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 everyone,

Not much to report except that I had a dental appointment yesterday at the Dental hospital and had two fillings!! I may also lose another tooth! Just to recap, before my radiotherapy started I had to have eight teeth removed so I have no back teeth on the top or bottom on my right side. So all chewing is done on the left side which means those teeth are being used much more. Along with the reduced saliva, decay has accelerated and a tooth that had root canal treatment three years ago is giving me a bit of trouble so looks like it will need to come out. I'm reluctant due to already having lost so many teeth, I have no idea how I will eat very well with another missing tooth which will be on the 'good side' I'm going to mention this to my surgeon at my next check up, just to get his advice.the dentist had to put three injections in to numb the area as my mouth just wasn't going numb! I think it's immune to everything now!

Simon, I'm struggling with weight gain too and I feel that I'm not going to put on anymore now. I'm still 6 stone 1 and I don't see how I will ever gain a stone to be back where I was. My diet has changed so much and along with the tooth issue, food and naughty treats just don't appeal as much anymore. I too have replaced all of my clothes for smaller sizes, I thought it would be a temporary measure but now I see its long term. I'm unable to taste ice cream either, very annoying! Puddings are difficult, not much agrees with my dry mouth. Glad to hear your saliva is improving, there's hope for me too! Are you using any mouth sprays? I started off on four hours a day at work once a week and I'm struggling! Fatigue has come back to haunt me as it was a few months ago but I'm going to struggle through it, it's all I can do. I was trying to explain to my boss today about how fatigue makes me feel, but I just can't describe it.

Irene, so sorry to hear about your friend. I remember you talking about her before. I often wonder about the other patients I met and how they are doing. I really wish we could have all stayed in touch. Christmas will most certainly be a better one this year, although I have many sad memories of last year so I'm anxious about that. I hope those memories won't get me down too much. I will think of you all when I eat my Christmas dinner (or what I can of it!) and sip my wine! Last year was an NHS milkshake down my tube and a rest on the sofa as I had only just finished radiotherapy a few days before. I had never felt so ill! I remember you had just started your treatment, it was hard to imagine back then where we would be now. I hope you can become friends with food again, and find some things that suit you and that you can enjoy.

Guzzle, I was sad to hear Access is unwell, are you still keeping in touch with him? I did wonder Why he hadn't posted on his thread in a while. Keep is updated if you hear of anything.

Vatch, I hope all is well with you a so know you were waiting for news. As for face pain, I don't recall any but I do have a weird pain/sensation in my neck, ear, jaw, chest since my neck dissection. The area is still numb but now and again I get a bit of pain. Have you asked your consultant what it could be? I was unable to watch the stand up to cancer programme, I knew it would be too upsetting. I get very emotional these days, god knows what that radiotherapy did to me but anything makes me cry now!

Hello to everyone else, and thanks for wishing me luck at work. All being well I will increase my hours very soon. Or work from home occasionally. As ever, it's lovely to have everyone's support on here.

Speak soon,

Nicola xx

Hi Nicola,

Thanks for your message.

The surgery should only take three hours providing the tumour is as they think it is. I don't think they are going to cut a whole part of my tongue off like I thought, rather dig the tumour out. So I will have a piece of tongue missing, but it will be underneath and a tiny piece off the front missing. I think this will feel weird for a few days. They said I will need some speech therapy but it should not take long for me to recover and I should only be in hospital for a few days.

I did read your early posts before I was diagnosed so it was a big help as I knew what could happen once I was told and what the steps were likely to be.

For the first few days I was on a bit of a downer but this seems to have passed now. Going around in circles asking why me, what have I done to deserve it, its not fare so young etc gets you nowhere.

I keep finding I forget about it all, and then it hits me. But I am very greatful that its early stage, and there are others going though far worse.

The operation should take place within the next three weeks. My neck is still painful every now and then and also sometimes when I swallow, but I am told this is due to the nurve the tumour is on.

Thanks for taking your time to reply and I will keep you updated.

Nicola

sounds like we all go through degrees of the same thing

- Whereas i loved my sweet pudding and cakes, I now have no desire for them

- I also loved to eat, now i just find it a chore

- although I am managing to slow my weight loss it still continues and I too have had to buy a few new clothes as i "echo" around in the clothes i used to have

Sorry to hear about all your teeth problems. I though i had got away with that, but it turns out that my own dentist might not have done a proper job ... we will see what happens there as i have my first dental appt at the hospital next week. Still i doubt it will be in no way as severe as yours

I understand what you say about work, i am now 10 weeks post treatment and back at work at about 85% i suppose. It takes me 1 hour to drive to work. i get in at 9 and leave at 4 and when i get home at 5 i go straight to bed and sleep deeply for a couple of hours....by the time Friday comes along i am shattered

I went to london for a few days with the family to do some sight seeing, but my enthusiasm was a lot bigger then my strength to do it and started to flag painfully by the end of each day, still it was nice to have had our first family sight seeing outing post cancer treatment.

I am told it gets better but i think its something we have to help along by doing some light exercises, but i cant be bothered with all that at the moment even though its for my own benefit

Any Nicola i hope you dental appt goes well and the getting back to work is not too tiring

Vatch

Hi Nicola,

Thanks for your message on my thread!

Sorry to read you've got to have more dental treatment. Fingers crossed your dentist can offer an alternative to a further extraction.

Also so sorry that your fatigue is affecting your return to work. I think it's very difficult to explain to anyone who has never suffered from certain things (fatigue, depression etc) just what it feels like. I hope you're not pushing yourself too hard though and hopefully, your boss will be supportive.

Well, I'm frantically catching up with forum buddies before the site closes for the weekend. I'm looking forward to seeing the 'new look' forum on Monday (including a new style, Meerkat avatar!) if only real makeovers were as simple! Haha!

Have a good weekend, Nicola.

Hugs to you, Jo xx

p.s. Irene, I've been thinking about you when I've been out and about doing my shopping!

Christmas is very much on every shelf now, and  it's such a pleasure to be planning for a 'better than last year' Christmas!

Hugs to you and everyone else on the thread,

Jo xx

This new forum style is a bit weird to start with. :)​ 
 
Just to keep the thread updated. 
 
I feel a bit selfish keep talking about myself but I find it so hard to look at other posts and think of something to say.  
 
I am going to have my surgery on Monday afternoon, it should only take a few hours and I am going to loose nearly all of the front of my tongue from what I have worked out. About 4CM from the front is going. I might have a little bit left on the side. They want to take more healthy tissue away to make sure all the cancer is gone. They said they would not do this with an older person. But I should recover and adapt quickly. 
 
I am worried about what it will feel like after, having a gap where the front used to be, and I also worry about eating with food getting stuck and not being able to dig it out with my tongue, and talking, but I am confident after the shock of having the feeling of the tongue gone, I will begin to get used to it and start to make a recovery. My only other worry is my neck glands but its not likely its gone into them so I am pushing that to one side.
 
I just want to wake up and discover it all was a bad dream, but the hospital are very helpful with questions and support. And very quick with treatment. 

Everyone I have told has been supportive apart from a few people but some people just don't want to deal with anything like that, I was like that before, so I don't blame them.

Good luck to you all and I will post an update once everything has been done.

Have a good weekend!

Hi Rozdog

Just wanted to wish you all the best for tomorrow and wish you a speedy recovery.  Look forward to hearing from you soon.  Love Irene x

I have a question friends.  I know there are different schools of thought between different hospitals but I've been re-reading some threads today and wondering about the fact that I haven't had any follow-up scans during the time since my treatment ended in January.  I did ask about this and was told it was because they are able to see the site of my primary cancer (the one I had no idea I had) from visual exams of my mouth/throat (i.e. when they put the spatula on base of tongue and make me say AAAAH to the point of gagging).  I've lost count of the number of times I've tried to look down my throat in the mirror and see nothing.  I've always placed my trust in the team treating me and been happy to be sent home after monthly checkups with 'all well, see you in a month' but in light of others' follow-up treatment am now wondering if I should have been given a scan to confirm all is well?  I'm sure I must have a case of the anniversary jitters because it's just been in the past few weeks I'm starting to worry again about a recurrence although I have no symptoms - being a bit paranoid maybe?

Hi Irene and Nicola,

Thank-you for your words of support. 

I have my pre op drinks to take at midnight and 5am!:D These are meant to help quite a lot in recovery.

I have an early start to have the dye injected and then just a few hours wait until the surgery.

Its nice to hear from you knowing you have been there. I suspect the fear of it is worse than the actual thing.

I will update you all once I am out of hospital which should be only a few days later.

Thank you so much.

Hi Irene and Nicola,

Thank-you for your words of support. 

I have my pre op drinks to take at midnight and 5am!:D These are meant to help quite a lot in recovery.

I have an early start to have the dye injected and then just a few hours wait until the surgery.

Its nice to hear from you knowing you have been there. I suspect the fear of it is worse than the actual thing.

I will update you all once I am out of hospital which should be only a few days later.

Thank you so much.