Treatment starts on Monday

Hi Mark, I have a nurse visiting this morning so hopeful she’ll be able to resolve the PEG issue. The last thing I want is to be hospitalised!

In regard to pain I’m very fortunate as PEG aside and a sore nose I’m in no pain! I can chew and swallow ok but it’s the experience of eating anything that’s my problem. Like you I have no appetite, which of course doesn’t help the situation. I will persevere but for me this is a real challenge! 
Good luck with the nebuliser.

Barry

Hi Mark777

I had ridges on my tongue which was the cold sore virus and got Aciclovir tablets which worked great.

I also ended up with an issue with the PEG which I wasn't keen on getting initially and had to have it removed in week 5 of 6.  The PEG had moved out of place and was no longer in my stomach.  I was in hospital for a few days as had infection on the back of it.

4 weeks post treatment,  it is getting better but so so slow, meds have been reduced to paracetamol and 10mg of slow release morphine twice a day, neck is still tender and often it feels like something is stuck in there.

Eating is still an issue although I managed half a mince pie which tasted slightly like a mince pie.

I long to feel normal and well, 

Did everyone's lumps (lymph nodes) reduce to there original size, mine was 2.5cm and is 95% gone  I worry about it only because I get twinges of pain 2/10 a few times a day so I'm concerned it's still cancerous.

I hope everyone is fine and well 

Take care Mark 

Hi Mark. That all sounds good to me. Four weeks is still early. I had my NG tube in till six weeks. 
Lymph nodes take quite a while to disappear so don’t worry about that. Best wishes. 

Hi Mark As Dani says  you’re doing well. I had only just got rid of my n g tube at week 3 Hooe you enjoyed mince pie if only half it’s better than j would have done. Lymph nodes don’t go away straight away  stop proding and poking it. The pain will be your bodies reaction to the treatment everythjng heals at different rates my neck used to feel like a poker was in it.  Normal and well will come.  Remember your body’s and mind been  through hell and back.

My oncologist  like Dani’s said  he would cure us he did  he also said he would take a year out if our life’s he did. 
Hugs Hazel x

Hi Mark

Good to hear from you. Good to be able to drop the meds, sign of pain easing and the fog will start lifting. 

I could still feel a lump at the stage you are, so was concerned too until I got my scan results. I think it's pretty normal to worry about any throat / neck twinges with what we've been through. 

Taste will return in dribs and drabs. Mine is more or less normal now 7 months on. 

Take care, Ronnie 

Thanks everyone, I would have loved my oncologist to be so positive with me, unfortunately there was no reassurance at all.

Can it really take a year of your life, I suppose it can when you consider I was diagnosed in May and we are now approaching December. 

I try not to prod and poke, lol, my beard and hair at the back is still gone, and I'm finding it difficult to put back on the 2.5 stone I've lost but as you say it's still early days.

I've read that some were off painkillers at 6 weeks post treatment,  so that's my target, eating still causes pain so I'd love that to stop relatively quickly.

Mark

Hi Mark yes time flies. Don’t make it a race to get off painkillers. If you need them take them I was  3 months post treatment i came  away ti Spain week 8 but was still on oramorph and co codomol. Whatever you do please do a phased withdrawal from them. Yes my oncologist was brilliant I know they are all brilliant some have  more   rapport with patients than others. The weight I lost took 15 months to get back on I was eating 2500 calories a day but my body was using the calories to repair its self. Them all if a sudden the cream cakes had to go as the weight crept up. 
One day at a time and you’ll get there you are doing well for 4 weeks. 
So what Christmas dinner this year maybe disappointing but next years will be better. 
Keep  doing what you’re doing look how far you’ve come. 
Hazel x

Unknown said:

I've read that some were off painkillers at 6 weeks post treatment,  so that's my target, eating still causes pain so I'd love that to stop relatively quickly.

12 weeks for me. I didn’t put any weight on for 18 months. 
it’s not a race. 

While we are talking about oncologists this is a snippet of what some of them are saying to each other 

Oncologists have to be among the most resilient of medical specialties. On a daily basis, we walk into rooms to deliver terrible news to people, often many times a day. We then walk into the next room to visit with a person who may be frustrated with the time they have waited. And then we go home, passing through a world that is completely oblivious to the pain and suffering that we have just witnessed. We walk people to the shore of the river Styx, hand them over to Charon, and go back for the next. We live a professional life that is characterized by loss and pain and grief. And the great majority of oncologists do this with near saintly compassion and grace.

I tend to agree. I don’t know how they remain sane