Tubes and the postcode lottery!

Helen. Are you going privately re you dieticians care? That would explain the insistence that you be hospitalised with an NG tube. Risk averse to litigation? 
I know people who have been treated at RMH and were point blank refused an NG tube even though they were in a bad state. Normal eating? Yes the odd patient manages fairly well. Lots don’t. 
There’s no getting away from the fact that stomach tubes can take weeks to settle. Some folk are fine some in trouble for quite a while 

My trust places NG tubes reactively  

You are at the mercy of your medical team I’m afraid. That’s just the way it is 

My experience, at the Royal Devon and Exeter, was that I was offered either an NG or a PEG/RIG pre-treatment but wasn't told I had to have one; I don't think the discussion about putting one in during treatment even came up (it might've done, long time ago now). I was in mostly manageable pain for a few days, only got bad when I didn't take enough pain killers before bed early on. I was pleased I had it and I'd make the same choice again.

More recently the same hospital put in a NG during my op, and, while they were content a few weeks later to let me go home for a week-end with it in (didn't do it due to practical difficulties), before discharging me they changed it to a RIG, which again I was very comfortable with; those ph tests on the NG were a nightmare!

Not saying anything's right or wrong, just relaying what happened to me.

MikeO said:

Not saying anything's right or wrong, just relaying what happened to me.

That’s the point isn’t it. It depends on the hospital’s regime. We go with the flow. Yes pH testing was rubbish. I never got a definitive result first time. I managed mine for six weeks or maybe it was eight. Time clouds my memory. 

Hi Helen. Would say rubbish but each trust vis different. As you know I had my tube fitted shown how to work it and sent home 3 hours later only delay was waiting for the feed to be delivered to unit that day. I kniw if not one person who has beennforced to stay in weeks with a n g tube unless like  Dani says litigation. But surely a peg fitted snd 6 in for 3 months ……is surely harder.
my first tube in exactly 3 weeks my trust changes for a new one every 3 weeks then I took it out in front of nurses  3 weeks later snd managed to maintain weight orally. 
i don’t know what to say to their comments maybe  refer them to our blogs. Oops. 
can you ask your oncologist surely they have some input ? 
During covid many trusts mine excluded refused any type if feeding tube whuch was horrendous for some  people. 
Hugs Hazel

ps I had no issues with either of my tubes my hubby used to check my p h leval and set up my pump evrn in middle of night 

Hazel xx

Hi Dani - Everything is being sorted out by the nurse (NHS) at this stage. I will check with the team when I start treatment though.

I have not met anyone yet! Is this even normal? I met my oncologist once, the day he returned from holiday - he mentioned about starting treatment beginning 20 June (2 weeks later) then didn't seem to know anything about the laundry list of steps that I hadn't yet been through: feeding tube discussion and date, dietician (no idea, not met anyone yet!), dentist (had not looked at x-ray for wisdom tooth - which was removed the following week), no mask, no planning scan. I must say that this does concern me very much thinking back! The NHS nurse has made calls to sort things out, but it was clearly impossible for me to start on 20 June; so my start date then became 27 June. However 2 days after my mask & planning scan, my oncologist went on holiday (again)!  No words really.... it doesn't fill me with much confidence. Should I be getting a 2nd opinion?!

Helen x

Hi Hazel - This just seems to be the policy in my area. I have not said that I would get the elective tube privately (so doubt it's litigation), just that I've spoken to people in the UK who have gone down this route via NHS. The nurse explained they offered PEGs/ RIGs and if anyone had to be taken in to have an NG tube they were admitted. I'm assuming looking after the tube is not rocket science.... but it's just the way they do things here I guess.

But the nurse did mention in a follow-up call there may be a possibility of being released if the team is happy the NG could be managed at home. She also said it is possible to get a RIG removed earlier if it was obvious that oral feeding was good and weight was being maintained. So, it's all a bit bizarre really and feels a bit free-flowing.

I'm very strong-minded so I will speak up as required and have the tenacity to get my point of view heard loud and clear if necessary! All I'm hoping is that I hope I don't need to resort to any tubes, but having the option of RIG or NG is obviously good as backup.

Helen x

Thanks Mike - It is good to know I at least have the option of a RIG (they can also do a PEG - not really sure what the difference is though)  I was a bit concerned about having it mid-treatment, but the nurse assured me that many people do get it in Wk3 and that I'd be seen by the pre-op team between my 1st cisplatin and the RIG date to check how well i was doing. She wasn't alarmed and has obviously seen this done countless times, so perhaps I'm worrying unduly. 

I pray I can eat my way through the entire treatment and recovery (I'm so determined, I'll give it my best shot anyway!) but having the option of the RIG date booked in gives me some fallback I guess.

Helen x

HMS said:

(they can also do a PEG - not really sure what the difference is though)

The only difference is in the way they're fitted, a PEG is inserted into the stomach by using an endoscope to identify the position, a RIG is inserted using x-rays to identify the position.

End result is the same.

But being practical, I do think that these things can easily happen due to holidays (x3) within the team and people being off sick (x1) - both scenarios happened! Add to this the silly Jubilee extended bank holiday weekend .... and it seems to have left a few people chasing tails

I'll remain positive and once I start the treatment regime I'm sure I'll meet others in the team (dietician, speech therapist, nurses etc.). I just crave routine I guess (which for someone that has oft' been known for my spontaneity, is quite a novelty!)

Hx

HMS said:

it doesn't fill me with much confidence. Should I be getting a 2nd opinion?!

Heavens, I don’t know. It all seems so patchy but I guess things will slot into place. I wouldn’t. It will delay things even more.
 The day my diagnosis was confirmed I was whisked off by my oncologist who went through my consent form line by line. We discussed things regarding treatment and side effects. I didn’t see him till my six week post treatment check though I did see his registrar twice during radiotherapy. 
I had a dental check and was introduced to my CNS. 
Appointments  were made there and then for my mask and planning scan and with Macmillan counsellors. My care was seamless. My feet didn’t touch the ground. 
I can’t fault The Singleton and the staff.