Hell all, Well its been a while since I've posted a message or question but I have been looking in now and again.

I do have a question now though as I'm getting quite down about it. I had my lymph nodes removed from my neck,cancer in three of them, and tumour removed from my tongue back in August 2007. I had six weeks of radiotherapy in October 2007 and have been slowly recovering from it all but hopefully am now on the better side of it. However before my cancer I was never off sick,never had a cold,never felt ill but now I seem to have one cold after another, I have now yet another really bad cough which I can't seem to shift.....is this coincedence or does having your lymph nodes out and RT cause your immune system to be low even 2 yrs after the event.

I was just wondering if anyone else has this problem or is it just me? I know this is nothing compared to alot of what I read what some of you are going through but for some of the 'old timers' I was was just interested. Is it something I should maybe get checked out,especially this cough?

Love Sammy

Hi Sammy

A difficult one. I had my lymph nodes removed, along with the tumour on my tongue, in October 2007, though I did not have radiotherapy. I have had phases over the past two and a bit years where I have had one cold after another and also a very long period without getting any at all. Unfortunately, like you, I am in one of the former phases at the moment and have just had a really bad cough - though I know this was a virus and it is getting better.

We will always worry about things like coughs, though - when I first got mine I was already planning what I would do if it didn't start to get better and when I should go to the doctor! I think the general recommendation is to get it checked out if it isn't getting better after three weeks. And in our circumstances no good GP should mind us seeking reassurance.

Love

Gwyn

Hi Sammy,
I think you are doing well all things considered. I had my 5 year anniversary December 23 just gone. I had lots of radiotherapy after a full rhs neck dissection, secondary tumours in lymphs - had an unknown primary as well.
I seem to have coughs and colds for much longer periods when they come. 6/7 weeks over nov/dec. Very irritating! If you had a bilateral neck dissection it's no wonder your immune system takes some time to recover.
I dare say things will improve over time. I take a lot more supplements now to enhance my resistance.
Any type of sore throat will make you feel worried too. I had a couple of raw sores in my mouth over christmas but everything has now cleared up.
Back to normal life again - ho hum. That's all I crave to be honest. I suppose I can live with the odd blip! It makes the non-blip times so much nicer!!

All the best tony K

Thanks Gwyn and Tony for replying.

I still have this wretched cough and it does seem to be getting worse. I've already gone through a full pack of flu,cough tablets,on my second bottle of cough medicine but still no let up. I have decided if it hasn't gone by next weekend I will visit the doctor just to make sure its only a virus.

I think once you've already gone through a neck dissection,RT etc any little blip in your health does set you into panic mode. I've had afew mad moments when I've rushed to see my consultant over a little mouth ulcer or 'lump' I can feel somewhere only to be told to stop worrying but its so hard not to. I'm sure this is only a virus but I suppose I just needed a bit of support again, so Thankyou for taking the time to reply.

Thanks, Sammy x

Hi I am new and have been reading posts and was curious as to wheather or not you lost your sense of taste and if you did has it come back. I had a radical neck disection and tonsilectomy as well as 14 lymphnodes removed from my neck, only one had a carcinoma though. I am a small person and have lost alot of weight and as silly as it sounds I have refused feeding tube because I have such a horrible reaction to anestsia/drugs everything makes me violently ill, especially after surgery.I have had 6 wks of radiation just finished on 3/12/10 it was the hardest thing I have ever gone through, but I am looking forward to get well again and I miss food sooooo much I try all day one thing after another but it either dosn't do down or the nasty taste makes me ill, do you have any advice to a new recovering anerexic

Hi Sammy. I still worry a bit if a cough or virus doesn't clear up within a day or 3. I think it's only natural to be on your guard but I dont think thats a bad thing. I'm sure everything will be fine, it's the time of year for colds and viruses after all. Hagg.

Hi Sammy

When I've had a cold, the sinus related stuff usually clears up in a week or so, but the coughing sometimes will hang on for WEEKS. I grew up in a smoking household, though, so I'm prone to bronchitis. Hope you're better soon.

Hi Kerry

I can't begin to pretend to know what you're going through--I didn't have radiation, so my sense of taste never changed (although half of my tastebuds were removed). It is phenomenally depressing to see people around you eating and thoroughly enjoying food, though, when nothing tastes good or feels good.

I had no choice concerning a feeding tube, but then I had a tongue full of sutures. After the tube went away (huzzah!), I was on a progressively-thicker-liquids diet that consisted mainly of baby food (no meats), Boost, and CoCo Wheats made with soymilk. Oh, and you might want to add some kind of vitamin supplement to what you ARE able to eat.

You're not alone in this.

Julia

Hi, I had mouth and neck Cancer full wack of Rdiotherapy.
I still have constant sore throat and my tatse buds differ from hour to hour this could be due to part of my tongue removed.
Tirdness a big factor I still get tired out after about 2 hours awake and they tell me its Cancer Fatigue.
Its nine years for me now but still having absyess and ulcers from my rotting teethe which they cannot take out and as said when you feel lumps all the time it scares you the C has come back.

Paul

THanks all for the replies. I actually had an appointment with my consultant after having to the hospital about something else I was coughing all the while I was there. The nurse noticed and asked if I'd had it checked out....panic set in. She got me an urgent appointment and my consultant saw me the week after. He did a thorough check and asked for any other symptoms which there weren't so decided it was just a niggly cough. Apparantly having a dry mouth from radiotherapy doesnt help as you've no mucous to sooth any irriatations. Simple really but I hadn't though of that! but my mind is at ease now and the cough is nearly gone now. Yippee.

However while I was there he noticed my scar under my chin was quite tight and asked me if it was hurting. It had been but I never really thought anything about it. He asked me if I'd like a small op to get it released and easier to move my neck again. Yes I thought thats a good idea,expecting a small op in about six months. The next week I was in theatre, 28 stitches later with a cut right down from under my chin around my neck-EEK!! It was called z plasty. That was 10 days ago but now the swelling is going but still very stiff. Think its going be much better though thank goodness.I just couldn't believe how quick it all happened.I have also alot of very deep wrinkles ans scarring from the radiotherapy as my skin really badly reacted so my consultant has also recommended a little plastic surgery to make it look better. Thats in the pipeline,phots have been taken but he's not sure if it can be done...again because of that darned radiotherapy,they don't know if the skin will react. Watch this space!!

Message for Kerry,

Sorry for the delay but not been on for a few days. I really do sypathise with you at the moment.Even though I'm 2 years down from RT it is still vivid in my mind to this day. I won't lie to you but yes I did lose all sense of taste, I ended up on coffee milk shake drinks to feed me,lost 2 stone and felt so ill. 2 years down I'm now a big fat pig havint put all my weight back on..tee hee. I still however really struggle with alot of food. I have to have very bland things,no spice,no garlic,no alcohol,no pepper or salt, I have to sweeten nearly everything as it all still tastes so salty bit I can eat chocolate and toast...my staple food!! ha ha! As paul said each day is different,one day I can have some nice pasta but a week later it can burn my mouth.I constantly have ulcers,sore lips are my most common problem but hey I'm here, I'm alive so you do learn that food is just a luxury now to enjoy. My consultant was really pleased my weight has gone on as it shows I'm thriving!! so thats good as I can always diet on Monday. Try and think this is just a blip, its hard I know but it does get better, it takes longer than you might think but it does get better. Coo I never thought I'd be saying that eh?

Take care all of you, its nice to be back on line to catch up with everyone again,

Sammy xx

Hi all again,

Just a quicky really. I am 2 years after my op and RT but have started to have quite bad neck and shoulder pain and like a dead arm on the side I had my neck dissection and RT. Somedays its really quite painful to the fact on Thursday I couldn't even lift my shoppping bags in my car, I literally dropped them as my arm and shoulder felt so weak. Has anyone else had this problme at all. Again you relate everything back to the cancer, could it be just coincedence or is this yet ANOTHER side effect of RT no-one tells you about.

Hope someone can throw some light on it for me, Sammy x

Hi,
I totally lost the use of my left arm and the shoulder pain was immense. I kept exercising and I have a massage every month and it does keep the pain at bay. I find it difficult to sit still on a plane or at the cinema as it becomes very uncofortable in the neck and shoulder.
I would say that although I have full use of my arm now, I still don't trust it to get a heavy casserole out of the oven!

Keep smiling!
Anne

Hi Anne

Thanks for replying.It seems there really is alot more to the side effects of this dreadful disease and its cure isn't there. I suppose I've always had a twinge there but I have slowly weaned myself off morphine last year and codeine this year upto now so I suppose these could have been masking the pain in my neck and shoulders. I'm still on paracetamol but was hoping to get off theses as well to be 'drug free' at last but its wishful thinking I suppose.

I'm seeing my consultant next week as a follow up to my last operation so I will ask him as well.

I did return to work today after two weeks sick leave and I must say I've been in quite alot of pain today but now my arm feels totally dead and my shoulder feels as though its being pushed out of its socket.... I think I might be back on the codeine again tonight!!

We'll see eh? Thanks again,

Sammy xx