Word on Poet Christopher Robin

[Barbie]

I am so Glad! get better soon Christopher

 

[Poet Chistopher Robin]

The peg feed op went ahead no problem took all of just five minutes, no sore throat, although a week later and it’s still weeping as still also very sore too, Currently I take only my meds and energy boosts down it, but with just my left hand it is impossible for me to do alone

The ALS stepped up yet another notch to while I was in the hospital too preventing me from raising my left hand that high, as also preventing me from pushing myself up to sit up of the mattress this morning

But there were other problems created by junior doctors and nurses alike despite my demanding to see the registrar to make full complaint as far as I am aware this request was never even passed on once

The next day I could not go to the toilet at all so I was gave a catheter as a temporary measure, they say this often happens after an operation, they have tried to remove it once already but to no avail as I still had not been 10 hours later so another was fitted, and it is a week solid since I went for an actual pooh.

I am very tired eating soups custard smoothies, while awaiting some pureed meals to be delivered, to be taken orally which are much the same as hospitals supply

My mouth is major dry, more so in bed, but I do take the biotene gel and spray I cannot sit in one position for very long a time, otherwise find it difficult to swallow my own spit. I am also very unstable on my feet and finding it hard to push myself out of bed in a morning. Hopefully this will change somewhat when the pureed meals arrive.

I am very thin and have lost a lot of weight, my other half is back at work tomorrow, and thanks to the ignorance of a social worker I’ll have carers in for just three hours out of a ten hour day and will have to open the door for each one

I do not care what any person says about my complaints; I am dying terminally ill and not sitting there to be abused by doctors and nurses alike. I dread to think of the ill treatment I will receive when I cannot talk walk or move or indeed speak up for myself at all, and so many folk wonder why I wish and often pray I was dead sooner

It is about time that terminally ill dying folk were heard and treat with the due respect they are due and not pushed aside and used as a scapegoat for erring staff doctors and nurses as also local Doctors alike

 

[mich5]

So sorry about your hosp stay but thrilled to hear the update that you're out of surgery. hope you are home soon!

 

[LNKa]

Chris, thank you very much for the inspiration how to fight with this disease. Your stories helped us many times to find funny side of the difficult situation.

I'm so sad for terrible time in hospital. I hope next days will be better and better for you.

 

[tammyg]

We miss you Christopher Robin, you add so much talent to this site. I hope you are feeling better soon.

 

[BeckyW]

Please comwe back soon Christopher. We miss your poems.

 

[skipper66]

Thinking of you Christopher. Hope you are start to feel better. We all miss you on here. Stay strong! Sending you warm thoughts and a big hug. Kim

 

[Willow]

Christopher....I don't know you at all but have been reading off and on about you and some of your stories.
You seem to have a wonderful grasp on things and I am so sorry that you are having to deal with horrendous conditions by health care at this time. I am sorry it makes you wonder and dread about later because I believe we should only try to have positive thoughts about what is going on and what is going to happen. A bit Pollyanna I agree, but hopefully would help make end days as bright as they could be.
I am really so sorry for what you are going through and I wish there was something I could say to help. The only thing I know of is that the folks here on this forum care for you and will be here when ever you need. Good, bad or indifferent. You have given a lot here from what I have read, I have no doubt a lot would give back.
Hope you feel better soon.

 

[retiredmus2010]

So glad you have come through the hospital ordeal. Keep up with that marvelous spirit of yours. This ALS world sorely needs YOU.
G.

 

[cervus]

Welcome back, Christopher. Sounds like you went through a horrible ordeal with the staff. Keep the site clean. Not being able to go to the bathroom might become an issue. I hope somebody is watching out for you. Hopefully you'll get additional care hours too. So sorry you're going through this. A lot of people on this site missed you! Yasmin

 

[brooksea]

I'm sorry you have been through so much. It seems things can either go very well or very badly. I, too, hope you are being looked after properly! I hope will also keep us updated.

 

[Danijela]

Christopher, please ask someone about CHC - continuing health care funding. It would pay for better care and for more hours, if you qualify. Get district nurses involved, to get you started on Jevity feeds via PEG, to get your strength back. Watch out for infection and do not let them tell you it is just 'stomach juices' - we were told this and it turned out to be an infection which needed antibiotics. Dani

 

[dberbicegirl]

Chris:
Get well soon. Your poems are an inspiration to many of us. It seems as though some health care professionals need to get a refresher course on bedside etiquette. The more knowledge I gain about ALS- changes my definition from Amyothropic Lateral Schlorsis to "A LIFELONG STRUGGLE" for those diagnosed, families and friends.

Desi

 

[mysticunicorn66]

Great news! Praying for a speedy recovery from the surgery. Prayers being lifted up for him and his family.

 

[panguinjen]

Chris,
Get well soon! I hope the home care gets worked out! Thinking of you!

Jen