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

Hiya Roz

So glad to hear that your cancer has not spread but sorry that you are having to undergo reconstructive surgery to your tongue. As you know, Nicola has gone through this and is doing just fine now.  I'm sure she will be a huge support to you (as we will all try to be) becayse she has first-hand experience of a similar procedure.

I remember when I was having my treatment that I got so angry and upset to see youngsters like yourself going through this.  It's not pleasant at any stage of life but just seems all the more unfair that when you are young and should be enjoying life to the max, to have to cope with this bombshell.  However you will get through it and before you know it, this will all be a distant memory.

Keep your chin up mate and do keep in touch and let us know how you are getting on.  As I think I said before, it's a brilliant place to ask questions, get helpful tips and have a moan if things are getting you down.

We'll be with you all the way!

Love Irene x

Hi Annabel

Lovely to hear back from you and thanks for sharing your similar experiences.  Have also been really sad about Lynda Bellingham - what a gutsy and inspiring lady though! 

Much love to everybody.

Irene x

Cheers Jo, will be raising a glass to all my chatroom pals this Christmas and New Year for sure!  I remember bringing in the 2014 New Year on an Activia prune yoghurt

Hi Irene,

You've reminded me - I remember so much wanting to enjoy Christmas dinner last yeat but I struggled to get even a roast potato soaked in gravy down. I managed a small school dinner-sized portion but it was hard work and I had to leave half of it. You've made me look forward to this year where things should be much better! Bring it on!

Simon XX

Hi Simon

Yes we've come a long way since this time last year.  Bring it on indeed! Irene x

Hi  Roz,

I lost about 60% of my tongue, but then my cancer was more advanced than yours.

They will presumably cut away the part underneath on the lefthand side where the growth

is and then some of the top and then just join the two parts. down the length of your tongue.

If your surgeon is as deft as mine it should be pain free. The stitches fall out after some days..

Whilst you are unlucky to have cancer at least you have had it diagnosed quickly.

I faffed around for six months plus whilst 3 specialists??? said 'looks OK to me'

I then saw a real specialist who put his finger on my tongue and said 'I think its cancer'

Good luck! I hope all goes well.

Colin

Hi Roz dog, I'm so pleased to hear that your cancer has not spread! Any idea when your surgery will be? I wish you all the best for a quick recovery.

Your surgery sounds different to mine, they originally told me they would do the same as you're having before I had my scans when they thought my tumour wasn't quite so big and they told me it would be a four day stay in hospital. Hopefully you'll be out in no time. Unfortunately my tumour was bigger than expected so I lost half of my original tongue which is why I needed reconstruction using muscle from my arm so it was a two week hospital stay. However, there was no pain and it was not so bad at all so I'm sure you will be fine too. As Colin said, the stitches fall out on their own and overall, my mouth healed within a few weeks after the surgery. It was just a shame it then got blasted with the radiotherapy just after!

Keep us updated, I'd like to know how you are getting on. Life is so unfair that these things happen, but sometimes being a younger patient can go in our favour with recovery. Stay brave, it'll all be worth it in the end.

Nicola

Hi Colin,

I seem to have been quite lucky in getting to see the right people, my GP was unsure but referred me, and the consultant I saw knew straight away I think.

I would of left it, but my mum kept bugging me to get it checked, thank god.

So far so good in regards to the NHS.

They seem confident it will be straight forward so I am not that worried about the actual surgery, more what the after effects will be like.

I will update when its been done.

thank-you

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.

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.