Saturday, March 3, 2012

33. PEG "Tubie"

I've been living with "Tubie" for four days now, I'm starting to get used to it. It has to be "flushed" with a big syringe of sterile water twice a day, by me. And the "wound" site cleaned and re-dressed once a day.

The pain is much much less now and I'm sleeping quite well, even managing to lie on my side a little now.

I've brought some M&S vests to help keep "Tubie" in place and comfortable.

Thursday evening I performed my second only "flush and clean & re-dress". I finished ( it's completely painless ) and I looked down at this plastic tube running into my stomach through a hole in my belly and I felt very small & vulnerable and not very strong and not very brave ( like everyone seems to think I am ) and I cried for a couple of minutes, and not just a little bit either. I was feeling very-very sorry for myself and almost overwhelmed by the whole experience. A hug from Jo was a huge help, they always are.

This is part, of the start, of the end...

32. Guy's Hospital Pharmacy

Wednesday 22nd, 5:00 PM

Guy's Hospital Pharmacy...

Absolutely FUCKING appalling !

I'm still in a considerable amount of discomfort, shuffling along like a decrepit old man, labored breathing, groaning, moaning and grumbling. Jo leaves me in the entrance hall of the hospital while she goes to the pharmacy, and just to be clear this is Guy's Hospital's own in house pharmacy, not some random on on the high street.

She returns at 5:15 with the receipt / counterfoil for the prescription for "pain relief medication and sedatives". The info display in the pharmacy is quoting the average waiting time of "38 Minutes".

At 5:40 Jo sets off, back to the Pharmacy. The receipt / counter foil is marked as "5:13" it's not quite been half an hour yet, but they may have been already been able to fill in the prescription.

5 minutes later she returns, in tears, distressed and in a fluster. The pharmacy staff are "refusing" to let her back in to collect the prescription. There's a girl working behind the counter and a couple chaps who seem to be waiting for their prescriptions filled. Jo has made eye contact with her through the glass and knocked on the door, one of the chaps waiting has asked her "shall I open the door and let her in ?" and she shook her head and said "No !" Jo knocked some more and waved the receipt / counterfoil at her through the glass of the door and she just she shook her head again and carried on with whatever she was doing. She didn't ever venture out from behind the counter and have the common courtesy to even explain to Jo what the issue was and how she might be able to circumnavigate it.

So here I am propped against the wall in the entrance hall of Guys hospital, in a significant amount of pain with my prescription for 'pain relief and sedatives' on the other side of a locked door.

Jo gets on the phone the Acute Oncology 24 hour help line. I have an uncanny flash of inspiration and shuffle off back to Oncology Outpatients Clinic in the vain hope that even if Dr Teresa is not there then someone who can help might be. 

She's there, Dr Teresa is still in her consultation room chatting to one of her colleges, another Teresa. She asks "what's wrong and what am I doing back there ?" I explain the situation, then I explain it again. I have to explain what has happened 3 or 4 times before the two Teresas finally comprehend what the pharmacy has done.

The two then had a hurried discussion about what Dr Teresa had prescribed for me, unfortunately the 2nd Teresa had no Co-Codamol "upstairs" then she declared "I've got a set of keys, come with me and I'll open up the pharmacy myself and get your prescription" and off she marched and off I shuffled after her. I had to call to her to "go on with out me, I'll catch you up". I didn't. I stopped at the entrance hall brought Jo up to speed and sent her off after Teresa No 2. Jo returned 10 minutes later with my entire prescription fully made out and a look of relief on her face. By now the morphine is starting to ware off so I took a couple of co-codamol there & then for the journey back home.

I haven't had a chance to thank both the Teresas yet, but I'm going to.

I think I'll be writing a fairly strongly worded letter of complaint to Guy's about their Pharmacy.



31. Oncology Outpatients Clinic

Wednesday 22nd February, 4:00 PM

Weigh in and blood test, inc. a full PICC clean and service, all fairly routine.

Having only just been 'discharged' from the Esther ward, i'm in for a consultation with... Dr Teresa Guerro-Urbano.

We discuss the Chemo & side effects and she re works the anti sickness regime accordingly. We discuss pain management, I'm still in a considerable amount of discomfort, visibly so and enough that she questions me as to whether I actually wanted to go home that day. As she has prescribed stronger pain killer than those I was receiving on ward and that the episodes usually only lasted no more than ten minutes and as I could take one of the painkillers immediately on finishing our meeting I thought I'd be OK. She seemed very nice and it was great to have finally meet her. I only wish I'd have been in a better shape to have fully capitalized on the occasion.

Meeting over and Jo and I decided to avail ourselves of the Guy's Hospital "in House pharmacy" get the pain killers now and get some more into me right now for the journey home.

30. PEG Tube Insertion

Monday 20th February 2:00 PM

Fear and Loathing...

I'm being fitted with a PEG Tube, that's a gastric feeding tube. The whole idea of which fills me with dread & foreboding. It's sold to me on the understanding that it will make recovery from the RT easier and quicker. If I can live for 3 months or so with the PICC Line in my arm then I guess I can learn to live for 2 or so with the PEG tube in my tummy. But still the idea creeps me out and I'm having 'extreme' difficulty maintaining the facade of being 'brave & strong'.

I'm due to be admitted into the Blundell ward of Guy's hospital at 2:00 PM, I'm there 20 minutes early, so I have plenty of time to feel sorry for myself and have a little cry. At 2:30 past I'm collected and taken across the corridor to the Esther Ward ( Blundell are full ) and I have my own room.

No jumping on the beds ?


There's a pay for view TV supplied by www.hospedia.co.uk its "pants". The screen is of such poor quality and such low resolution that with the contrast bright enough to see what's going on in the dark areas, the light areas are totally over exposed ( and vice-versa ) and there's continuous horizontal banding on the image. The sound is so bad that even with professional quality headphones there's a constant buzzing noise. And, the processor is so old and slow that loading "Facebook" or "Hotmail" involved staring for so long a blank screen that half a dozen times I was sure that the thing had crashed. And with the screen resolution being so poor that it made deciphering "Facebook's" security measures nigh on impossible, I gave up after the first 16 attempts, locking me out of FB on my phone too, an hour later it took another 10 tries to finally get the security words right. And, the OS was so old and clunky that FB couldn't even be displayed properly, and "Hotmail" crashed every time I tried to read a message.

4:30 PM a nurse comes to get me, a couple of the doctors needed to give me a quick examination... a camera ( endoscope ?) up the nose and down the back on my throat. I've had my stomach drained via a tube up the nose, I remember it to this day, vividly, it was FUCKING HORRIBLE. This actually turned out to be not nearly as bad as I had imagined, the endoscope is 'steerable', and the Doctor that performed the examination was so adept at her job that I barely felt a thing throughout the whole procedure.

At 6:30 AM Tuesday, I'm woken to get washed and dressed in gown and stockings ready for surgery. The nurse puts a hospital name tag on my ankle. I already have on on my wrist. I wonder what the hell can go wrong with this operation that they might need to be able to identify two separate halves of my body, what do they do... insert the PEG Tube using an explosive tipped harpoon ?

At 9:00 AM the nurse takes me to the surgical suite. A doctor comes and explains the procedure to me, The PEG tube is "pulled" through the incision in the belly with a wire instrument put down the throat and into the stomach, it's guided to the best location with the aid of an endoscope. I want to go home and hide. He leaves me to wait for my turn...

I'm waiting at one end of the recovery room. This is a surgical production line, there are six, maybe eight operating rooms radiating around the reception area, down one wide long corridor there are probably a dozen recovery beds on wheels lined up. The recovery room is long enough to accommodate well over a dozen beds separated by curtains, along the opposite wall there are eight or so specialty operation tables. Each one with a large heavy looking gray wheeled plinth festooned with foot pedals and levers and topped with deep black vinyl articulated beds.

I'm left to wait, on my own, at one end of this big empty room, alone and cold. I cry to myself some more. I really want to go home.

9:30 a nurse comes to get me, she leads me to the operating room. I stand there, hands trembling, bottom lip quivering, teary eyed. I really-really want to go home now.

Three are 4 'operating' staff and they take turns reassuring me, it 'kind' of works. I hop up onto the table. Thankfully all the drugs & medication will be via the PICC Line, so no needles. A quick squirt of an antibiotic and "pop" a little plastic 'gag' between my teeth. The whole procedure start to finish should only take 15-20 minutes and will be performed while being "heavily" sedated and local anesthetic. In goes the sedative, and I'm lying there thinking this better start working soon because I'm feeling no effects what so ever, I'm starting to think that unless I start to feel drowsy soon I'll have to say something, because I don't think this is working. That it I'm going to have to say something...

I come-to an hour and an half later in the recovery suite. Someone is saying may name, I'm wide a wake and as lucid as I ever am. The procedure was a success with no complications and they would take me back to the ward in half an hour or so. I check, I'm not in two halves.

Over the next 36 hours of recovery I have 4 or 5 episodes of excruciating pain, groaning out loud, fever, cold sweats, crippling stomach cramps, gasping for breath... The pain medication helps, but I keep asking for it during and after the attacks, and not at their first onslaught. They only last 5 to 10 minutes but their aftermath lasts well over an hour. I'll get the hang of it.

During Wednesday 22nd I have a stream of visitors, a dietition, nurses, a couple of doctors, a nurse to show me how to clean and flush "Tubie", a nurse to discuss pain management, nurses just popping in to see how I'm doing and not last and by no means least my very good dear friend John Behetts, who I haven't seen for years and who had read something that Jo had posted on FB and who I was delighted to see again. One of the doctors tells me that during the operation the team noticed that my oesophagus was looking a little inflamed, raw & tender, a classic symptom of either stomach ulcers or acid indigestion, and that they could see no evidence of ulcers. I would be placed on a six week course of medication to take care of it. I explained that one of my side effects from Chemo was indigestion and we agreed that that was almost certainly the cause.

Everyone on the Esther ward has been so very lovely, not just for taking care of me, but in the way in which they all took care of me. I have had two nurses specifically assigned to my care, I'm embarrassed to say I can't remember their names but well over half a dozen other that were regularly attending to me. 

One of my visitors that afternoon was a member of the surgical team, doing a follow up. He inspected the "wound' and was happy with what he saw, clean pink healthy no sign of any soreness or infection. As a parting measure he would just "release" the tube slightly, and give it a little "turn". It really fucking hurt, and off he went. The subsequent pain was so bad that I had to be given, in addition to the pain killers that I was already on, morphine. 

An hour or two later I was discharged from the Esther ward, and off for a consultation downstairs in the Oncology Outpatients Clinic.