Team categorically refuse to give my husband a PEG or NG tube during treatment

Oh yes. I've already got a few of those booked in. I've got him some box sets downloaded etc so I can disappear for a while. At Christmas my daughter will be home from uni and my son will be around too so they'll go to my mum's for lunch then they'll swap and spend some time with Dad so I can go and have my lunch with my Mum and have a break And we've already discussed that feeling pretty poorly can make people not very nice at times so we are expecting those moments. A few of his friends will be visiting too so I will have time to myself  

I can’t believe how well prepared and level headed you are. I hope you hang around for a while after treatment. You’ll be a great help to others. 

I would love to ! Thank.you for having me.

That is very true. My husband found that, when he had a lot of negative emotions he didn’t really know how to deal with, it was really helpful to talk to the MacMillan nurse. The first time this happened I felt a bit conflicted and worried I wasn’t being a good enough support and soulmate. Then I realised that it was sometimes just easier to talk to someone with a lot of knowledge and compassion but also a bit of emotional distance from the situation. I became really grateful that he had this other person to give him support and it wasn’t all on me. So having a couple of trusted contacts who you can say anything to is really valuable.

I've also been making an album for Ade because he wanted something to look back on, of pictures with captions describing what is happening day to day/week to week. I don't know if that would be of interest to anyone, if so I could share it ( with Ade's permission obviously). I would be worried about posting it though as I'm really shy about these things so I would want to share it with you first to see if you think it would be what people might be interested in. You might think it's rubbish, I thought I would mention it anyway. It's just a carers perspective really.

Do it. Put it on Wordpress. 

Donna - in response to Dani’s message above, I became that rude, obnoxious and stubborn fool that at one stage resulted in my wife walking out of the room where I was staying in hospital telling my oncology nurse to go speak with me because she couldn’t reason with me. At times I was really poorly and I having been pushed, poked, prodded and poisoned I think I lost touch with reality. I only learnt a number of years later that I’d said some pretty horrid things to my wife when I was at my lowest ebb but have no recollection of any such moments. My excuse was the wonderous concoction of drugs that I was on at the time. I would need three lifetimes to repay her for what she has had to put up with in this one!

Think about you. Your need to research, understand and be there as the robust partner that he needs during this tough time will have an effect on you. I’ve often said that significant others can easily present signs and symptoms of PTSD or other mind-health conditions because going through life-altering and potentially life-threatening illness has to have a direct or indirect affect on those closest to it. As Dani says, take time for yourself, find someone or something to let you decompress - you will need it. It’s not a sprint, it’s definitely a marathon and you might encounter some bumps in the road, everyone does.

Stay safe, stay positive.

Ahh Reevsey I'm sure she's forgiven you and forgotten it ever happened because you are here. Thank you so much for your advice. I've had medical problems myself since I was born so I've had many surgeries and Ade has been my rock. I must l say I've said some unpleasant things to him when I've been rough so it's my turn I suppose ! But I'm finding it much harder being on the other side. I would say I feel in some ways it's worse. I much prefer being the patient. 

Hi Ali 

I think men find it harder to deal and talk about emotions anyway let alone when they are ill. So I can understand. I have my amazing Mum living on the same street so I am so lucky. She is everything to me and so far she's been the best listener. I don't know how I would have dealt with this without her. So I agree you have to have someone outside of the home/situation who you can trust to be able to see you and understand when you yourself are most vulnerable.

I don’t know if it helps but I didn’t have a peg. I had the NG tube for the first few days in hospital, and then an accident with the mouth swab ( think I was too enthusiastically wetting my mouth with water and triggered my gag reflex) result in me throwing it up in the middle of the night !!!! It was quite spectacular really it was going in my nose and then came out of my mouth!!!

I was on fork Mashable meals, which I purchased Wiltshire farm foods once I was home. When I had radio therapy I was on ensure meals. At the peak of the RT I was just managing them- watered down with milk, but they just kept saying - food is medicine which helped drive me to Keep taking them.