Daughter/Carer of NEW DIAGNOSIS-help

Hi. 
have a look at this thread. It might help you plan 

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/287136/helpful-tips-for-those-about-to-start-treatment

RT is a challenge  There us a real possibility that after four weeks your mum won’t be able to swallow even pain relief  if she is offered a feeding tube she should grab it  I had a nasogastric tube at four weeks and it stayed in once fir many weeks  it saved my life  

I was 68 when I finished treatment so a little younger than your mum  

Stay with us  there’s lots of help here and there are quite a few carers as members  

It is a scary time for patients, family and carers, treatment can be hard on some but not everyone is hit hard with the side effects some do manage to avoid the worst.

I was 67 when I had Chemoradiotherapy for stage 3 tonsil and neck cancer, difficult times, PEG tube fed, hated it but it was a life saver.

Don't suffer in silence , tell your oncology teams about any pain issues your Mum has, make sure you have plenty of pain meds. 

Keep posting on the forum as there will be loads of support and help available 24/7, always someone happy to help or just to chat with.

Thanks Dani. She is a super organised woman and has already started  on the various mouthwashes, moisturiser and the rehab exercises. I know the tube feed really frightens her…we’re as ready as we’re going  tto be…

Katej5833 said:

I know the tube feed really frightens her

Try to reassure her. It’s a darn sight less frightening g than being in pain all the time because you can’t get your meds down. 
Has she got one in place already? 

First couple of weeks are not too bad, try to have Mum eat well for as long as she can, treat your Mum to all the things she likes as taste and appetite can disappear for some time. Weeks 2 to 3 usually sees the side effects of RT coming into force.

No, they discussed it with her on Friday at speech therapy/nutrition and said they will keep an eye on her. They mentioned having to be admitted for a week if you have it ?

Hi sorry your mums joined the club no one wants to join. I was 61 so 20 years  younger than mum. One piece of advise from me is I had the ng feeding tube end if week 3 if was my lifesaver, you can’t imagine waking up one morning and being in a position that swallowing is practically impossible. I had agreed tj ng tube being fitted I was lucky it was fitted  in 5 mins and we were given training same day and off we went. Mum may need you  ti be with her at home as time goes on if maybe you live with her already. It’s not easy but take everything one day at a time. Keep her team in the loop they are her first point of contact. Kero on top of medication once pain starts keep  taking it by rote plus make sure she is given laxido as radiotherapy and opiates can cause constipation   

tell her there’s nothing tj fear from the feeding tube   I treated it as part of the treatment. 

any questions ask us we’re all happy to help 

hugs

Hazel. 

Thank you so much. She has already started on the painkiller and I will maybe speak with one of her team re an earlier look at the tube and advise re bowel help. 
I don’t live with her but I am close by and will move in when she needs me.

it’s so frightening for her all the side effects. We have to keep reminding her that it’s the treatment not the cancer doing this and above all, it is a treatment that will hopefully cure it. X

Katej5833 said:

They mentioned having to be admitted for a week if you have it ?

I was admitted for 4 nights but that was because swallowing became impossible on a Friday and I wasn't seen till Monday and was pretty dehydrated. Add to that it was New Year's day with no dieticians around so it was just bad luck. 

There's no real need for admission. It takes a minute to get the tube in. It's a little unpleasant but doesn't hurt and you don't feel it once it's there. Teaching you how to maintain and use it takes five minutes. You usually get visited at home by the nutrition company who supplies the food and a pump to give it. Take my word for it, it is much easier to feed slowly by pump than by syringe which takes ages and takes more time out of an already busy day looking after yourself.

I fed by night which left the whole day free of food. 

Your mum's radiographers are her point of contact with the rest of the team. They will ask her how she is every day so if she needs anything like better pain relief she should say. 

It's good that you can move in, your mum will need a fair bit of care.

Being in hospital when you're going through this really sucks so if you can go with her to learn about feeding and caring for her NG I'm sure she can avoid it and getting it in before she needs it sounds like a good idea. She will likely have to have it changed once or twice but that's no big deal.

Hugs

hi 

I am sorry your mum is going through this,i too am new to it all im 63 t4 n2 mo and p16 negative lol sounds like im in prison..i start my cancer cure on Monday 4th and get the feeding tube fitted on Friday the 8th just an overnight stay .i pop on this now and then and read and hear from some amazing survivors which i and your mum will be part of too :) i cannot offer much help re my treatment yet as my journey is just starting,lol i have some silly questions like can i wear a bra with metal when im wearing the mask getting radiotherapy lol makes me laugh  but im determined im still going to be around for years to come :) big hugs to you and your mum xx