Tonsil cancer t3n2m0

Hi Shell

Unfortunately our nearest and dearest are the first in line when we're suffering.  I'm sure Wayne doesn't mean to get angry at you.  It's more likely that he's frustrated and in pain and just lashing out.   All you can do is continue to try and.help him as best you can.   

What pain  killers is he taking now?  

Linda x

Hi sorry to hear this... your in good company on here as we have all been through this...for me when the oral blisters started I became heavily dependent on the pain relief...cocodemol made me I'll so I ended up on morphine...not ideal but anything to ease the pain...I used the peg tube for 5 months and it was a life saver...it's a tough treatment but well worth it...I got back to work full time before retiring... hope it works out... stay safe

Chas

I reflected on what I had said last night. By stepping back I meant that sometimes my husband being at my elbow reminding me it was time for this and that did get annoying. We had made a list which I kept in the kitchen alongside all the food and meds and everything was ticked off. It's easy to forget things or get your meds out of sync and wonder why you are suddenly in pain.....and as for the mouthwashes it really is soul destroying having to be doing something with a painful mouth every two hours. If I lashed lout, usually to say leave me alone I've had enough, he simply appeared silently with whatever was due and stepped away. Letting me abandon mouthwashes for a few hours was the most helpful.

I have looked after a really sick person I loved and one of the things it's difficult to cope with is the anguish you feel for them and seeing them improve or respond or have their pain taken away makes you feel better and that's part of the caring. It's the part that can appear to the patient to be the overbearing part....the nagging part. I'm not saying for a minute that is what's happening but I think it"s a normal part of a carers psyche.

Be there for him but make some time for yourself and look after yourself. This awful lockdown is so demoralising anyway but can you take yourself off for a decent walk on your own, clear the cobwebs and give both of you a break.

I know there were times in the middle of the night when I would have meltdown on the bathroom floor and wail about my predicament. Men can't seem to be able to do that until they are much further down the route of despair, perhaps if they could but it is what it is.

Things will get better, I promise

Hi Shell

its not easy for anyone my hubby bless him tryed my patience. It was half way through treatment we had words we don’t have words. I was treating him apparently like a dog. Did I know no I didn’t did I do it on purpose no I didn’t. The old saying springs. To mind you always hurt the one you love. John was trying his best in an impossible situation. Like he said he thought he was going to loose me so was trying to do his best making sure I was taking meds and hydrated when at times I wanted or needed sleep but he wanted me to eat hydrate etc. It does get better. Try stepping aside slightly. Doesn’t matter in scheme if thjngs if he misses the mouthwash on some occasions. He’s going to be hurting scared as well.  I used to get up we had separate bedrooms I couldn’t cope with him breathing never mind snoring. I would sit on kitchen floor crying men don’t do that so he’s bottling it up. 
it does get better. Being unable to eat drink isn’t good. 
Hazel xx

Hi Shell                                                                                     

It’s hard to watch someone you love when they are in pain and know there is nothing you can do to help other than give your support.

Radiotherapy treatment is difficult and everyone manages in their own way. During my treatment I felt so helpless and out of control as my mouth was so painful that I could hardly eat and the weight was dropping off me. I felt that my body was no longer my own and everyone was telling me what to do.

 I managed my own pain relief as I felt it was the one thing that I could control. My husband knew me well enough to know not to get involved. I felt it was too intrusive and what did he understand about how I was feeling. He knew I would get angry with him. He was very supportive but melted into the background when required.

Everyone feels differently about these things. It may be worth asking your husband if he would like to manage his own pain relief or if he is happy for you to continue. It is a time of turbulent emotions both for you and your husband but the end does come and you can then close off that chapter and move on to happier times.

Best wishes to you both.

Lyn

x

Hi Shell

Sorry you have to find yourselves on here, but the advice is a great support for me.

Currently in week 3 of treatment and my mouth has started to go, so sharing your partner's pain. I have a superbly supportive husband, we never have words. Then again last night I did grumble about him smothering me and telling me what I can and can't do. I've really struggled with my PEG, so he's doing everything round the house. 

I've put together a meds checklist, which I religiously ticked off in week 1. I haven't continued at moment as its in my head, but it is there for him if I need him to support more with it. The constant mouthwashes, etc does get me down, but the relief they bring is a godsend and I have managed to keep weight up so far eating. May need to top up with the drinks by the end of the week. Currently getting by on soluble paracetamol, but have asked for codeine and a prescription for movicol as I know the affect it will have! 

I'm using the difflam wash 15 mibs before meals, flourigard after, caphosol, and salt water across the day. Also a but of crushed ice. Lots of cold water too, swilled and swallowed. Not sure if any of that helps? 

Take care!! 

Hi Ronnie95

Sounds as though you are really on top of things at the moment and have your plans in place.  That’s great. As you know it can become more difficult from week 4 but you sound well prepared.

Hope the rest of your treatment goes well and that the radiotherapy is finished in no time at all.

Best wishes

Lyn

Thanks Lyn

Hang ion in there Ronnie. You seem to be on top of the mechanics of it all. Just dig in and come on here for a rant if you need. We all need one of those now and again

Thanks Dani