Hello, my name is Hannah. I was diagnosed
with Hodgkin lymphoma in July 2014.
Initially, advised that I was stage 2
Hodgkin lymphoma and that i would need
4 cycles of ABVD treatment and upon
completion of that, i should
be put me into remission.
Following the cycles of ABVD and the
PET scan that followed very quickly afterwards
the scan highlighted disease
within my chest area.
Initially, I was told that I needed 6 months of treatment
and then to find that it's not worked was
fairly emotional. It was quite a roller-coaster.
Every medical appointment
I went to, I found out new bits of information.
Also different questions, lots of uncertainty.
But the one
thing that we weren't sure about was
whether I needed radiotherapy,
to get rid of whatever was left, or
whether it was a new growth and
radiotherapy wouldn't work.
After about an 8-week period of
waiting to see what happened,
it's fairly apparent, due to new lumps
appearing within my neck area, where my
original highlighted area was,
that we've got new disease.
This opened up a whole new kind
of worms in terms of different treatment
plans and different options. At that
point, stem cell transplants were
thrown into the mix. An allo
transplant was discussed and lots of
statistics and as a result also an awful
lot of confusion. Through time,
we came to realize that I
needed 2 treatments of chemotherapy,
called ESHAP, which involved a 5-day
admission into the hospital with a
couple of weeks at home in between and
then another 5 days. That was very
critical for me, if that was
successful then i would go down the
route of a stem cell transplant using my
own cells. If that was unsuccessful,
then we need to look at the options in
terms of donors stem cell transplant.
We identified following my ESHAP
chemotherapy that actually that had been
successful and I had got into remission.
As a result, we did proceed to stem cell
transplant using my own stem cells.
In preparation for going into hospital,
I made sure that I've got lots of clean pajamas,
lots of soft clothes and made sure that
I was comfortable and because reading up
it kind of implied that you would swell up.
You want to make sure that
you're comfortable throughout the whole
process. I took lots of digital devices,
Kindles, iPads, books and
things to do, puzzles and notebooks.
One thing that was quite
nice, whenever my parents
visited, they brought me a different picture
of a memory that happened probably in
the previous few years of our life and
actually it was quite nice it gave us
something to talk about and something to
focus on. The first week is all about
getting ready ready for your stem cell
transplant, so it's actually more
chemotherapy. I was in the fortunate
position that the hospital I was staying in
allowed me to walk around the
hospital for the first few days of
being an inpatient.
I made the decision to do that later on.
I knew the hospital was quiet which would reduce
my risk of getting an infection.
I enjoyed sitting in the hospital
garden in the early evening. Not awful lot
of people around, but just a bit of fresh air.
In reality, once you
move from the chemotherapy at the
initial part, mine was BEAM, but I'm
sure there are several different types,
once you move on from that to
proceed to stem cell transplant. To be
honest, activities and actually staying
within the room really didn't bother me.
I was very fortunate; the room I had
was fairly new, had its own bathroom,
had a good size TV, so TV was on an awful lot.
My BEAM chemotherapy had quite
adverse side effects for me and
throughout my whole cancer journey
nausea wasn't really a big one for me,
but I was fairly nauseous and throughout
the initial stages of the preparation
treatment for the stem cell transplant.
The actual stem cell transplant
also caused me quite severe upset stomach.
I found that actually maybe
taking moist wipes in with you might
help, they certainly assisted me. That
might be a preparation tool that might
be quite useful. I also made sure
that I had things to suck on that
were cold. My mouth went very dry
and I ended up with
something called mucositis. I didn't have
any saliva and that made swallowing
and drinking very very difficult.
It's the only diet that I've ever known
where you don't drink anything on,
don't eat an awful lot on and still
gain weight, my instance. But i do know
other people don't drink an awful lot,
don't eat an awful and actually
do lose some weight. That was one
bonus I was looking for that didn't
really happen. In terms of other side
effects, I found that ice lollies were
quite good, I think the most hospitals
provide those, and my family
brought some in, so that I could actually
got an ice lolly or ice cubes, so
that you could suck on those and
refresh the mouth. I found cold foods
particularly good, eg melon or
pineapple, because they were juicy and
refreshing. They helped make me feel like I wanted to eat something.
I'm now 12 months post transplant and
I'm back at work full-time.
In reality, I pushed to go back to
work within 6 months post-transplant.
In hindsight, I probably
should've waited a little bit longer.
I'm working full-time, but to put that
into context, I started in January,
we're now in November, I started on 4 hours a week.
It was a very, very slow built.
I'm very fortunate that my
employer has supported me through that
transition, but I had had 18 months off
work prior to going back.
Life's good.
I got the hair back. It's a bit
darker and a little bit curlier than it
was before when it was blond and straight.
I haven't quite lost the
weight that I was hoping to have lost that
I gained throughout this
journey. I feel well I've
got good skin and I'm starting to look
like me again. I'm doing things that
I'm enjoying, but I'm also making the
most of opportunities that present
themselves. Anybody that's got
concerns about what's going to happen
or what's happening to them currently, stay
positive, stay focused. You can do
this. I appreciate it's not easy, but with
a bit of help... Engage with people
that have gone through a similar
journey. Watching this video is a way.
The Lymphoma Association also
have support groups, which, initially I
was a little bit reserved about attending,
but I actually found them hugely
beneficial in terms of engaging with
other people that are going on this
journey. They can
provide you with much reassurance but also
maybe answer some of the questions that
you're not quite sure about.
In terms of researching what's going to happen, I guess
we're all different. I quite like to
know the facts and figures and have lots
of questions in preparation when I go to
medical appointments with my consultant.
But I've always found the Lymphoma
Association booklet really useful along
with those from Macmillan or
the NHS. I avoided google.
I think it can add different elements.
Again, we're all different
and you've got to do what's right for
you. But the information and the literature
that's enclosed in the booklets,
particularly about an autologous stem cell transplant
is critical and
understanding actually what's gonna
happen to you and what that treatment
is going to look like, and possibly what
that's going to feel like, it also
details some of the side effects in
terms of what could happen to you.
They may not happen, but everybody again
responds in a slightly different way. But
I think it's a good preparation guide.
It also enables you, before you
go in for your stem cell transplant, to maybe
identify what questions and what
concerns you've got, so
you can discuss that with your team
at your hospital.