Hello all,

What a great site! I've read all messages with compassion for each and every one of you and found comfort in knowing I am not alone with my fears. Glad to see Dr Joshi on here to help us - thank you Doc.

After a 12 hour op on 4 June I was in hospital for 6 weeks (longer than expected due to set backs)and have been home now for around 3 weeks.
My op was to remove a tumour from my central lower jaw bone and replace with a bone graft from hip. The surgeons say """flap""" but not sure what that really means (thicko me!). They also carried out a full neck dissection to remove lymph nodes both sides and this area is feeling tighter and tighter each day - not pleasant!

Numerous tests were carried out and proved negative but then I was called back to the hospital suddenly on 4th August to be told some devasting news. Analysis of the tumour the surgeon cut out on 4 June showed cancerous cells are still present each side of the margins in my lower jaw. I was very much against radiotherapy but have now decided I must have it to have any hope of getting rid of these cancerous cells, especially as the cancer has been described as """aggressive""". Radiotherapy starts on 21 August ( at least the preparation does).

Although I have discussed the pros and cons of radiotherapy with the oncologist, I am still dreading it especially as they are talking about 6 weeks instead of the original 4 weeks. Will I need a PEG tube I wonder?!

I am on pureed food right now and drinking through a straw as my mouth is still not showing any signs of closing up. In fact, I look so gormless, and with 2 large lumps on neck (scar tissue), I am afraid to go out and face the world. The constant dribbling (have to wear a bib) also drives me mad. Hopefully, things will improve after radiotherapy when I get some bottom teeth implanted. I understand my salivary glands will dry up anyway (so no more dribbling)and that people adjust pretty well to that.

My neck and lower jaw frm ear to ear are feeling tighter and tighter each day, and this really worries me as I feel like I'm being strangled. There's a metal plate in my lower jaw which perhaps adds to the weight and discomfort. Vinod (if I may call you that) - your comments would be much appreciated on that.

Re-reading this makes me sound so very negative. Yes, I am scared but I am also a pretty positive, cheerful person and still having many laughs with loving friends and family who have all been brilliant.

I told hubby today I will venture out tomorrow (weather permitting) even if it's just to the local supermarket. My walking is good, despite a severe limp.

Thank you for reading this and my love and best wishes to all of you - I will be following your progress with interest.

From now on I will post on the general message board.

Steph
(Age 64, retired, married to a loving and very supportive husband Roy).

Hello Steph

Great to see you join the board and thanks for your story. I will post a reply soon.

Best wishes
Vinod :coffee:

Hello Steph

Glad you found the website to be of comfort. It is the members, like you, who share their experiences and give their compasion that will make this site a caring community of friends.

Regarding the radiotherapy - it should knock out the remaing cancer cells. Being positive about it helps. Read Pauline's Diary of her radiotherapy treatment for an insight.

Focus on keeping your remaining teeth. Read about the measures you need to take to minimise complications . Your remaining teeth will help anchor a prostheses to replace your missing teeth. Have a look at the patient treatment slides in the online presentation to get an idea. It may be that dental implants can't be placed in the bone after it is subjected to radiotherapy.

Yiou may be better off with a PEG to ensure adequate nourishment. Perhaps, Pauline, Paul and the other members could advise better than I can.

Perhaps my comments on scar tightness to Clare will be of help to you, too. You will eventually get used to the weight of the metal and the discomfort should ease off with time. Speak to your surgeon about this.

Do go out of the house - it will make you feel better. It is quite pleasant today , so do get out if you can.

Take care and best of luck.
Best wishes
Vinod :coffee:

Thank you Vinod for finding time to send your pm (I know how busy you must be). Your comments and the various links given were much appreciated.

I now have MRSA in a persistent wound behind my ear (original drain site I think) but hoping the antibiotics will be strong enough to kill it. I also had MRSA in hospital in my hip where the bone graft came from which is why I was in there for 6 weeks instead of 2 weeks.

To relieve the tightness across my neck, I took your advice and have started aromatherapy massage at the North Devon hospice ( also recommended by the Macmillan nurse). So far - no difference but I musn't expect miracles after just 1 session!

From now on I'll post on the General Message Board although I'm not on the computer much these days especially with radiotherapy starting next Friday.

I am following the progress of Paul and others with interest.

Keep up the good work Vinod.

Steph

Hi Steph

Sorry to hear you are having to deal with such a lot of difficulties right now.

You asked about a PEG.
I have not had a PEG, but I had a nasal tube put in about 4 weeks after radiotherapy finished. I resisted and resisted having one during treatment. Eventually I was unable to drink even water and had lost about a stone in a week on top of 2 other stones earlier, so asked my husband to take me to the hospital.

This was only six days after a post radio check up and having made a great effort to go to the hospital appointment gave a good performance of appearing fine, only to go straight home to collapse into my bed!!!

However when I arrived at 9 am a few days later for the nasal tube the consultant merely said 'we've been expecting you....'and I was in hospital for a week. The nutrition made me feel so much better within 48 hours. It seems it is unusual for patients not to need some form of extra special feeding during radio. During radio I did one day succumb to agreeing to going in for nasal feeding - as luck would have it they had no bed and I said I would manage and they agreed as I was still managing a teaplate of porridge and drinking some milk. It was probably a bad move not to demand a bed as the lack of nutrition during radio probably slowed down my later recovery.

I was told that nasal feeding is more natural than the PEG as liquid feed goes down the same way as the natural way. If you have a Peg there is an open wound I believe, which might not be the best thing as you seem already susceptible to this hospital bug. So why not ask for a nasal tube. Anyway you need to consult with them about this and look up internet info to know the options.
It is a bit like having the scope put down your nose and is bearable. I had tears, but breathed well and it was all over soon. I had the nasal tube in for about five and half weeks. I removed it three days before my appointment to have the tube replaced as agreed with my consultant and made myself eat some food. I hated the food, but I did not want the tube back, so told them that and they were happy to let me continue on table foods.

I could only eat a few things such as tinned rice pudding with extra milk added to make it soupy. But it was better than the tube. I can only say I think milk kept me alive. Now I can eat many more types of foods as long as they are small amounts with lots of cups of tea to push it down.

As for the saliva - it will disappear with radiotherapy to this area. 10 months later I still have very little saliva and carry Evian with me in a pint bottle everywhere for sips.

In total I have lost 62 pounds weight, but been weight stable since Easter.
I wake most mornings with phlegm and a swollen front neck, but think this is the lymphoedema and it soon goes if I massage the neck down with my hands for a few minutes. The consultant says it is fluid in the tissues.

There will be problems after treatment, but being alive is not one of them. I can live with food being a permanent disappointment to be alive.

I wish you luck Steph and my best tip is to start drinking water early in the day during radiotherapy. About 5 or 6 pints helps a lot.

Hi

I read all about you brave people and how you accept all this terribe; side effect and treatment I know i would ahave been okay if had not been for the neck dissection which i did not need all clearb you suffer terrible things so stoically i have nothing but adfmiration for you all its a stupid quwstion to ask but do any of you regret having the treatment like myself who had nil symptoms thats why i cannot accept whats happened. but i salute youall in your bravery if i had half of what you are going through i think i would have you know what i mean but you are an inspriation they talk about breast cancer sufferes and that is awful buts its nothing to what you people are enduring

Hi Steph - to my shame I've only just read your postings.

You certainly sound to be having a rough time, but I think you're probably coming through it OK. I'm one of these people who think your mental attitude can be a great help (or hinderance).

You mentioned about having a PEG. Well, I'm on PEG feeding permanently and am just coming up to the end of my second year. It became necessary because I had to have my tongue removed in it's entirety. I can't take any solid food, the nearest being porridge, and that has to be fairly thin.

When starting on the PEG I put an enormous amount of weight on. OK some of it I needed, but when the dietician told me I reached the optimum weight for my age (I'm a couple of years older than you) and height I managed to stabilise my weight. That's a plus point about PEG feeding, it's so easy to control your calorie untake.

The feed gives me everything I need, including fibre. Strangely, even though I used to love my food I don't really miss it all that much. I suppose the fact that I've only got residual taste helps. But I still miss my toast!

Do keep us posted on your progress.

God bless

Hi Pikeman

Notice your qords about positive attitude and althiough I agree with you cannot get it to work for me wish i could if i had been in yourcondition i probably would its awful to feel as i do even though i have not suffered as much as the rest of you

Oh come on Blitz.

Each one of us has to face their problem, and we all do it in our different ways.

I feel it's a mistake to try to measure what you have to cope with with anybody elses problems.

You might think that what you've gone thru' doesn't compare with another persons suffering.

Maybe not but how do you compare. We all react in our different ways.

We're all frightened at some time or another, some of us all the time. I think most of us worry that a cancer may pop up somewhere else within us.

But just think of all those people who know they're terminal. How in God's name do they deal with that. OK, probably we'll all have to deal with that some time in the future.

But, we've been spared so far whatever problems we have to cope with. So enjoy each day that's granted to you and try to think of those millions who are far, far worse off than most of us.

Take care and keep posting

<<We're all frightened at some time or another, some of us all the time. I think most of us worry that a cancer may pop up somewhere else within us.>><
Pikeman I read a phrase in a magazine on the weekend. The woman had had breast cancer. Despite successful treatment she said she now """carried a spook on her shoulder all the time""".
I think all of us who have experienced the carcinoma/cancer diagnosis, surgery and treatment get her drift immediately. However well I feel the slightest thing like a tiny ulcer I had on my tongue earlier this week probably caused by eating a rather acidic plum tart gave me all the old horror in an instant for some 48 hours until it cleared up. I found it impossible not to contact the hospital for a nearer check up date.
That spook is always deep in the background now despite getting on with life decorating and the like as of old. I try hard to look forward but it can be hard to forget as the after effects leave you daily reminded don't they. I do want to forget about it, but every time any of us go to eat or talk we get reminded of dry mouth etc., think must have liquid etc., etc.
And Blitzbob - yes I would go through all the treatment again even knowing what I know now. I am convinced it has extended my life. I'm sure that without it I'd be dead by now. Why do I say that - well I just feel so much better than when I felt unwell. You get so used to feeling """off colour""" I actually began to think feeling unwell was how I normally felt. Only now that I am doing things again like decorating do I recognise how ghastly I felt for about 18 months. I just thought I was ageing or it was new tablets affecting me.
Now I realise that feeling was one of feeling like being a tree slowly wilting from something draining and sapping all energy. The SCC diagnosis explained so much that before never made sense. Indeed one point before diagnosis I recall laying on the bed thinking I feel really bad as if I have something very nasty like cancer of the spine or multiple sclerosis.... Our instincts often tell us. I wish I had gone to the docs earlier, but being TATT ( tired all the time) sounds so feeble. Yet it is a classic symptom.
As for going through the radiotherapy - my dread is having the dissection op you have had. But at least if they do it in time you have a chance to live, albeit with problems, but a chance. No treatment is without problems - I think a bit like Pikeman - we have to learn to live with the changes - it will never be like before, but as humans we degenerate and if it was not this it might be something else, different, but just as unpleasant. Maybe for us it's hard because it affects the face we show the world.

This message has been edited. Last edited by: PaulineT,

Pauline, many thanks for that - lucid as ever.

I'm particularly taken with your phrase """like a tree wilting and being sapped of energy""". That so aptly describes how I, too, felt.

It was only several months after the operation that I realised that I had actually been feeling unwell for quite some time. As you say, the general feeling of lassitude creeps up so gradually that you adjust and then think it's normal.

The other point you touch on is one which often gives me some wry amusement. That is peoples reluctance to talk about how you look or sound (or both). I wonder do they think I'd be upset, or do they feel that by mentioning it they may become """infected""".

Worst of all, I wonder if I used to like that?

Once again, thanks for your cogent comments.

LOL Pikeman and 6 months after treatment I felt like I had been watered!

I find the speech/drying up problem particularly personally maddening as my diction before was so good. Most of the time my voice is clear but if you have not had a sip for while the words come out strangled don't they.

So any mumbling I do when out shopping soon sends me delving for my water bottle or for another cuppa in the coffee shop. Except I can't drink coffee now. Leaves a taste for hours and dehydrates the mouth totally.

Good day Pauline.

Well, thankfully I've never had a problem with """dry mouth""". However, even two years down track I still generate huge amounts of mucus.

This affects my attemps at speech quite severely. Somehing I do find puzzling is how some people seem able to understand my speech, whilst others find me totally incomprehensive.

There are sounds which I cannot make therefore I have to select my words carefully.

The telephone is particularly difficult. Not for me but the person on the other end. Thank God for e-mail.

God bless, have a great week-end.

HI Guys, Well I seem to have the different problem of people understanding me on the phone biut not face to face. I think the problem is they see me and at first glance I look """normal""" then all this slurred speech comes out and they are taken back.
Has anyone heard from Eileen ?
I am waitng for the result of my third biopy this year it is pure hell just waitng I wish they would tell you as soon as they get the result.The worst part is having to go back into hospital i hated it in there. Well all have a good weekend

Paul

Hi Paul, nice to see you up and running again.

You're surely being put thru' the wringer. 3 biopsies so far this year, what you doing going for a world record?

And aren't you the impatient one wanting your results immediately.

Where's your sense of adventure?

Joking apart, I hope all turns out well for you.

Last posting from Eileen was on August 18 (at least in this topic).

Bank Holiday - retire behind your tinted windows and ogle the young ladies sedately.

Have a good week-end, and let's know your results when you get them.