Overwhelmed when given the list of appointments for husband's CRT - Tonsil Cancer HPV +

Every single one of us found it/or is still finding it hard, the treatment is mentally and physically harsh on patients, family and carers, it wont get any easier for a few months but you do develop a routine, keep posting on this forum, plenty of support and advice...your GP can help with meds for low mood and counselling

Hi all 

I'm still worried that his team will not allow him to have a PEG when he's requested one. We had conversations with 3 different members of the team regarding this and they all say the same thing. Not everyone loses weight, some people don't have many side effects and sail through it and as you are having unilateral radiotherapy you aren't likely to need one. A couple of them have said you are only hearing the people who are stating the negatives. People don't write about the good experiences. I worry that this will be management by crisis at my husband's expense! I Also I've yet to hear from people who haven't needed one, or if they haven't have wished that they did have one. The team are adamant it will be last resort because of his therapy being unilateral. Also I'm sorry I'll bet you are all fed up of me banging on my now, but it's all I think about 

So sorry you have this level of anxiety going into what is already a very very challenging period.

For what it is worth we are all very very different. Prior to my radiotherapy I wanted to find out peoples experiences to see what I might face, the responses here on the forum were incredibly helpful and set me up knowing what I was going into but still having no idea what my actual experience would be.

My team (oncologists, dietician and speech and language therapist) were all sure I would NOT need a feeding tube. They were 100% correct.

I finished my final session on Friday - 30 sessions total and have managed to eat completely normally (despite no sense of taste from the end of week 2 - but food is fuel) all the way through. Last night, I had chicken Kiev, chips and peas and corn and then a chocolate eclair for dessert that I am sure tasted lovely.

We really are all different and your experience maybe very different to mine but I wanted to encourage you that it is possible and that if your team is telling you that it’s highly likely they are right but if not, they will react and respond as needed - they WILL LOOK AFTER YOUR HUSBAND - be honest with them every step of the way.

Thank you. I'm also so worried that I'm gonna mess everything up, like his meds, what he needs when, and if I don't sort things quick enough will I be the one to impact his late side effects! I want him to have the best possible outcomes and I don't want to think it's my fault,, I should have told the team that or asked for that sooner or whatever. 

Fry7b5361 said:

Also I've yet to hear from people who haven't needed one,

There are plenty of people who have come and gone here who have. Gsterc above had RT to the jaw rather than the throat which can make a big difference. 
BUT don’t worry about not being offered a PEG. If your husband can’t swallow enough food and can’t get his painkillers down they will give him an NG. This does the same job as a PEG. 

Fry7b5361 said:

if I don't sort things quick enough

My swallowing came crashing down Friday night ( always happens over a weekend) Monday I presented to RT and was admitted for an NG. Made a huge difference and the rest of the treatment was a breeze. 
You do t need to sort anything out. All your husband has to do is be honest about how he feels and how he is coping. The RT guys will sort it fir him. 

Your anxiety is completely understandable and normal.

I’m sure every hospital is different but the team administering my ZAPS each day were always checking in on how I was doing plus every week I saw the nurse and the dietician to do a proper review. I had plenty of care and attention when I was able to raise any issues and concerns. 

If it helps you, maybe plan a list of questions to go through each week with the care team and perhaps a check list of what meds when etc might help.

Know this though, the team looking after your husband want him to do well and come through this in the best way possible - they are 100% on your side.

I feel like I'm spiralling with all the talk of humidifiers, nebulisers, toothpaste, meds, gels, sprays and things we are going to need, along with foods etc I'm going to need to get in. I have got myself into a huge panic. 

Just try to take things one day ay a time.  Not easy I know.  xx

My Peg was fitted at the behest of the oncology team dealing with my treatment, I had no choice in the matter, I did require it for a good few months, a life saver for me, certainly not a negative, some patients do not require tube feeding, the side effects vary from patient to patient.