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

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 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

A very well deserved post ride beer.

Gill