Thank you Simon. I hope you have a very  happy new year and continue in your recovery and thank you and others for you kind responses.  Meeting with consultant on 31st December fairly uneventful with her saying she thought I was doing well and me saying I disagreed.  However, had a visit from a Macmillan nurse today from my local Harris Hospice who has assessed my needs and will make some changes to medications and speak to doctors about helping to alieviate my depression and anxiety and fears - but most of all the panic attacks - a result of mucus blocking my throat together with a blocked nose.  I wish I knew when I had reached the peak of these wretched side effect and I can enjoy a cup of tea (assuming my taste buds still like tea).  Even a spoonful of mashed potato seems like bliss.  I am hungry all the time - unusual for me - never a big eater but enjoyed very varied diet.  I am underweight and cant afford to lose any more as  I have now developed pressure sores base of spine and need to fatten up.  Only a noght feed through ng tube and two fruit drinks pumped down tube.  I will keep you informed of progress but tend not to come on to the computer when my mood is at its lowest because its too much of a downer for everybody who has managed to be so brave. Got to go for PET scan end of February 2015, the results of which are frankly the least of my concerns and worries at the moment.  Lets see how my local head and neck cancer teams do with regard to "hearing" what I am saying.  So far the one I have met with impressed me, so I have some hope.  Thanks again. Chris

Hi Chris

Don't worry about calling me Heather, you're not the first and won't be the last - my address is 11 Heatherlea Drive, which is where my username comes from, but I sometimes think I should change it ;).  

I was really pleased to read your latest posts replying to Gary (Vatch) and me.  You haven't yet completely lost your sense of humour "beligerent old cow" made me laugh!  Very disappointing reaction from Guys again but delighted that Harris nurse, via Sue and your GP, have come up with some proper support and review of your pain meds/and antidepressants.  The fact that your voice is making a brief reappearance for a few minutes now and again is also brilliant news and I'm sure must be a sign that things are finally moving in the right direction for you.  

At this time of year when it appears almost everyone around you is partying and celebrating it is all the harder.  I am going through a really tough time at the moment with my elderly parents (90 and 88).  Long long story but Dad has been having lots of falls recently and becoming increasingly incontinent.  Four carer visits per day and 3 daughters doing their best to look after him as well as Mum (it's all getting too much for her now).  Dad was admitted to hospital on Monday but they discharged him very late on Hogmanay when he really wasn't ready to go home.  My sisters and I have been taking turns to sleep over (mattress on floor) to keep an eye on them overnight.  Last night was my turn and it was a nightmare, must have got about 1-2 hours sleep at the most.  I love them both to bits and will miss them so much when they are no longer around, but I have to admit I've been feeling a bit sorry for myself and depressed.  I had such a lousy Christmas and New Year last year (like you) that I was so much looking forward to chilling out on this year's break from work.  It has turned out to be an exhausting and depressing couple of weeks, to the point of feeling on the verge of cracking up with tiredness and wishing I didn't have to go back to work on Monday.  

But life is what it is and there are plenty who are facing worse, so I'm now finally raising my glass to 2015 and kicking out 2014!  

I'd highly recommend that you keep that May wedding as a goal/focus for your recovery.  My nephew got married in April this year and my dietician/support nurse used that as something for me to aim towards - 'you may not be able to eat and enjoy the full meal, but hopefully you will be able to eat something and enjoy the day' - and indeed I did!  

Keep in touch Chris, we are all here for you, especially when you are feeling low.

Love Irene (not Heather haha) x

Chris ... you are already a superwoman ... you've gone through all this treatment and now trying to deal with the side effects of treatment ..... Im going through it and i know how haard it is and a lot of the people who are alsoreplying to you have had it much harder too .... so we are all super people.

I still hanker after a realy cheese and pickle sandwich .. with real pickeld onions, but I am holding off at the moment as a) i cant eat bread yet as it saps what little saliva i have, as does cheese, and pickles are too spicey for me at the moment ... so I will not try such a great food until i know i will enjoy it ... afterall whats the point of eating such a great sandwich and not tasting the delights of it.

Glad that you got some benefit out of you consultation even if it was not what you wanted, but other home help appears to be of benefit too.

I lost 3 stone and as of yet have not been able to put it back on ... i put 3lbs on over Christmas but i have now lost it...shame. But you MUST try and get those feeds down, they arenot nice but its a must regardless of how uncomfortable painful they are .... however i had a PEG so could just stuff it in my belly ~Im not sure how easy it is with a tube down your nose, but i gues it bypasses your swallow mechanism anyway

But i did not have pressure sore, just had no muscles and i cant sit down for too long as i have no bum musles to soften my seat, effectively I am sitting on my bum bones and its painful. you might need to go sea the tissue specialist, but for me i am trying to get some physio, before i start some strengthing exercises.

Wel I am glad you cam back and waffke away about anything yu like ... i do as you have seen in my blog

Go for it girl ... if you don't ask you don't get

your are nearly there ... on the route to getting better so hang in there

vatch

Hello Vatch (AKA Gary) - you see I am catching on - decades too late but getting there.  Because of my illness in November 2013 I lost a lot of weight and ended up weighin 6 stone.  I had lost two stone.  Although I am quite tiny (5 foot 2ins) I was still seriously underweight and as you say had no flesh on mu bum (had to sit on a rubber ring in the bath) and drastic muscle wastage.  Sspent all of the beginning of 2014 eating healthily and managed to put on nearly two stone and doing well only to be hit by this last rotten episode and losing weight again.  I think you may find it a bit of a struggle to put on weight to begin with (and this will be a lot of muscle wastage as well) but I am sure you will achieve it.  Here I am today - still struggling and still I believe not yet reached the peak of these horrible side effects  I have been in worse pain over the last couple of days which is worrying me and I am counting the hours off until I can have more pain medication. I am still not sleeping - probably getting about a total of 3 or 4 hours out of 24 and I am exhausted.  I spend most of the early hours of the morning on my back doorstep wrapped in a coat trying to get some cold air to clear my nasal passages.  I am desperately waiting for this downward slope where I feel that things are diminishing in the side effect department.  I am despondent.  I am also hungry but can only put a feed on at night for sustenance.  I think this is a bad day so I dont want to bring everyone down so I will sign off for now.  Thanks for support. Will post again.  Chris

Irene - Chris here.  Thanks for your post.  I am very sorry to hear about the health of your beloved parents. This is a very difficult time for you and I am glad that your sister will be able to help with the load.  Personally I never had to experience this as my dad dies aged 73 after a three year illness in 1985 and my mum died a week after emergency surgery in 2005 aged 87, but I have friends who are in similar positions.  This type of care is ectremely time consuming and distressing as you witness the faculties of those you love becoming eroded.  I hope you will manage to find some professionalhelp in the community to help you with this.  I am sure you probably already have this in hand but nevertheless I am thinking of you a great when, as you say, you thought perhaps this xmas and new year may prove to be brighter for you than the last one when you were going though the ordeal of the after effects of radiotherapy and recovery.  I am very low at the moment having experienced worse pain than previously which worries me.  I am counting the hours until the next pain medication dose.  I am going to gp on Tuesday so I hope she will be able to help with some of my isues.  I wont bother you now with my woes - last thing you want is a depressive on a massive downer.  I will sign off for now Irene, but I am thinking of you and hope that you can find some assistance to aid you in your care of your mum and dad.  Chris x

Hello Irene.  I thought I would touch base with you to see how things are.  I have been thinking of you and of course your parents.  Perhaps their health may pick up when the weather is warmer and they can be a litttle more active, although of course they will need care.  I hope you are coping.  My visit to my gp yesterday was a fiasco.  I expected it really because I have never really had a lot of faith in them.  I saw the district nurse in the morning and usually I would have given her a list of my repeat medications to arrange for the prescription and delivery from the pharmacy.  This district nurse also wrote out a list of itmes that need to be prescribed in order to deal with my very painful pressure sores.  Bearing in mind this gp appointment was at their request (twice in fact) I did hold out some hope that I would get some help with changing my antidpressants and something to help me with this dreadful anxiety and panic attacks which are crippling me.  Within about five minutes the gp said that she was short on time and did not have time to do repeat prescription for existing meds or for the new ones requested by the district nurse.  The said she would refer me for a psychiatric reassessment.  This appointment will take several weeks/months to materialise.  So within ten minutes I was on my way home with precisely nothing addressed and no medication.  I dont know why they asked to see me.  I assumed it was as a result of the visit from the Macmillan nurse where my depression and anxiety had been discussed.   When I told my friend Sue (my, what a friend - I would have survived none of this without her) went ape and rang the surgery to make a complaint (something of course that I have to agree to) and got a response from the practice manager and senior gp this morning.  The senior gp is apparently going to call me this afternoon (presumably to ask me to  make another appointment) and give me an explanation, but so far nothing.  Also while I was there yesterday I expressed my concern that I may have an infection (chest) because of the colour of the mucus that I had been told to look out for, but she never even listened to my chest and seemed to ignore my concern.  Terrible isnt it?  I dont even know when I can expect my medications (which I am now nearly out of).  If only I was able to speak coherently but my voice keeps failing me (lasts only a few minutes) and the effort of pushing the words out makes me so breathless.  I am capable of fighting my own battles usually, but what a godsend Sue has been for me in these times of crisis.  I have an appointment at Harris Hospice on Friday - this is the local community head and neck team.  I am seeing the dietician.  I am so frightened that I will have lost my swallow function for ever and never be able to eat normally again.  So scared.  So fed up.  I have a date for my PET scan which is the 18th February and I almost couldnt care less about this at the moment.  Maybe closer to the time it will impact me.  So I will sign off, but thinking of you in your recovery and of course, your mum and dad..  Chris x

Hello Gary.. I thought I would post, but have nothing of any significance to say really.  I am seeing no improvement in any of my symptoms and am very worried about my swallow function never returning.  My panic/anxiety attacks are increasing and my gp appointment yesterday (at their request) was no help at all despite my concern that I may have a chest infection because of the colour of the mucus that I had been told to look out for in case I needed antibiotics.  She didnt even listen to my chest nor had the time to write me a prescription for my repeat meds.  She told me she would request a pscych assessment for my depression and anxiety, which will take several months to materialise.  My friend Sue went ape and phoned the practice manager and senior partner to make a complaint about the treatment I had received.  They are supposed to be calling me this afternoon but so far nothing.  So fed up and despondent, I dont care really.  I have an appointment with local community head and neck team on Friday.  I am seeing the dietician.  I think I need at some stage i need to have another xray of my swallow function to see if any water is going down the right hole so that I may beging to see a light at the end of the tunnel with regard to trying to swallow some sustenance.  I still keep thinking of that cheese and pickle snadwich and the other one is a roast dinner especially roast pork and crackling, roast potatoes, loads of vegetables and gravy.  I am going to make myself cry in a minute, because I fully believe these small pleasures have been lost to me forever.  This is still a never ending nightmare for me from which I see no escape.  One day rolls into another with no change and I am now finding my ability to concentrate on television or read (and I am an avid reader) is diminishing rapidly which is leaving me time for morbid thoughts and panic attacks.  I do look forward to your reply though, and those of the others because to hear of your respective recoveries gives me some hope for a while.  I have put a new post on (at least I think I have being the technophobe that I am) asking for anybody to respond to me who is going through or been through this experience but with the nasogastric tube for feeding instead of the PEG method. Ive got a date for my PET scan whichis 18th February.  But I couldnt care less about this at the moment.   Bye bye for now.  I will lay low for a bit and try and deal with my anxiety and depression.  Will post again if you can bear to reply.  Thanks. Chris

Hi Chris

I am so sorry to read of the pretty appalling situation with your GP practice.  I really don't know what to say or suggest other than it might be worth just turning up at A&E as Simon suggested.  Other than that, I keep my fingers tightly crossed that your appointment with the Harris dietician goes well and that they really do give you support and encouragement to see your way through this dreadful time.  I also hope you get some response on this forum from folk who have had an NG tube.  If not, perhaps try contacting one of the site moderators to see what else they can suggest?  

I had my monthly checkup today and am pleased to report that a year on from treatment all is well and I am now onto checkups every second month.  However I am still bothered with thrush which they are finding is a persistent ongoing side affect of many RT patients and they are looking into new ways of combatting it, so I was swabbed again and can expect some different medication to try. 

My Dad is now in a local care home for some respite care and seems to be settling in fine. He is having a proper assessment of his needs tomorrow.  Still pretty tiring taking turns to keep an eye on Mum and take her to visit him but at least the overnight problems are alleviated for now.

Your Sue sounds like the best friend in the world and good for her 'going ape' on your behalf - just so disappointing and frustrating that you still haven't had a decent response.  

I do understand that talking about your ideal meal makes you want to cry.  I didn't experience anything like the same as your problems with complete lack of swallow, but I certainly felt I might never enjoy food again and it used to get me down.  I probably will never be back to how things were before (normal for me was loving ALL food with no fussiness or fads and a tendency to over-eat).  Now I am very picky indeed but I am certainly enjoying some foods and taste again and I can see that it is still gradually improving - I am just more limited in the types of food I enjoy and gradually getting used to managing that.  I also felt for a long time I was boring people to death when they would ask ' how's it going with the eating?' and I couldn't help myself but launch into a detailed list of what I found easy/difficult to eat.  I think I am moving on from that a bit, but the whole process just takes infinite amounts of patience I'm afraid.  You will get there too but it's not easy to see that far ahead, I know.  Are you keeping a daily diary of everything that's happening with you?  It might help you see that, if you look back in a month's time, things are a little better than they were 4 weeks ago, even by a tiny amount and hopefully you would see the same gradual improvement month on month until you look back 6 months and can't believe how far you have come.

Please try and keep your spirits up, although I know it is very hard for you at present.  Keep contacting your Macmillan/Harris nurse if you feel your depression is not improving and keep in touch with your friends on this site too.

Sending a big virtual hug your way

Irene x