My History

I've been wanting to write a blog about my experiences for a while, but never did get around to it.
I've finally decided to sit down and sort it all out, so i'll start at the beginning, and add some blog entries from my diary.
Apologies if some entries are long, and also written in different tenses - it depends when I actually wrote them!

Saturday, 29 January 2011

Days -5 to 0 to +3

Not much happening at first, just Fludarabin chemo, and seeing the doctor daily.
Allowed out of room to have a walk as bloods have not dropped too low yet.

Day -2
Malphelan chemo + Mum and Mike visited.

Day -1
Campath chemo, gave me a rash. Sickness and feeling grotty, not been eating much at all for a few days, but managed a microwave pizza and a yoghurt!

Day 0
Woke up sick, lots of anti-sickness. Dozed all day.
Shelley and Mark visited most of the day.
Got Stem Cells around tea time - very uneventful!
Had 2 bags of blood as low HB.
Mum came and stayed over.

Day +1
New syringe driver for sickness as other had made my arm sore.
Lots of anti-sickness.
Mum here.

Day +2
New syringe driver in tummy as both arms now sore.
Got up about 3pm, had a shower and watched a bit of TV. Managed 1/2 bowl of soup.
First day for a few days that i've felt a bit more normal.
Had syringe driver taken off at tea time, as it keeps 'occluding'.
Tummy a bit odd looking/sore where it was, so prob for the best. Both arms red and sore from it.

Day +3
Slept a bit better last night. Arms still sore where driver was.
Ate breakfast and up at about 10am, feeling a little better.
Mum and Mike visited for a few hours.
Still feeling a little sick, but better than I have been.
Been having a funny feeling in my face, like pins and needles, so nurse did a blood test and it came back I was lacking Magnesium, so put on a 2 hour drip to help counter the effects.

Have been getting blood results every day, so here they are from Monday onwards;
HB - 8.2
Platelets - 300
White - 3.4
Neutrophils - 3.3

HB - 7.5
Platelets - 262
White - 2.0
Neutrophils - 2.0

HB - 7.6
Platelets - 250
White - 3.0
Neutrophils - 2.9

HB - 9.5
Platelets - 250
White - 4.0
Neutrophils - 4.0

HB - 9.7
Platelets - 154
White - 1.7
Neutrophils - 1.7

HB - 9.6
Platelets - 140
White - 0.6
Neutrophils - 0.6

Thursday, 20 January 2011

Day -6

Didn’t sleep till around 3am after a bit of a wobble of emotions, then woken up at 7:30 for obs and bloods, although the nurse brought me a cup of tea to make up for it!
Was back asleep by around 8am, and slept until 10am, and got a cup of tea, toast and a newspaper brought to me!
Struggled with my medication as usual – another panic attack, I have a feeling there’s going to be a lot of those.
Have had a [cold] shower, got dressed into jogging bottoms and a t-shirt. Room has been cleaned and bedding changed, and Sandra the lady who cleaned my room has been a star and chased up a few things for me, got me a blanket for my bed and a heater for the room, and a few bits I needed in the bathroom. Still lots to chase up, but I’m getting there.
Feeling rather isolated and anxious, and hoping these feelings will go, but I’m not sure they will. I have a feeling I will actually lose my sanity!

12:20pm – wobble time. Been told to take my piercings out, and my engagement ring off. Strangely it all upsets me. Doctor said I could have my ring on a chain round my neck, but I’ve always been told I can’t wear chains when I have a Hickman line. So leaving that on my finger until I start to retain fluid and swell up. Taking my piercings out is hard enough (had them for so long, and they are a part of me), but my ring means too much to take off unless I have to.
So my ears are now full of big holes, and nothing to fill them. I know my health is more important, but altering something that is a part of your life is hard.

16:25pm – my eyes are so heavy and my mind a bloody mess. It’s hard to see a way through all this to the end when you can’t even see the next hour. I knew this would be hard, but is it supposed to be so emotionally hard so early into it?
I’m so restless yet can’t do anything about it apart from pace up and down. I tried watching TV but there was nothing interesting on. I tried reading but I’m not seeing the words or taking anything in.
I don’t want to eat or drink, but I know I’ve got to force myself.
I haven’t stopped shaking since I came in, and am prone to bursting into tears for no reason.

HB - 9.2
White - 3.1
[Neutrophils - 2.1]
Platelets - 334

Wednesday, 19 January 2011

Day -7

So we arrived just before 2pm, and got shown to my room – not a bad size, with a small but decent quality TV (with freeview and a DVD player), a couple of chairs for visitors, on-suite/wet room (do I make it sound posh?), ‘clean’ and ‘dirty’ hatches for things coming in and out of the room, and also a separate room that people will use to come in and out of my room, where they will wash their hands and apron up before entering.

Unpacked (my 9 pairs of PJs) and put everything in its new ‘home’, and then did a lot of sitting and waiting – but we’re used to that!

I was weighed (56.2kg), had my obs done (blood pressure slightly low as always), bloods taken, had an ECG and an x-ray, did MRSA swabs, and gave ‘samples’.
Obs will be done every 4 hours – 2am, 6am, 10am, 2pm, 6pm, 10pm (approx).

Did a lot more sitting around, ate tea, and finally my first chemo came (Fludarabine) along with a blood thinning injection, plus the nurse and lots of paper work.
I got given a plan of the next 108 days – today is Day -7 [and counting?!], and asked a million and one questions – and got some answers!

10:30pm and a panic attack later [drugs related, as usual] I’ve just got the password for the internet, but I still don’t know if we have been allocated any accommodation for my visitors.
I keep asking, but now because of the time, it won’t be until tomorrow that I find out – thats if the night staff remember to pass the info onto the morning staff......

Tuesday, 11 January 2011

Where I am up to

I had an appointment on 4th January with Dr Bloor to discuss and start to finalise things. Mike came with me for support, and we both had a few questions.
My bloods/temp/blood pressure came back fine which is great, as I'd had a temperature the night before, and I was a bit worried I was going to need antibiotics, or a transfusion or something!
We sat in with Dr Bloor, and another Nurse on the Haematology/Transplant Team. Dr Bloor just asked a few questions about my last chemo, asked if I still wanted to go ahead with the transplant, but said he already knew the answer! He said there was no point discussing risks etc any further, as I have been told everything there is to know, and I had clearly made up my mind.
I told him when Shelleys appointment was (in a week), and he told me to go back the day after her appointment to finalise everything, and sign consent forms etc.

The Nurse asked Mike and I if we wanted to see the ward, and of course we agreed! I think it's better to be prepared!
She gave me a booklet that contains some useful info - info about the ward, protocols, what staff are on there, visiting times etc, diet sheet, exercises to do.
Then she took us to the ward and walked us down the corridor past the 18 rooms used for transplants.
There are 6 rooms for donor transplants, and these differ as they have high pressure air filters. To get into each of these 6 rooms people must also go through a seperate room to wash their hands.
These rooms also have 'hatches' for clean/dirty (in/out) items.

I was told in my first week there whilst I have chemo (one that isn't as strong as the usual 'BEAM) called FCM (or maybe it's FMC!) I won't be confined to my room - which is great. At least that will get me used to being there a bit better! I will be able to walk about the hospital/go to the shop etc!
Once I receive the Stem Cells is when I will be confined to my room!

Shelley had her appointment today; her blood pressure has come down, and she has lost some weight, and has been given the go ahead for the Stem Cell Harvest.
I am looking to be admitted around 19th January (I will find out for definite tomorrow), and Shelley will be going in on 25th for her Harvest. I will then get her Cells the same day, or the day after!

One down side is that I will be in the hospital for my Birthday...but's only one out of a lot more isn't it!

So thats all I can really write for now. I have a feeling the next week will pass slowly, even though I wish it would hurry up, as I just want to get in there and get this treatment started!