discussion Health update.

[BarryW]

Still in bed, feeling is getting better in my legs but still very slowly. Just not getting enough physio, which is very frustrating. I really need to get out of bed. I do some leg exercises they suggested and others I have worked out and control over my floppy legs and feet is improving.

As for the cancer. I was given these very expensive injections and told that follow up injections had to be made 28 days later. Well, I was then transferred back to my local hospital and I discussed this with the Ward doctor and an oncology nurse. The injections were supposed to be given Friday but were not done. The drug, not surprisingly, is not held by the Trust and has to be specially ordered in. They failed to do so. An order was put in for the drug Monday.

Somebody somewhere cocked up and I am fuming and, for the first time, worried. I need to see an oncology specialist to find out what, if any, the implications are of this drug being given up to a week late.

The famous incompetence of NHS management strikes again.

 

[Jack L]

Still in bed, feeling is getting better in my legs but still very slowly. Just not getting enough physio, which is very frustrating. I really need to get out of bed. I do some leg exercises they suggested and others I have worked out and control over my floppy legs and feet is improving.

As for the cancer. I was given these very expensive injections and told that follow up injections had to be made 28 days later. Well, I was then transferred back to my local hospital and I discussed this with the Ward doctor and an oncology nurse. The injections were supposed to be given Friday but were not done. The drug, not surprisingly, is not held by the Trust and has to be specially ordered in. They failed to do so. An order was put in for the drug Monday.

Somebody somewhere cocked up and I am fuming and, for the first time, worried. I need to see an oncology specialist to find out what, if any, the implications are of this drug being given up to a week late.

The famous incompetence of NHS management strikes again.

Frustrating news about the injection!

In terms of the physio treatments, when my Mum was in hospital after a major stroke in her mid 40s, she had similar frustrations in that she could be doing much better (and be out much sooner), if she received more treatment. My Dad suggested to the staff that if they could show him the basics, he could do additional work with her during visiting hours. This started working so well that the nurses relaxed the official visiting hours for him so he could watch the proper physio sessions and then carry on with them himself. Is that something your partner or a family member might be willing/able to do? Of course the staff may not allow it, but it may be worth a try?

 

[boatman]

Still in bed, feeling is getting better in my legs but still very slowly. Just not getting enough physio, which is very frustrating. I really need to get out of bed. I do some leg exercises they suggested and others I have worked out and control over my floppy legs and feet is improving.

As for the cancer. I was given these very expensive injections and told that follow up injections had to be made 28 days later. Well, I was then transferred back to my local hospital and I discussed this with the Ward doctor and an oncology nurse. The injections were supposed to be given Friday but were not done. The drug, not surprisingly, is not held by the Trust and has to be specially ordered in. They failed to do so. An order was put in for the drug Monday.

Somebody somewhere cocked up and I am fuming and, for the first time, worried. I need to see an oncology specialist to find out what, if any, the implications are of this drug being given up to a week late.

The famous incompetence of NHS management strikes again.

OH Barry that is disscustin as you say someone doesn't seem to care tyical of how things are bein run now yes id be bloody :angry: angry its your health they are so suppoce to be takin care of hope you get them soon an hope thing work out ok for you sir an how long have you been in bed for now ?
jen an i are hopein for your recovery soon as im missin you on the forum building that lank ATB
FROM US to you sir
chris an jen

 

[Jim R]

Your frustration and anger is understandable. Organisational incompetence seems, sadly, to be the norm at the moment. I wish you all the best and sincerely hope things get sorted soon.

 

[PaulTRose]

Is the injection called ADT or Prostap?......it wont hurt being 7 to 10 days late.....not ideal but it will be ok....i had similar happen......you can have a triple dose that lasts 3 months which makes things easier.....have they said how long you are on it?

 

[dave]

Sorry to hear of the monumental ****-up. The more I hear of the state of the NHS from people still in the UK I despair.

 

[BarryW]

Is the injection called ADT or Prostap?......it wont hurt being 7 to 10 days late.....not ideal but it will be ok....i had similar happen......you can have a triple dose that lasts 3 months which makes things easier.....have they said how long you are on it?

No,‘it’s a very new treatment and a very expensive one apparently. So screwing it up like this could be a costly mistake.

The second dose not arrived yet and it has been modified apparently. I have demanded to see an oncologist to answer questions.

 

[BarryW]

OH Barry that is disscustin as you say someone doesn't seem to care tyical of how things are bein run now yes id be bloody :angry: angry its your health they are so suppoce to be takin care of hope you get them soon an hope thing work out ok for you sir an how long have you been in bed for now ?
jen an i are hopein for your recovery soon as im missin you on the forum building that lank ATB
FROM US to you sir
chris an jen

Hi Chris and Jan
In bed now nearly 7 weeks!
Very frustrating.

 

[BarryW]

Sorry to hear of the monumental ****-up. The more I hear of the state of the NHS from people still in the UK I despair.

What is so annoying is how good the front line staff are. It’s the organisation and incompetent managers letting it down.

 

[boatman]

What is so annoying is how good the front line staff are. It’s the organisation and incompetent managers letting it down.

Yes Barry throughly aggree with you as jen booked an appionitment for me to see a doc 3 wks ago an just out of the blue this morn there was a letter in post box sayin my app was moved to a later date an i dint know this till i got home from the docs an the recpition lady sayin an when i saw recepitioness in docs she said so an jen said well were here now for my apptintment an jen said you might have let us know earlier an said well we want the app now ASAP an yes they sqezzed me in as jen wont be messed about wow be differnt story if she treid to get me an app quickly but jen booked my app 3 wks ago oh dear whats happening

an Barry what are you doin to pass the time as 7 wks ? id be goin off my head as it was bad enough for me after bein on the floor for a month due to back trouble after my back injury at work
BEST WISHES FROM US BOTH TO you sir
chris an jen

 

[boatman]

AN IT GOES to show what a muck up this country is in as they closed my bank last yr an ive had to go right to norwich an i said this is redicalous an they told me oh there are bank people nearer you than norwich so i asked where an i went this morn to see what i was told is true an apparently its in a church would you beleive an i said have got to see the vicar lol what a b*lls up

 

[BarryW]

Yes Barry throughly aggree with you as jen booked an appionitment for me to see a doc 3 wks ago an just out of the blue this morn there was a letter in post box sayin my app was moved to a later date an i dint know this till i got home from the docs an the recpition lady sayin an when i saw recepitioness in docs she said so an jen said well were here now for my apptintment an jen said you might have let us know earlier an said well we want the app now ASAP an yes they sqezzed me in as jen wont be messed about wow be differnt story if she treid to get me an app quickly but jen booked my app 3 wks ago oh dear whats happening

an Barry what are you doin to pass the time as 7 wks ? id be goin off my head as it was bad enough for me after bein on the floor for a month due to back trouble after my back injury at work
BEST WISHES FROM US BOTH TO you sir
chris an jen

As it’s difficult to sleep at night, I do doze a bit in the afternoon. The rest of the time I am alternating reading my Kindle, watching GB News, YouTube, even started playing a few games on my laptop. In all, it is pretty boring. Looking forward to meals and coffee with biscuits in between.

 

[stillp]

Yes Barry throughly aggree with you as jen booked an appionitment for me to see a doc 3 wks ago an just out of the blue this morn there was a letter in post box sayin my app was moved to a later date

An appointment in only 3 weeks? You're lucky Chris!

What is so annoying is how good the front line staff are. It’s the organisation and incompetent managers letting it down.

One of the common problems, which seems to be the cause of your issue Barrry, is that different departments don't communicate with each other.
Pete

 

[Airborne01]

What is so annoying is how good the front line staff are. It’s the organisation and incompetent managers letting it down.

.. and the sheer abundance of overpaid 'managers' ...
Steve

 

[Peter Gillson]

Hi Barry

sorry about the injection mess-up. hopefully they get things sorted asap.

Peter

 

[Ian M]

Seven weeks in bed! I would go absolutely mental. At week on the sofa with a cold and I'm crawling up walls!
Hope things get sorted with the jab.

 

[HAWKERHUNTER]

Stay positive Barry. These new drugs are incredible, taylor made to your individual condition and I am sure you are going to kick this illness into oblivion.

 

[adt70hk]

Sorry to hear about the mix up Barry.

Can't be easy being stuck in bed.

ATB

Andrew

 

[BarryW]

Well I had my second oncology jab on the tum and a few minutes later had excruciating tummy pain for which I was given morphine. It finally eased off now. Thankfully.

I now have a specific contact for support and help. I am also told that chemo and other treatments are likely.

For the first time yesterday with help I was able to get out of bed into a chair for an hour. That was nice and a sign of progress.

 

[Jim R]

For the first time yesterday with help I was able to get out of bed into a chair for an hour. That was nice and a sign of progress.

That's definitely a sign of progress. The jab, sitting in a chair, getting the treatment you need - all progress and mentally puts you in a better place as well.
All the best.