Hi Matt

I think maybe you're right, it could be a psychological response rather than physical. The only way to know for sure though is to speak to one of your medical team. You've obviously been through a lot recently, as anybody living with cancer does, and so it's bound to take a toll emotionally. 
Talk to your wife if you feel able to, I'd bet that she could reassure you regarding your worry that she may not continue to be understanding. Take care x

Hi again Matt

Just realised that your original post was intended for the nurses, sorry! 
I'm not one of the nurses, just wanted to help. Hope they respond to you soon x

Hello Matt,

                  just noticed one of your replies to another post in which you mention your use of strong opioids like Fentanyl and Morphine.There are studies showing that these can cause erectile problems for users,so it might be an idea for you to ring and talk to one of the nurses on this site, specifically about this likelyhood---0808 800 4040.

Hope this helps,

                               David

Hi David. Thanks for your reply. I did use oromorph and fentynyl patches. The patches lasted 3 weeks. Oromorph maybe a month, but very sparingly. I was worried about becoming over reliant on it so I was careful in that regard. I've not heard about that and definitely wasn't told about it. I'd have been a lot more wary had I been told. As I've mentioned, the wife is brilliant. She's aware of side effects galore (she works for the NHS so is quite clued up) and we can laugh it off. For now.... But I'm sure there'll come a point where patience starts to wear thin. Rather than a number, is there an email address at all? I'd prefer to contact that way. Cheers, Matt. 

Hello Matt,

                   look at the bottom of this page and see NURSES HELPLINE below which see E MAIL US and submit form.

l would not rule out the effects of Radiotherapy either, it played merry hell with me and left its mark,hopefully your issues are transitory and will resolve,

                                                                                              David

As soon as I finished typing I saw the email contact link so I have done. 3 to 5 days to reply isn't the quickest but I appreciate they're busy etc. It is what it is. The radio has hammered me. I used to be a properly good looking fella, now I'm just a shadow of that. I've lost 3 stone so look gaunt. Hair loss on one half of my face, lymphoedema, tresmus. Absolutely hammered. But the wife still loves me so that's that. I don't get any funny looks either which I thought I would.

I'll keep an eye on my emails for any answers. I'd try my GPs but they're not the best, shall we say. 

Hello Matt,

                 good tthat you have found it,.My treatments pounded me hard and l looked like a poor version of the walking dead for a good few years, but here's the thing, l have now shed the years and look better now than before the illness which l regard as payback for those lost years.

Experience has shown me that you can never write yourself off and that recovery always takes far longer than you initially envisaged, you just have to accept where you are, keep the faifh, glory in each and every small step forward, and keep looking forward with an open mind as to where your journey will take you.

 Hope you get to where you wish to be in due course,

                                                                                       David

What a brilliant message that is, thank you. Recovery is indeed taking longer than I'd like. I want to be back at work but fatigue is currently stinging me big time. I sleep a lot between the school runs. I used to be able to get up at 5 and go to bed at 11pm no issues. Now? I'll happily go to bed at 8pm. And that's after sleeping 10am-2pm as well. But we sleep when our bodies are fighting so I take solace from that.

Can I ask what cancer you had? Head and neck isn't common so finding support or comparisons is hard.

Frustration is getting to me now as well. There are things I want to do but can't. Working would help, but fatigue is slowing that. So it's a vicious circle for me in a way.

I am positive, though I have niggling doubt. I've had my head up and chest out since March 4th chemo day. I have 2 beautiful girls and a rock solid beautiful wife to battle for. 

Again, thanks for your message. I shall take the advice of glory in each step forward.

Matt

Hi Debsjay. The post is labelled for nurses but advice from anyone is taken on board. We're all in this together I suppose. 

Hello Matt,

                bowel cancer initially with radio and chemo prior to surgery.Pre sugery scans showed spread to liver, so 60% removed followed by bowel resection and stoma, followed by chemo,followed by Stoma reversal 14 months later.

Radiotherapy was five munutes a day over six weeks,which knocked out my ability to ejaculate,but left me with the ability to erect and have the sensation of ***, like discovering oil but without the gusher.

Chemo left me with permanent neuropathy in the feet, so a few years of tripping over and before the brain got absolutely fed up of reminding me my feet constantly hurt and finally gave up on doing so.Thankfully as a former bike racer l had had some practice of learning how to fall and still be able to get up.

Bowel took five years to rejoin decent society from a longstanding position of continuous multiple  explosive detonations, got round that by having strategically placed portable toilets around the farm buildings, and a motrorhome to allow "have loo can travel"

l hear your comments about exhaustion,l run cattle and sheep on a croft on a west coast Scottish island,and continued to do that throughout alongside building a new retirement home for the wife as l was covering the possibility of not coming out the other side.Back then we operated a guest house/hostel/post office from our large farmhouse. l got up and continued  until l fell down in bed, rested  and got up and repeated over the following years. One advantage are the long summer days with only a few hours of darkness, so my days revolved around the ability to stand upright, not what time of day it was.

Frustration is a killer which leads to self imposed stress, which leads to mental pressures, which lead to inability to allow your body to heal itself and recover, its your best friend and yet its all to easy to abuse. l found that accepting that jobs took longer, revelled infinding new ways of working smarter not harder, its all to easy to stubbornly insist on doing things the way you had before and failing, only gets you angry,miserable and depressed.

l was 61 at diagnosis,and am 10 years down the line and people put me at late fifties/early sixties, built the shell of the house by year three,and finished it and moved in by year five having freed up money by selling our guesthouse.

Pick your battles, ie those you can win, embrace letting some things go, whilst allowing your ambition tp find new challenges to succeed in, couple this to head up chest out and you will find your way will be continuously forward.

Good luck and since the winds have subsided a little, l am off to dig a new gatepost in, we have highwinds from the recent storms which mean putting metal cladding sheets on a barn is a no, picking my wins again,

                                                              Take care, david