Hi, I am new to the site but would appreciate anyone with a similar experience to me letting me know how they are getting on. I had a neck dissection/part tongue removal in June with the associated lymph gland removal etc, followed by chemo and radiotherapy. I return to work tomorrow for the 1st time since the op and i must say am rather nervous about it all. My main question is, will the soreness in my mouth subside ? I have an extremely hard neck and pain in the back of my head similer to sciatica i would imagine, and my doctors keep telling me to be patient but to be honest i am fed up being patient. The only drugs i am taking are ordinary painkillers but nothing prescribed. My diet is not too bad but obviously soft and easy to eat/swallow. I suppose i am looking for someone who has been down this route to reassure me that it will get easier because i am slipping into what i can only describe as depression at thought of being like this for much longer. Sorry to sound so pitiful but hope that one of you brave people can help me out....Look forward to hearing from you

Hello Phil

Sorry to hear about how you are feeling but it is unfortunately a complication of the cancer treatment. You will much to encourage you in the stories of other's experiences on the MCF website. You may find past discussions on depression helpful.

You will soon find lots of encouragement and support from the members here.

Best wishes
Vinod

Hi Phil,
So you've joined the list of "Mr. Wooden Necks"! It's what my Macmillan nurse said to me after my radical neck dissection.

When I was going on about my "side effects" my GP said what could I expect after having my neck scrambled and my surgeon also said that my whole neck had been fried and that it was expected that I would feel uncomfortable eating drinking etc.
I had to smile with them I must be honest.

I must say though Phil - Do you have to go back to work yet? I could not face my job -teaching- again. Mentally I could never cope with it full time.
If you don't need to work yet - take more time off if that's possible. Financially though I know it may be difficult.
After what you have been through, and so recent too, it all seems you are trying to do too much at the moment.
I came to terms with a slower recovery, eventually, but it was difficult. Once I realised that improvements month on month were going to be slow -but that it was occurring- my mental state improved greatly.
It's early days yet for you-very early days!
It took me 18 months to get my mind and body ready to carry on with normal-ish life.
I have been on anti-depressants for a long while and they really do help without any nasty side effects. Do see your GP about it. They take about a month to kick in - they really helped me.

It's not a short journey unfortunately, but you will get there eventually. Just don't expect too much in these early stages. Take your time.

cheers - Tony K

P.S. - I've just read your profile. You've had a half tongue removal, radical neck dissection, chemo, radio. All from last june!!

Come on Phil take it easy and don't push yourself - let your body recover more. My consultant said it takes about 3 years for a full-ish recovery. You've only had 6 months.
This is not the flu!!
BTW Happy New Year!!

Thanks Tony, I think this is my main problem. I had never really been ill before and was very active in sports etc so obviously this came as a massive blow as it does to all of us..Work is unfortunately something i have to do for financial reasons otherwise half pay which means no house and although i have enquired about benefits etc there seems to be very little help out there. Thanks again for your comments im off to see my Community Psychiatric Nurse next week who may be able to help me on the mental side of things so I'll keep you posted.

Thanks Dr, I have arranged an appointment for my CPN next week and this will hopefully help me. Its nice to know there is an expert in the field on this site it really helps.

quote:

Originally posted by Dr Vinod K Joshi:
Hello Phil

Sorry to hear about how you are feeling but it is unfortunately a complication of the cancer treatment. You will much to encourage you in the stories of other's experiences on the MCF website. You may find past discussions on depression helpful.

You will soon find lots of encouragement and support from the members here.

Best wishes
Vinod

Hi Phil,

Like you I had my neck dissection etc in June followed by chemo and radio therapy to both sides of my neck.
I had to sell my business if swimming coaching as I don't have the voice or the strength in my left arm for rescuing /helping my pupils. My husband is out if work too so money is very tight at the moment. I can't claim benefits as i was self employed.
In the last few weeks I have felt very restless and am now ready to work. I have decided to become a driving instructor and i have taken 2 of the 3 exams and passed. The thirds a bit tricky though.
I feel much better for it but i can go at my own pace. You may not be able to in a regular job. I still like a lie in in the mornings!
I have gone completely deaf in my left ear and was wondering if anybody else had this after treatment. Been to see GP but wants me to speak to my surgeon next week.
Any way off to play tennis in the rain!

Anne W

Hi Phil. My first reaction to your post was as Tonys, golly all that surgery & treatment & going back to work already--- but I can appreciate you have little choice. I hope you will be able to work at your own pace as you will find its one thing to be at home & another to be in the work situation where colleagues are so glad to have you back they forget what you,ve been through.
As Dr Joshi says depression is a complication of this illness especially when you have previously been a go getter. My Husband also wanted things back to normal quickly but once he realised that progress was measured in weeks rather than days, began to appreciate each small improvement.
Being from Edinburgh, have you found your way over to Maggies place in the stable block at the Western General (Just across the road from the Oncology unit)? We didnt discover it for weeks but once we did, got lots of help from them. You can just pop in, have a cuppa & a chat & they have all sorts of help & info. to offer.
All the best to you now & in the future, take it easy. Fran

Hi Phil,

I am now one year on from the end of my chemo/radio, and I want to let you know that in the last couple of months I feel completely revitalised. I still need more sleep than I used to but many of the aches and pains have gone away, and I feel a lot more positive as a result. I didn't have any major surgery, so I would expect your recovery to take at least as long as mine has. Do also realise that those niggly little aches and pains probably are as a result of your treatment. After about 6 months I was beginning to think that I was as well as I was going to get, and probably was just suffering from old age (at 46!), but as I have started to regain my strength and flexibility I have realised how much I was still sufferring from the after effects. I don't believe that anyone can really understand just how debilitating the treatment is, unless you have been through it yourself.

I understand your financial issues, in that respect I was extremely lucky that I had an income protection scheme that paid 75% of my salary (less incapacity benefit). I claimed incapacity benefit for 3-4 months, and this pays approximately £70/week. After a while it was stopped as the chronic fatigue I was sufferring from didn't tick the right boxes. It's really daft that it was stopped and I don't think I helped myself because as I have said before I thought I was better, so I didn't give any physical symptons when asked.

Do discuss your issues with your macmillan nurses as they know a lot about all the challenges you are currently facing, and will be able to offer you advice.

Since December 2005 cancer patients are covered under the disability discrimination act from the point of diagnosis. This means that your employer should make arrangements to make it easier for you to return to work, possibly reducing your hours for the firsat few months. The HR department should be aware of these issues, and they may want you to see an occupational health consultant to determine what they can do for you. I am currently going through this process with my existing employer, and also because I am in the process of applying for a new job, my future employer is looking at the same issues. It is worth looking at the details of this act on the cancer backup site, so that you know what your rights are.

See: Financial Help (U.K.)

Hi Phil,
My name is Ananth and you could take a chance and read the terror /horror story posted on this site. As Dr. Joshi said you ought to check out the bit on depressions but I would like to add my two bits. Let me get straight to the point- in the first instance what has happened has happened and over with. There is nothing any of us can do to change that - accept it. In the second - weigh the pros and cons and concentrate on the cons and think positively on the best you can do with the pros. We all know the clock cannot be reversed and hence there is no point in getting into the "why me?" syndrome as there is no point and secondly you would have wasted valuable time moaning over something irreversible. Instead - concentrate on making each day one to remember and live your life to its limits. I can understand the financial constraints as we have all been through it but its strange how things fall into place. Get out of the "blues' and get into a overdrive mode and you have it made.
Take care and look after your self,
Ananth

Hi Phil,
I am waiting for further surgery after jaw removal & neck job in October.(RT been put back because of this)I also have a 'wooden neck' as Tony so aptly calls it due to scar tissue but have found that if I'm sitting around listening to music or reading, a small amount of oil on the finger tips massaged into the area really does help loosen it up. If you are into aromatherapy you could add a drop of mood lifting oil to lift spirit too. Hope this suggestion works for you, it certainly seems to help my range of movement,mood and skin condition. Obviously I'll have to give it up when it comes to my 30 sessions of RT but I'll go back to it afterwards again. SusieR

hey phil

just read susieR's post and thought i could add a note. i suffered with depression for a number of years, after studying aromatherapy as a hobby i found that burning grapefruit oil is a great way to lift mild depression. I burn a few drops in an oil burner whenever i feel the cloud and it lifts me enough to see through it. Give it a try at the very least it makes the room smell great.
sarah

Hi Depression is a real bore, but hey your here to tell the tale, and so are we all.
Backing the car is the hardest thing for me, and having a frozen shouler hard to change gear, but you do have to achieve a few things little by little; every time I used to push myself I felt hot and almost past out.
Three years on I am not back to normal, but I am better than I was last year; still not up to CURRY standard, and eating out is a major problem.
I had a bust up with my long term boy friend and my throat seized up, so emotions have a great effect, as I have no saliva, you can imagine the effect.
Every month is a mile stone and sometimes the going gets really hard.
BIG BEAR HEALING HUGS

hi phil i hope everything went well when you went back to work..i would love to hear how you are doing now

chin up and keep smiling

jeff

quote:

Originally posted by Phil:
Hi, I am new to the site but would appreciate anyone with a similar experience to me letting me know how they are getting on. I had a neck dissection/part tongue removal in June with the associated lymph gland removal etc, followed by chemo and radiotherapy. I return to work tomorrow for the 1st time since the op and i must say am rather nervous about it all. My main question is, will the soreness in my mouth subside ? I have an extremely hard neck and pain in the back of my head similer to sciatica i would imagine, and my doctors keep telling me to be patient but to be honest i am fed up being patient. The only drugs i am taking are ordinary painkillers but nothing prescribed. My diet is not too bad but obviously soft and easy to eat/swallow. I suppose i am looking for someone who has been down this route to reassure me that it will get easier because i am slipping into what i can only describe as depression at thought of being like this for much longer. Sorry to sound so pitiful but hope that one of you brave people can help me out....Look forward to hearing from you

Hi Jeff, take a look at my post on Meds and treatment. Work is going ok but is tough...This bloody pain in my head is driving me insane and its not as if i have kept it to myslef..All the experts keep telling me im doing well but if i dont find some relief for this soon i think i'll go nuts...I've dispensed with my "shrink" as i think the only reason i'm feeling the way i do is because of the constant pain i'm in otherwise i'm optimistic and fairly cheerful..The one thing i really miss is a nice curry but who knows maybe in time...Speak soon Phil

quote:

Originally posted by jeffers:
hi phil i hope everything went well when you went back to work..i would love to hear how you are doing now

chin up and keep smiling

jeff

quote:

Originally posted by Phil:
Hi, I am new to the site but would appreciate anyone with a similar experience to me letting me know how they are getting on. I had a neck dissection/part tongue removal in June with the associated lymph gland removal etc, followed by chemo and radiotherapy. I return to work tomorrow for the 1st time since the op and i must say am rather nervous about it all. My main question is, will the soreness in my mouth subside ? I have an extremely hard neck and pain in the back of my head similer to sciatica i would imagine, and my doctors keep telling me to be patient but to be honest i am fed up being patient. The only drugs i am taking are ordinary painkillers but nothing prescribed. My diet is not too bad but obviously soft and easy to eat/swallow. I suppose i am looking for someone who has been down this route to reassure me that it will get easier because i am slipping into what i can only describe as depression at thought of being like this for much longer. Sorry to sound so pitiful but hope that one of you brave people can help me out....Look forward to hearing from you