Hi
Just to give an insight about how I am feeling so others in the same position may be able to get an idea of how someone else is feeling!
I had Tounge Cancer which spread to my lymph gland (right side). I was diagnosed in April last year. (I was 58 at that point).
I was told it was caused by HPV. This didn't overly bother me (the HPV) and being told I had cancer upset me a bit but I was OK with it (as much as you can be!).
I told my Boss and my wife who have been very supportive. The friends I told were also quite understanding, but I also told my sister who dismissed it saying "I know everything there is to know about cancer" She didn't give me a chance to say how I felt, and was more interested in telling me what was going on in her life. and to this day, I still feel quite upset about that. For some reason, I haven't spoken to her since October- and she only lives 5 miles away - Maybe I have done something to upset her - or maybe she is wrapped up in her own life! - Whatever...
The next thing I did was to make a will and do a lasting power of attourney. Making a will is something everyone should do anyway irrespective of the cancer diagnosis, but i was reluctant to do a lasting power of attourney, - don't know why - but my wife asked me to do it (and I usually do what she asks!)
I had Six weeks of Daily radiotherapy and 2 Chemo visits. My treatment ended at the end of August last year. I was fortunate to have hospital transport every day ( an hour's journey each way!) By the way - if the taxi drivers that picked me up were on mastermind, I'm sure their specialist subject would be throat cancer!
Initially I did get a bit stressed - not about the treatment - just about whether the transport would turn up! Being fitted with the mask and having the treatment was easy and It didn't really effect me until the 4th week when my neck started to feel tight and sore- and I started t get more fatigued. In fact - I can definitely say that the treatment was a breeze compared to the psychological after effets - but everyone is different - this is just my experience.
Before the treatment, the dentist kindly removed all my teeth. I was fitted with a PEG in July last year which I still have. Having the PEG fitted was a bit psychologically hard but after a couple of weeks, I got used to squirting the feed in myself. (Before that - I got my wife to do it).
Weight wise - I was a bit overweight at 101 kilos before the treatment - I am now at 88 kilos.
I had a neck dissection done at the end of December and whilst they were at it I had a oesephacal dilation as I was unable to eat or drink anything. This enabled me to drink, but all food was still going through the tube (PEG). About a month ago, I had another oesephacal dilation. I'm not taking food through the tube any more, and can manage weetabix for breakfast, soup for lunch, and something like chili con carne for dinner ( although it does have to be liquidised a bit.) I still take my meds through the tube as I am a bit lazy - I'm hoping for the PEG to be removed soon but the dietitian is a bit reluctant to do it just yet. I'm sure eating has been made more difficult due to my lack of teeth! I keep reminding my nurse to follow up on getting me some new gnashers, but it's all gone quiet. Hopefully something might happen by the end of the year.
I'm not sure if my second dilation did any good - time will tell.
So - 9 months on, - I still feel very fatigued most days and have some sort of brain fog. I feel my cognitive skills have depleted somewhat, and I find it difficult to concentrate . I can't feel the right hand side of my face due to nerve damage caused by my neck dissection, and I have no teeth. But I'm a lot better off than some people. I think the psychological effects are the thing that bothers me the most. I keep thinking that I should be further on (in recovery) than I am - and it does get me down sometimes. I'm fortunate to be working full time but it is an effort to stay alert all day due to the fatigue.
The radiotherapy affected my taste - so most things taste bad (or tasteless) but I think some of my taste buds are returning, as I like Baileys (hate beer although i liked it before!) and I like sorbet and beef soups and mild currys. Milk tastes sour as well - I hope over time, things will improve, but have to try to accept that they mght not.
I realise that life is not the same as it was before cancer - and maybe never will be the same as it was, but I try to concentrate on the positives (Having a supportive lovely wife and colleagues who are understanding) and my counsellor keeps telling me to be kind to myself and accept that there will be bad days and just accept the fact.
One bit of advice though - Take time to think how your partner or family are feeling, and appreciate all that they are doing for you - and let them know how thankful you are for their support and help. It's really easy to feel sorry for yourself and forget how your loved ones are feeling. Also I think "Acceptance" is a key word. Try to learn to accept the changes that have happened and are happening. It's very difficult but its got to be done in order to move on
Sorry for the long post! It helped me get my feelings off my chest (even though I'm supposed to be working).
Thanks - Steve
I also told my sister who dismissed it saying "I know everything there is to know about cancer" She didn't give me a chance to say how I felt, and was more interested in telling me what was going on in her life. and to this day, I still feel quite upset about that.
She is scared it might be her. It’s the standard attitude if somebody who doesn’t know how to talk about it or help you. Give her this to read
Sorry you’ve had such a rough ride to get through this.
I always counsel that we are a self selecting sample of head and neck cancer patients and most of us are here because we are in trouble.
The vast majority of patients make a good recovery which is something for newbies to remember.
You’re right about being able to accept things as they are and over which we have no control. I hesitate to say best foot forward but perhaps there does come a time when all we can do is put our heads down and get on with it.
There’s no point in worrying about dying when the chances are we will probably die of something else and we would have spent years worrying about the wrong thing. That realisation doesn’t come immediately though and we have to grieve for who we were
Best wishes.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
not sure whether to go ahead as I'm not sure I'll be eating. It's very difficult and a very long journey. Your message makes me realise though, that I'm not alone and my expeirienes past and presenare the same as many others. I actually had cancer in my throat, near to the speech box, still got the husky voice, nasty mucky throat and swallow issues. I just want to be able to taste somethinganything will do! A sandwich in the garden, seems kike heaven!!!!! So that's my target! Thank you. 
