Hi everyone 

I haven’t been on for a while I finished my treatment on the 5th Oct 2018 and by god it was a journey, I lost 3st and still struggle to put weight on my taste buds have totally changed and can’t drink alcohol or eat anything spicy as my taste buds are like new so it has been a challenge anything with custard is great thou swapped chips for sweet potato Fries bread is a no go and pasta unless it’s spagetti it’s a no go but also enjoy new tastes and food and pretty much back to old school meals meat and veg and tatties, energy levels are back to normal walking and yoga as much as I can even back to work in my salon which I love had my scan recently and it came back with a hot spot which I was devastated about but then it’s quite common for the first scan 12 weeks after treatment so waiting on another one then hopefully I can close the door on this so all you that are starting treatment or at the end they warn us about how nasty it can be and by god it was but honestly I feel the same as I felt pre hpv cancer and the plus side am size 8/10 which am loving so good luck to you all 

cheers Maria 

Hi Maria

glad you are well on road tomrecoveey and fingers x for next scan ,yes have heard that hot spots can happen. I was lucky and my scan at 16/weeks showed all clear ,just 5 years of consultant visits. Dry mouth is my bug bear but small,price to pay to live. 

I have to agree with yiu it seems like food of my childhood like yiu is the way to go for niw at least spicy food deffo no no can manage pasta but not lots of it. 

Take care am writing this from our rental apartment in Spain ,since treatment diniskes manage date 2 flying visits and this time we took the ferry  to Santander a s today u managed to drive 2 hours which is the first decent drive I be done  since diagnosis. So onward and uowards   Thank u h p v tonsil cancer at least the success. Rate us pretty good

h 

Hi Maria

Great that you are enjoying your new dress size. I am a little disappointed as I only lost a little weight in all the wrong places..

Foodwise I have discovered that french fries works nicely. Everyday chips are far too bulky and stick in my throat. Having shunned fast food for years I have been hitting the Burger King at my hospital forecourt and tucking in as a special reward. 

I am a good 5 weeks out of treatment now and finding energy levels an issue. I need to eat and drink more often to keep the engine running.

'Hot spots'?  Is that a brighter area on a scan? WHats your treatment plan for a 'hot spot'? 
I just had my first post-treatment ENT appt. with endoscopy and seems ok.. so far. Although worrying as the doctor didn't exactly say much and had to prompt him to say it all looked ok. A few months now till my scan and any medical decision over how everything has gone. The first 6 months must be a bit hit and miss as it seems like the radiotherapy has put lots of things into hibernation. It is odd not having to shave for months.
 

Hope you are doing fine and enjoying the current heat wave up in sunny Scoootland.

Paul

 

Hello All

I have just found this thread having resurfaced 4 days after my tonsillectomy for likely squamous cell carcinoma grade 3. I’m still fact finding and have joined the fast learning curve of what works for painful swallowing, earache, mucus and the Sweeney Todd throat effect plus cactus  insertion feeling. Not to mention the emotional shock and trauma coupled with dread. 

I have two two teenage children and wondered if anyone has experience in breaking news like this. As yet they are in the dark; it’s a very important time as my son is about to sit his a levels. My daughter is a year younger.  I’m a single parent although have a supportive partner. I had a different cancer twenty years ago so have previous experience of chemo and radiotherapy but not on a functioning body part!

i wanted to join in the chat because you are my best source of information and connection with a reality I need to face. I’m touched by the sharing of what is so individual and private for people. Thank you.

Jane

Hi jane

welcome to our small and inclusive club that no one wants to join. 

I have written a blog from day one which I have been told is numerous honest and I have had a positive outcome 

maybe so the teenagers could read it as it’s onkine and on their way if receiving info.

i had tonsil cancer T2N2NM0 and was diagnosed the 25 June last year  year with all clear the 14 th January thus year  with 5 year visits to ent.

its nit an easy journey but I Am a 62 year old wimp who cries a t a broken nail but postive mental attitude has got me to where I am today I wasn’t going to let cancer beat me. The stats show hovtonsil cancer has an excellent success rate ok the treatment is brutal anencephaly I still have. Dry mouth but am writing this from our long term rental apartment in Spain where this week I climbed 2 10000 foot hills and bikes 62 Kim’s show your kid this when I tell them ok they will have timgriw uo a but quickly as it’s a shock I have a 8 year old grandson who took it in his stride ok didn’t mention cancer to him as too young but he knew everything else

my blog is www.radioactiveraz.wordpress.com if yiu haven’t read it give it a try it’s nitbtoo scary

goid luck keep in touch if I can help will do

hazel aka RadioactiveRaz  

Hi Jane

Sorry you are in this small club that no one wants to be in.

I'm post treatment 16 weeks and sied effects still hanging about but was given the all clear 2 weeks ago after 30 sessions of radiotherpy. Ive also written a blog, warts and all and it logs my journey from the start , through treatment and recovery and latest up to date news.
It also has a helpful section on tips picked up along the way from my own experience and from others.

Also started a thread here at the start and its under Living with Cancer and entitled Radiotherapy for Throat Cancer. Please feel free to join us there as well as this thrread and you might find helpful as well.

As for kids, thats a hard shour. Mine are in 30's and I didnt say anything for a while then I told them was getting a little treatment for throat, then told them throat cancer but not to worry as was told very high chance of cure and success rates are really good so treatment will be ok but I'll be recovering from it for a while. Again ive tried to be positive throught all this and I think thats helped my family as well.
So please keep in touch and let any of us know if we can do anything to help

radiotherapythroat.home.blog

kind regards

Ian

HI Jane
Sorry to hear that you too have fallen foul of this nasty disease. On the upside it generally has a good prognosis. A VERY good prognosis!
I have four kids at home; the youngest at sixth form college. I have been fairly frank with everyone but at the same time tried to avoid compounding or complicating issues. I was blatently honest and did not colour anything. Mention cancer and the tendency is for everyone to freak a bit. It has dreadful implications but thankfully modern medicine is a wonderful thing. Nobody has openly expressed any worries but at the same time much goes unsaid..  Family life has continued as before.
I feel I am in good hands treatment-wise. The main issues have been dealing with the effects of the treatment and is good that family appreciate how that is all going. Some of the energy has been channeled into ways to help with the ongoing situation.
 
You sound like you are still at the investigation stage and awaiting results. Good luck with that.
I must admit I thought my own tonsillectomy was awful and had a bad few weeks. It was a month before I felt recovered.

There is lots of info and advice out there. The blogs provided by members here are very positive and helpful. Maybe its best not to think too much before your own set of circumstances become known. Feel free to ask here. Everyone is very keen to help.

Good luck.

Paul.

Hi Jane 

I have 3 kids who were 8,12 and 14 at the time we found out my daughter was brilliant and coped really well my middle son was so affectionate towards me and didn’t realise until a few months it was cancer as I played it wwell down to them and my 8yr old had a sore Throat the whole time I was in hospital as I was admitted during the week home at weekends it’s a scary thought I am now 6 months post treatment and on the mend feeling great but it’s now I am seeing the after effects it has had on my kids  I can’t leave my youngest to long as he gets pretty upset and thinks am going back to hospital and asks every time we are in the city if that’s where I am going and my oldest is going through a bit of a tough time with hormones and stuff and also dealing with seeing me so poorly my other son deals with things by asking questions which is good but we are all made of tough stuff ans get through it good luck in your journey xx

Hello everyone who has an interest in this. I’ve gone to ground for three weeks coping with the tonsillectomy and confirmation diagnosis of squamous cell carcinoma, HPV positive. I now have a further treatment plan and told my children last week that whilst I needed a couple of operations to ‘clean out around the tonsil and remove the nodes from my neck’ this was a belt and braces approach  to get rid of all cancer. I told my children together as my son predictably went very quiet and I felt would benefit from hearing my daughter express herself and ask questions. At the minute I’m fully functioning and so life to them is relatively normal but for the shock. 

I was given the option of radiotherapy to these areas or surgery to remove base of tongue, some soft pallet and the tonsil socket plus open neck dissection for nodes and salivary gland and other tonsil. The radiotherapy from reading this forum seems to carry both medium and longer term residual effects so I have opted for the operations hoping to keep the radiotherapy option for just in case as an additional modality. 

Has anyone on here had just surgery of this nature? Any tips for managing this stage? I’ll have an NG feeding tube in the short term. I’m assuming they look at frozen sections for margins whilst on the table so the standard 5mm clearance can be achieved hopefully. Am wondering what my function will be like afterwards? Also my throat and ear remain sore from the tonsillectomy 23 days ago which is a disconcerting reminder of what is going on. Brufen and paracetamol are very effective for this but I’m surprised to still need them so of course worry it’s cancer cells giving pain instead. Can’t seem to shake the imagery which leads to a ‘bring it on’ attitude to surgery I never thought I’d have.

also gastronomically regressed for a while finding milky redibrek and 3-6 months apple and pear purée baby food good meal sources. Oh and sauces.... now I prefer crusty bread or roast potatoes as these seem to help unblock my ear, either from chewing hard or dragging some of the mucus down my throat this ‘removing’ it. I have to say the instant hot water tap we had fitted is very fitting so to speak. I have been constantly drinking warm water as a throat soother by mixing hot and cold. And I only swallow coated tablets... much kinder with warm milk to the throat. Chocolate has been a no go zone despite people thinking I need the calories and that it will just slip down. It burns like an astringent and sticks rather than go down. 

So round one of surgery is 16th April (neck nodes and other tonsil) followed by mouth clearance two weeks later. Then we shall see where I am at. 

Good luck anybody else on this conveyerbelt (and braces). I’m with you.

Jane x