I have to start this post by saying that I
wish I had taken the time or been forced/encouraged to do a bit more research
about how I would feel post transplant and the recovery process. The past two
months have felt liked I dived into a deep, dark pool with nope hope of finding
the shallow end, treading water for my life! I don’t think I really had any
expectations of how I would feel post transplant but I do think I severely
underestimated just how long it would take me to get back to “normal”. I feel
like I’ve had to rewind my life and relearn the simplest of tasks again, not
just physically but mentally too.
I assumed I would regain my strength and
stamina quickly and easily but I couldn’t have been more wrong. I battle with
extreme fatigue and constantly feel lethargic, in the beginning i found that
simple daily tasks like having a shower left me breathless and exhausted.
Usually when I wake up in the morning I’m very tired, but within an hour or so
my energy levels generally increase and I try and get my day going, for the
first 30 days I found myself spending the majority of my days in bed sleeping
and generally could only manage being up and about for a maximum of 2 hours a
day. I was going through quite a bit of coffee just to try and keep me awake
for a few extra hours during the day but thank goodness I’m able to manage on
my own now.
My first trip in my car was like a driving
lesson gone wrong- my legs were so weak that I battled to use the clutch and I
stalled more times than I could count! Making supper was an enormous challenge
and even opening tins required at least 2 breaks while turning the tin opener
around the circumference of the tin. One morning I couldn’t open my purity
bottle no matter how hard I tried, I eventually threw it in the sink, had a
little cry and waited for our Helper to get to work so that she could open it
for me. I couldn’t swallow anything but soup or purity for the first month and
I needed to have the purity to line my stomach before taking all of my meds.
It’s quite something to feel angry with your body for letting you down, there’s
no worse punishment than feeling helpless and wanting to do something so badly
but not being able to no matter how hard you push yourself. I’ve learnt to be a
bit more patient without myself and often tell myself that I can’t go from zero
to hero overnight, it’s going to take time.
I see my Oncologist weekly so that I can be
physically examined and I have a blood test before my appointment to check my
blood counts for infections. So far my results have been amazing and I haven’t
needed to take any additional antibiotics. I take SO many tablets everyday but
more on this another time. I have been allowed to go to shopping centres and
other public spaces because my blood cell counts have been good but I’m very
careful not to touch handles or hand rails and I always have detol wipes in my
bag to make sure I keep my hands clean, I also try and avoid crowds and public
places during rush hour- germs are scary.
If you can remember back to my last post, I
explained how I suffered really badly from an infection in my oesophagus as
well as terrible mucositis in my throat, swallowing was nearly impossible due
to the pain and this made me so anxious about meal times. I knew that I needed
to get food in to help with my recovery and finally take in the nutrition that
my body so badly needed but every attempt at swallowing was pure agony, purity
and cup of soup became my staples and inbetween I tried to get in as much
Ensure as possible. I still haven’t got much of an appetite but I think my
tastebuds are also still recovering so food still doesn’t taste like much. I
have battled with the diet a little bit just because the foods I do crave are
not on the ”yes” list. Also you have to be so aware of what you’re eating and
make sure that you have things packed for yourself if you go out. I am only
allowed to drink sterile water (boiled in my kettle and cooled) or Oasis water-
ALL other bottled or tap water is out. Here is a picture of my Neutrophenic
diet I’ve had to follow:
I try to be patient with myself but it’s so
frustrating, I see people running past me when I’m walking along and It makes
me so sad, I feel like I’m never going to get there! I have managed the 5km
parkrun (which we walked) on the Promenade here in Durban for the past two weekends
and I loved it, I woke up stiff the next morning and it was SUCH a good
feeling. I’ve also started doing some strength training with Gav’s intern,
Jarrod, at Prime twice a week and it’ll be interesting to see my progress-
hopefully goodbye trembling legs! Jarrod has been pushing me and I feel such
immense pride when I manage to do a certain exercise better or for longer than
the previous session- yay me! I wish I hadn’t taken my healthy, fit, strong
body for granted before I was diagnosed and I wish I had pushed myself further
in terms of fitness, no time like the present I guess!
The Doctors warn you
that you will begin to feel the enormity of what has happened to you as you get
stronger post transplant and I think I have just entered this stage now. Some
days I feel so sad about the time and experiences that I’ve lost out on but I try
and quickly push those thoughts out of my mind and replace them with things I can’t
wait to do and achieve. I feel so incredibly lucky to have been given a second
chance at life- no words justify how incredible this miracle is!
Promenade walk
So where to from here? Am I cured?
On Tuesday next week I will have another
PET scan to check whether any residual disease is present or if I’m in
remission- scary! There is no other way of knowing whether a transplant is
successful or not. A very important benchmark in the recovery of transplant
patients is the date 100 days after the patient’s transplant, for this we’ll
fly up to Pretoria to meet with my Haematologist to discuss my scan results
among other things. I will also then be allowed to go back to a normal diet if
all is clear!
Always appreciate your body and all that it
does for you- you are so incredibly blessed to be able to wake up each morning
and to do whatever you wish without assistance or struggle. Push yourself to do
something challenging!
xxx
