Hi - my name is Kate. It is 5am and my husband and I have been awake most of the night. He was diagnosed with Stage 3 Tonsil Cancer in January. Its T3N2C to be precise. He has 2 largish tumours in both lymph nodes and also one at the base of his tongue. His treatment is due to start 9th Feb. His PEG getting fitted on Friday. What I am worried about is he was fit and well in January and the change in him since then is shocking. He must have lost almost 2 stone. I understand a lot of that is due to the tough tonsillectomy he endured 3 weeks ago however I was not prepared for him suffering so much before treatment has even started. He almost cannot breathe with the ridiculous amounts of phlegm and mucus he is producing. I am assuming his body has gone into overdrive fighting these foreign bodies in the lymph nodes. I honestly thought the mucus experience was to come later as a side effect to radiation treatment. Is what he is experiencing normal? He just looks so ill and frail. Bearing in mind he has always been a big robust rugby playing man - I can't get used to such a drastic change in literally just weeks. I am panicking about what will happen when his treatment actually starts.
I actually am still in shock though I guess. He doesn't want anyone to know or fuss so I cannot talk to anyone about it. He won't talk to me either. I have a very busy job as Head of Ops for an Events Company - away a lot sometimes for weeks at a time. How is this going to work? He basically has holed himself up in the living room with sports on 24 hours a day. He hasn't left the house except to go to his appointments. How can I get him out of this funk? The one thing he hates most in life is being nagged. Really cannot start now. But I worry he has given up before we have started.
Is what he is experiencing normal? Should I drag him back to see his cancer nurse?
He used to be larger than life - always pottering in our kitchen, cooking and socialising. He hasn't cooked for a month (I have lost weight too) - he snacks. We don't talk about much now. I dread coming home. Really need some help.
I also told him about 10 years ago when he was smoking and drinking a fair bit that he really needed to stop. The nagging he hated did happen but fell on deaf ears. I tried cajoling, encouraging, threatening and nothing worked. I am that person that finds sick people repellent. I shrink away. Think it was because I spent a week in an African hospital when I was 7 on a drip surrounded by seriously ill children that were dying around me daily. I cannot bear seeing people ill and suffering.
So a few times over the course of about 5 years - when I finally lost patience with everything falling on deaf ears - I told him several times "if you get cancer - I am leaving you". He just shrugged and ignored me. He did eventually switch to a vape thing about 2 years ago but red wine was never denied him. I now feel awful - like my comments were a threat that came true and it is now lurking in the air like a big fat white elephant. Is it my threat years ago that has caused him to shut away? Reading that back I am shouting "yes you silly cow" in my head!
I don't see how this can carry on though! Help please....
Oh Sharpie
what a mess you both find yourself in. I’m so sorry for you both. I have a friend whose strong loudest-voice -in -the-pub husband got a different cancer and did exactly that. He’s still here with us five years later but a recluse so can I urge you to maybe go to your GP and see if you can set up some counselling. Maybe even set the ball rolling by jumping the queue and paying for a private one.
He’s scared and no longer in control so all he can think of doing is hiding.
You can at least tell him that in the experience of many others here having tonsils out was more painful than anything else that was done to them afterwards. Good luck
Im sure lots of other folk will be along shortly to guide you so hang on in there.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
There is also a carers section. You might like to dip into that as well.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thank you so much to everyone that responded. You have all been so very nice and understanding. I always feel better in the light of day. We are seeing his whole team on Friday when his feeding tube gets fitted. I will certainly mention my concerns then. He is facing 6 weeks of radiation and 2 super doses of chemo on day 1 and day 22. I hope that once the daily visits are over and he is just concentrating on recovery that he will let the world in. Our few friends that know have been brilliant in offering any help. Luckily we live in a small village where we know everyone and I know our neighbours will also rally round. My job does not really kick off properly until June. So that gives us all of May and some of June to get him on the recovery road. We actually had booked a lovely villa in the South of France for 2 weeks at the end of June and first week of July. This is before we had any inkling our whole world was about to rock on its axis. I am tempted to leave it be incase he miraculously feels up to recuperating in the french sunshine (or shade as the case may be). Does having an incentive to get better work?
I do feel utterly helpless right now as there is literally nothing I can do to help. As soon as we found out all I wanted to do was learn about everything and talk about everything and he completely did the opposite. He refused to even look it up. So it instantly created a bit of an awkward chasm between us where there was none before. I also think someone in the thread above was right - I do need help to get rid of this anger I am carrying around. Will speak to the Maggie Team at Cheltenham Hospital.
I am upset at potentially losing the life we had planned. I feel robbed. I am terrified about how much it will change "us". I mean it already has.
I need a kick up the backside to help turn into a super nurse. The thing I dread the most. But I will face it!
I used to like me - I'm pretty sure my husband did too but this scared, angry version of me is very disappointing.
Sorry to pour out all this angst....but it's better out on screen than swirling around in my head.
Thank you all for listening. It's good to know I'm not crazy.
I liked what someone else said above - when being tough is the only option - you will surprise yourself. I hope I scare myself shitless in that case! 
Chat soon....Kate (Sharpie)
Thank you so much to everyone that responded. You have all been so very nice and understanding. I always feel better in the light of day. We are seeing his whole team on Friday when his feeding tube gets fitted. I will certainly mention my concerns then. He is facing 6 weeks of radiation and 2 super doses of chemo on day 1 and day 22. I hope that once the daily visits are over and he is just concentrating on recovery that he will let the world in. Our few friends that know have been brilliant in offering any help. Luckily we live in a small village where we know everyone and I know our neighbours will also rally round. My job does not really kick off properly until June. So that gives us all of May and some of June to get him on the recovery road. We actually had booked a lovely villa in the South of France for 2 weeks at the end of June and first week of July. This is before we had any inkling our whole world was about to rock on its axis. I am tempted to leave it be incase he miraculously feels up to recuperating in the french sunshine (or shade as the case may be). Does having an incentive to get better work?
I do feel utterly helpless right now as there is literally nothing I can do to help. As soon as we found out all I wanted to do was learn about everything and talk about everything and he completely did the opposite. He refused to even look it up. So it instantly created a bit of an awkward chasm between us where there was none before. I also think someone in the thread above was right - I do need help to get rid of this anger I am carrying around. Will speak to the Maggie Team at Cheltenham Hospital.
I am upset at potentially losing the life we had planned. I feel robbed. I am terrified about how much it will change "us". I mean it already has.
I need a kick up the backside to help turn into a super nurse. The thing I dread the most. But I will face it!
I used to like me - I'm pretty sure my husband did too but this scared, angry version of me is very disappointing.
Sorry to pour out all this angst....but it's better out on screen than swirling around in my head.
Thank you all for listening. It's good to know I'm not crazy.
I liked what someone else said above - when being tough is the only option - you will surprise yourself. I hope I scare myself shitless in that case!
Chat soon....Kate (Sharpie)
Good evening Sharpie, this sounds so very similar to me and it was mentioned about my smoking and drinking which I ignored as the saying goes "it will not happen to me " plus I was fit and healthy and had never been ill prior to this in 48 years although I had started to lose weight and my appetite. I sort of kept myself to myself as it helped me cope with what lay ahead, this is not necessary him giving up he just wants to deal with things his way until it comes to a time when he will need your or others help. I did not lock myself away but did watch tv or rested in bed. All my family, friends and workmates knew from day one that I had cancer but they as good as gold about it.
I was the same with cooking, socialising etc but lost all interest, mainly because I could not eat solid food for a while or drink very well due to my lack of swallowing. I'm sure your hubby will, like me get through it his way even though it's hurting you which is not intentional it's just the way some people cope.I never wanted to know what lay ahead and found it easier to deal with things on a daily basis. I'm sure once he can see signs of improvement he will slowly become the man you used to know.
I honestly think those comments you made fell on deaf ears and he will not hold it against you, he could even be blaming himself inside making him act a bit anti towards it all.
I would give him as much space as he needs to cope and let him try and deal with it his way unless it starts to get worse then it might be advisable to get help from a councillor as sometimes speaking to a complete stranger does the trick. Please do not blame yourself as in hindsight we should have listened to what people were telling us earlier. Wishing you both all the very best, take care.
Chris x
Its sometimes not easy but its worth it !
