Base of Tongue with spread to Lymph Nodes in Neck

Thank you I totally agree. I just hope hubby sees sense. I see it as this is what you have to do to feel better. By next week hopefully as soon as he's seen the Oncologist they will tell him it's what he needs to do.

Thank you. I am really worried that if hubby doesn't have it he's not doing himself any favours and could rapidly go downhill. He is my full time carer so he needs to stay out of hospital as much as he can not just for himself but for me.. The PEG allows people to remain at home. Social services are planning to put a limited amount of care in so if he has a hospital admission it won't be easy to support me with 24 hour care. I know that I would have no choice but to go into a care home and don't relish the thought of this possibility, at 47.

My hospital trust insist on a PEG in order for treatment to go ahead. It is a lifesaver. The night pump is very useful in that you are relieved of the pressure of eating until you feel able to tackle it again. Hope hubbie reads all the experiences here & takes on the advice

Hi Bron maybe you should show him our replies we are  real people in my case been   helping people for over 4 years on here. . There’s nothing to fear from having the peg . It’s part of the treatment and recovery . Sone do manage but as you say he’s thin already. Have you expressed your fears to him with regard to your personal circumstances? 
maybe get him to look at our blogs they are there to help people. 
Best wishes Hazel 

Hi thank you for your reply. It makes perfect sense to me and yes it's not forever. Just hoping my hubby understands it is for his own good.

Bron said:

Thank you for your helpful input. My husband has convinced himself that he won't need the PEG when I think it's the sensible option in having a good recovery. It's quite frustrating at the mo as he is being quite stubborn about it and thinks the Oncologist, well is hoping that she agrees with him when I know she will tell him he needs it. 

The trouble with the treatment of this cancer is that it has such a huge impact on us. It has a huge success rate of over 85% particularly if it's driven by HPV infection which is a goal itself while we are under the team's care. The big bugbear is the lack of control and the urge to fight that is huge. I couldn't physically fight it so I wrote my blog which I could control. Others choose to fight the effects. It's a way of getting mentally through it. Don't worry too much if he bluntly refuses to have it. Two things may happen. He will have a rougher ride through it all and maybe he will have to be given a nasogastric tube in the end or maybe not and I have heard of oncologists insisting on the PEG. Either way he WILL get through. 

I think it's tougher in some ways on the carer particularly if that carer is the female side of the partnership. We do have a caring nurturing and protecting nature and it's so hard to avoid overwhelming our partners with it all. I know I felt like that when my husband had a coronary. My husband propped me up brilliantly even though I times I was horrid to him but he never suffocated me and I am truly grateful

Bron said:

Social services are planning to put a limited amount of care in so if he has a hospital admission it won't be easy to support me with 24 hour care. I know that I would have no choice but to go into a care home and don't relish the thought of this possibility, at 47.

Bron...can you enquire about getting some support for you both even if your husband remains at home. He is going to need quite a bit of care himself, particularly in the last two weeks of treatment and two or three weeks after

Hi Bron, just to offer what has happened thus far in our situation.

Husband had session 31 of 35 this morning, so almost there regarding RT. He was offered the PEG at our first meeting with the Macmillan cancer nurses.  They said it was optional, but strongly recommended that he took it, so he said if it was recommended, he would have it.  They explained that this treatment is different for everyone and there are no guarantees about how he would do or how he would be affected and that the PEG would be there if or until he needed it. 

He has managed to continue to eat, if painfully and slowly over the last couple of weeks and has needed some Fortisip supplements in the last week or so.  The psychological effect of having the tube seems to be a reminder that he doesn’t want to use it, almost as if it’s a threat. Food….. or tube.  But he knows it is there, just in case.  At this time of year, the PEG is easily hidden by wearing a vest under loose fitting, slightly thicker shirts. His weight at the start was 106kg (used to play rugby) and I reckon he’s lost10kg+.  He looks okay at the moment.

The other option could be the NG tube (see other replies!), one of our friends had this but it was quite a number of years ago.  Your husband could ask about that.

But please remember, everybody is different - and so “your mileage may vary” on this journey.

Thank you for your reply it's much appreciated, and Hubby read it too. We have our first appointment with the Oncologist this Wednesday, and he said he will accept her decision to have it if this is the case, which I'm sure it will be. He is slowly coming round to the idea that it is for helping him to heal.

Social services are calling for an update on Wednesday so will mention it to them then. Thank you.