Hi

Hi Stuart - welcome to the forum.  You've had some pretty big surgery quite recently.  I know that it feels like an age ago, but in recovery terms it is not.  Whilst the scars may have healed your body has not yet.  A doctor friend advised me that for each hour you are under to expect a month of recovery before you are back to normal.  So you have a way to go yet.  You sound like me - impatient to be healed!

It is good news that you've not got to go onto radiotherapy.  That is the same as me; although your surgery was more radical than mine.  However as you are finding out the after effects of surgery can be just as debilitating as those from radiotherapy - just different.

I too had accessory nerve problems post surgery.  Physio really did help and after around 18 months I realised that I was able to do most that I wanted to having been quite restricted in some movement previously.  It was a gradual return.  I would imagine the physical trauma of the surgery as well as the movement limitations of the accessory nerve are not helping you current situation.  If there is also some surface nerve damage to the chest that may make things feel uncomfortable - probably not painful, but just strange sensation when touched.

All of the above are probably not helping.  We all take a big hit mentally with cancer and unfortunately most care is directed towards physical issues in recovery.  I am in no way suggesting a solution, just some reasons why you may be having difficulty and the fact that time is a great healer and you are but a short way into that timeframe.

I would suggest taking to your GP who could offer advice or maybe an onwards referral.  There is also some Macmillan information that may signpost you.

Best wishes.

Hi Stuart. Welcome to our forum sorry you’ve found yourself here. As Pater has said you may not think it but you are  in the early stages of recovery. I didn’t have surgery I had 35 radiotherapy and 2 chemo.Pior to treatment I moved into spare room and was there for over 5 months.To be honest my hubby had I had the sex talk prior to me starting and like your partner he was fine to go with the flow so to speak. There is an excellent arti written by a cancer consultant at my hospital Leeds tube it a read it may help you.

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Yes normal relations did eventually happen but time was what I needed  athe first time I went back into our bedroom I felt like I was back in the m r i I felt trapped so slipped back into the spare bedroom. I am niwm3.5 years post treatment and happily living our life’s.Now yiuve found us rant away in here we never judge as we’ve all been in the cancer scenario  

Hazel

Hi Stuart. Welcome from me too. 

The surgery that you endured is pretty major and has a massive impact on you psychologically so I'm not surprised you are struggling. You have PTSD and it needs to be addressed. We all suffer to some extent and it really can't be simply shrugged off. It won't go away on it's own, it won't fade away. Please get some help. I know GPs are stressed with other stuff at present and quite frankly are not trained in addressing our woes, short of prescribing antidepressants. These can help, don't get me wrong, they have their place but they need back up with some sort of counselling. 

To make a start Macmillan offer specialist  counselling through BUPA. Six sessions are free. Have look at THIS LINK

You could also give the Support line a ring to see if anything else is on offer. The number is under my signature at the bottom of my post.

The Swallows Head and Neck Cancer charity also have  a 24 hour manned support line. You talk to somebody who has gone through what you have. It's run by Chris Curtis who is a cancer survivor and his wife Sharon. 24/7 Support Line 07504 725 059

They also have truly excellent carer support so maybe you and your wife might find it helpful to talk to them

The swallows website The Swallows

There is an excellent paper by psychologist Dr Peter Harvey about mental recovery from Cancer Just click on the link that follows After The Treatment Finishes

So there are a few steps you can take. I hope you can start on some of the suggestions I have made. Sadly we are not well supported after treatment if we run into trouble but the help is there.

You are no less of a man, truly.

I hope some of this helps

Thankyou I have just read that article and started crying not of unhappiness. But Because it's just how I am feeling and I thought I was beginning to think I was making it up I just feel so lonely sometimes I have a big loving family and friends but like the article says once the "cancer" has gone they think your OK when really am not.

I printed a few copies and handed them out to my friends. I just couldn't cope with the constant "You DO look well" and the expectations that now the cancer had gone I was back to normal. It's fa rightening thing being faced with your own mortality this way. Most of us were well when diagnosed and it came as a huge shock

Stuart, hi it's Matteo here.  I appreciate your post. I hope this offers a tiny something to you.   I'm only three weeks out of surgery, somewhat similar, similar outcomes, and I guess coming to terms with everything. While obviously I'm not happy to read that you're suffering it's nice to know, in a strange way, that I'm not alone. Like you I wonder about the prospect of physical intimacy again. I also wonder who I am. Actually I feel pretty hopeless but at the same time I feel life is worth living, or will be.  It's just coming to terms with the shock of surgery, post-surgery, trust in surgeons' pronouncements, pain relief, swallowing difficulties, low energy levels and all the rest of it.  At least we can reach out; got to be worth something. 

Hi Stuart. Yes it’s an excellent article. Many if us feel the same emotions, yes the cancers gone and many people seem to think why aren’t they getting in with it. My sister 8n law still stares at me when eating I know she’s waiting for me to fail it just her nature . I was once eating a custard tart with a spoon she said aren’t you  the pastry  because of the calories! I retorted no it’s because I can’t swallow it !!! 
Pleased we’ve been able to help Danis has put some excellent suggestions up. Remember you aren’t alone we are all pleased to try to help. 
Hazel 

People have gone into detail already Stuart, but just to reiterate, it's extremely common to feel like you are currently; went through the same, or very similar, myself. It's the one thing that I wish my team had warned me about that they didn't. It will pass if you take the excellent advice offered above.

Thankyou all for the info and your kind words not in a nasty way but I am glad I am not alone I'm just not coping very well at the minute with it. I am very grateful to the the NHS and my lovely consultant who is very honest with her words for what they have done to remove this horrible disease. But in the back of mind I can't help think it will be back.

Stuart you wouldn’t be normal if you didn’t worry about recurrence. I’m a glass half empty girl and obsessed about it for a year. All I can say is that it does  get better. . My wonderful consultant in his equally wonderful bedside manner told me I’d just have to live with it and you do. You just get on with life. I’m 3 years clear of my cancer and having struggled through that first year I convinced myself that I could easily live another 20 years and what a tragedy it would be if I looked back at 20 years of misery.