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Tongue Cancer - Diagnosed two days ago

Nicola2209
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Hi, I am a 32 year old single mum to my two year old daughter and I found out two days ago that I have tongue cancer.  I'm waiting for an appointment for an MRI scan and a CT scan which should hopefully be within the next few days and this can find out if the cancer has spread.  I then have to have an appointment to discuss a treatment plan but I have already been told that this will involve cutting out the lump in my tongue and a neck dissection to remove Lymph nodes.

It's all such a lot to take in and I'm trying to come to terms with the fact that in a few weeks time my life will never be the same again.  I have read some horrific stories about what I have to come and I am willing to face any of it so long as I stay alive for the sake of my daughter.  I have only told my parents and one friend so far, no piont telling everyone until I have more facts after the scans but I'm concerned at how far the cancer could have spread.  I have had this painful lump on my tongue for six months but the doctors kept giving me prescripotions for other things which has delayed diagnisis.  I have also had pain in my throat and more recently I've noticed ear ache and jaw ache and neck pain.  I'm trying to stay positive until I know more information from the scans but I know I will crumble if it has spread beyond repair.

From reading stories from others on here and other websites, I'm a little confused that I haven't yet been told what stage the cancer is at.  Isn't that something that could be identified from my biopsy?  How could the doctor be so sure that I will need a neck dissection before knowing what stage it's at?

None of this has come of much of a surprise.  I googled my symptoms of a persistent ulcer back in April, before I first went to the doctor and was alarmed to see the word "cancer" everywhere I looked.  I had all the symptoms but was just hoping I was wrong.  The first two doctors I saw about this reassured me that it was nothing more sinister than an ulcer, which put my mind at rest a little, how wrong were they?!  I am just glad that I stayed persistent and kept going back to the doctor about it.  I don't think they treated it as an urgency as I don't fit in with the usual risk factors, I've never smoked, I hardly drink and I'm not in the right age bracket.  I'm now feeling annoyed at the waiting game.  I want to know when the scan will be.

It helps to come on here and read other threads but I still don't think it has fully sunk in yet but when it does, positivity for the sake of my little girl will just have to get me through.  I would love to keep hearing stories from others or any advice would be greatly received.

Nicola xx

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    hi nicola. can you give me some advice please. i was diagnosed with squamous cell carcinoma tounge base. july 23rd 2014. ive had 65 gy in fractions 31st oct 2014 i could only manage 1 cycle cistplatin as it made me very ill (chemo). i have a freeka peg. im trying to eat what i can. ive lost nearly 4 1/2 stone. diagnosis ct4 n2b. its affecting my mental health. hope you are ok. x

  • Offline in reply to zoe
    Simon Smith . You OK mate! Not heard from you!
  • Offline in reply to Guzzle

    Hi Guzzle

    My apologies for not being about much lately - I hope that you and the cancer-crowd are doing well. Looking through the various posts it seems that everyone is making progress - albeit some quicker than others. How's Nicola?

    This site is still a challenge to use on my PC for some reason - not nearly as good as before someone 'improved' it. Seems to be full of bugs and glitches (bit like me really).

    I've just returned from a week in Cuba. It really is a wonderful place and this was my first trip outside of Europe since being diagnosed way back in May 2013. Second trip to Cuba and went for the big 'all inclusive' experience this time - the thinking was that with such a huge buffet style meal to chose from at each meal time I would be able to experiment and try some new foods to see what works and what doesn't. Pleased to report that it was worthwhile doing this and I did find some additional foods to start eating back home. Pumpkin (or squash as it gets calling in the UK) worked really well for me - mashed or just well boiled with other veg. Papaya fruit was also lovely. I won't bore you will all the other stuff I tried unless anyone is really interested.

    For those that are still suffering with reduced saliva - keep patient. My situation is still improving very slowly and I'm now 17 months post-treatment. My saliva is obviously still reduced on what it was pre-treatment but it is slightly better than three months ago. Can't really do bread or chips but I did manage some poached eggs on small pieces of toast.

    I even had red wine with dinner - wow, that's real progress!

    Take care everyone - you really are a wonderful bunch of people!

    Simon XX

      

     

      

     

  • Offline in reply to SimonSmith
    Hello everyone and happy new year! Sorry for the late post but I did type a lengthy reply recent,y but this darn new website crashed! I wish it hasn't of been"improved" it worked much better before!! Firstly, Roz Dog, soooooo pleased to hear you can now put this all behind you! Fantastic news! You did really well to get through it all with such a positive attitude, true inspiration! I'm also pleased to of been able to help/advise. 2015 will only get better for you now. I hope you're healing well and able to continue with life as best you can. Simon, I'm fine thank you, had some dental issues just before Christmas so I didn't fully enjoy all food and couldn't have any wine but was still a MASSIVE improvement on last year. My dentist felt guilty that I was on anti biotics over Christmas as they were the type that come with a strictly no alcohol rule but I assured her it was fine as compared to last year, no wine was no big deal! I did lose some weight however, as chewing was difficult and I had some pain due to the tooth extraction but I think I'm back up to 6 stone again although still a stone lighter than my pre cancer days. I'm pretty much up to my full working week now as well after a long phased return, I still suffer with fatigue a lot and I'm absolutely shattered at the end of the week but I'm getting there. I'm booking odd days here and there of holiday so I can have a bit of time to relax now and then. Sorry to hear of the night sweats, I hope the medication can sort it although probably not something you're over the moon about taking. Glad to hear you've had a lovely holiday, that's a good way to try out new food, I'm very jealous! Vatch amd Irene have recently been away too. How did you find travel insurance premiums? I hope you feel relaxed and ready for 2015. It's crazy to think where we were a year ago! Guzzle, how's it going? We keep on Foch on FB now but just wanted to say hi on here too! Irene too, I hope you had a lovely holiday in Egypt and the food was ok for you. How did you find it? Hard to imagine now what you were going through a year ago. How time flies. Did you manage tofindsomegood travel insurance pat cancer? Speak soon everyone, Nicola xx
  • Offline in reply to zoe
    Hi Zoe, I'm sorry to hear you have been struggling a bit, I think I replied to your previous post? The mental impact of not being able to eat is huge and I don't even think my cancer nurses/oncologist/consultant could comprehend just how hard it is. What sort of things are you managing? I started on small sips of tea and coffee although they did not taste as I remembered (they do now) then I progressed onto very runny porridge or soup but it had to cool down a lot as my mouth is now extra sensitive to hot and cold. Then I moved onto scrambled eggs and omelettes and fried eggs before I was confident enough try proper solids. Sausages was one of the first things I enjoyed when I got to the solid stage as they are quite soft and don't take quite as much chewing, I also ate a lot of lasagnes! Then anything with gravy such as cottage pie, roast dinners, beef stew (but I didn't eat the beef). I also snacked on yoghurts, angel delight, rich pudding with jam, jelly with cream and custard. I was told to eat all the naughty foods so I could gain weight and I added grated cheese and cream to my scrambled eggs and soup for extra calories. I eat pretty normally now although there is a lot I can't eat and probably never will again. I'd say it took me nine months to get the confidence and ability to eat as well as I do now but I was eating fairly well by 6 months after treatment ended. I hope this helps and gives some guidance with foods. I had a very good dietician, have you got any support like that? Please keep in touch and I'll help with any tips that I can or feel free to private message me. Wishing you all the best, Nicola xx
  • Offline in reply to Nicola2209

    trying to eat what i can. im suffering with deppresion quite bad.feeling very low in mood.

  • Offline in reply to zoe
    Hi all I hope yu are all well So Simon, Debbie,Nicola Irene and Guzzle I hope it's going well Simon good to hear from you and where did you go in Cuba Im off there with the family in July Iv'e just been away, spent a week on the beach on an all inclusive in Egypt.I ate loads but only put on a pound which i have now lost, but although i can now eat most things (even pizza, bread and chips with the help of a lot of liquid) I cant say that i can taste it all, some foods i can taste at about 90% and some are only 30% .. its all over over the place. Since coming back from holiday though my ears have been playing me up, they keep popping ike on a plane, I think its to do with some of the snorkelling i did, perhaps all that radiation treatment has messed about with my tubes... who knows. Well it sounds like some of us are getting there, but its slow. Zoe sorry to hear things are not going so well for you, but i hope they improve with time. Nicola mentioned about meeting up sometime, it will be nice to do. so without hslling everyone in to doing it ... i ve mentioned it as a starter for ten. Oh and Guzzle and Know you are a Mersey man but not sure if you are a blue or red ... if a red shame we wont be meeting you at Wembley A few of us have now got onto to facebook, primariliy i think becuase we have got a bit fed up with this site ... which is a shame as we can all see what we are writing here where as facebook is more one to one. Anyway I will percivere with both Catch Up Soon Vatch
  • Offline in reply to Vatch

    Grr! I've just been typing for about half an hour and lost the lot :confused:  Almost burnt a quiche in the oven too - I am easily engrossed/distracted when I sit at the computer.  Good job hubby's nose was on the case!

    Big hello to all the gang - Nicola, Simon (always Fray Bentos to me), Guzzle, Vatch, Jo, Debbie, Annabel and newbies RozDog and Zoe (and Chris if you're checking in from the Orapharynx thread). Now I'm bound to have forgotten a few friends, so apologies in advance, but sending my best wishes to you all. It's great to catch up with you and read how well we are all doing.

    Zoe and Chris, I know it's different for you at the moment, but I hope you will draw encouragement from others' experiences.  I can't stress enough how valuable I found this site when I was at my lowest ebb. While some have had it far harder than others, most of us have shared very similar experiences in terms of treatment and we have all had periods of feeling very low.  I found it a tremendous source of support and we are all happy to listen to you sound off as well as give advice/tips and sometimes even have a laugh/joke :D (are these emoticons working?).  So hang on in there girls, you will get there too.  

    A quick update from me...  just back from a lovely minibreak in Portugal (Nic, it was Vatch who went to Egypt; we were there several years ago, so you may have seen some old photos on my FB).  I felt a bit weird about going back, because it was there on our last holiday (Aug 2013) that I discovered the lump on my neck which was the first sign something was wrong.  However I didn't give it a second thought once we got there and had 2.5 glorious days with our friends - cloudless skies and temperatures of 17/18.  We even managed a trip into Spain which was not bad going on such a short trip.  I am eating well these days, but did struggle a bit with the food there, as I thought I might. Mostly barbequed/grilled meat and salads, so all a bit dry for me.  At home it's mostly stews and casseroles, but like you Nicola I don't eat much of the meat, just lap up the gravy and veggies.  My tastebuds are definitely improving though.  I'm enjoying a lot more flavours (still not chocolate though) and can even manage a mild (korma) curry - well mostly sauce and rice.  I took my own weetabix over because that's all I ever have for breakfast - nice and sloppy with hot milk and sugar.  I find it strange that I don't get bored of it as I used to eat a wide variety of cereals, toast, eggs, occasional bacon roll at weekends and 'the works' on holidays, but I'm happy to stick with the weetabix now.  I did try the instant oats but don't enjoy them so much.  I'm a bit the same way with trifle - eat it till it's coming out my ears!  

    Simon and Vatch, glad you enjoyed Cuba and Egypt respectively and had good experiences with food. Sorry the taste isn't quite right for you yet Gary, but you are getting there!  Simon, interesting re squash/pumpkin.  I haven't tried them but I am enjoying sweet potatoes so I guess they will go down well with me too.

    Zoe you will have gathered by now that we are all a bit obsessed with food-chat!  I hope this doesn't get you down even more.  What I hope it does instead is to reassure you (and Chris if you are checking in) that there are better days just around the corner.  It's a long, slow journey, but persevere and you will get there too.

    Finally a word to Roz Dog.  I thought I had already congratulated you on your fantastic news (I was so chuffed for you!) but can't see it on the thread, so I'm blaming the 'new look' website and its many glitches again.  Hope you are out and about having fun rather than chatting with us old fogies but good to hear that you will stay in touch and try and help others, especially youngsters, who have the misfortune to experience cancer.

    Love to all, Irene x

    PS - Hope we might manage that get-together sometime this year Guzzle?  Pity we are all so widespread.  I guess you and I are furthest Nicola, I just googled about 420 miles between Bristol and Perth :(

     

     

  • Offline in reply to isjheatherlea11

    Hi Irene and Vatch (and to all my other cancer buddies),

    Heather - I do share your frustrations with this site. Maybe someone will read this and do something to 'improve' the 'improvements'. Do give pumpkin a go - they had it in plentiful supply at most mealtimes in Cuba - either cooked in butter and served like sliced potatoes, or mashed (I guess with butter or cream), or as a lovely thick puree, or even as creamy croquette-type thingy's. Every time it was absolutely delicious and I ate tons of the stuff. In fact I ate tons of everything - about three different types of omelette for breakfast followed by scrambled egg - followed by poached eggs! Like Vatch, despite eating like a mad man for 7 days I only managed to put on 1 pound and I lost that immediately after returning home.

    Vatch - I've been to Cuba twice and each time it was brilliant. The first time we went to Havana which is a truly wonderful experience. Full of character and charm with old 50s American cars everywhere and not a MacDonald's or KFC in sight. Get yourself there quickly though because the US trade embargo is likely to go and then I fear there will be big changes. This time we went to an all inclusive beach resort near Holguin and in many respects we could have been anywhere in the Caribbean - it was still great  though with a faultless climate and lovely people. It's one of those places we would definitely go back to. Keep positive with the taste and eating, mate - I'm still improving 15 months post treatment.

    Take care everyone.

     

    Simon (aka Fray Bentos) XX 

       

     

     

  • Offline in reply to SimonSmith
    Hi there all SImon to update you I think they are now doing Frey Bentos in snack pots, i think they call them Thunderpots or something like that ... thunderpots sound a bit more super hero for aan alias i think Glad you had a good time away and yes we are getting into Cuba before the Ronald gets there, although all that has happened at the moment is that the US have relaxed some of the duty that the Americans can bring back, there is still 13 questions they have to pass before they are grated entry to Cuba, so I think I will be safe come July.....Sorry If I have offended anyone across the pond there is was not meant ... well ...no it was not Sounds as if you had a great time though Simon, we are up north in Varedero then a few days in Havana, hence getting back to the salsa dancing, although i still don't think that I will crack it by then. I think we are all still having problems with our taste and what we can eat and there are still some foods we can't eat such as chocolate, which i don't mind and from someone who loved sweet food, I just have no passion for it now. I am still trying to get fit but am seeing a useless physio at the moment who appears to have her eyelids sown up as whenever she looks me in the face her eyes are closed...anyway she is crap so I have a meeting with my team on the 11th to see what can be done ... if not i have had enough holding back im getting out there on my bike and i will do it myself.. i need to be getting back and playing football and squash, enough of this having stuff done for me ,,, i need the strength back to do it myself ,,,,, sorry rant over peace has returned whilst i write this whilst nebulising ... yep i still wake up in the morning with a horrible throat, full of nasty stuff ... oh and my voicce is still only at 25% of its normal function. First thing in the morning i sound like Kate Winslett in Titanic ... you know the bit when it's sunk and she is floating on a pice of wood and shouts for help when a row boat passes her "h..e.....l........p.............!" in a quiet mousey voice. Anyway enough rambles form me. have a good week everyone ... and what do we all think about Perth?

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