that's not for you but it helped me.

If you are having a neck disection to remove lymph glands you might experience a lip turn down. It is basically where the nerve on the neck has been moved around  and effects your lip so it doesn't move the same way as the other side of your  mouth when you talk or smile. Mine is slowly improving but I do hate  the way I smile now. Small price to pay for being cancer free!!

I would be interested to know if anyone else on this site has experienced this and if it  repaired fully. For a woman it probably means more than for   the fellas??

Last point I named my mask Margo!! I hated her but will soon be making up her face  (eyes and lips) and my friend is going to hang her in her photo studio!!! (I know a bit mad hey?). Finding some humour in a hideous situation helps. 

Any more questions Julie I am happy to tell you my experience. Someone on here helped me when I needed info. Good luck for Thursday.

Sharon x

funny about Margo, I have strange humour so neck lump(s) are called Gerald!  Apologies to anyone with that name but helps me.  Husband is getting used to conversations such as "can you just move that..." - "no, sorry, Gerald says no"!  Also earier to talk about so kids dont hear anything they dont need to.

Have had another call today and now have PET scan on Weds so definitely getting the works!

Re the teeth, I'm not sure if it is just if you have big fillings that they need to be removed??

thanks again so much Sharon,

Julie xxxx

Hello,

Just wanted to jump in and say don't worry about your teeth too much, loads of people haven't had any teeth removed, and you could be one of them.  I had one tooth removed, it was a wisdom tooth and already had a large filling, so they took it out as a precaution, just incase it had any future problems and the likely hood that I wouldn't be able to open my mouth as wide as I did before, access could be a problem. But it was nothing, wasn't sore and healed a treat.

I never name my lump and now I feel I missed out, hahaha.

I healed not bad, the hardest thing for me was gaining the weight I had lost, but all in all, I'm pretty much back to where I was pre cancer.  My smile is slighty different too, not too noticeable to everyone else, but it is to me, I can live with it.  I do get cramp in jaw, on the lump side that can be a bit sore, but it's infrequent and only happens for short periods, so that's liveable too.

You'll be fine, don't think ahead too far, just take it step by step, it makes it far easier to deal with.

Good luck with everything, I hope it goes as well as it can for you x

Glad to hear you are well on the mend. All the best to you.

Sharon

It probably does have something to do with the fillings Julie  Your Macmillan nurse will be happy  to help with any questions. Dont get too attached to Gerald!! Let him know he'll be on his way soon ( ha ha)

Sharon x