Hi, I'm new here and hoping for some advice

Palliative is one of those words which frighten the heck out of many people, when we were told my husband would be palliative only, no cure possible, our whole world crashed..  but here we are, still palliative and four years on come May.  They may not be able to cure Roots, but they can keep you here for a considerable number of years with the right treatment and that in itself is a little bit of a miracle.  

You have as you say already had your own miracles, but there may be a continued supply for you to look forward to.. whilst you are focusing on the waiting, try to also focus on the beautiful things around you, that helps the miracles happen..  I do hope you get good news when you see your oncologist, Good Luck. 

Thank you so much for the reminder. It really helps to keep me positive, and to make the best of whatever time is left to me.  Really appreciate the support here.

Hi RootsJ

I am so sorry for what you are going through, as if you have not had enough on your plate to cope with.. 

I have been told I am not fit enough to undergo surgery I am 70 and have other health conditions as well. I have been told I have adanocarcinoma of the oesophagus. The treatment I have been getting is an EMR, I was supposed to go for another one last month, but when I went to theatre when they went in there was no visual signs of the cancer, so it looks as if they got it all in the last ERM.. They have now taken more biopsies and I am to speak to the surgeon on 1st May to see what is going to happen now.  I am not sure what this is going to mean, maybe 3 monthly scopes to just keep an eye on me, or something else. 

I wish you the very best of luck and I hope you get the correct treatment for you. Never give up hope that a miracle will happen for you, it is time you had some good luck. 

Oncology appt today.  Much to everyone's surprise my lung function test was better than the previous one, so I am considered fit enough to undergo the combination of radio and chemotherapy (carboplatin and paclitaxel)  Five weeks treatment, with radiotherapy five days a week and chemo once a week.

I was also told that I could have pembro again, but it's not considered to be curative for this cancer, and would need to be combined with radiotherapy.

So I have agreed to go ahead with the combined radio/chemotherapy.  The possible side effects make a horrifying list, and apparently I will have a feeding tube inserted into my stomach before treatment starts as it's assumed I won't be able to swallow even semi solid food.

I am rather dreading the whole thing, so hoping some of you wonderful people can reassure me that the treatment and the stomach tube won't be as awful as I fear.

Even if I don't get a second miracle healing, I will at least have given it a good go?

Hi RootsJ. I was pleased to read your last post where you did better than expected on the lung function and you’re now up for Chemoradiation. I had this treatment last June (different drugs to you); 11 weeks in total of Chemotherapty which meant four infusions (every three weeks) then tablets twice a day plus 25 sessions Radiotherapy for the last five weeks. I faired quite well and had few symptoms, I was just very tired. The Radiotheapy can create discomfort when swallowing particularly towards the end of the 25 sessions but thankfully eased after about two weeks once it had finished. I also had a feeding tube inserted into my tummy (this was after the operation) and found it nowhere as bad as I thought. I basically got fed through the night and during the day just taped it up so I didn’t catch it. Hope this all helps and wishing you well in your forthcoming treatment. Julie

Hi

Following on from what Julieanne60 said, I had the same treatment plan but I had the stomach feeding tube put in before treatment started as the tumour had blocked my oesophagus completely. I wasn't pump fed overnight, I had to syringe 6 Fortisip into the tube throughout the day (I was not given the option of the pump overnight, no idea why). I had to syringe everything through the stomach tube, water, medication etc as I couldn't swallow everything. It took up a lot of my day. So if given the option then it sounds like being pump fed overnight is the easier choice. 

I hope it all goes well for you.

Amanda

Hi

My husband also made a total recovery from terminal bladder cancer on Pembro but was devastated two years later to be diagnosed with OC. He has a PEG feeding tube and everything goes down it ATM as his mouth tastes so awful he won't take anything other than sips of water by mouth. But the feeding tube (which I manage) gives an opportunity for some human touch (literally) and also means his weight has stabilised. Staying positive when you've already recovered from one cancer is the hardest though and I don't think there is a magic bullet apart from being kind to yourself and trying to do one thing each day that you enjoy. Even if that's trashy daytime TV ... As for eating, spoil yourself - try ice cream, smoothies made with peanut butter, banana, fruit and cream (all things that were forbidden) and creamy soup. 

Thanks to Julie and Amanda for the encouragement re the feeding tube.  ATM I can't really get my head around how I will manage it, but your comments are helpful, and I know I will also have the support of the medical staff and a dietician.  I have loads of questions about how they will manage my usual meds (for other conditions) and how they can be crushed fine enough to administer through a tube, but hope they will be able to tell me.

Thanks again for your help and support

Roots

I haven't lost much weight yet, but accept that I will.  I've been trying to lose weight for years, but the COPD limits my exercise.  Seems I will now lose it, whether I like it or not.

I'm taking great pleasure in bird watching at the moment, from the comfort of my sofa.  We have so many birds visiting our garden.  My particular favourites are a family of robins, with three rather fluffy babies.  And I'm not averse to watching quiz programmes on TV - my excuse being that it keeps my brain active.

And yes, I am indulging in a whole lot of treat food, which I would never have dared eat before - creamy soup, ice cream, chocolate mousse and soft cheese, anything which I can add my crushed tablets to and is easy to swallow..

It sounds as if your husband is doing well, and is lucky to have you as his carer.

Thank you for your encouragement.

Hi Roots

The doctors gave me all my meds in liquid form. The paracetamol was the dissolvable type which I had to make up beforehand, stir thoroughly and put in the syringe. 

Amanda