The Swallows Australian Edition Magazine

Life with a feeding tube
- Rob and Lynne
Humphries
When I first had the tube and I left hospital, I
was given a large amount of food, a box of big
syringes that I had never seen before and the
pump machine. I was sent home and told,
“Give us a call if you have any trouble.” After
the shock of coming home with a box of food
and all the attachments, you develop a routine
that works for you. Especially the rate of feed
and how much you have during the day.
I have a back pack for food. I have a pump. I
like to be mobile, so I put my pump in a back
pack. I have learnt I have to flush the tube out
with water, or the formula will set like cement
and I will have a trip to the hospital. I flush the
tube with water slowly. If go too fast, it feels like
I am filling up with water. I tend to have two
thirds of a bottle of water every two hours. For
somebody else, that might be too much water.
It is important for professionals to realise that
tube feeding is not just about equipment and
formula and syringes. It is about people’s
everyday lives and it should not just revolve
around how many kilojoules or how much
protein we are getting. It needs to fit in with our
lives and be individualised.
When I first came out of hospital it was like
hitting a brick wall. Being involved with the
Scouts has helped me. They were my support.
I didn’t know how I would react when people
were sitting in front of me with a nice meal. I
was looking at food but I couldn’t have it. It was
a nightmare. It took a long time to adjust to
that. Even now I still have issues. I just feel like
walking away and having a few tears.
Sometimes I just walk away and suck it up and
come back as if nothing has happened.
In the early days my surgeon gave me some
good advice. He asked me to stop looking
over my shoulder and asking, “Why did this
happen to me?” He told me, “You have a wife,
three sons and your future lies with them.” That
was 16 years ago and in that time I have seen
my sons grow up. I have seen my eldest son
get married and have his first daughter. I’ve
been overseas with Lynne.
Here are some comments from my wife, Lynne
who is my great support: “We don’t go out to
dinner, like a restaurant, as much as we used
to. We still see our friends. We’ll go and have
dinner at their place. They are aware of what
has happened, so Rob just brings his own
food. Rob is a Scout Leader. He shows the
children his syringe. He has a good sense of
humour. That has really helped him through.
The person going through it needs support.
And the carer is there to give the support. You
work through it together. I’d say to anyone, do
ask lots of questions if you are unsure. Rob is
a great example of someone who has faced a
lot of challenges. It hasn’t really stopped us.
We’ve just modified our lives. You’ve got to
think, don’t let it get you down, because there
is always somebody out there that is worse off.
You’ve got to keep going.”
See NSW Agency for Clinical Innovation for
Rob’s Story on video in several languages.
https://www.aci.health.nsw.gov.au
“It hasn’t really stopped
us. We’ve just modified
our lives.”