Recovering from Tonsil Cancer

Hi Shannon,

Try not to worry until you have to! Just because you’ve had a HPV diagnosis previously it doesn’t mean you WILL get an oral or cervical cancer.

However, yr symptoms do need looking into. As you say it could be anything BUT insist you are tested do not be fobbed off.

It may well be a nasty infection - tonsils are funny, smelly infection attracting lumps and mine have caused me problems way before the cancer arrived. Glad they’ve been but out and chopped up. 

Take care and keep us updated!

PS - Try not to read too much on here unless you have to - it will only increase yr anxiety 

Wow - sounds horrendous and then all of this on top - we’ve certainly not had it easy! 

Im having by far my worst day yet! Totally reliant on tube today my tongue has sores either side that are burning with just water. 

Ive manged one ensure down the tube but that’s it. I just feel so sick. 

Someone just shoot me! 

Julesey

Keep your chin up! I’ve had moments like that too. I’m so desperate to eat real food and being tied to the house because the necessary PEG regime is a pain. Stay focussed and get those Ensures down you, you need the nutrients to keep your body going - I’ve found out the hard way and do keep syringing as much water as you can!

i think it’s just going to be time that heals and take each day as it comes. My consultant keeps saying I must eat and to look at stodgy, mooses, choc puddings etc but when your throat is so sore and swollen it’s so difficult even when taking painkillers half an hour before!!!

Reevesey

Shannon

Julesey is right but from my experience I’d say press, press, press! I was referred to a consultant initially who was so slow on taking me on board (NHS - although I thought she was a private consultant) .

I phoned and emailed her secretary again and again worried sick as you’ve explained but didn’t really get anywhere. Turns out that the HPV in the throat as I had it in my tonsils was (a) very treatable, (b) very early on and (c) in the grand scheme of things my cancer was less of a priority compared to other cases in front of her hence I think I was put at the bottom of the paperwork pile (although I was never officially told this).

Its your life, your physical and mental health that’s at stake, I would encourage you to politely and persistently keep chasing for appointments or updates as time is a key factor. Don’t worry yourself unduly as Julesey says but it’s tough for me to say that because when you’re told you ‘might’ have cancer the ‘word’ and everything about it consumes you and you have every right to be worried   

To be honest I’ve hit a brick wall mentally, I wake up in so much pain every night. Throat so sore, mucus just there constantly but I can’t actually clear it now.

Im sick all the time so reluctant to eat anything now it’s pointless if im sick. I just can’t be bothered with all this anymore I don’t see any improvements apart from the external burns that have almost healed in nine days.

I just want my taste and appetite back. I was always a foodie eating out and cooking elaborate meals. I feel so punished but it all. I worry I’ll never get better. I feel so defeated but it’s been seven months of surgeries, needles, scans, treatment and now recovery I’m exhausted and miserable. I feel guilty for feeling like that! 

Julesy 

Do not worry!! I’m now entering week nine after completing my treatment and I’m the same. I have moments of complete deflation and demoralisation. No one can say anything to make me feel better and yes, I’m struggling to swallow, at times my mouth is like cotton wool then it’s full of mucus and then I’m unable to talk..

I have felt desperate at times and by now I’d have thought that I could have eaten something but no. From 100kg I’ve hit a new weight low of 72kg and I honestly don’t know how the hell I’m going to put any weight back on.

The only thing we must hold onto is ‘time’ - I’ve been told that THREE months post treatment is a realistic period to wait before you start to see any turn or improvements. Try to stay focussed Jules, message on here as often as you like - remember, we are going through the same as you!

Regards - Reevesy

Weeks nine - that means I’ve got seven plus weeks even to get where you are and that’s not much different from where I am now!

They know this but don’t tell you, they know it gets 100 times worse before it gets better. I’m in a lot of pain tonight again and I’m horrible to be around! I’ve just been in bed all day because yesterday I over exerted myself. 

I really kidded myself and thought I’d be better in a couple of weeks hahahaha no chance. 

Its nice to chat to people that understand, my friends and family think I’ll be or should be better sooner and have unrealistic expectations of what I’m going through I think!

One has also booked me a spa wk end end Nov but I don’t think I’ll be able to make it. Especially if my sodding tubes still hanging around. 

I’m worried my weight will drop to a rediculous level. I’m about 60kg now. I’m trying to eat but can only manage soup.

Oh deal - I’m slipping into a kind of hopeless realisation that I’ve got alonggggg wayyyy to go! 

Wishing you a comfortable night! 

Hey Julesey

Let me remind you to remedy that one of our fellow bloggers said not to get too hung up on what’s being said on these post boards! I’ve experienced one type of recovery and yours might take a turn for the better really soon so it’s goid to stay open minded.

The passion in your posts tells me that you are certainly very keen to ‘be well’ which is tremendous spirit. It will come and the pain and discomfort will slowly subside but I think you’re right - it’s all about kid steps and listening to your body. Please persevere with the PEG as I have (reluctantly) and I’m feeling better as a result of getting calories in, sure I’m not consuming the x9 Ensures my dietician told me too but every day I’m close, putting tepid water into my stomach at very regular intervals has helped me stay ‘loose’ with the help of Laxido sachets too. I’ve never experienced being constipated before having cancer and it’s horrific hence the water intake. I fill a pint glass with water and challenge myself to see how swiftly I can finish it and try to have been to three pints each day. In addition, I’ve set up a little feeding station on my kitchen work surface which stays there and that is another good visual cue to keep feeding!

I can’t eat or drink anything orally really but I’ve found that the litre bottle of Waitrose Banana or Strawberry flavour milkshake goes down well and one bottle is worth nearly 1000 calories! They are only about £1.50 - try it!!

Hello - I’ve not been on here for a while.....

Well I have made progress, I’m eating and not using tube, actually I’ve not really used tube.

Although eating is painful I just do it because I’m hungry and I have got 90% of my taste back and I’m heading into wk 6. I can actually enjoy a cup of tea. I took Zinc and have had two Accupunture sessions and it’s since then I’ve noticed improvements. 

I do have tiny clear blisters that sting in my mouth and a large radiation burn on the side of my tongue, I am still taking maximum pain killers. 

I also asked for my tube to be taken out and they removed it Friday just gone because I maintained my weight. They told me in the last five years there’s only been two patients with head and neck cancer that’s not used tube and I’m one of them. I just could not get on with it and when I wasn’t hungry or too sick I just didn’t eat. I always had a fear of becoming too reliant on it and loosing my swallow but that was being scared from what I had read online. 

Ive been quite busy and doing bits but I do get tired. The dry mouth set in last week and I’m coping with it but I hope it doesn’t last forever. But all in all I’m happy with my progress. I’m a determined individual and I think I rush things and get impatient. I’ve set myself a year to get better - I think that’s realistic?? 

Looking forward to Christmas now and enjoying a dinner without pain. That’s my aim. 

So how are you doing? Have you made progress - what week are you on now.? 

Jules 

Hey Julesey

Funny thing these blogs. I’ve had a tough week this week and I know exactly why - the previous week I was on it with the bottles of Ensure doing 7 or 8 a day (when I should have 9) but as a result felt ‘normal’ ish. I clearly did too much then last weekend - crash! I think it’s taken most of the week to recover from that blip and it has been so frustrating.

Emotionally I’ve had a very tough week as I’ve clearly been wrapped up in my own bubble and it’s apparent that I’ve been distant from my wife/boys. I’ve tried to explain that it’s weird because you only find yourself thinking about ‘you’ and it’s tricky to fathom others into your life when you’re going through this beastly thing! I’ve started with a counsellor this week, totally independent and no medical background because I think I needed a soundboard. I’ve had a feeding pump and backpack delivered so I can now insert 500ml bottles during the day and regulate a feed over four hours rather than have to syringe etc. I’m getting the knowledge tomorrow so I’ll let you know how I get on.

Went to Costco today and watched my wife eat one of their hot dogs - it smelt and looked devine but I still can’t swallow properly at all. Looking forward this week to getting that Speech Therapy referral but there’s some really good basic techniques on YouTube!

i can remember week 7 Julesey and although it seems ages ago it isn’t really and you’ll be at week 12 (like me) in no time. I’ve shed some tears that all I’m doing right now is ‘existing’ from day to day but it is what it is - I’m so slender now I actually look like I’m ill if that sounds weird? I was 100kg and I’m now 70 which for a guy whose 6 feet tall means I look like rag and bones! It’s a vicious circle, we all need to eat to repair and rejuvenate our bodies/cells but when the body won’t let us (at the moment) because of the reasons discussed it’s tough.

This week is my MRI with the Contrast Comparison then I get to have that sit down chat on the 6th of November to see if we’ve abliterated it - fingers crossed. In the meantime we all just need to focus on the here and now and try to stay positive. Easy for us to say but yes, I’ve had a lot of feelings that those around me have no understanding of how your progress is going and their expectations are way off. Let them think what they think - if they see me they’ll soon realise I’ve got a long way to go, I think most of the comments are based on people wanting to compartmentalise our illness as it’s easier for them?

Anyway - have a good evening and remember, you’re now into week 8!!!!!

Regards

Reevesey