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 , you jogged! What a guy! Just been over long mynd in Shropshire on bike which was lovely. You and Mrs enjoy Florida. If you ever get back to UK you know where I am! Best Wishes, Gary

Hi Gary,

We are only going to Florida for three momnths.  We go every winter. Only being able to eat via my peg makes

holidays awkward. In Florida I order food bags and tubes for the 3 months and its like being at home.

It costs about $1300 which the French unfortunately don't cover. ( I get my food etc delivered free, monthly here)

Just to make you jealous  - I had a blood test on Tuesday at about 9am. At 3pm  went online and had the results (All good)

Regards

Colin

Hi Nicola and gang,

Just back from Spain - good holiday and it was nice to have a break from the normal routine.

We tried eating out on a few occasions but it was difficult to ensure that the food was spice free and soft etc. Neither of us speak Spanish and we were not in a resort where the locals tend to speak English so I played safe with omelettes. However, we were prepared for this and my wonderful wife made a batch of cheese sauce on day one and we ate mostly at the villa. Heat was not a problem and I even managed a very sort run early in the morning. Fatigue and sore mouth still a problem but these are pretty well manageable.

Nicola, Vatch seems to be having similar ulcer problems to us - I've put a comment on his thread to try and reassure him. I can remember how worrying such things are.

Hope that everyone is doing well. Colin, three months in Florida!  Lucky blighter!

Simon XX

Simon, so pleased yo had a nice hol and well done on the run. This is is the toughest excercise to get back to . Think because its load bearing. Have a look at the thread about getting together for a drink lunch. Maybe when Vatch up to it. Colin enjoy!

Hi Gary,

Is the meeting up thread elsewhere?    I would be interested if it is before we go to the US.

We have not booked yet, but normally go about mid-December to avoid the bad weather

for the drive through France. We fly from Gatwick.

When in the UK we stay with my son at Ampthill, so the Midlands would not be too far to go.

Colin

Colin thought it was earlier on this one. Nicolas in! Kids could be good. Was talking nearer Xmas?

Hi Gary,

I see the thread. I thought perhaps there was more elsewhere, silly me..  Perhaps if it is a success there wil be more

If the meeting up happens I hope you will take some pictues of the group that attend.

I hadn.t thought about it but I suppose that cycling is a gentler exercise than jogging. Perhaps

I will jog one day and cycle the next. It does become easier to damage muscles as you get older

and cycling is good exercise without the impact of running.

I shall be in Brighton this weekend. My son is treating my wife and I to a James Taylor concert

on Saturday. Its for my birthday or Christmas - I can't remember which. He is a bit tardy with these things.

Regards to all

Colin

Colin, enjoy the concert buddy. Hopefully we will  get the chance to meet in future. You are an interesting chap! Any of the team I am Gary jones on fb with a picture of an iron man on a beach. If you want send a request explaining who you are. Cheers. Gary

Hi Gary,

The concert was great!  I can't believe how good he is at 67.  I'm not sure about Brighton.

The coast road there was a traffic jam all day. Even on Sunday, and prices for hotels and

meals somewhat expensive.

Its nice to think that almost all the people on this thread will be back to good health, relatively

speaking by christmas.

Next week we go to a book sale held by the local cancer support group. They themselves are well supported

by the ex-pat community. I am not involved as I am hard to understand .

Colin

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

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