Hi Nicola

I just thought i would drop you a line as I have been chatting to simon who appears to have gone through the same thing i am now facing

At present I have a secondary site in my lymph node on the right hand side of my neck ... they can not find a prime site I have had multiple cameras and tubes doen my throught had a ct scan and a PET CT scan and no primary site found ... I am now going into Addenbrookes on monday for multiple biopsies from the back of the toung throat and a scape of the tonsil area (although i had them out when i was 8) before they assess my treatment plan

At present i have been told that they seeno need to operate and think the lump can be dealt with ... via the 6 week of chemo and radio therapy ... so you appearto have had it a lot worse than myself

I know what i have and accept it and like where Simon was i just want to get on with it and reading your and Simons posts has given me a flavour of whats ahead ... i know its different for everyone

Im just trying to get a perspective on what i am now facing and how long im going to feek crap for as i have a business to run and am trying to put in steps to limit the impact of my absenses

regards

Gary

Hello everybody,

Sounds as if everyone is doing well especially Gary. Have you finished treatment now? How are you feeling? Sounds as if you have coped well, how was the cookie? There was no way I could have eaten a cookie at this stage with a frazzled tongue! As for being bunged up, Laxido was what I was prescribed, it seemed to help. Strangely I've still got them as well as some other meds, I feel weird about throwing them away but I'm not sure why I'm keeping them, kind of a safety net I suppose. Keep me updated with the Leeds meet up, I love Leeds. I will try and make it if I can. You sound as though you have escaped the phlegm issue, I still get a sticky mouth first thing in the morning but the phlegm problem settled down a few weeks after treatment.

Simon, I've noticed an improvement with food too. I eat three meals a day most days now which helps the fatigue. Pleased to hear you say you have days when you feel like you've never had cancer, I look forward to that. I'm still waiting for my peg to come out, I have a tongue check up next week and I'll be making my disappointment known, I just want it out now. The referral should have been done almost eight weeks ago so it's time to make a bit of fuss I think! I'll be glad to be rid of it however every time something comes to an end and its another step closer to being normal again I get a little wobbly. I suppose like you were saying, it's all been a safety net and when it was time to have my PICC line out or stop meds etc I felt a bit shaky. Sounds as if you are back into the swing of life which is great, I hope you get the help you need with the night sweats.

Irene, sweet potato chips are a great idea! I will try that. I find regular chips too dry too and I can't have ketchup as it stings but I did try chips and mayo but again was still too dry. I add caramel syrup to my coffee and a big spoonful of sugar, otherwise I can't taste the coffee alone. The worst times are in the evenings when I fancy picking at something nice to eat. I used to have chocolate or cakes/biscuits, now it's rice pudding with a dollop of jam but it all takes so much more effort! Sorry to hear about the episode of blood, perhaps something was a little harsh on your throat which made it bleed. I know my throat is still ever so raw and wounded. If feels as if someone with long nails has scratched down the inside of my throat and the same areas seem to sting most when I get brave and try something a little spicey. It was also very sore when I had a bit of a cold and cough recently.

Gary, I'm sorry to hear of the position you find yourself in because of cancer. None of the treatment is pleasant but it is manageable. It does get depressing at times especially if you are unable to eat but you just have to keep reminding yourself that it won't be like that forever, only three months ago I couldn't ever imagine eating normally again but I'm already tucking into meals. In terms of time off of work etc, I didn't work at all throughout my treatment but that was due to the major operation I had a couple of months before my treatment started and I was told to expect a minimum of four months of recovery time from the surgery alone. However I did meet another person having the same treatment as me and he managed to continue working through most of the six weeks, I believe his job was partly physical. I would suggest putting steps in place to ensure you don't have to work and if you can then its a bonus. You never know how you'll feel from one day to the next and it can be quite exhausting. I know I couldn't have thought about working when it was happening for me, I struggled for three to four days following the chemo each week but everyone is different. Also, try to remember that the recovery for a few weeks afterwards is when you will also need to rest. It all sounds like such a lot to think about in the beginning but as long as you have help and support, it's only a short time of your life that will be disrupted. You'll be back at work and back to normal before you know it! I hope all goes well on Monday, let us know how you get on and please feel free to ask any questions. I'll be thinking of you.

Speak again soon,

Nicola xx

Colin hes a legend like you mate! Get up to Scouseland kidder! Hotels not cheap any more mind you!

Hi all,

Just wanted to pop on here to say hello and that I'm now up to 20.5 mins of exercise per week now during my Energise course to help fatigue! Chuffed with that! I had a birthday recently and managed to eat out a couple of times to celebrate and have a few drinks which definitely helped the weight increase but weight seems to have gone back down again now. Still stuck at six stone 1. I was eating something recently (can't remember what it was) and realised I was eating something that I never would have dreamed of eating only a couple of months ago. I do have a question though....if people ask any of you "what can you eat?" or "what can't you eat?" Or "can you eat normally now?" (these questions have been the bane of my life for a few months now) what do you say? How do you answer? I find it difficult to sum up my dietary requirements without going into great detail, which sometimes I don't want to do. For example, I can't eat anything spicy or dry or 'bitty' as in rice, sweet corn, cereal, and everything also has to be the right consistency so I find it difficult to answer such questions.

Simon, so pleased you managed to enjoy a holiday, it must have boosted your confidence, I know my confidence has taken a bashing and I feel anxious about going places since being ill. I tried the deli boxes, I enjoyed the cheesy pasta one. Also got a blender recently and have been making fruit smoothies which is great as I can't manage to eat any fruit now. I must make some cheese sauce too, it goes with so many things, well done to your wife for doing that for you. Did you have any ice creams on your holiday? I can't have ice cream, just can't taste it anymore which is annoying. I've commented on Vatch's thread too, he would have for the results by now, I hope all is well for him.

Guzzle, you always sound so chirpy, glad to hear all ok with you. I did search you on FB but couldn't find you there were too many of you! Lucky Colin getting away for the winter, but he deserves it after all he's been through. How have you found being back at work? I start next week.

Another question for you all...have any of you suffered with hearing loss since the radiotherapy? Although my radiotherapy was to my mouth and throat/neck, my right ear would have been in the firing line and I was warned of tinnitus, which I was lucky enough to escape, but a hearing test today revealed quite a degree of hearing loss compared to before the cancer treatment. I now have to see my GP with the results who I was told may refer me to ENT. I laughed and said I am already well known at the ENT clinic!

Speak soon,

Nicola xx

Hi Nicola

Good to hear that you are enjoying the fitness stuff although at 6 stone you had better be careful on thosw windy days

Im going backwards and forwards with food at the moment ... its not helped by having the biopsy on my tongue..... but I am back on the blasted PEG as i just can not get anything down at the mo ... too sore ... I m hungry, starving infact, but for what i don't know ... oh i know i would love a cheese and pickle sandwich, but i know i would not be able to eat it ... and thats beginning to annoy me

no news from my biopsy yet either

as for hearing my hearing has got more sensitive, but i also get tinitus in my right ear, the right hand side of my face took most of the radio therapy

But i have one question for you all ... i have really bad paind on the right side of my face, i though i had an infection, but when i mentioned it on my review this week, the told me it was the nerve endings regenerating themselves ... made me feel like Dr Who .... did any of you have such pains

Nic try to pm your name and Ill search. Gary Jones is a common name which is appropriate really for a common chap. Glad you and Vatch on mend. I can eat anything except very spicy. Been lucky thus far. Had scan results. Only 3/4 had downloaded and that bit looked OK. Quack noted chest and shoulder muscle getting back.Still 13 st 7 from 15 5. Cant run as far or fast yet but up to 10 k. Good on a bike as feel light as a feather. Done my UDT refresher last week and could tell that whilst functional still weaker than before. But still here - lite version. Tough to put weight on run most days, cycle weekends, eat like horse. Avoid weights as I dud have tendency to bulk up but may go back. At Harrogate treatment centre w/c 3 nov for another week intensive fuzz, gym, cycling, bleep tests, comp therapies, protein and possibly guiness. There. Mon ti Fri so if anyone fancies trip to Harrogate Ill buy you a beer!

.                yours, Scouse Weakling.

Nic, Im like 2 of u and feel skinny!

Hi all,

Good to hear from you, Nicola. In relation to your question about what to tell people about eating.... I agree that it can get tedious and so my stock answer is that the list of stuff I can't eat is longer that the list of stuff that I can. If I go any further I just tend to say that I can't do anything crunchy, or with spice or black pepper and that I can't take bread or chicken. I then say that I also can't do sweet stuff. By this stage most people have either fallen asleep or walked off, so problem solved.....

I didn't have any ice cream on holiday because I just can't taste it - my wife makes up for me though and if we go to any functions where they dish up puddings or the like, she has mine!

I can associate myself with your weight situation. I used to be just over 12 stone and I'm now 10.2. I put it down to having obviously lost weight during treatment and then the significant change in diet since then, especially no bread, curry or sweet stuff, which has meant that the weight hasn't gone back on. I've now assumed that it won't and so I'm slowly replacing my clothes for smaller sizes - I've gone from a 34" waist to 30" and my suits look huge on me. Because I used to run a lot everyone thought I was skinny in the first place - heaven knows what they think now. I'll really start to worry if I get down to your weight!

In relation to hearing, I did have a slight whistling in my ears but that seems to have gone. Not sure if my hearing has degraded but I haven't noticed any issues. My local Boots was doing free hearing tests so I may get that done out of interest.

Vatch, the face pain is a new one one me. I have had some dental-type pain in various areas of my mouth over the last year but these seem to have cleared up on their own. My neck does feel strange still - I would describe it as a dead, tight or numb feeling around the area of my thyroid gland - it's not an issue for me though.

One slight piece of positive news is that my saliva situation seems to have very slightly improved. I only sip water once or twice at night now as opposed to every 90 minutes or so. Mind you, I only sleep for around 4 to 5 hours on most nights.

Well done, Guzzle, for your exercise routine - you always have been the active one!

Take care everyone.

Simon.

Simon its sometimes a struggle to force myself. Just on train to Birmingham and struggled to get up! Coffee works! Had ringing in ears during treatment but it went. As regards neck tightness found massage helps as do stretches.

Hi All,

Vatch,  I have not heard of anyone having pain after surgury.  They cut into the front of my jaw

then on round the inside of my jawline and then downwards to the bottom of my neck.

The righthand side of my mouth and jaw still feel numb as though I have been to the dentists,

but no pain. I have a lump on my neck where the fluid cannot get past the scar tissue but it

is painless.  I have never had a problem with the PEG, it allows you to get nutrition without

eating.  I never feel hungry and my wife sometimes has to remind me to feed. I used to love

food and wine and my wife is an ace cook.

Simon, like you I lost 2 stone (13 to 11) but I had been working too hard to find the time to take exercise

and now feel better for it. Like you I am deafer since the RT but this may be just be advancing years.

I still sometimes have a dry mouth have a spray I use prior to running. I inhale through my nose to try

to retain moisture in my mouth when running.

Gary, 10K a champion!   When younger and competing I only ran 10miles most days.  Keep it up it

can only do you good. I found I lost a lot of muscle after three weeks in hospital.  My calves were

wrinkled as though I was old. The idea!!

Nic,  Being retired and not having the pressures of a job made it a lot easier for me. I can't imagine

what it must be like to have sole resposibility for a young daughter.   It must be such a relief now that

your future and hers are assured.

Colin

Col, Ten minute miles! Slowly slowly! Just trudged 5.5 miles after travelling back from Brum. Wish I could get all my energy back!

Hi everyone, it's my first day back at work today after everything that's happened this last year. Feeling very nervous! Wish I didn't have to go back,  feel a completely different person now! But at least I'm in a position to be healthy and to be able to work again. A year ago I was all stitched up and not able to talk or eat properly!

Off I go, I'm sure it will be ok.

I will reply to everyone properly and also let you know how I got on.

Speak soon,

Nicola xx

Hi everyone, it's my first day back at work today after everything that's happened this last year. Feeling very nervous! Wish I didn't have to go back,  feel a completely different person now! But at least I'm in a position to be healthy and to be able to work again. A year ago I was all stitched up and not able to talk or eat properly!

Off I go, I'm sure it will be ok.

I will reply to everyone properly and also let you know how I got on.

Speak soon,

Nicola xx

Nicola

An emotional day i bet as you try to get you life back to what it was

I hope it went well,I am sure it did

I've been watching the tv all night ... the stand up to cancer and for reasons i just cant explain I balled my eyes out over all those stories ... just felt i had a close connection with them all and felt what they went through .... even though my circumstance was in no where as bad as theirs

Vatch

Nicola, well done,!

Well done Nicola, hope all goes well for you x

Nicola,

Just seen your post.

Of course you are a different person to the one who went to work before.

You're one with an extra load of experiences and understanding.

Amazing to think you how far you have come  in a year. Well done you.

Thinking of you and looking forward to hearing how it all went.

Hugs

Annabel. xx

Hi Irene,

Long time no chat.

How are you doing these days love.?

would love to hear.

hugs

Annabel. xx.

Hi Nichola

Just wanted to say well done for taking a huge

Step forward.you have come along way since

Last year and I'm sure you are nervous.

Take step by step and I'm sure you will be fine.

Hugs hun xx

Hi Nicola,

Wow, what a long way you've come. I remember the feeling of not wanting to go back to work. but after a short while being glad I did. It's all part of the recovery process I think.

I hope that the first day back was okay for you. How many hours did you go in for? I started at 4 hours or so per day and then increased slowly over the following weeks. I used to be a bit of a workaholic and do 10 or 12 hour days regularly. I'm now careful not to go over 8 hours unless there's some crisis going on. My view of what's important has shifted.

Keep us posted - we're all on tender hooks.....

Simon XX

Hi Annabel (and all my chatroom pals)

Lovely to hear from you and thanks for asking!  I'm really good thanks apart from still not enjoying my food much, but I think it is still gradually improving and I know I've come a very long way.  My treatment finished end January and I was back at work part-time from April.  I started off at 2 days a week and gradually built it up with a mixture of working from home and the office.  We have a really big event the first weekend of July (Scottish Game Fair at Scone Palace) which is a really hard slog physically with lots of extra hours involved.  I was pretty worried about how I might cope with that. As it turned out I had a recurrent throat infection all through June which took several courses of different antibiotics to shift, and I wasn't well enough to work the whole weekend.  I've been feeling pretty normal since about the end of July, apart from the food issues, so nothing to complain about, although I do about the food!  I hear myself starting to go on about it at great length whenever people ask how the eating is going and realise I must be boring them to death, so I tell myself I must learn to say 'fine thanks'  and then zip it!  Nicola and Fray Bentos, I think this answers a question I saw in an earlier post and forgot to reply to - your response made me laugh Simon as it's exactly what I feel!

I've been meaning to post an update for a while but have been really busy with my elderly parents (90 and 88).  Mum was not long home from hospital after her second artificial hip dislocated, then Dad had a week in Ninewells after a nasty fall and bang to the head, home for a week, then has been in his local 'cottage hospital' GP unit for the past 3 weeks.  He's much much better, but getting increasingly frail.  So lots of hospital visiting, occasional overnight stays with Mum.  Glad I have two sisters to share it with but one of them is now away to Ireland to visit her son and family so it's going to be another really busy week.  Hopefully Dad will be back home soon, just waiting on getting morning and bedtime care package back in place for them.

How are things with you Annabel?  I hope you're continuing to get good feedback at your checkups?

Well it hadn't clicked until I came on here to read the latest updates that it is a year today that I had my first operation to remove the lump from my neck which started the whole thing.  At that stage it was thought to be in my parotid gland and 95% likely to be benign, so it wasn't until lab results came back that I got my diagnosis on Hallowe'en which will probably stick in my mind forever.

So many of us had a pretty rotten Christmas last year so hope everyone is looking forward to making up for it this year.

This forum was such tremendous support for me during the difficult days and it was you Annabel who recommended that wonderful book 'in your face' to me and Nicola.  It helped me a lot and I passed it on to one of my chemo-buddies back in January.   I've just re-read some earlier posts and it's great to see how we have all moved on.

Nicola - it was great to see your photos and put a face to your name.  I tried uploading mine but had problems with file sizes and cropping, might have another go now that I have a bit of spare time on my hands.  Meantime, if any of you are on Facebook and would like to say hello, you should be able to find me by searching for Irene Johnston (nee Murray) from Bridge of Earn.  My current profile photos are me and my daughter in pirate fancy-dress and a big group of girls in hill-walking gear (Amy and her mates who climbed Ben Nevis for our local hospital's cancer campaign last month).

Gary (Guzzle) I think I found your page but wasn't 100% sure, I will send a PM in a minute and hopefully you will confirm it's you!

Best wishes to everybody - keep well.

Irene x

PS - been feelin a bit 'maudlin' today, reflecting on the past year which prompted me to try and hook up again with my 'chemo-buddy' Donna who also read the 'In Your Face' book and found it really uplifting after experiencing tongue reconstruction.  We sat together in chemo a few times, exchanged emails and I visited her when she was admitted to the ward at the same time as me.  I feel like I've been kicked in the stomach as I've just found out via google and facebook that she passed away back in April.  Just feeling gutted.  Have others had this experience?  I made friends with two other lovely ladies when I was admitted for a few nights with extreme sickness/dehydration, both of whom lost their fight shortly afterwards.  I will never forget them though.  Feeling very sad. x

Access 14 from branchial cystvthread is ill. He is a lovely person. Hurts. G.