Hi Nicola

I just thought i would drop you a line as I have been chatting to simon who appears to have gone through the same thing i am now facing

At present I have a secondary site in my lymph node on the right hand side of my neck ... they can not find a prime site I have had multiple cameras and tubes doen my throught had a ct scan and a PET CT scan and no primary site found ... I am now going into Addenbrookes on monday for multiple biopsies from the back of the toung throat and a scape of the tonsil area (although i had them out when i was 8) before they assess my treatment plan

At present i have been told that they seeno need to operate and think the lump can be dealt with ... via the 6 week of chemo and radio therapy ... so you appearto have had it a lot worse than myself

I know what i have and accept it and like where Simon was i just want to get on with it and reading your and Simons posts has given me a flavour of whats ahead ... i know its different for everyone

Im just trying to get a perspective on what i am now facing and how long im going to feek crap for as i have a business to run and am trying to put in steps to limit the impact of my absenses

regards

Gary

Hello everybody,

Sounds as if everyone is doing well especially Gary. Have you finished treatment now? How are you feeling? Sounds as if you have coped well, how was the cookie? There was no way I could have eaten a cookie at this stage with a frazzled tongue! As for being bunged up, Laxido was what I was prescribed, it seemed to help. Strangely I've still got them as well as some other meds, I feel weird about throwing them away but I'm not sure why I'm keeping them, kind of a safety net I suppose. Keep me updated with the Leeds meet up, I love Leeds. I will try and make it if I can. You sound as though you have escaped the phlegm issue, I still get a sticky mouth first thing in the morning but the phlegm problem settled down a few weeks after treatment.

Simon, I've noticed an improvement with food too. I eat three meals a day most days now which helps the fatigue. Pleased to hear you say you have days when you feel like you've never had cancer, I look forward to that. I'm still waiting for my peg to come out, I have a tongue check up next week and I'll be making my disappointment known, I just want it out now. The referral should have been done almost eight weeks ago so it's time to make a bit of fuss I think! I'll be glad to be rid of it however every time something comes to an end and its another step closer to being normal again I get a little wobbly. I suppose like you were saying, it's all been a safety net and when it was time to have my PICC line out or stop meds etc I felt a bit shaky. Sounds as if you are back into the swing of life which is great, I hope you get the help you need with the night sweats.

Irene, sweet potato chips are a great idea! I will try that. I find regular chips too dry too and I can't have ketchup as it stings but I did try chips and mayo but again was still too dry. I add caramel syrup to my coffee and a big spoonful of sugar, otherwise I can't taste the coffee alone. The worst times are in the evenings when I fancy picking at something nice to eat. I used to have chocolate or cakes/biscuits, now it's rice pudding with a dollop of jam but it all takes so much more effort! Sorry to hear about the episode of blood, perhaps something was a little harsh on your throat which made it bleed. I know my throat is still ever so raw and wounded. If feels as if someone with long nails has scratched down the inside of my throat and the same areas seem to sting most when I get brave and try something a little spicey. It was also very sore when I had a bit of a cold and cough recently.

Gary, I'm sorry to hear of the position you find yourself in because of cancer. None of the treatment is pleasant but it is manageable. It does get depressing at times especially if you are unable to eat but you just have to keep reminding yourself that it won't be like that forever, only three months ago I couldn't ever imagine eating normally again but I'm already tucking into meals. In terms of time off of work etc, I didn't work at all throughout my treatment but that was due to the major operation I had a couple of months before my treatment started and I was told to expect a minimum of four months of recovery time from the surgery alone. However I did meet another person having the same treatment as me and he managed to continue working through most of the six weeks, I believe his job was partly physical. I would suggest putting steps in place to ensure you don't have to work and if you can then its a bonus. You never know how you'll feel from one day to the next and it can be quite exhausting. I know I couldn't have thought about working when it was happening for me, I struggled for three to four days following the chemo each week but everyone is different. Also, try to remember that the recovery for a few weeks afterwards is when you will also need to rest. It all sounds like such a lot to think about in the beginning but as long as you have help and support, it's only a short time of your life that will be disrupted. You'll be back at work and back to normal before you know it! I hope all goes well on Monday, let us know how you get on and please feel free to ask any questions. I'll be thinking of you.

Speak again soon,

Nicola xx

Nic try to pm your name and Ill search. Gary Jones is a common name which is appropriate really for a common chap. Glad you and Vatch on mend. I can eat anything except very spicy. Been lucky thus far. Had scan results. Only 3/4 had downloaded and that bit looked OK. Quack noted chest and shoulder muscle getting back.Still 13 st 7 from 15 5. Cant run as far or fast yet but up to 10 k. Good on a bike as feel light as a feather. Done my UDT refresher last week and could tell that whilst functional still weaker than before. But still here - lite version. Tough to put weight on run most days, cycle weekends, eat like horse. Avoid weights as I dud have tendency to bulk up but may go back. At Harrogate treatment centre w/c 3 nov for another week intensive fuzz, gym, cycling, bleep tests, comp therapies, protein and possibly guiness. There. Mon ti Fri so if anyone fancies trip to Harrogate Ill buy you a beer!

.                yours, Scouse Weakling.

Nic, Im like 2 of u and feel skinny!

Hi all,

Good to hear from you, Nicola. In relation to your question about what to tell people about eating.... I agree that it can get tedious and so my stock answer is that the list of stuff I can't eat is longer that the list of stuff that I can. If I go any further I just tend to say that I can't do anything crunchy, or with spice or black pepper and that I can't take bread or chicken. I then say that I also can't do sweet stuff. By this stage most people have either fallen asleep or walked off, so problem solved.....

I didn't have any ice cream on holiday because I just can't taste it - my wife makes up for me though and if we go to any functions where they dish up puddings or the like, she has mine!

I can associate myself with your weight situation. I used to be just over 12 stone and I'm now 10.2. I put it down to having obviously lost weight during treatment and then the significant change in diet since then, especially no bread, curry or sweet stuff, which has meant that the weight hasn't gone back on. I've now assumed that it won't and so I'm slowly replacing my clothes for smaller sizes - I've gone from a 34" waist to 30" and my suits look huge on me. Because I used to run a lot everyone thought I was skinny in the first place - heaven knows what they think now. I'll really start to worry if I get down to your weight!

In relation to hearing, I did have a slight whistling in my ears but that seems to have gone. Not sure if my hearing has degraded but I haven't noticed any issues. My local Boots was doing free hearing tests so I may get that done out of interest.

Vatch, the face pain is a new one one me. I have had some dental-type pain in various areas of my mouth over the last year but these seem to have cleared up on their own. My neck does feel strange still - I would describe it as a dead, tight or numb feeling around the area of my thyroid gland - it's not an issue for me though.

One slight piece of positive news is that my saliva situation seems to have very slightly improved. I only sip water once or twice at night now as opposed to every 90 minutes or so. Mind you, I only sleep for around 4 to 5 hours on most nights.

Well done, Guzzle, for your exercise routine - you always have been the active one!

Take care everyone.

Simon.

Simon its sometimes a struggle to force myself. Just on train to Birmingham and struggled to get up! Coffee works! Had ringing in ears during treatment but it went. As regards neck tightness found massage helps as do stretches.

Hi All,

Vatch,  I have not heard of anyone having pain after surgury.  They cut into the front of my jaw

then on round the inside of my jawline and then downwards to the bottom of my neck.

The righthand side of my mouth and jaw still feel numb as though I have been to the dentists,

but no pain. I have a lump on my neck where the fluid cannot get past the scar tissue but it

is painless.  I have never had a problem with the PEG, it allows you to get nutrition without

eating.  I never feel hungry and my wife sometimes has to remind me to feed. I used to love

food and wine and my wife is an ace cook.

Simon, like you I lost 2 stone (13 to 11) but I had been working too hard to find the time to take exercise

and now feel better for it. Like you I am deafer since the RT but this may be just be advancing years.

I still sometimes have a dry mouth have a spray I use prior to running. I inhale through my nose to try

to retain moisture in my mouth when running.

Gary, 10K a champion!   When younger and competing I only ran 10miles most days.  Keep it up it

can only do you good. I found I lost a lot of muscle after three weeks in hospital.  My calves were

wrinkled as though I was old. The idea!!

Nic,  Being retired and not having the pressures of a job made it a lot easier for me. I can't imagine

what it must be like to have sole resposibility for a young daughter.   It must be such a relief now that

your future and hers are assured.

Colin

Col, Ten minute miles! Slowly slowly! Just trudged 5.5 miles after travelling back from Brum. Wish I could get all my energy back!

Hi everyone, it's my first day back at work today after everything that's happened this last year. Feeling very nervous! Wish I didn't have to go back,  feel a completely different person now! But at least I'm in a position to be healthy and to be able to work again. A year ago I was all stitched up and not able to talk or eat properly!

Off I go, I'm sure it will be ok.

I will reply to everyone properly and also let you know how I got on.

Speak soon,

Nicola xx

Nicola

An emotional day i bet as you try to get you life back to what it was

I hope it went well,I am sure it did

I've been watching the tv all night ... the stand up to cancer and for reasons i just cant explain I balled my eyes out over all those stories ... just felt i had a close connection with them all and felt what they went through .... even though my circumstance was in no where as bad as theirs

Vatch

Nicola, well done,!

Well done Nicola, hope all goes well for you x

Well done Nicola, hope all goes well for you x

Hi Irene,

Long time no chat.

How are you doing these days love.?

would love to hear.

hugs

Annabel. xx.

Hi Annabel (and all my chatroom pals)

Lovely to hear from you and thanks for asking!  I'm really good thanks apart from still not enjoying my food much, but I think it is still gradually improving and I know I've come a very long way.  My treatment finished end January and I was back at work part-time from April.  I started off at 2 days a week and gradually built it up with a mixture of working from home and the office.  We have a really big event the first weekend of July (Scottish Game Fair at Scone Palace) which is a really hard slog physically with lots of extra hours involved.  I was pretty worried about how I might cope with that. As it turned out I had a recurrent throat infection all through June which took several courses of different antibiotics to shift, and I wasn't well enough to work the whole weekend.  I've been feeling pretty normal since about the end of July, apart from the food issues, so nothing to complain about, although I do about the food!  I hear myself starting to go on about it at great length whenever people ask how the eating is going and realise I must be boring them to death, so I tell myself I must learn to say 'fine thanks'  and then zip it!  Nicola and Fray Bentos, I think this answers a question I saw in an earlier post and forgot to reply to - your response made me laugh Simon as it's exactly what I feel!

I've been meaning to post an update for a while but have been really busy with my elderly parents (90 and 88).  Mum was not long home from hospital after her second artificial hip dislocated, then Dad had a week in Ninewells after a nasty fall and bang to the head, home for a week, then has been in his local 'cottage hospital' GP unit for the past 3 weeks.  He's much much better, but getting increasingly frail.  So lots of hospital visiting, occasional overnight stays with Mum.  Glad I have two sisters to share it with but one of them is now away to Ireland to visit her son and family so it's going to be another really busy week.  Hopefully Dad will be back home soon, just waiting on getting morning and bedtime care package back in place for them.

How are things with you Annabel?  I hope you're continuing to get good feedback at your checkups?

Well it hadn't clicked until I came on here to read the latest updates that it is a year today that I had my first operation to remove the lump from my neck which started the whole thing.  At that stage it was thought to be in my parotid gland and 95% likely to be benign, so it wasn't until lab results came back that I got my diagnosis on Hallowe'en which will probably stick in my mind forever.

So many of us had a pretty rotten Christmas last year so hope everyone is looking forward to making up for it this year.

This forum was such tremendous support for me during the difficult days and it was you Annabel who recommended that wonderful book 'in your face' to me and Nicola.  It helped me a lot and I passed it on to one of my chemo-buddies back in January.   I've just re-read some earlier posts and it's great to see how we have all moved on.

Nicola - it was great to see your photos and put a face to your name.  I tried uploading mine but had problems with file sizes and cropping, might have another go now that I have a bit of spare time on my hands.  Meantime, if any of you are on Facebook and would like to say hello, you should be able to find me by searching for Irene Johnston (nee Murray) from Bridge of Earn.  My current profile photos are me and my daughter in pirate fancy-dress and a big group of girls in hill-walking gear (Amy and her mates who climbed Ben Nevis for our local hospital's cancer campaign last month).

Gary (Guzzle) I think I found your page but wasn't 100% sure, I will send a PM in a minute and hopefully you will confirm it's you!

Best wishes to everybody - keep well.

Irene x

PS - been feelin a bit 'maudlin' today, reflecting on the past year which prompted me to try and hook up again with my 'chemo-buddy' Donna who also read the 'In Your Face' book and found it really uplifting after experiencing tongue reconstruction.  We sat together in chemo a few times, exchanged emails and I visited her when she was admitted to the ward at the same time as me.  I feel like I've been kicked in the stomach as I've just found out via google and facebook that she passed away back in April.  Just feeling gutted.  Have others had this experience?  I made friends with two other lovely ladies when I was admitted for a few nights with extreme sickness/dehydration, both of whom lost their fight shortly afterwards.  I will never forget them though.  Feeling very sad. x

Access 14 from branchial cystvthread is ill. He is a lovely person. Hurts. G.

So sorry to hear that Gary.  I followed the branchial cyst thread to start with as there was a suggestion that's what mine might have been.  I remember Access as a regular contributor, always supporting others.

Irene you did indeed find me and succeed where Nic failed!

Hi Irene,

Lovely to read your update. Wow, it sounds as if you're being kept busy with work and taking care of your parents, and it's good to read that you're feeling pretty normal now. Hope you're still remembering to listen to your body though and rest when you need to!

Sorry to read your second post and how sad you're feeling. I often wonder about some of the people I've come into contact with over the months, but I never exchanged contact details with anyone. Seeing the news about Lynda Bellingham has really brought my mood down today. This b****y disease!!!

Thank goodness for this forum where we can share, rant and offload!

I wholeheartedly agree with your comment about making this Christmas a good one! Next week is half term, so I may even start a bit of shopping (or at least writing a list!)

Take care Irene, sending you a hug, Jo xx

Lovely to hear from you Jo.  I dont know what it is, maybe just the anniversary coming round but I've just been feeling so low these past few days even though I am getting good checkup results. After finding out my chemo-pal lost her battle several months ago (I somehow felt I should have known that!) I was just gutted to hear from Gary (Guzzle) that Access (Branchial cyst thread) is in palliative care and today Lynda Bellingham's story...  Sending you a big hug back and enjoy that Christmas shopping (or list writing!).   The value of this forum is quite immeasurable! Love to all x

Sorry to hijack this thread, but it seems to be quite active.

I have read the first few pages, some of it scared me quite a bit but I wanted to know how others have dealt with this.

I am a 23 year old male and today was diagnosed with tongue cancer.

I went to my GP about a month ago, as I had a lump within my tongue (at the front on the left, not on the top) and a small white head as part of the lump grew under my tongue. I thought it was nothing but my mum made me go and get it checked. GP asked if I wanted to wait a few weeks to see if it went, I did, but it did not go. It did not get worse either.

So I was sent to hospital and the doctor said I needed a biopsy.

Today it came back as cancer. Myself and the doctor are flabigasted that it is, I do not smoke, or drink. And its not HPV.

He said its becoming alot more common amoung the young.

They think at the moment its in a very early stage T1, and that it does not look like it has spread anywhere, they did CT scans of my lungs and throat and mouth just in case.

They also think it can be removed easily with a laser and there will not be any real difference in my tongue.

However I am getting pains in my neck, they say its because the cancer lump in on the same nurve, hopefully they are right.

After reading this thread I consider myself very lucky as it could of been a lot worse, I am just trying to work out what could of caused it. There must be a reason why.

I am getting the scan results in a few days I will be quite worried until then.

The NHS has been very quick and efficent. I had my result within a week, I am so glad it was caught early but it shows how important it is for tests to be run ASAP.

Just wanted to get this of my chest and wish everyone here the best of luck.

Hi Roz Dog,

I'm so very sorry to hear of your shocking news and I wanted to offer my support. It's a very scary time and its all such a lot to take in, I remember those early days well and it's difficult to think of anything else but please take some reassurance form me. You will beat this, it's going to be a difficult and unpleasant time in the short term but you will be ok. Only a year ago I was recovering from similar surgery and now I'm doing great and back at work, eating, speaking etc. everyone says they would never have known I'd gone through such an awful time by looking at me now. Keep us updated, there's lots of advice we can all give as well as support and feel free to ask any questions.

I don't have any answers as to why it happened to me either, a lifelong non smoker, but I believe stress played a big part. I've always burnt the candle at both ends, rushing about, never resting, always worrying, stressed! Now I take life at a much slower pace. As for the pain you're experiencing, I too had pain in my ear/jaw/neck and I was told it was "referred" pain as it's all connected. The pain was worse following the biopsy, a tongue biopsy is pretty brutal!

Until you get your scan results I hope you can take comfort from all of us on here, we have all come out the other side. I'm so very glad you got your tongue checked when you did.

Will look forward to hearing from you,

Nicola