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

Hi Nicola,

I read your update on my way into work today and it really cheered me up. I am so chuffed that you managed to get some reassurance before your trip, and then that the trip went so well. As mentioned before, your ulcer issue sounds almost identical to the problems that I had - the fact that they do not go away in the timescales mentioned on the NHS site sets all sorts of alarm bells ringing. It is good that you have a good consultant who took the time to explain things thoroughly to you. It also helps that you were fairly assertive around this - sometimes it pays to exert a bit of control and pressure.

I hope that the PEG removal goes smoothly - it'll be over in a flash and you'll lose your dangling friend!

Well done and good luck.

Simon xx

Hi Nicola

I'm so pleased that you had a fab time in eurodisney. I took my son when he was one and we had a great time although it was in December and freezing! We loved it though.

My peg removal was a breeze and it's amazing how quickly the hole closes up - hours rather than days! I really hope yours goes as smoothly. I did find it weird once it was out and I kept forgetting it had gone.

Debbie

Hi Nichola

I'm thrilled to bits that you've really enjoyed your holiday and that everything fell into place beforehand so you didn't have to go away worrying about that ulcer - what a relief it must have been.  I felt the same as Simon, it really cheered me up.   Also delighted to hear your long-awaited PEG removal was happening today.  Hope all went smoothly and you enjoy being rid of it dangling around.

I'm doing away fine but for the last 2-3 weeks have had a cold with persistent cough and taste buds have taken a massive step backwards.  Have also had an over-sensitive mouth, so I've really not been enjoying eating again for a while.  Went to GP last week and had to give a sputum sample which revealed there was some bacteria and also turns out I have thrush again.  Did others get bouts of thrush throughout their treatment?  I had frequent conflicts between hospital and GP as to whether I had it or not.  There has been no visible sign lately (like white furry tongue) but I'm now wondering if this and the mucus infection have combined to make eating such a hassle again.  So tonight I am delighted to have a course of anti-biotics and thrush treatment and am hoping that once these work their magic I will get back to where I was 3 weeks ago - begining to enjoy some of my meals again and certainly managing to get bigger portions down.

Best wishes to all my friends on this thread - great to see everyone supporting the two Gary's now.  Guzzle - well done on reaching the end of your treatment, sounds like you are eating really well and managing to keep pretty active.  Vatch - how's it going with you, any news on your treatment plan?

Jo - how have you been since your op?

Love, Irene x

Hi Irene,

I too suffered from the dreaded oral thrush. The symptoms were a very heavy furry coating on my tongue. Antibiotics turned out to be a waste of time for me but a medication called Ny***** (can't remember the precise name) did the trick. My tongue is now totally clear and bright pink - it does get sore very easily and I'm very sensitive to hot drinks or food. Like most people in our position I can't deal with anything containing black pepper or any degree of spice. I hope that you get the thrush sorted soon because I know that it can be a real nuisance.

Good luck.    Simon xx

Irene. Sorry you have thrush. Dodged it thus far. My neck has healed two weeks to the day post treatment. Taste not right although I can eat well and have actually had a beer! How much taste did you get back? Ive developed a sweet tooth! But cant do spices which I loved. Managed 23 miles on bike today and going to attempt the Liverpool to Chester 50 miler Sun but as Simon advised me running is tough. Even a couple of miles hurts;

Hi Gary - Glad to hear your neck has healed up quickly and that you've managed a beer as well as eating well.  My taste was just beginning to improve slightly when I got this blasted infection which has knocked it right back.  I got a bit down recently when I met someone who had had the same treatment 12 years ago and still doesn't enjoy his food.  However as they keep telling us, everyone is different and hopefully that won't apply to us!  Like you, I am much fonder of sweet things than I used to be, but not chocolate, which I used to love.  Likewise I can't eat anything spicy now either, which is a bit of a bummer.  I think the sweet tooth is quite common after RT.  Don't overdo the running but sounds to me like you're doing amazingly well with the cycling.  Keep up the good work.  Cheers, Irene.

Hi Everyone!

Have cheated and cut and paste this from my thread - hope that's ok?

I'm back in cyber space! Some of the time I've not been sure what 'space' I've been in! That's Tramadol for you!

Well, the operation went well, all 3 tumours removed and 40% of my liver resected!

I spent 2 nights on HDU and was then transferred to the post-surgical ward. My partner was initially overwhelmed to see the amount of equipment, wires, drains and monitors.  Couldn't really see from my vantage point, so he took a photo - Wow! I looked like I'd been operated on by Dyno-Rod!

I was actually discharged aft visiting last night, but have been having some pain issues, so this is the first time of 'logging in!'

This op has made me feel more poorly than the bowel resection, but the specialist nurse warned me that I'd feel more 'rubbish' at the beginning, but then recovery would seem to gather pace more quickly!

The dog was so thrilled to see me - and the 'Don't jump up!' Training that my partner had done in the time I was in hospital, really worked.

He seems to know I'm not the ball throwing, mate I was before I 'disappeared' but he's very happy to sit at my feet (or lie next me at nap time! Yes, naughty I know, but it's so comforting to have them there!) This is the dog I'm talking about, by the way!

(Partner very wonderfully, supportive as ever too, but better at cooking etc rather than lying by my feet!   )

Well, I'll leave it there, as no doubt, I'll stop typing and feel wrung out again!

I'll catch up with your news over the next few days and drop you some messages, but bear with me!

A 'classic' comedy moment alert!!! - I was offered Braised Liver for supper last night! Really??? The irony made me chuckle - maybe that's why they offered it, isn't Iron-y good for the liver??

Bye for now, love to all and hope you're all ok!

Chat soon, Jo xx

Irene choccy is a no no for me also. Marmite is ok though! Have had a korma which was ok. You will enjoy your good again Im sure

Coffee is also good!

Jo you rest and recover. England are out so you will get undivided attention. Discovered s French chilled out band called Nouvelle Vague. Have a listen whilst on meds! It should sound great!

have lovely weekend.

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 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