Rig help

Hi Sue , just seen this and my hubby had a peg and was uncomfy for about a week. He also had hes surgery just over a year ago at Chelmsford and hes RT at Southend. There a really good team at Southend at RT and please be honest with your team if your struggling with anything as so helpful. Unfortunatly hes CNS is Basildon but the Southend team are much more helpful. Wishing you all the best xxx

no iam under st barts in london as iam in epping i been under the royal london the last 5 yrs as each time ive had the cancer its been dealt with under the surgical team at the royal london but as this time its more serious the royal london is part of st barts and the chemo unit and radiology is all at st barts iam having the rig and all my treatment at st barts in london how is your pain now? x 

Thanks for your comments and I hope your husband is doing well now. Yes chelmsford and Southend staff are all lovely although I don’t think Basildon has the same good reviews. Did your husband suffer very much with radiotherapy? I’m starting on 8th August for 6 weeks and hoping I can still eat ok although it’s good to have a rig as back up. My treatment will be on my tongue and neck x

So sorry to hear that you e been suffering for 5 years. Hopefully this treatment will zap it for good this time. My pain is sort of bearable although still painful when I move. Luckily I’ve retired and happy to sit in the garden with the nice weather! Good luck x

Hi Sue , hes doing well thanks. He done well with hes radio therapy just had a few issues after as was on soft diet for months after. He was very lucky and didnt have to use hes peg which pleased him as he didnt want it but knew he had no choice. Please just be honest with the rt team as they are there to help and like i said there a good team. Wishing you all the best Sue xx

how do u use a seatbelt in a car with this rig is it ok? iam glad your pain is bearable now x

Wow I’m so impressed to hear that he managed without his peg, I really hope I am as lucky. Thanks for your good wishes xx

I haven’t driven as I recently had a neck dissection and the seat beat is uncomfortable. As a passenger I just hold the seat belt away from my body. I was surprised how high up the stomach is and I find that my bra rubs the site when I sit down which is annoying so I’m going braless until it’s a bit easier! X

Yep x I was surprised by how high up the tube was. I ditched bras. Just wore support or quite tight fitting vests which also kept feeding tube from dangling. My skin doesn’t like some surgical tapes so vest was a good solution. Keep practicing the exercises which will help you maintain your swallow. I was lucky that it worked for me so I didn’t have to feed via the tube. Plus doing the exercises helped with occupying / distracting my brain x 

Good advice thanks Lisa, I’m using tape at the moment which is ok and I’ll buy some vests to keep the tube anchored better. Great news that you coped without the tube, I will keep exercises up and hopefully will be as lucky! X