Irene, I hope its the peppers rather than the wine! You are doing well trying. Hows your taste buds now? Mine are going a bit wonky but can still eat. Just want to get it over with and into recovery mode now. Were you on red or white!

cheers, Gary

Hi Gary

My taste buds are gradually improving but still preferring sweet to savoury.  Can't say I'm really enjoying my food yet, but managing to eat pretty normally now.  You described it as 'shovelling down like fuel' and it's pretty much the same for me.  Oh and the wine was rose!

Best of luck for the last part of your treatment and hope you manage to keep on shovelling.

Irene

Hi Irene et al,

I still suffer from excess mucas after 7 years. I had 42 Rt sessions(The French don't mess about).

Although I can only drink a small amount, I have a little hot coffee. I find this softens the mucas and

it is easier to cough up. Also its good to cough from the diaphram not the chest.(like when you sneeze)

I used to get discomfort from too much coughing

They carved away a lot at the back of my throat so I can easily see into my throat.  I remove stubborn

bits of mucas with a long (10'') pair of tweasers.  If I so much as touch the surface it bleeds right away.

Your Rt being very recent I expect your throat is still very sensitive.  I think it is worth mentioning at the hospital

as they will be able to see if your throat is the source of your bleeding.

I have a very small amount of wine half and half with water. I still find it too painful on its own. I use a liquer glass.

I find if I don't concentrate I have a choking fit.  As I have my 7 year checkup next month I'm not complaining.

Gary,  You seem to be sailing through your treatment.  I could not have managed a 1 mile run at your stage,

but then I am somewhat older.

Regards

Colin

Colin. Don't know about sailing but been lucky compared to many. Sore throat managable with meds so far. Just had a cheese sandwich but took crusts off and had it with sips of water. Followed by small pork pie. Just small bites taking my time. My goal is to get through without the dreaded NG tube which necessitates a hospital stay. A bonus would be to get through without nasty suppliment drinks. I know both are a possibility though. I like the term et al. Reminds me of acadaemia. IM going to try a cookie now, Regards, Gary.

Hi Colin

Thanks for the feedback.  I will certainly mention this problem at my next check-up which is 4th June.  Sorry to hear that the mucus is still bothering you after so long.  Think I'd better get myself used to the idea of being in for the long haul - I met a guy recently who after 12 years has major throat-clearing problems in the morning and I felt a tad downhearted when he also said he still doesn't enjoy food much and seldom eats out for that reason. However, like you, he wasn't complaining, just happy to be well and enjoying life otherwise.

I can't seem to get it through to my husband that the throat-clearing is a side-effect of the RT which I have to live with and that he has to learn to live with the nasty noises that come with it!  Like you, I find things ease off a bit after my first coffee in the morning. 

Cheers

Irene

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

Gary, forgot to say on your other post clarify that they are not taking the lump the lump out surgically which seems to be common practice before treatment

They will try to find primary Ss this narrows down area for irradiation.

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

Hey Nicola, will Definately keep you updated about Leeds and hopefully all the others here. I hope to meet Access and maybe a few others from the branchial cyst thread who have been a great help to me and it would be lovely to meet anybody here who fancied it. Its a long way but I plan to get the train and stay over carrrying onto Scotland to see some friends the following day. I'm still eating. On co codemol, oramorph and just got a patch which helps me through the night. IM afraid the dreaded phglem has arrived! However I only have 4 days left (4 radiotherapy and1 chemo). I hope to get through without the dreaded NG tube. Some fellow patients been in since week 2. Anyone remember how much symptoms got worse first few weeks post treatment?

I am just enquiring about a week in a convalescent facility in Harrogate through my employer . I hope to spend week in the gym, sauna , getting massaged / pampered to get my energy levels up. It may be worth checking via employers/unions/health insurance etc is if anything like this is available. I know you went on a similair thing and found it beneficial Nic! I hope you all continue healing and that you spend s shedload of Euros on nice things in France Nicola,

All the Best, Gary