My
last blog was quite a while ago now, and I'm glad to report that things
have improved greatly since! During my last few days in hospital it was
a bit of a struggle. I was still spiking the odd temperature for the
first few nights, so was still on antibiotics. Nausea was still an
ongoing issue, though was improving and being better controlled by the
antisickness over the course of the week. My taste was still the biggest
problem, however. I was starving, and weak and fatigued from not only
the chemo and radiotherapy I'd had but also because I simply wasn't
getting enough calories in me. For a week or so all I could taste that
actually tasted as it was supposed to was raspberry flavoured things. So
I was on raspberry Fortisips (a high calorie nutritional supplement
especially designed for this situation), raspberry jelly, and vanilla or
strawberry ice cream wasn't too bad. But other than that, everything
tasted fairly foul. And what was worse was that it seemed to change on
an almost hourly basis. They do say that your sweet tastebuds seem to
get back to work first, but it seemed like the rest were taking forever!
I was also pretty exhausted for this week. Although I'd had a lot of
bed rest in CCU, it wasn't proper rest and it had taken its toll - I
slept, a lot, with the afternoon/evenings being the only time I could
really do anything. I desperately was trying to do some physio during
this time too as my body looked like it was made with match sticks after
all the bed rest I'd had. Some nights were really tough and I just
ended up crying, complaining that I wasn't getting anywhere with my
recovery. Cue reality checks from multiple members of staff - Elsa (my
social worker), the nurses and Carla (the physio). They all reminded me
that not a week ago I had been in an induced coma and had only been out
of CCU a few days! I had to let my body recover - but you know me,
wanting to fly before I can crawl, as Phil said.
Anyway,
I got discharged on 25th September - a small miracle considering where
I'd been only a week before! But I couldn't wait to get home to start on
my recovery properly - there is only so much you can acheive in
hospital. Within a few days of being at home I was able to eat a lot
better, even managing a small roast dinner on the Sunday I was out. I
had an appointment at the Marsden on the Monday with the Transplant
Clinic to check my bloods, etc. and have a catch up with my new Clinical
Nurse Specialist and the doctor. All went well and, despite the
enormous amount of drugs I'm still currently taking, managed to get home
in time for dinner. That Wednesday, however, I spiked a temperature of
38 for a couple of hours in just one of my ears, annoyingly. I phoned
the TCT and they told me - yes, I should in fact go to my local A&E
and have some IV antibiotics, much to my dismay.
So,
I ended up in Maidstone A&E that afternoon with poor Phil having to
take me before starting his night shift. The receptionist was
brilliant, phoned through that I was there and put me in a side room. 40
minutes later, however, I still hadn't been seen - the receptionist was
livid. And when I did get seen, I now didn't have a temperature -
great. That didn't stop them from taking blood cultures, bloods, and
making me have a chest xray though - standard infection procedure. I was
then moved to the majors A&E ward and put in a side room, and
desperately tried to get hold of the Marsden to see if they had a bed
for me. They didn't. And Maidstone were terrifying me slightly with
their apparent lack of knowledge on Stem Cell Transplants (which is fair
enough, they're only a general hospital at the end of the day). But
either way, I knew I'd be happier and better cared for at the Marsden. I
ended up staying on the UMAU ward until Saturday morning. The
haematology doctors only first appeared to visit me on the Friday, as
they apparently 'weren't aware I was in' - even though my dad had been
up to the haematology ward and informed them on the Wednesday. They were
brilliant once I was seen by them but the communication before that was
an utter shambles. It's at times like that when you really see how much
strain the NHS is under. That and when you can't have toast on a
Saturday morning and just have to have bread because there's too few
people to serve the breakfasts so they don't have the time :/ quite
bizarre - I would have done it myself if they'd showed me where the
toaster was!
Anyway,
the Marsden finally had a bed for me on Bud East that Saturday and
within 5 minutes of the ward sister at Maidstone telling me, the
hospital transport arrived (small miracle!) and whisked me off! I hadn't
spiked my entire time at Maidstone, so the Marsden got me straight onto
oral antibiotics and discharged me the next day - result! Especially,
when Maidstone wanted to keep me in until the Monday on IVs at the very
least! Since I'd been in the Marsden and had my bloods redone, they even
let me wait until the Thursday before having to go back to be seen at
the Transplant Clinic, which was very kind of them! As my appetite and
taste was still improving each day, I couldn't wait to get back to home-cooked food!
That
following week was Dad's birthday, and despite going down with man flu,
he still managed to get very excited about his new ice cream maker and
sandwich toastie maker! Lot and Dad also went off to see Michael
McIntyre on the Saturday, as I'd bought tickets but wasn't able to go as
I still have to be careful around large crowds of people/public
transport/ill people/children/pets/anyone who may have chicken pox or
shingles etc etc. I'm not entirely sure it was their cup of tea but they
said they enjoyed it, and very kindly bought me and Phil tour tshirts. I
have also tried out my new snack maker, which was a lovely birthday present from my Grandparents, and made some yummy mini doughnuts!
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| Mini Doughnuts |
This
last week has involved another trip up to the Marsden for the Monday
Transplant Clinic. I saw Celina and had a good catch up with her too,
which was really lovely, as well as a few other inpatients! My blood and
bone marrow results are all currently looking good though! They test my
blood and bone marrow to check how much is being produced by my donor
stem cells vs my own, so ideally you want to be 100% donor after
transplant - which I currently am! And the tests for leukaemia and MRD
from my bone marrow are all negative! Woop! I have another check for all
this at my 3 months post transplant, which is 16th November (can't
believe how quickly that has come about!). At that point they will
decide if they want to restart me on the intrathecal chemotherapy as a
maintenance precaution. But at the moment, touch wood, everything is
looking good.
At
3 months post transplant they also start to wean you off the
immunosuppressants, very slowly, so I should have that to look forward
to. I did have some Graft vs Host Disease - skin and guts - post
transplant, but this has settled down with the immunosuppressants.
Obviously though as they start to wean me off them this could re-occur.
And the chronic fatigue is an ongoing issue too. Apparently it's not
like coming off chemo where you just keep improving, it more waxes and wanes. So one month I could feel a lot better and then I could feel rubbish all over again.
I
was also very kindly nominated by my Clic Sargent Social Worker for an
'Astonishing Achievement' award for a university/higher education level
young adult at the UK Youth Achievement Awards, which to my amazement I
won! I wasn't able to attend the actual event unfortunately, as it was
the day after I was discharged after my transplant, but I very kindly
got some goodies and my little trophy and certificate still!
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| My Award from the Youth Achievement Awards |
My
main aim over the next few months is to keep on it with my recovery -
keep my physio going and my calorie intake up! And I'm looking at
undertaking a certificate in business (or similar) to keep my brain
going and top my CV up, as well as cracking on with the rest of my research project and going over my vet stuff.
I'm planning on getting a job, if I can manage it, in the new year, so
this will help with my applications hopefully, as well as, supporting my
vet work too. We get some insight into the business side of things on
the RVC course, and what we do get is quite good, but there's not nearly
as much as I would like. So, I figure I may as well use the time I have
now wisely and save myself some hassle later.
This
week I've also had a lovely couple of days out. I went with Phil to
Ashford for a bit of shopping and lunch yesterday, which was great - I
had a yummy Chicken Ramen in Wagamamas - just what you need on a
miserable Autumn day to warm you up! And today, Grace very kindly made the
long trek from Ipswich to Kent to visit me - we went into Maidstone to
close our joint account (end of an era!) and had a very nice lunch in
Zizzis, where we both ate copious amounts of pizza and pudding! Was sooo
nice to catch up! Have missed my old housemate a lot! And a massive
thank you to her too for my gorgeous birthday pressies!! Must catch up
again soon!
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| Yummy Wagamamas Lunch with Phil :) |
Tomorrow, provided I'm not too exhausted from this week's events and the weather's not too foul, Lot and I are planning on going pumpkin picking! So, hope you all have a lovely few weeks and I shall update you all again soon! I also intend to start my long list of people to catch up with, so please bear with me, and I hope to see some of you very soon!
Much love to you all! xxx
