Oesophageal stent advice

Thank you Glebe, I appreciate your kind words. Radiotherapy isn't an option I have learnt, but at least I now know the future I have and can now make plans. Good fortune in your journey though, I hope you do well, I truly do 

Adrian

Adrian, what an honest and heartfelt post, have a friend, who finally, got her husband to do something about a lump on his neck, finished his treatment for tongue cancer december just gone, and like you said ignorance isnt bliss, they wouldnt go onto the forum specifically for their type, with such amazing people that could have helped, advised, just supported, and they have been hit again and again when he is pain, cant swallow, skin peels away, they have now reached out more and its been such a help.

just recovering from my reconstruction op on jan 8th, and christ feeling it, but reading posts like yours and other forum family members, which husband was reluctant to read, has made him realise, you need to push, question, and sometime push them again. and know what is coming however hard it is.  there is no handbook for this!

Your positive attitude has humbled me, and inspired us, also made us realise, as we have no kids, our will needs changing to give back to those especially recently and previously who were there for us genuinely and honestly.  Donations were it counts and is meaningful

You take care, and keep us updated if you want to.

jules x

Adrian, your attitude is amazing.

We were kind of like that when we found out what Rod's prognosis was. Of course we were hopeful that he'd be one of the lucky ones for whom treatment buys a few more years. Sadly, that's not to be. He's not having the best experience in the oncology ward. This morning when we spoke his empty iv bag hadn't been replaced for over 2 hours. He hoes for periods without pain relief. He was told that his oncologist would see him yesterday but she didn't. Another of her patients said he's been told she's not at work. He's finding it difficult not to get despondent and just give up.

It's such a contrast in treatment from when he was in the trial, up to just over a fortnight ago. He received 'Rolls Royce' treatment and care then. It was great while it lasted!

Let us know how your treatment goes. Rod got some great gloves from Sports Direct to help deal with the neuropathy from the oxaliplatin. They're almost like neoprene and you can still use your phone with them on. He kept some next to the fridge as well as a pair for our dog walks.

Take care,

Lorraine

I’m so sorry to hear this Lorraine.
Chris’s experience with the oncology unit has been ok so far …..AMU when he was admitted with neutropenic sepsis .. not so much. I had to kick up a fuss with the ward manager which did get some results …. I’m sure you have done the same. Sending love for some improvement in how your husband is feeling

Geraldine xx

Thank you, Geraldine xxx

I will keep you updated Lorraine, it's good to share the journey, makes it less lonely. I will keep the faith for you and your husband, I wish you both all the best.

Adrian

So right Adrian …. the support and understanding here makes a huge difference. Just being able to communicate with others who really understand is cathartic.

sending you every good wish

Geraldine 

I have now had 2 stents inserted. It's not a pleasant procedure but I can eat and drink well now. I hated having a nasal feeding tube following my chemo.  Only drawback is managing the pain from the stents.  The palliative nurses have been brilliant in supporting me with this.  I've had morphine patches but now have fentanyl patches which have been more effective. I've even started putting on some weight!!

There are some drawbacks but overall my quality of life is vastly better with the stents

I know this post is from a month or so ago but thought I would add my experience.

i have an advance tumour 14cm long with warthog the tumour which grew such that I lost my swallow and had to be admitted to A&E. I had a double stent fitted and had very little pain and discomfort after 24 hours, within 48 hours I was eating shepherds pie and went on to a fairly normal diet - you just have to be conscious that the tube is only 2cm or so in diameter so things need to be non fibrous and wet with sauce etc.

The stents were installed early December 24 just before my chemo started. In March the stents had slipped into my stomach as the tumour has shrunk and the stent didn’t have anything to grip it.

i am still eating normally as the chemo has for now shrunk the obstruction.

hopefully this experience balances out some of the more negative experiences - I count my blessings that I was one of the lucky ones.

Thank you for taking the time to share your experience. I hope things continue to go well for you.