Nets/carcinoid Syndrome

The Blind Leading The Blind……

The Monday after Steve’s retina repair surgery we have a busy day ahead.  Steve’s vision is highly compromised and the next weeks recovery is crucial.  Steve gets up and puts in his eye drops, he has three different drops to put in.  I would help, but unfortunately it would more than likely send him back in to the ward.  My fine motor skills are not good.  If I was to attempt to put a drop in his eye , it would probably result in a poke in the eye.  For Steve it’s a stressful enough time without a shaky hand coming at your eye offering to try and get drops in.  Me, it’s time to detach from my feed pump and flush my tube.  Then the usual creams etc.

steve gets the cereal for us and I make the coffee.  Bad move.  I have ‘blank’ moments, between these and the poor coordination I managed to burn my arm.

9.30am there is a familiar knock at the front door.  It’s my nurses.  They are here to do my dressings, check my tube, general well being, etc.  I cannot emphasis enough what a support they are.  At first I wasn’t quite sure about the need for nurses to call in.   However, they have proven their worth on many ocassions; offering help and advice as well as practical treatment.   They are friendly, easy to talk to, skilled and I have confidence in them.   One big bonus is the nurse giving me my lanreotide injection every 21 days at home.  The three to four days before my injection my diahrea gets worse.  When I travelled to the health centre to get my injection there was always the risk of needing to rush to the loo on my travels.  So  I would go prepared rather than be in a blind panic I may shit myself in the car.   The nurse does not just treat me and leave, there’s always time for a quick natter.  Blethering about TV, cars, etc.  They will Chat to Steve, or one of our sons if they are around.  Our lab buddy is especially fond of one particular nurse.  On this day, we are discussing the logistic problem of getting to the hospital this afternoon for my outpatient appointment to discuss how my NG tube is working out.

We have a rest between nurse leaving and going to hospital appointment.  I’m saving my energy and Steve needs to lie down as much as possible to help with the recovery of his eye.

We arrive at the hospital.  The walk from the car to the building is short and no steep hills.  However, Steve finds the walk challenging; the alternating heights of pavement to road is difficult.  Drain covers are awkward, as are the high kerbs and changing surface on entering the hospital.  One bonus was the hospital does have a zebra crossing in the grounds – the large white parallel rectangles give confidence.

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We are in the consultation room with my doctor and dietician.  We report there has been good news since we had our last meeting.  The NG tube and daily ten hour overnight feed has helped keep up my overnight blood glucose levels.  Since I have been on the feed I no longer need to shuffle along the hall during the night on my bottom.  My blood glucose level now tends to be higher than 1.8 and I can manage to get to the bathroom without the fear of passing out.  Pre NG tube I would get to the bathroom – usually shuffling along on my ass, the room was swooming and my through the night snack would include a supply of Glucogel.

We discuss how I have been in general and how we are managing as a family.  The doctor agrees the NG tube is necessary.  My doctor wanted to see what the benefits artificial feeding would be for me.  Now he suggests I get a peg feed fitted surgically.  This means an operation and a general anaesthetic.  I cannot get it fitted endoscopically.  He says that would not be a good idea – it would be going in blind with the possibility of hitting tumours and causing problems.  I am scheduled to meet up with the surgeons and get the surgery within two months.

I will admit I feel fairly apprehensive – having an operation, the surgeons routing around in my tummy and getting the peg fitted.   I’m not always the best after an anaesthetic.  It’s that whole coming around and feeling woozy.  I guess it’s the ‘out if control’ that I don’t like.  Although I do know getting the peg feed should be worth it.  I have faith in my clinicians to make the right call.  Whilst I am bit vain, it will be good to have a less visible to the public feed tube.  Also I’m sure there will be much less chance of me aspirating with the peg.  I’ve only had one real scary time with the NG tube – when I woke up and felt as if I was drowning.  Believe me it wasn’t a pleasant experience.  There has been a few not so good moments – being sick – trying not to wretch.  Let it happen – even though it’s awful, not only can you taste the vomit, and feel it running down your nose, you feel it in the tube too.  When the sickness has stopped, the clammy hands have dried out, time to flush the tube – firstly make sure it’s still in the tummy, check oh level and then flush the tube.  Twenty minutes later and all is well.

This means Steve and I will both have surgery within one month of each other.  Some would say quite a lot to cope with.  For us it will just be another event at the ranch.
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