Hi Mary,

Welcome. It is nice to hear such a positive first posting considering what you have been through.

Like everyone here I can only speak from my own experience.  I think that the radiotherapy is

no problem. I had 42 sessions and apart from something like mild sunburn had no ill effects at all.

When they do it you have no sensaton of any kind - they could be taking a slow photograph.

The chemo will depend on what they give you. I was lucky and felt almost no discomfort or nausea.

I didn't lose my hair either which upset my balding friends.

I still have gunge in throat and mouth after nearly 8 years.  I have about  35cc of hot coffee about

4 times a day which thins it so I can cough it up.  The doctor warned me against attempting to drink but if I'm careful I only have a coughing fit now and then.  I also use listerine twice a day. I am very careful not

to let it get to my throat, only my mouth.

Keep up the positive attitude and you will be fine.

Good luck

Colin

Hi all

i would love to meet you all but we are away on holiday in April for two weeks and then, on the day you are meeting, it's a friends 40th so I can't come. Hope you have a great time.

my brain op is being brought forward as i had a headache for 15 days. I go next week to put the wheels in motion. Eek!

hope everyone is continuing to improve.

debbie

x

Hi Mary,

The normal time for RT seems to be about 5 to 6 weeks. That is 32 sessions 1 a day for 5 days a week.

I had 6 chemos at 1 per week. The chemo took about 3 hours on 2 successive bags of whatever,

via a drip feed.

I foregot to mention I have a lymphoedema. I massage it and it remains unchanged(ie. not larger)

I understand this is fairly normal where lymph nodes are removed from the neck. I have to take

pills for my thyroid which also suffered from thr RT, but this is no big deal.

I lost about 60%of my tongue but there was never a suggestion of a graft. this was probably because

they told me up front that I would not eat or speak again. I do a good impression of the village idiot

and my wife picks up most of it if she listens carefully.

Rubber and clingfilm - the mind boggles. I used to use film dressings at first but since I have had

a button type PEG I don't bother. (The other scars had healed by then)

I hope the news will be good on Monday and your fears allayed.

Colin

Hi Mary

Just wanted to say hello and 'welcome' to this site.  I can't stress enough how important it has been to me and how much it helped when I was going through my chemo and radiotherapy.  

It's really good to know that reading our posts has helped you cope with your diagnosis and possible further treatment.  If you do need to have chemo/RT, you will already have gathered that it can affect us all in different ways.  My cancer started in my tonsil but I had no idea there was a problem until I found a lump in my neck because it had spread to a lymph node.  I had surgery to remove that and later the tonsil but no tongue surgery or neck dissection.   I did have follow-up treatment though - 6 weeks of daily RT with weekly chemo (Cisplatin) which appears to be pretty standard.  As Colin has explained, you don't feel a thing during RT and I only had a very short spell towards the end where the skin on my neck broke down, but it healed very quickly.  I did have quite a few problems with sickness though.  I remember being told if you were prone to travel sickness or had sickness during pregnancy, then you might fare worse - and both applied to me!  However I'm delighted to report that all this is now a distant memory.  I am almost 14 months post treatment and life is pretty much back to normal.  I too have a bit of a 'dewlap' due to lymphoedema and I my eating habits have changed a bit, but not too much to complain about otherwise.

I've also read your second post and was really impressed by your resourcefulness in the shower!  You must have been in the Guides and learned the art of improvisation or maybe its just good Scottish common sense ;)  Sounds to me like you have a first-class positive attitude to this, which I am convinced really does help, as well as trying to hang on to your sense of humour!  

Can't really give you any tips on keeping your mouth fresh as I tried all sorts and nothing really worked.  I did for a while suck Ricola herbal sweets which were the best option I could find.  I still have a bit of a problem with that but I do recall it was a lot worse when I was on lots of Ensure drinks/milk and PEG feeding.  I also get recurrent bouts of thrush so it might be worth getting checked for that?

Wishing you all the best for your appointment on Monday.  Fingers crossed no more treatment needed, but if it is, you've come to the right place to ask questions, sound off and get good support.  Keep in touch.

Best wishes from Irene (Perth)

Hi Debbie

Great to hear from you.  Sorry you can't join us next month but we'll toast all our Cancerchat friends and report back afterwards.

The thought of your operation must be pretty daunting (understatement) but it's just another hurdle to cross after everything else you've been through and you will get over this one too.  

Keep in touch. 

Love Irene x

Hi Colin

Hope this post doesn't appear twice!  It reaffirms your comments on the new site with which I wholeheartedly agree so it can't be senility can it?!;)  I was 100% sure I had already replied to your post but no sign of it now!

Anyway, lovely to hear from you.  Sorry you can't join us next month but we will raise a glass to all our chatroom pals.

Best wishes

Irene

hello there, im gazz and im nearly 2 years post op now after having reconstructive surgery for stage 5 of tongue cancer,i was told that it was near impossible to know what stage the cancer was until they "went in  " as it was put ,the original plan was to take a graft from the inside of my wrist to rebuild my tongue but ended up with an 18 inch scar the top of my right leg ! the success rate of this type of cancer is fasr better nowdays than it was several years ago , although my taste has not returned (down to the radiotherapy) and being made deaf in the right ear (the radiotherapy again) i am leading a near normal life ,its very important to keep positive and i found telling my friends a massive help , there are a few forums aand youtube users who hqve gone though the same and its welcoming to hear how well they have coped.squamous cell carcinoma is the medical name for tongue cancer as im sure has already been mentioned to you ,if you need any advice on what the normal plan of action is after your mri/pet scan feel free to contact me ,good luck x 

Dear Irene and Gazz,

Many thanks for your informative comments to my posts. I am now 3 weeks post op and the task is now finding things I can eat. I agree with you Irene, I think the gunge is because I am on two bottles of Ensure a day and I also drink milk. Maybe wrong choice. I came out of hospital with a big supply of Ensure and then there was a knock at the door today and a big box of it was delivered. I made the mistake tonight of having some chicken soup (Heinz). The soup went down well but left all the little bits of chicken in my mouth. Husband being despatched tomorrow to pick up a strainer for me. Does anyone have the names of any books I could buy regarding blending nutritious foods as I have got a food processor/blender. I was looking on Amazon but was wondering if anyone could recommend any they have used.

With having had 9/10ths of my tongue removed and my lymph nodes and a reconstruction done, I can't feel anything on the reconstruction. The first soup I had in hospital was, I thought, cool as I had added a cup of cold milk to it. Not so, didn't realise until my Consultant came round the next morning that I had a big blister on my reconstruction and he was not well pleased||| Much more careful now. I think I have accepted that I will never eat the same way again but I'm determined to attack this new way of eating and get some variety into my diet.

I've got this cockeyed idea that if I look quite fit when I go to my MDT meeting on Monday, everything will be ok. Who am I kidding???? I've got a 10" wound up my arm where they pinched an artery and both that and my two skin grafts are healing nicely. At least the metal necklace has gone now.

It is such an inspiration to read of people on this site who have been worse than me and it has helped me so much. Thankyou to you all.

Mary (Scotland)

Hi Guys,

I hope you are all well.

I am roz_dog just had a name change.:)

Summer is approaching so we can say goodbye to this cold weather. Can't wait to see the sun and going for a walk in the park.

I am still around on here, I pop up every now and then when I see a topic I can help on.