Thanks for that,found it very encouraging.My husband had the same diagnosis but being much older they didn't offer surgery,just radio.He is 10 weeks post and needing another biopsy,he fetls very disheartened after all the treatment he was hopeful.Your description of what you can eat was helpful as I think I am trying to encourage him beyond his ability at this stage.

Good luck to you. 

Hello, sorry for the delay, I seem to have missed your reply again!  I'm not soing very good at this at all.  I'm almost off all of my medication now, I'm just taking one at night but going to drop that this week, I kind of took control of that myself and dropped too many too soon, so had a rough few days.  You done better than me.  My doctor wasn't listening, so I took matters into my own hands.  I'm feeling so much better, this has been the longest stint without thrush and I'm basically eating everything, still with water and my throat can get a bit tender but not sore, very bareable.  Yayyy!

Glad you can sleep through, a good sleep changes everything!

You done good to put weight on before hand. I struggled, I couldn't get passed my usual weight for love nor money. I have put on 9lb in 6 weeks, 14lb to go, I am still using my app and just forcing food down, even when I'm not hungry. My clothes don't fit great at the moment and I don't want to buy new clothes at a smaller sizer when I don't plan on being this size for long, so I'm a woman on a mission, haha.

I can manage chocolate now without too much bother too

Hope you had a great time in Wales, even if it was raining and I hope you didn't waste it moaning, haha.

My scan was approx 4 weeks ago, and last week I was told there was no sign of disease and that my healing is coming along great.  My next appointment is in 8 weeks, and going by my weight gain I should be around my usual healthy weight!!

I hope all is well x

Hello,

Oh, I'm pleased you have found it encouraging!  Isn't it odd how women tend to come out of these things stronger than men don't tell him I said that and obviously everyone has different side effects, so his side effects may have been worse than mine.

I am around 20 weeks post radiotherapy now and I am still not back to normal, but almost off all of my medication and eating loads more than I was.  Still not eating anything spicy, and not eating crisps, I'm more scared to try them than anything else, but I will in time.  I am basically eating constantly just trying to get my lost weight back, which is coming

I have even managed a fizzy fruity cider, and a beer, which was lovely.

I think he might surprise himself by trying to eat more, as I think most of it is fear, however it is still early days for him.

That's a shame another biopsy is needed, I would feel disheartened too.  I hope it goes ok, I wish him all the luck in the world.  Please let us know how he gets on x

Hi

well done my oral thrush seems to be in control I’ve had one month if Flucozole tabkets so hoping when I take the last one this week itbstays away as I find it quite debilitating strange aftrvall we’ve been through. 

Wales was wet one nice day but just git in with utbwownt an absolute fortune 4 coffees n a soft:drink overv£20;and nothing special about them really annoy me. But we made the most if it anyway. Niw in Spain’s after a cheeky break in the apartment we do a king teen rental,in though why nit we pay for it so booked some flights ans here we are. Temperatures a but high shoukd   Be 28 which I can cope with but up towards 40 is too high but plenty if factor 50 and sit in s the shade. Plus coffe onky€1.50 notthat i am drinking  it as am finding it dries my throat so stick  to my herbal tea.

my last hospital visit had  scope all ok  again mid July hoping that in September I am out in 3 month visits. 

I too has a alcohol free beee the ithee nughtbimoeesses myself as gettngbfed up if water water n more water was a nice change. 

Crisps I can’t manage a 30 g packet yet but can do half a packet id plain one no way flavoured ine yet but nuts may be the next thing I try  

at least when I look back it’s a year thus weekmsince my mask was made and thunk I’ve come a long way 

onwards answer upwards my friend 

Hazel x

Hi don’t get down hearted at least 60% need either another biopsy or further scans ,I know quite a few who have completed treatemntbthen need a nexk dissection to remove some lymph nodes and some who just have been showing hit spot on the scan so fingers x .

re food we are all,different some days even 10 month in instruggkw and hubby will say yiu could eat that last week www throw a lot if dos away which is annoying but it’s just one of those thing she with this type of cancer trial and weeoe. Bread  is still a sticking point for me ans I live my bread 

keep in touch good luck 

Hazel x

Hello again,

Well fingers crossed that's you on top of the oral thrush and it's stayed away.  I never expected it to be so bad, it is debilitating, so very sore, and definately not fair after everything else. Mines hasn't been back for weeks, so I'm hoping that's the end of mine too.

That would have annoyed me too, everything seems so over priced!! Even if you did only have one dry day, it sounds nice, Spain sounds better though I find coffee a bit drying too actually, I usually stick to my tea with honey instead of sugar.

Brilliant, long may that continue.

I gave up trying with crisps, but can eat nuts, well walnuts, because they are soft, but more than that they are fatty. Although, my weight has stayed the same for the past 2 weeks, even though I'm eating for Scotland.

You have definately come a long way, well done! My mask was made 7 months ago, crazy.

Oh, that's me off all of medication, had some horrible withdrawel symptoms, but doing, good now. Isn't it amazing how everyone's affects of treatment and recovery can be so different. I remember reading all the blogs and trying to compare myself to others, but no-one seemed to have the same story as me/ vice versa. 

Hope Spain is/was fabulous x

Hi 

thank you yes looks like none us of have the same experience similar things but no hard and fast rule. Still in Spain until Thursday. I too drink mostly herbal tea but off de caffeinated coffee is doable crops are getting better but still no to any nut but will keep trying. Am enjoying the sun albeit from my shaded position but managing to swim in the sea. In s much better place lol than this time last year. Another weeks supply of flucozsnole for oral thrudhbdo hoping it keeps away. 

Riding my bike did 35 km yesterday so normalisation is coming back to my life . Plus put 2 lb on reckon it’s muscle due to biking as opposed to over eating though 

keep in touch 

hazel xx

Onwards and upwards  

hi, 

i came across your post as I’ve just had a tonsillectomy and am awaiting results of histology. 

Im 36 so similar in age, but just wondered from reading your story, was there any difference in your tonsil by looking at it? Or did it look normal but due to the lump they biopsied it? 

Thanks in advance 

caroline

Hi Caroline,

There wasn't any difference in my tonsil at all.  It was only after my tonsils were removed that they knew where the cancer had began.  It all started from a lump in my neck, so after various inconclusive tests/scans I had an operation to remove the lump and a secondary cancer was found.  I needed a second operation to find the primary, they removed my tonsils, a piece from the base of my tongue and as many lymph nodes from the left hand side of my neck as they could get, was around 40.  Anyway, the cancer was found in my left tonsil and another 4 lymph nodes.

I hope you are recovering ok from the tonsilectomy, I found the aftermath really painful.

Any other questions, just give me a shout x

Hi Hazel,

I missed your response again, apologies.

You sound like you are doing great progress is progress and as long as we are moving forward then we can only be happy!

I have now put on 16lbs and still pushing to gain my remaining 7lbs.  I had a follow up appointment last week and they are delighted with my progress, which makes me want to push myself more.

My biggest problem is slight trismus, my jaw hurts when I yawn or over stretch my mouth, I hope that improves over time.

7 months out of treatment and going strong

Hope you are taking care of yourself x