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 do not think anyone will blame you for delaying the biopsy.  I know from your previous posts that the Paris trip has been planned for some time.

Go away and have fun with your daughter.  There will be enough time to worry when you get back and I doubt that a week or two will really make that much difference.

Have a great time.

Gill

Hi Nicola,

I'm really sorry to hear about your mouth. What you describe is sounds very similar to something I experienced some weeks ago. I had a white lump (sort of a creamy colour really, with some pink thrown in) on the rear underside of my tongue - it wasn't raised at all so a patch may have been a better description. I kept an eye on it for a few weeks and it didn't go away. I became quite concerned and the oncologist had a look and said that he thought it was a type of ulcer and that it was being aggravated by tooth friction. Anyway, long story short, it did disappear on its own accord after a month or so. I've since had another similar episode. Apparently these things are common post radiation. Do not worry (hard, I know) and enjoy your trip - you deserve it.

We're all looking forward to hearing about your trip!

Simon XX  

Thanks Gill and Simon, I appreciate your encouraging words. This really is torture!! I'm beginning to think that I should have just taken the Monday appointment for the biopsy so the results would be ready when I got back, too late now though. I keep thinking the worst and I don't know how to deal with this worry, it's going to be a good three weeks before I know anything and I can't seem to find much info on recurrent tongue cancer except that further treatment isn't usually an option, only surgery. It's not that I panic every time an ulcer appears, I've had loads since treatment ended but this one has hung around for three months now and is looking and feeling more and more similar to the original one last year. I've also been having sharp pains in my neck too. It's also really hit home now how cancer is always going to affect my life - whatever the outcome of this, there will always be that cancer cloud above my head. But I'll live with that, so long as I'm here for my little girl. I'm so, so worried!

I'll keep you all updated and let you know how the biopsy goes.

Nicola xx

Hi Nicola

I'm sorry you now have something else to worry about. Hopefully it's nothing. I don't know about you, but it definitely feels like I had a life before cancer and a different life after.

I've found that the worrying does decrease with time although I'm sure it never goes away completely.

Try and concentrate on the fab holiday you are going to have with your daughter.

Debbie

Nic, heart goes out to you. We all love our kids. The only thing I would add is that if your mouth has assumed  new shape then tooth rubbing is a logical outcome! Everything crossed for you. G.

Hi Nicola

Just enjoy your trip to Paris and try not to worry.  Once you get back the biopsy will be done and the results will come through and an extra couple of weeks is probably not going to make much difference at all.

I can understand your feel about the cancer cloud.  Even though there is no trace of my cancer each time I suffer even a minor infection it will be in the back of my mind that maybe it is the lymphoma returning.  Unfortunately I think this is something we all have to expect and will just be relieved when it is confirmed that it is indeed just a minor infection.

Do let us know how you get on.

Very best wishes.

Gill

Oh Nicola I am so sorry to read about how worried you are at the moment.  Seems all the more unfair that this should crop up just as you are preparing for your long-awaited and well-deserved holiday.  As we all know, trying not to worry is a very hard thing to do, but I sincerely hope you can put this to the back of your mind and have a fantastic time in Paris.   Keeping everything crossed for you, lots of love, Irene x

Hi Nicola,

And another thing to remember is that the recurrence rates for oral cancer are generally much lower than those of other types of cancer. Not much comfort I know but it is something to keep in mind, along with the fact that aggravated mouth sores, ulcers and other growths are very, very common in people like us (i.e recipients of radiotherapy to the head and neck region).

The point Gill makes about another couple of weeks not making much difference to how the thing will be dealt with, in the extremely unlikely event that it does turn out to be something naughty, is well made. Also, I think that once you are away this will go to the back of your mind (where it belongs).

I do understand how you must feel. The world is definitely a different place for us cancer survivors.

Have a good trip and we all want to hear how it went when you get back.

Simon XX

Hi Nicola,

Just seen your latest few posts and like the others, I was sorry to see that you've got a few worries just before your long awaited (and much deserved) trip to Disneyland.

We all know how hard it is not to worry, but hopefully, the sight of your little girl's enjoyment and wonderment in the park, will be enough to push the worries to the back of your mind for a wee while.

I look forward to hearing all about your trip (I'm off for my op next Friday so will be offline for a while!) but I'll be logging in asap after I'm home!

Enjoy Paris and we'll chat soon,

Love and hugs to you, Jo xx

Jo, all the best with op, G

Jo, all the best with op, G

Ah thanks Gary.

A bit on an auspicious date, being Friday 13th, but fortunately, I'm not really superstitious . . . . so as long as there are no ladders to negotiate and no black cats ready to jump out in my path!

I read your posts on here and on the Branchial Cyst thread and it's good to read how well you're doing!

Hope you manage your get together in Leeds in due course!

Take care, Jo x

Jo, some cultures consider this date a good omen! IM with them here! G.

Jo,

I'm with Guzzle on this one - Friday 13th is definitely a lucky day.....

Simon XX

Good luck for Friday Jo.  Wishing you a speedy recovery.  Irene x

All, any followers of branchial cyst Access had some good news. Cheers, All, G

All , any tips for  deteriorating neck burn. Got one week review with Dr. Tomorrow and aquous cream just doesn't seem to be up to the job. Nice gentle spin on road bike today but factor 50 / neckbbuff on, regards, G

Hi Guzzle

When my neck skin began to break down (very close to the end of treatment as I recall) my specialist nurse gve me a supply of wonderful sterile dressings called Mepilex Lite which you just cut to size and they were very easy to apply.  She also showed me how to sluff off the dead skin by mixing up your aqueous cream with water and using it on a scrunched up swab like soap.  I always remember I was pleasantly surprised how quickly the skin healed up (in just a few days I think) with no signs left of the burnt area.  Hope all going well with you otherwise.  Best wishes, Irene.

Irene, thanks for prompt response. Nurse has mentioned dressings so Ill make suggestion tomorrow. Apart from that trying not to lose weight. Had a spin on bike today. Post treatment is frustrating but too early fir return to work! I hope to make Malta in August though. How are you?

Regards, Gary

Hi Gary,

Not too long to go now and you can relax back into normal life. Enjoy the bit before you have to return to work.

Malta is good. We went there some years ago and had a small villa in St Pauls Bay. I recall that Paradise bay

just round the corner was good for swimming. We found the people very friendly. I hope you enjoy it as much

as much as we did.

Colin

Colin, good to he from you. Finished treatment last week avoiding tube and just had early one week check. Lost a stone or so but off painkillers pretty much. Had cumbrian sausage mash and onion gravy today which nearly finished. Gravy helped. Still taking light excercise. One week out. Doctor supirts trip so holiday insurance next which she will give me a letter fir. Cant remember conclusion we came to regarding best company so if we could refresh that debate it would be great although I have a list. Looking forward to Malta. Staying in Qawra and just been looking online. Found a place to swim with dolphins in semi wild environment which guarantees the experience!

Regards, Gary