Is it just me ?

Burst away if you feel the need to Sam.  We don't mind!

And yes, if you think speaking to your GP might help then do so.

Linda x

https://l.facebook.com/l.php?u=https%3A%2F%2Fcancersupportuk.org%2Fcancercoach%2F&h=AT1hmBDG4D1ZcuA83AVIenPEDIUlAALqkFAsHNbs3Ir_xlUp1Q3acKPohD9i8I2guno-BhlQU6ujN8tP0O-JQqoeOUyfA0pnRp0JrBAsO0B4BcT30QWrJe7MJX3g8Ko&s=1 
This keeps popping up on my Facebook page (which is a bit spooky as I have never posted about my diagnosis or treatment on there. However.....) the comments underneath are very positive and I wonder if it might be useful?

Interesting.

Hi Sanantha 

You have said exactly what I was just about to post. I'm really struggling. 5 weeks post treatment, hospital say I'm making progress but it feels more 1 step forward and 2 back to me!!!

Been able to talk without notes/ whiteboard for 3 days now, which I guess is progress but my mouth and throat haven't stopped hurting today.

I managed to keep eating, albeit it less and softer by the end, all the way through treatment but the very next day that was it - i couldn't anymore without coughing and fear of choking. 

I've started to try eating. Ensure made my mucous worse (seriously I have felt like the woman on Ghostbusters in the library who got slimed and had to resort to nasal douches). The most I've managed is a dozen teaspoons of very sloppy weetabix or thin, clear mushroom stock. I am really struggling for inspiration for what to try. This morning I could only manage 3 spoons of cereal as my soft palate was stinging do much and shooting pains into my ear, just couldn't bear it.

I'm also struggling to gave enough Ensure through PEG to keep my weight up. Husband have damaged his achillies, so I'm taking the pooch for short walks (highlight of my day), but that means I am losing weight as I am more active on less calories. I know I don't need mask to fit, but I think not 'eating enough is compounding my tiredness and mood. I just feel useless!! 

I am living in a morphine haze, sleeping half the day and seeing everyone get back on with their post lockdiwn lives. I do want to see my family and friends, but am scared because I can see how much contact they are having with others and feel so vulnerable.

I am seeing my CNS on Friday so I know I can talk this through with her then, but on the phone appointments they just keep telling me I'm doing well - it bloody doesn't feel like it. I just want to hibernate until I can be me again. 

Sorry to crash your post!!!! 

Any tips most gratefully received!!!

Ronnie 

Hi Ronnie. It really is a case of baby steps some days two forward one back. I’ve been there and the Onky  way to get energy and life back in track is to eat and drink. Your body needs calories and proteins I know it’s hard and ut stings and it hurts ,I was given the target of 1800-2500 calories a day by what ever means and I didn’t have a peg but a n g tube so it was a case if 6 botles  if Ensure  a day. My n g tube was taken out 3   weeks into recovery so it was sink or swim. Have you tried poached eggs ? They slip down really easily. Home made thin soups fortified with double cream ? I have a blog details below you May pick up some tips. Some things you think yiu can't eat might surprise  you ? White bread toasted lashing if lurpack always have a lukewarm drink to help food go down, ice cream with an Ensure mixed into it double calories  

plus are you in top of swallow exercises as hard as it may seem they really do help. .

soda water can help with the mucus or even flat Diet Coke 

Hang In in there it’s really earlybdays for you by 12 weeks you should turn a corner and by 6 months eating much better but use the ensures  

try to eat 20-30 minutes after yoube  taken pain killers  

Weve all had the morphine haze but it does  get better 

Hazel

Hi Hazel,

Thank you. Trying to get to 6 ensure a day. Was managing it, but last 2 weeks been coughing and sick afterwards, so not quite managing it at moment as can't have as much at a time. 

Was religiously doing exercises, again couldn't manage for a bit, but getting back on them as I know how much they help. 

The mucous situation is improving, so once it gets a bit better will try dairy again, had to stop for a bit as it was making it (and breathing) worse. That will open the options up a lot!! 

I think I need to kick myself up the bum a bit. Was so on it during treatment. Odd, but I think the lack of structure isn't helping. I'm so used to very structured days. The only structure I have is my medicine alarms!! 

Thanks again!!!

Ronnie 

Hi Ronnie we all got that feeling you gi from seeing medical staff daily o nothjng i likened it to bring sent round the dark side of the moon and crawling back through to the light at the end of the tunnel. I need structure so made lists for tablets medicines. To do lists for when I was ready films, box sets, books. anything and everything had a list. The mucus is horrendous it goes as quickly as it came although often replaced by the dreaded dry mouth. When I look back I sometimes long  for mucus  to replace dry mouth. Never satisfied are we. lol. 
you will get there just takes time. I think treatment is easier than recovery sometimes xx

Hazel x 

Hi Ronnie

im glad to hear I’m not the only one! I’ve never had a feeding tube and I’m not on any painkillers now. I’m eating bits but not enough. It’s so frustrating not being able to see people or have them visit for support. It sounds like I should be grateful for where I am in recovery. I’ve remained positive & upbeat for everyone around me and I think I just crashed mentally. Think it finally hit me what’s happening to me etc. I’ve been to docs and they have prescribed antidepressants to help with my mood. Fingers crossed it works. 
My H&N nurses are great and keep saying I’m doing amazing etc same as you but I feel they really don’t understand how it feels. Not that they’re not experienced but we are all different and they can’t go off “standard” recovery for everyone. 

take care of yourself and listen to advice on here. I’ve found it most helpful of all !

cheers

sam 

Morning Sam,

Thanks. After reading your message yesterday and the replies, and Hazel's support I had a word with myself last night whilst walking the pooch.

I think it is the loneliness of it and as you say keeping chipper for everyone around you that just breaks you every now and then. Everyone keeps saying how brave you are, but to me brave suggests a choice, let's face it non of us would have chosen this! You're right - at least here you know everyone gets it. And there's great advice along with seeing how everyone's experience is different. 

Woke up today in a much better frame of mind. Pooch and I had a longer walk and I have just managed a whole weetabix!!!! Ready for a nap though now!!! 

Thank you all for making the journey less lonely!!!

Ronnie 

Hi  everyone 

Just joining into this thread. I know after my treatment for cancer and all that I went through I had the same emotions that are being written here.  I just think it is natural because of what we go through. In the early days after treatments we start to live with the after effects both physically and mentally.  We start to adapt. We need to give our bodies and minds time to get through this.  The psychological aspect of this took me time to work through just like the healing took time after my surgery and radiotherapy.  The depression and anxiety I did not want - but it was there. I understood why I had it because of the enormity of what I had been through. I had to get use to a new me. Every milestone back to "normality " can take a mammoth effort, but when we get there it is so worth it.  It is no wonder we can feel exhausted, all that nervous energy we go through  with  cancer treatments.  This takes time to work itself out. The isolation we can feel as we journey into surgery then come out the other side with the sigh of relief. The breath exhaled after we finish treatments like radiation or chemo.  Some of us have been on this journey a very long time or newer to this but we all know exactly how you feel. Lucky the forum is here and the people will want to know you are not alone and it is not just you. It is a very important to keep talking and get help if necessary.  Take joy in the simple things you can do and love and keep going. 

best wishes

Nicky