Virgin throat Cancer sufferer

Hi all

I have just been diagnosed with Throat Cancer (28th April) and although at the moment Docs can only find the secondary site (right neck lymph node), they are still looking for the Primary - I've had my CT and PET CT scan done and nothing found, so I am now going in for multiple biospsies to find that prime site

Although this started off very rocky I have been told that its not only treatable but cureable, so I suppose i am luckier than some on here and aware of it

I am a very positive person and am just taking this all as it comes to me .... as I am sure you are all aware there is a lot to take in when you are first diagnosed

I think the biggest problem with me at the moment is i dont feel ill .. I just had a sore throat in Feb, which did not go, my glands were up, but one never went down so went to the docs who sent me to the hospital and within a few weeks i was diagnosed

I am sure at some point the treatment is going to hit me but i am still unaware to what extent ... and i know its different for everyone

Whilst Docs are still trying to find the prime site I am getting close to starting my Radio and Chemo Therapy for 6 weeks .. I have also been told that the Chemo should get rid of the secondary tumour in my neck lymph node so they are hoping not to operate and i wont lose my hair ... but i will deal with that one when i get there

As I said, I have difficulty defining how ill i really am (not as bad as some of you on here i know) I still play Squash, Football and take my wife Salsa dancing, but i guess whilst going through the treatment i am going to have to slow things down and look after myself

So i just wondered if any of you on here had gone through similar treatment and if there any advice you would like to offer

From what i can see constipation appears to be a big issue and some suffer with terrible sickness

But from the point of starting my treat whats my rollacoster to recovery

Oh and any information about having a peg fitted and how that works and for how long going forward would be appreciated

onwards and upwards

  • Guzzle,

    Holiday was good thanks. Eating out was an issue as neither of us speak Spanish - we weren't is in a holiday resort and it's difficult to communicate that you can't eat pepper or spices etc. When ever we ate out I had omelette or similar and we prepared our own meals at the villa most of the time. My wife made a ton of cheese sauce on day one as this is an essential element of most of my meals at the moment. Heat wasn't an issue and I power walked across a mountain each morning and even managed a short run or two. We're now going to go further afield in January or February - probably Caribbean as we like it there and I miss my holidays.

    Take care matey.

    Simon.

  • Simon, I know running is tough to get back. I still struggle. Well done mate. Caribbean sounds fab. How will you sort insurance? Put an exclusion in? Your wives cheese sauce sounds excellent. Luckily I can enjoy moderate spicing but not to my previous atomic curry level! Have a look at Nics proposal for pre Xmas drinks.

    All the best - we will be up to half marathon next year!

  • Hello Guzzle,

    You asked Simon about sorting out insurance. Travel insurance can be a bit tricky for people who have pre-existing medical conditions including those who have been affected by cancer.  So if you have not already seen it you may be interested in looking at our section of information about travel insurance. You can view it here.

    The section contains general information about why it is important to have travel insurance, the European Health Card and what this covers while travelling in the EU. There is also a list of insurance companies that we believe have insured people with cancer in the past. Unfortunately we cannot make any specific recommendations as there is not a one size fits all approach to this. So it pays to do some `shopping around¿.

    I hope that the information in the links is useful.

    Kind regards,

    Jean

  • Hi.

    I'm sorry to read about your current worry Vatch. I hope you get results soon and let us know how you get on.

    Guzzle - my travel insurance quotes were horrendous until a year had passed since the end of treatment (with most refusing to cover me at all!). Now I've got insurance which covers both the cancer and the brain tumour and cost £168 for me, hubby and the kids for two weeks in Florida in April.

    Debbie

  • Deb, that actually sounds reasonable - that will be a well deserved holiday for you all!

  • Hi all

    Just to update you all

    I had to see the Maxofilio Consultant at Addenbrookes yesterday ... very nice bloke too put me very much at ease

    The think I have a radiation burn on my tongue that just not healing, but as a precautionaery measure they did a biposy o my tongue and wow does it hurt now .... back on the morphine and codiene and cant eat anything by mouth so its 100% milkshakes via my PEG .... and i so want to get ride of my PEG

    I had to have the tongue stitched too as it kept bleeding and to top it off the took an xray and have suggested that tjey remove my two lower wisdom teeth ,,, apparently they will be difficult to clean in later life which opens me up to infection and because of the radio therapy could lead to necrosis of the jaw bone .....

    That's if i am unlucky

    I go back to ENT on wednesday for my first full review post treatment .... and gues whaat they will put down my throat, yep tha horrible camera, but i shouls also get my results of the biopsy

    So Debbie, Nicola,Simon and Gary how are you all .... all doing well i hope

    Oh I am now 7 weeks post treatment and although i cant eat anything at the moment i can say i can really taste anything.... i have totally gone off sweet thing which might be a god send in the long run, but sweet things i am finding are really painful on my teeth God knows why ..... Guzzle I know your taste came back failry quickly but what about the rest of you ..... would any of you say its back to normal yet

    I also keep losing my voice ... it just comes and ggoes but i have noticed that its a good few octaves lowere than it was pre treatment and at the moment it has a low rattle ... I do a perfect example of a Dalek .... EXTERMINATE!!!

  • Vatch, good to hear you mate. Getting there but still have a bit of fatigue. Cant run as fast/far as I could! I think that is muscle wastage. Can't really drink as much but enjoy a few beers. Cheap date! Glad it seems Ok. Taste is mostly there. Can't do v. Spicy yet. Dry mouth overnight.keep at it! Book that holiday!

  • Hi Vatch,

    Good to hear from you.

    Better get used to the camera down throat because you'll have that monthly for around a year!

    I'm now a year out from the conclusion of my chemo and radiotherapy and at my check up yesterday I was told that I now move to bi-monthly check ups for the next year.

    Mouth still dry but possibly not as dry as it was a few months ago.

    Taste is not too bad but, like you, I can't do sweet things - not a bad thing really as we need to protect our teeth due to the lack of saliva.

    Can't do chips or bread etc.

    Life is good, and so will yours be!

    All the best, mate.

    Simon.

  • Hi Vatch

    Glad you are on the up!

    My taste is pretty much back to normal but certain textures are still difficult eg bread, crackers, chips. I do eat them though!

    My energy is pretty much back to normal. The only thing I have is that my throat sometimes makes a clicking noise which can be embarrassing. It's a bit like Skippy the Bush Kangaroo (if any doof you are as old as me!). Does anyone else have that?

    Also, when I got a cold, it was a nightmare because I had to keep swallowing all the time due to the lack of saliva. Still, a small price to pay!

    Debbie

  • Getting there kid - but can't quite do the Jalfrezi yet! Soon I hope!