Post Oesophageal metal stent experiences.

Hi Graeme

Sorry you did not get a response to this post, I am just bumping it up in case someone has missed it.

I hope that Mum has started to have a better experience of the stent now

Regards

Lowe'

Hi Lowe,

Thank you so much for bumping my post.

It's 3 weeks approx. since mum had this metal stent placed in her Oesophageal stricture.

I must be honest here, it has caused the pain from front sternum area to between her shoulder blades. But it was essential if mum wanted to swallow, she couldn't swallow water on occasion. She can take thicker liquid foods orally now, but then this pain begins. So I still bolus feed through the PEG, about 75% of the time.

The good news is she has yet another endoscopy on Thursday, An examination of the stent, & also a new PEG feed tube fitting. If the stent has slipped they will placed it back in situ. 

Something else I really advocate is people get in touch with their local hospice, it's amazing how far they will go for you. And being 1 nurse for 1 patient, there are no misunderstandings or the need for communication between the hospital clinics, so much info is forgotten or lost. This rectifies that problem. And you can actually get a quicker reply if things turn sour. I was sceptical at 1st, to me a hospice meant last port of call. But that has been consigned to history. It's now a very useful support system, even for those in remission. At any time during illness, not end of life.

I really feel that this site is 1 big family, always there for others & vice versa. And it's so sincere, people really care. Just as you have shown for me & mum .

So Lowe, thank you once again, 

My best wishes to you & all your friends & family.

Regards,

Graeme.

Hi Lowe,

I've just read the battle your husband is facing, I am so so sorry & quite shocked at the effected organs that Dai has to fight for. 

And yet you still have time to advise others. Honestly, that makes you a saint in my eyes.

I really am taken aback by your knowledge of different cancers, I can truly say that you are 2nd to none when a person requires good & proper answers. 

And it isn't just your husband with cancer. Your plate is full.

You my friend are so brave & yet so positive & you continue to fight, to win. 

I'm so glad that the community has you, I do love the way you put an arm around people who are new to Oesophageal cancer & are so frightened about the future.

We both have our closest on palliative care, non curable. It's very hard to accept. Yet you have that level headed approach & continue to fight. I'm trying to do that for my mothers sake. 

I just want to say thank you to you for being there for others, I too love to help but have limited knowledge, so I do my best with what I have, basing everything on what I have experienced & know to be true.

So Lowe, I raise my glass (half full) to you, & I'm so very sorry for Dai, but he has you, he has the best.

My deepest regards,

Graeme. 

Hi Graeme

Thank you for your kind words, things are a little bit difficult at times what with all that is going on, but I find that this site keeps Me firmly on the ground. Initially I joined searching for good news stories, something that would tell me everything is going to be ok  there was so much information, but nothing quite like what Dal had been diagnosed with at the time.. We knew that surgery was not an option and had also been told radiotherapy was not on the cards. A stent was mentioned but the consultant really wanted to hold off on that, and for Dal at least, that seems to have been the best decision. As tough as it was at the time for Dal to eat, and the rapid loss of weight which caused even more concern, in the end, it has worked out well. Yet the experiences I have read, and the responses I have had, helped tremendously 

My Dad, bless him, is 82, and it frightens me to watch a tall, broad man waste to nothing, but he is loved and looked after by his wife, other daughter and son in law and their family, I WhatsApp him regularly but he is less able to talk now, even when on the oxygen, though somehow with all he has going on, he still smiles at me and his eyes twinkle 

My brother in law has just started his treatment, they are giving him ipilimumab chemo which is once every 3 weeks for four treatments, he has a different mindset to Dal and it is difficult to watch him struggle with his condition . 

All of that said, I live by the thought that none of us are promised tomorrow, live for today make your memories and help others make theirs, I am privileged to have been asked to represent the community here and I genuinely like to help others in any small way, but it is not always through personal knowledge, sometimes I research deeply before responding, other times I am just my direct self (which is always a bit concerning  as the written word is easily misconstrued) 

You are doing really great for your Mum, I had never thought about connecting with the hospice previously but it was great advice thank you.

I have read some of your responses to others also and it is uplifting to find how connected you are and your words show that you are here to help Thank you. 

I too raise my glass to you (half empty also, the other half in my belly ) stay strong, stay focused and I wish your Mum every success in her personal fight and I am here for you both, as are all of the Macmillan team 

Regards

Lowe'

Hi Lowe,

I'm very happy to offer my advice. This stems from 2006 when my father had a grade 3 Oesophageal tumour, & he needed the Ivor Lewis 9 hour op to cut the bad part out. It sounded horrendous & yet he always said that the chemo (5FU & Cisplatin) was far worse to endure. He made it into remission after 5 years. But, & this still haunts me today, in 2013 at 3am he went to the toilet, slipped on the top stair, fell down the 13 steps & broke his C4 vertebrae with damage to the spinal chord which meant he would be paralysed from the neck down. So we spent 39 days visiting ITU to tell him about different things in the news etc. (Dad was on a trachy so he couldn't speak sadly) On day 39 we were ushered into an adjoining room at 4pm where they told us he would die that day. He was on 100% oxygenation now. The specialist told us dad would die slowly & painfully, or we could sign life support withdrawal forms & then watch him pass away. It took him 25 minutes. 

So yes, live life to the full, be happy, don't take life for granted, anything can happen at anytime.

I will be going sky diving again if mum is fit enough & has someone with her. It's only so I keep up to date with my licence.

And if mum is strong & in good health, I want to buy a weekend in a swanky Paris hotel for her & a friend. I haven't told her, it'll be such a lovely surprise.

So I've had both parents with Oesophageal cancer & it is something I'd like to share the knowledge I accumulated from both parents. I want only the best for everyone, I enjoy helping & calming people down.

I do apologise for calling your husband "Dai". I put my readers on & saw that he is Dal. 

I will say bye bye for now, time for walking my locally famous dog, 78kg's of Caucasian Shepherd. My right arm is 6 inches longer than my left..

All my best wishes to you all,

Regards,

Graeme.

Hi Gray

What can I even begin to say, wow! your Dad bless him! and then to have Mum experiencing similar.. have you asked to be checked?

It is late and I am not too long home from work, but, if you are happy for me to do so, I will put your name forward as a community champion for this site....please, do not think you have to, and I do not promise that you will be asked  even if I put your forward, but if you are interested...let me know.

Don't worry about calling Dal, Dai..overtime, I have called him much worse 

Lowe'

Hello Lowe,

What does being a community champion entail? 

Best wishes as always,

Graeme.

Hi Graeme

A community champion is someone who helps the Macmillan Team monitor the forums, answer posts and generally help out where they can. Now I don't know if they are currently recruiting but when they do they look for 

"someone who can give us 2-8 hours of your time and have been affected by cancer, either as a patient, friend or carer, then you may be interested in volunteering for us"

You may have seen other posts from community champions, around the site, and that is what a CC does. Look out for their next announcement or let me know if you are interested and I can put your name forward for when they start recruiting. 

Lowe'

Hi Lowe,

I really enjoy being helpful whenever I can. I look at this forum when I get a few minutes, many times a day. I've actually just told someone to "Ask a nurse" about a grading his dad has been given. And you can be sure I'll be on here a good 6 times a day. These poor souls who are patient but want an answer asap, I try to get an idea or an answer as fast as possible. I am no expert, I know what I've had actual exposure to regarding my parents. And what the community has given me, lots of great answers that I have implemented successfully.

Would you think any less of me if I were to politely decline being a champion (just for the time being), my reason is that I never know how busy I will be from day to day. On a quieter day I may have  2 hours spare, when mum takes a downturn, well I'm lucky if I have time for hot food, so I keep a stash of energy food & drinks that take no time to prepare. Twice this week mum has needed me all day. Yet today, she is in good health relatively speaking, it gives me a chance for hot food & a break to restore my energy levels.

But I will be on here many times a day anyway. I can't ignore people who are worried or just want advice & answers. And I'm here to stay. 

I don't do instagram or twitter, To me they are unimportant. But here, well this isn't just important, it's essential.

So I will see over the coming weeks how much time I average per day on this forum, then I can establish if I have the time to be a Community Champion. (If accepted of course.)

Best wishes Lowe,

Graeme.

Hi Graeme

No problem at all, you are doing a sterling job without being a champion and helping me out a great deal 

Lowe'