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

Hi all,

 Am just back from States.  Afraid I can't make April; perhaps another time.

I also have the problem that I am unable to eat at all, so a meal would be awkward.

I still find this new format not to my liking. I think it was not designed by DP professionals

in concert with the users. I find it less than intuitive. Perhaps senility is my problem?

Regards

Colin

Hello, this is my first posting on this site. I have been reading every post so far and bought the book 'In Your Face' which was mentioned and I must say it was an inspirational book and gave me an insight into what was in front of me.

I was just discharged from hospital on Friday after nearly three weeks. I had a large tumour on my tongue so I had 9/10th of my tongue removed and also my lymph nodes. I had a reconstruction usng an artery from my arm and then a skin graft. I then had a skin graft from my tummy to my arm. Everyone is saying how well I have done in this short period as people can understand me whenI speak through my trachy. I go back next Monday 23rd for my DMT meeting to see if I will need Chemo/Radiotherapy. I think I am more worried about that than I was about the op.

My problem at the moment is: I am on a Texture C diet, moving up to a Texture D but I find I always feel my mouth is loaded with creamy gunge. Is there anything I can use to keep my mouth fresh, I do have an antiseptic mouth wash I'm using. I'm wondering if it is just this alien being that is my tongue now.

Any advice would be very much appreciated as you have all been an inspiration to me prior to my op and since my op. At least when my Consultat was explaining what had to be done I understood it more after reading all the postings on this site.

I'm just so grateful to have my life back and want to do everything in my power to make it more comfortable. Many thanks for listening to me. Mary (Scotland)

 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

Thankyou Colin for your reply. Unfortunately I don't like coffee but I will try the mouth wash. I was wondering if it was those complan drinks I have been having and I've also been drinking milk. Time for a rethink||| I did try some fizzy orange but a no no.

Thankyou also for comments about your radiotherapy. I had heard some horrendous stories regarding radiotherapy to the mouth. At least your experience gives me a little hope. How long does chemo and radiotherapy last? We are hoping to go on a cruise at the end of July but have until the end of April before making the final decision. I think we, cancer sufferers are a very resolute lot. I was able to have a shower this morning by making a cling film scarf to put round my neck to protect my trachy and then I cut the fingers off a rubber glove and put it on upside down over the dressings of my skin graft on my arm. Hey presto| a beautiful shower was had. So, as you can see your post has cheered me up no end and I'll just have to wait until Monday now to find out the next step forward.

Thanks again

Mary

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

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.

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.