Waiting for treatment.

I slept for two weeks when I finished. But I did drink and eat via the NG tube.....You must.

You can't sleep through the next two weeks. Try.......It's worth it

Sleep is good but you need to eat and drink. At the very least keep sipping some water, it helps maintain swallow and everything else can ho through peg if it makes you I'll. You need 6 ensure a day if not eating (at least that's what I was told).

The mucous is awful. Afraid I still get it, but not that bad. Just have tissues to hand to spit it out.

It will get better. You are in the bit I found toughest just now. Set alarm on phone for meds if needed to keep on top of them if you are sleeping lots and out of it. I was well away with the fairies on fentanyl and oramorph!! 

Let nurse know about the mucous when they phone this week. I used a nasal douche on their recommendation.

The plus side is that the battering my sinuses took seems to have solved a blockage I'd had since my teens and I don't struggle at all with it now. 

Hang in there, it will be getting better in a few weeks. 

Like everyone else, I promise it will get better but I can't tell you when I'm afraid. When the medics say that it will get worse before it gets better after radiotherapy I don't think they realise just how awful it is to simple try and get through every day. I finished my treatment in mid May and wasn't able to even try and start eating again until the beginning of July but here I am now eating and drinking (even red wine with water) having had my feeding tube removed last week. The saliva is horrendous, it's revolting but you will find that it starts to improve without you really realising. Hang in there, as you are doing so, so well,  writing on this forum is testament to your resilience when you feel so awful. Drink what you can but I know how hard it is, I would stare at a glass of water for hours because I couldn't face it but I knew I had to. Radiotherapy takes an enormous toll on the body and it will be desperately trying to heal itself which uses a lot of energy so calories are vital, both now and in future months as you're hypermetabolic. Take full advantage of your feeding tube, it's there for a reason and a real lifeline. I honestly didn't think a human body and mind could endure what I want through, what the others have been through and what you're now having to face but we are all here to support you, take one day at a time but hold the thought that it will get better.

Everything is going right Richy, it's just extremely unpleasant to put it mildly.

Please make use of your PEG which has been placed to help you through this phase.

You've been through weeks of treatment, not to mention the anxiety leading up to it.  In order for your body to recover it needs sustenance and that is down to you.

Please take on board the suggestions that have been posted by people who have been through exactly the same and come out the other side.

Yes it will get better but you will need to help the process.

Please take care.

Linda x

It’s been a while. I have had a pretty rough few weeks and now my anxiety is kicking in quite badly. I became reliant on morphine which helped me relax but I stared taking too much and suddenly came to the conclusion I was becoming dependent so I poured what remained down the sink. Now though I have no crutch and am feeling so low. My wife is away this weekend and won’t be back until tomorrow. She said she didn’t have to go and asks if she wants me to come back but she has had it tough too and I wanted her to have a break. It’s just a weekend away in Manchester with her sister celebrating her sister’s birthday which has been postponed already because of me. I’m back to the conclusion that it’s all going to fail and I’ll be back to square one. I can’t sleep at all and the mucous or something in my throat is making it hard to breathe or swallow I panic if I can’t get my breath. This gets me down and upsets me. I can drink small glasses of water and now take some of my meds the old fashioned way. I still struggle to have the fortisips and only had one yesterday although I would bring stuff up after I had one so stopped bothering. Today is a bit better and I’ve had three so far so hopefully will have more later. My nurses are pleased with my progress particularly my neck which looked real rough but now looks almost normal. But psychologically I am findind it all too much. Any words of wisdom would be welcome. I only finished my treatment on 14th January but feel I should be better than I am. Thanks. Rich.

Hi Richy. At 4 weeks post RT you will still feel rubbish. 
General consensus is bearable at 6 weeks turning a real corner at 12 

Why oh why did you not phase your morphine withdrawal.?  No wonder you’re feeling crap! You’ve got four or five days of cold turkey now. 
Really  your body has taken a huge battering and it does take time to recover. In six months time you’ll be a new man. It’s still just a day at a time just now. 
You need a little patience and some faith in a team that hasn’t wasted time and effort in saving your life. 
Sorry if this sounds a little harsh. Just take it easy 

Dear Rich,

It's hard to hear your despair but I promise it will start to improve but nobody will be able to tell you when.  They say that the radiotherapy typically peaks at two weeks after the end of treatment but I was in the same boat as you four weeks on.  It is absolutely horrible what you're going through, that feeling of choking due to the muccous and the forcing down of Fortisip only for it to reappear. But, and it's a big but, today is a better day than yesterday and you are doing so well in the face of hell. And hell it is,  I actually think I looked properly into hell and I'm sure you do too but bit by bit you start to pull away.  Your determination to keep plugging on with the Fortisips today shows just how strong and resilient you are because they're a revolting but necessary evil. Take heart from this group, we all got through somehow and at points along the way never thought we would, it's just one day at a time. Take good care and be kind to yourself, your fortitude is inspiring. 

Hi Richy it’s only been  4 weeks so no you are  on track it’s a marathon not a sprint. Did you go cold Turkey with the oramorph? If you did that won’t help your moods you really should have done a phased withdrawal. 
As for treatment failing have we let you down at any point in this treatment nope  we’ve all told you it  works and it does work. 
You need your strength or you will fall into the vicious circle of feeling like crap so aim for 6 ensures or fortispis spread through the day. Trust your  team and the nhs they wouldn’t waste their money. As DanI says  by 12 weeks you’ll have turned a fairly big corner. This time next year you’ll be almost your old self , won’t say the same as I now I am a better person now than before treatment it’s brought out a kinder me. 
Now I hope you’re getting ready to get your cds ordered. 
Hazel x

And have a look at this bit of advice I gave earlier to somebody else 

community.macmillan.org.uk/.../lack-of-sleep-due-to-excessive-phlegm-production

Hi Rich

I was literally just wondering how you're doing and a post from you appeared!

I'm afraid it wasn't a good idea to dispose of your morphine - it is something your team would guide you off gently.  I'm sure a lot of your feeling truly awful is as a result of this unfortunately.

It is still incredibly early days from the end of your treatment.  As others have said, it will probably be around 12 weeks before you start to see some real improvement although we're all different so don't take that as gospel.

Please take heart that your nurses are pleased with your progress.  If they thought there was anything wrong you would be straight back in.

Just take each day as it comes.  Some days will be better than others.  We've all done it, been there and know how rubbish it can be but look where we are now.  You will get there too.

Have a word with your Clinical Nurse on Monday.

Take it easy Rich.

Linda x