Oesophageal stent advice

christ Bikerbabe, you are such an inspiration, so see how this crappy disease can bring on change so quick, is bloody awful, thank you for your updates, especially with others at the same stage you are coping/dealing with.  i know we just get on with it each day, what ever stage we are at, one foot in front of the other, but god this disease can just do one x  hope you get some time to catch up on some rest,

just sending loads of love xx

jules

Hi Angie, 

Sorry I didn't see this yesterday

Dal is currently doing Ok, thanks for asking! There is no treatment at present, we are waiting to see more results and they are happy with what the treatment has done so far, and he is just being monitored. It is very much like a miracle for him. 

I am sorry to read that Tony is finding the Paclitaxel tough, but I hope that this means it is doing what it has to do, to create a similar style miracle. 

How are you coping? 

Lowe'

Hi Lozza. I will tell you how it is but I cannot predict in all certainty how it will be for your husband.

I had a stent placed last Wednesday and I had no idea that the post procedure would be so hard. Having the stent inserted is not as bad nor takes as long as the endoscopy biopsy procedure. The similarities end there though. The team never told me how the past few days would be for me, probably with good reason. The first thing your husband will notice, about half an hour after the procedure is pain from trapped wind; impossible to burp, it's painful and becomes more so over the next 3 days/nights, it is so exhausting. On day 4 , I managed to start burping, a massive relief, but I had by then rang my nurse for meds, gaviscon no use, don't rely on it. I was given oramorph, nasty and way to strong, small teaspoon made me vomit. Co codeine 30/500 on prescription is a god send. Day 4, constant acid reflux, burning chest, very unpleasant and tiring. I hope it goes away eventually. Been given dissoluble meds but when bad I drink cold full fat milk, vanilla ice cream (soothing) and chew 2 or 3 Rennie's for top up relief. It's day 5 today and I have just started eating a bit. Been sipping nutrisips that I got on prescription. Today I boiled some plain dried noodles, up and poured from the bottle lots of teriyaki sauce for moisture, flavour. Chopped it up and first food I have enjoyed since before Xmas! Dank down with slightly warmed milk. Try to stay away from tinned, like heinz spaghetti/ beans, to many chemical and they will make him sickly, fresh veg or dehydrated, noodles, pasta seems best way forward for me, blue dragon teriyaki in a small bottle sauce is very mild and adds taste. It's day 5 , I'm 61, I have inoperable tumour and am reasonably fit and have never drunk alcohol or smoked; for context.

I don't feel well on day 5, I'm not as tired, the pain has eased somewhat and tomorrow I visit the Oncology MDT to see what is in store for me. One thing this has taught me is that ignorance is definitely not bliss. Get the meds ready before the procedure to take home. Stock up on vanilla ice cream, milk, custard. Best thing I bought was an electric blanket, it soothes the whole being when you climb back into bed for the umpteenth time, and have a comfy chair with blanket and warmth elsewhere so he can sleep sat up. He won't want to talk much or explain anything for 3 or 4 days, so give him lots of space and time to deal with how ill he feels, for me it was pretty brutal. Prop up pillows on his bed. Noise cancellation headphones with my music helped me drift in and out of sleep.

This is my experience though and my ways of coping, your husband may be different, I don't know, but it does ease off like I state. I'm hoping to get lots of tips for when I start chemo in the next couple of weeks off anyone on here who has been or is going through it. I'm very nervous, I live on my own and have just gone on sick leave from work 10 days ago; I struggled until I couldn't find the energy. They say you need energy for chemo. Good luck too you both Lozza

Thank you so much for taking the time to give us so much detail. This is all very helpful to know and allows us to be prepared in a way that you, unfortunately, were not.

Rod has been admitted onto the oncology ward tonight so that he can receive fluids, pain relief and nutrients via an iv line. 

He's going to discuss stent vs peg again with his oncologist tomorrow. 

I'm sorry you're having to go through this too. It's awful. And it seems that hardly anyone knows about this cancer until they or a loved one finds out they have it.

I hope you have plenty of support around you.

Keep us updated and we'll do the same.

Buy shares in teriyaki sauce!

Wishing you ongoing improvement and let us know what chemo they have planned for you.

Lorraine

Hi Lowe,

So pleased to hear Dal is still doing so well he is inspiration to us all.

I am ok thanks, just take each day has it comes now, I think that's all you can do.

I hope the paclitaxel is working it's magic too, it's just Tony gets so tired from all the treatment and he gets so fed up of being at home all day whilst I am working.

How do you cope with it all.

Angie x

I will keep you updated Lorraine. I find out this afternoon what's in store for me. It's all new and I'm entering this rabbit hole blind, in a way, but I know there are people, like yourself, supporting me in spirit. Just have to trust in the NHS team as my wellbeing, as is your husband's, is in their capable hands now. 

Thank you for your reply, trust in your husband staying strong and with you by his side, I'm sure he will be all the stronger. 

Who knew, come last Xmas, that we would have to follow the yellow brick road.

Speak soon

Adrian

Hi Adrian,

Good luck this afternoon, I am a little ahead of you on this journey. I started my chemo and Radiotherapy yesterday.

Dont be afraid to ask questions and I will have you in my thoughts 

Glebe 

All the best for this afternoon, Adrian x

Thank you. I will be honest, it's not the best news, but I'm not going to let it get me down. I will give you a quick treatment rundown as you have asked for and prognosis, but like everyone says, everyone is different and have different chemo and outcomes, this is mine from today.

I am on Pembrolizumab, an intravenous immunotherapy drug, alongside Oxaliplatin (chemotherapy drug) for one day, second day, a take at home chemo tablet called capecitabine then I have 3 weeks to recover then start again for 5 cycles. 

If I don't have treatment, ball park figure of 3 to 4 months life expectancy, with treatment, ball park on average figure of 10 to 18 months. If treatment makes me too ill, then other options would be tried, but it was still a bit of a shock to hear this to be honest. But this is reality, I cannot do anything other than make the best of the time I have left, for myself, my friends and others less fortunate.

I won't be running any marathons or jumping out of planes, but my life has been pretty good and I have had help over the years when times were hard, so I will be paying back too fund raisers; I can't take anything with me and am going to make sure the government don't get it.

I say this, because I know you and your husband will be worried, as was I, but if the diagnosis is bleak, hold firm to the belief that you still, both, have a future and embrace the time you have. I have no intention of becoming sad or depressed, I may do when I'm sick, I don't know, but before Xmas, I was looking forward to retirement in 6 years, I didn't have a clue that it may of been my last one. It's harsh and unfair, but it's real. Face the reality then make plans that fit in with that reality, that's my advice, I hope you understand. Your husband is very ill , by the sounds of it, but there is always hope, always a future, long or short. Support each other, trust the NHS, they are a class above and above all, try not to worry too much.

All the best

Adrian