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

Welcome back Jo,

Good to hear that things went well. You were missed.

Pets can be very therapeutic (as can spouses).

Take care and good luck for your recovery.

Simon xx

Hi Simon

Just realised I missed this one when I last logged on, sorry!  I had Nystan when I was in hospital during my treatment phase.  This time the GP has given me Fluconazole and the antibiotics are for the chest infection.  I think I'm beginng to feel a bit better but still coughing like mad night and early morning.  Yes it sounds like we all share the 'no black pepper or spicy food' problem.  I see Guzzle managed a Korma recently so I may give that a try again sometime.

Cheers, Irene x

Hi Jo

Glad to hear your operation is now behind you and hope you have a really good and quick recovery period.  Sounds like you are being well looked after by partner and dog!  Braised liver?  Oh no!  Your sense of humour is still intact!  Don't overdo things and get well soon x

Hi Jo

Good to hear from you and glad to hear that all went fairly well.  I can imagine how you looked as my nephew was ina medically induced coma last year with a serious case of pnuemonia and as you know only too well tubes were going in and coming out everywhere.  Perhaps if Dynorod read your post they will consider expanding their area of expertise.

Glad to hear bth dog and partner are looking after you so well although I really think partner might have missed his calling is he is offering you liver after what you have been through.  Perhaps a stint on the comedy circuit should be calling to him.

Take your time and rest and hopefully you will feel better soon and if you do not like tennis or football I would say learn to like at least one of them as that is all that seems to be on tv for the next couple of weeks.

Best wishes.

Gill

Done my 50 mile spin thinking of you all. Clatterbridge hospital was a major beneficiary . Even had a post ride beer!

A very well deserved post ride beer.

Gill

Well done, Guzzle! X

Hello everyone,

The PEG is out! Horray!!!!

I was walking on air afterwards, I felt so happy! I surprised myself at how big a deal it was, I feel so normal again for the first time in almost a year! I don't miss it at all but I do find myself sitting, bending, dressing etc as if the peg is still there! The little hole healed within a day or so and the procedure went well (apart from the very miserable and unfriendly doctor!) they put the sedation in and I was out for the count and I didn't wake up for over an hour! Not sure if I was just sleeping? I was pretty tired! Very different to when they tried to put the peg in the first time, I remember everything even though I was sedated.

Firstly, massive welcome back to Jo and I'm so pleased the op seems to have gone so well. I did laugh about the liver dinner, a little insensitive of them too though. However your sense of humour remains in tact! I hope recovery is going as well as can be expected and that you are being well looked after (I am sure you are). Hopefully you enjoy Tennis, as there's a lot of it to watch at the moment whilst you're recovering!

Simon, you are right in saying that by being a little assertive about this can help. If I hadn't of asked about seeing my surgeon recently, the biopsy would have gone ahead last week and I would be worrying about the results now as well as dealing with a sore tongue. I also wouldn't have gone ahead with the peg removal either, so I'm glad I made myself heard!

Irene, sorry to hear you've been suffering a little recently. I suffered with thrush two or three times during and just after treatment, I seemed to be on anti biotics forever. I have also recently just finished a course of the stuff beginning with "NY" (can't remember the whole name!) it seems people like us will be prone to it now, according to my nurse. I hope it clears up for you soon. I still get down too about my lack of enjoyment for food. Curry is a definite no, wine is ok if it's rose, with lemonade that's not too cold or fizzy. I have many restrictions and although things have gradually improved, I'm not convinced it will get any better than this for me. We are all different though. I struggle to swallow foods, they seem to get stuck in my throat, that's where the enjoyment is spoiled for me. Others have managed curry etc again, hopefully that will be us too in the near future.

Gary, you seem to have coped amazingly well with treatment, I could never of contemplated exercise so soon! I hope your recovery is still going well. Any luck with travel insurance yet?

Gill, sounds like you have supportive employers who are helping you with your return to work.  I hope it is still going well although probably tiring. It's a shame you have gone back to work whilst we're having such lovely weather!

Speak soon everyone,

Nicola xx

Nicola, delighted for you. Having read a lot I think more and more food enjoyment will return. I'm not there with wine. To be fair with excercise I had no peg fitted which made it easier for me. I have only done a korma by the way which barely counts. I suppose its baby steps and trying things. Just had mushed up honey and banana on toast for brekky. That worked! Pancakes are good! Developed a sweet tooth. Not good! Travel insurance is still ridiculous so early post treatment. I think it will be a case of using what I have having disclosed everything to them. I am covered for everything apart from this. Next up is to think about when to go back to work. Any thoughts? I am 2.5 weeks post treatment. IM not quite ready yet. Whats everyones feelings? Especially those who have gone back?

thanks, Gary

Hi Nicola and other forum friends,

Thank you all for your kind words of welcome back!

Nicola, so glad the PEG removal was a success and a much more manageable experience than its insertion. I though about you when in hospital as the girl next to me was having a peg fitted. (She had gastric problems, not cancer) She had a few days of pain while it 'settled' down, then she received some training on PEG care and use so that she would be able to go home. She'd been in for 11 days so she couldn't wait!

Glad your trip to Disneyland was so enjoyable - how canny of you to have to return to visit all those little French boutiques in the future! Hopefully you'll be up to sampling the patisserie and Champagne by then too! X

Irene, sorry to read about your thrush problems. I hope the new medication gets you back on track soon. X

Simon, you're right about the therapy value of pets - just feeling that little warm, furry head next to me is a comfort - that is the dog, by the way! X

Gary, congrats on the 50 mile Spin! I think a that beer was very much deserved! I'm not a massive drinker, but have been known to imbibe a chilled lager or two on warm summer nights, however with my 'newly reduced' alcohol processing organ to consider, I think a wee tipple is a long time off for me! Bet we'll have a glorious summer with perfect BBQ and beverage weather! Never mind - very small price to pay!

Gill, hope your first full time week goes well. And it was the hospital who offered me the braised liver haha! Don't think my partner would have had the gall! (That's funny too as I had my gall bladder removed at the same time!) ah, you can't keep a good gal down for long!

Enjoy the sunshine folks, and will keep popping on to see how things are going with everyone.

Dare I say it, but I'm not a footy or tennis fan, so I hope this weather continues so that I can sit out and listen to the radio! Not likely to be Radio 5 though

Love and hugs to all, Jo xxx

Hi Nicola and other forum friends,

Thank you all for your kind words of welcome back!

Nicola, so glad the PEG removal was a success and a much more manageable experience than its insertion. I though about you when in hospital as the girl next to me was having a peg fitted. (She had gastric problems, not cancer) She had a few days of pain while it 'settled' down, then she received some training on PEG care and use so that she would be able to go home. She'd been in for 11 days so she couldn't wait!

Glad your trip to Disneyland was so enjoyable - how canny of you to have to return to visit all those little French boutiques in the future! Hopefully you'll be up to sampling the patisserie and Champagne by then too! X

Irene, sorry to read about your thrush problems. I hope the new medication gets you back on track soon. X

Simon, you're right about the therapy value of pets - just feeling that little warm, furry head next to me is a comfort - that is the dog, by the way! X

Gary, congrats on the 50 mile Spin! I think a that beer was very much deserved! I'm not a massive drinker, but have been known to imbibe a chilled lager or two on warm summer nights, however with my 'newly reduced' alcohol processing organ to consider, I think a wee tipple is a long time off for me! Bet we'll have a glorious summer with perfect BBQ and beverage weather! Never mind - very small price to pay!

Gill, hope your first full time week goes well. And it was the hospital who offered me the braised liver haha! Don't think my partner would have had the gall! (That's funny too as I had my gall bladder removed at the same time!) ah, you can't keep a good gal down for long!

Enjoy the sunshine folks, and will keep popping on to see how things are going with everyone.

Dare I say it, but I'm not a footy or tennis fan, so I hope this weather continues so that I can sit out and listen to the radio! Not likely to be Radio 5 though

Love and hugs to all, Jo xxx