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!

Friday, 18 March 2011

Day +14 to now!

Wednesday 9th February (Day +14)
Not a good day, very down and depressed for some reason, and no visitors. Had to have a bag of calcium over night.

HB - 10.3
Platelets - 148
White - 0.3
Neutrophils - 0.3

Thursday 10th February (Day +15)
Not sure exactly what my neutrophils are - doctor said 0.4, Nurse said 0.3, but Doctor said as long as they are 0.5 I can go home tomorrow or Saturday.
Trying not to get my hopes up, but it's hard. All I want is to be at home with Mike. Never missed anyone so much!
Today/tonight is going to drag, and I only hope everything is ok tomorrow.

HB - 10.4
Platelets - 156
White - 0.4
Neutrophils - 0.3/0.4

Friday 11th February (Day +16)
As predicted, it didn't happen. Ended up sleeping to block out disappointment.
Mum came late afternoon as I felt shit

HB - 9.9
Pletelets - 153
White - 0.4
Neutrophils - 0.4

Saturday 12th February (Day +17)
Had a GCSF injection in the hope of raising my white/neutrophil count.

HB - 10.3
Platelets - 157
White - 0.2
Neutrophils - 0.2

Sunday 13th February (Day +18)
My counts are up and I can go home! I was too excited and eager to get out, so I didn't find out any of my actual counts - I didn't care as long as I could get out!
My weight is also coming down and nearly back to normal.
Back on Tuesday for my first blood test.

Tuesday 15th February (Day +20)
Christies for blood test - this is now a weekly thing, and I could also be called back on Fridays depending on my blood count and Ciclosporin level (Anti-rejection drug)

HB - 10.9
Platelets - 139
White - 2.1
Neutrophils - 1.9

Tuesday 22nd February (Day +27)
Going ok, although struggling with taking my tablets, so my Ciclosporin levels are rather low, and I have to up my dose.
Absolutely shattered, and have developed lots of ulcers in my mouth - that bad i'm struggling to eat.

HB - 11.0
Platelets - 182
White - 5.3
Neutrophils - 4.9

Friday 25th February (Day +30)
Mouth so painful, can't eat or drink, struggling to talk. Morphine didn't even work for the pain.
Back to Christies with Mum for a blood test as I had to up my Ciclosporin dose (struggling with the tablets because of my mouth).
John the Nurse Practitioner took swabs from my ulcers, and also put me on a drip for fluids.

Monday 28th February (Day +33)
In for a Bone Marrow Biopsy today, Mark has brought me. Been told that my ulcers are in fact Cold Sores! Yes, Cold sores IN my mouth! Damn painful, have been prescribed yet more drugs on a very high dose to help.
Bone Marrow Biopsy was my most painful yet - the sedation didn't seem to work, and I remember every single second, especailly the painful bits, where I screamed and was apparently heard in the waiting room and blood room!

Tuesday 1st March (Day +34)
Back for normal blood test today, mouth still as painful. Even the staff in the blood room have noticed I'm not my 'normal' self. Struggling to eat and drink, have lost weight, and still finding it hard to talk (bet everyone else is thankful!)
Didn't get my blood results today, but they can't be bad, as doctors don't seem worried.
Phone call in evening about my ciclosporin level - it is still low, so up my dose and go back on Friday for another blood test!

Friday 4th March (Day +37)
Back to Christies for blood test today with Mum.
Didn't go to the hospice yesterday as I was in too much pain, as my mouth is still bad.

Tuesday 8th March (Day +41)
Normal blood tests today, and my mouth has started to improve - I think Saturday was the turning point, I managed to start eating and drinking a little.
I saw Dr Bloor, and he said I am doing exeptionally well. I asked him when I can say if i'm well or not, as people keep asking if the transplant has worked, and it's really hard to explain to people that there isn't a day I can turn round and say "Yes, it's worked", or "No, it's not worked", as it's a lot more complicated than that!
My immune system is still that of a baby, and I have to wait for it to grow, and see if it learns to recognise the cancer cells as bad, and kill them! It's also a long recovery, being on different medications whilst my body learns to fight off bugs/germs that 'normal' people can fight off.
Managed dinner at the Trafford Centre with Melissa, and then we even managed a little walk around (very slowly!).

Wednesday 9th March
Had to take Teagan to the vets today. She has had a small lump on her face for a while, but it seems to have got a lot bigger over the past week or so, and is now noticable when you look at her from the front.
The vets did a fine needle aspiration, but could only get blood from it, so she is booked in tomorrow morning for a general anasthetic and a proper biopsy. The vets said it could be an underlaying infection, or something more sinister.

Thursday 10th March
Dropped Teagan off at the vets, then went off to the Hospice for the day, whilst waiting for the phonecall to say I can pick her up.
Got the phonecall early afternoon, and picked Teagan up just before tea time. She seemed fine (as usual), the vet said she'd been a good girl (also as usual!), her face is a bit swollen and she has 2 stitches.
Back on Tuesday evening for a post-op check, and hopefully the results of the biopsy.
Poor thing is very vocal tonight, and crying a lot, so must be in discomfort as it's not like her to be vocal like this :(

Friday 11th March (Day +44)
Mike and I were being assessed this morning by Social Services for some aids around the house. The lady was due at 10:30, then Mum planned to pick me up at 11:30 to take me to Christies for my blood test.
9:45am Mum phones and tells me she has shingles!! Not good at all! We knew I probably wouldn't be able to see her, but I phoned Christies up to check anyway, and they confirmed what we thought!
By now it was 10:45, the Social Services lady was here, and I had to try and find a lift!
I phoned Mark, but he was obviously working, so didn't answer the phone! I knew Melissa was doing her important uni work, so she was going to be my last call, so I went onto Facebook and sent a message to Shelley!
She phoned me, and luckily she could get out of work to take me down to Christies - but what a drive for her! Lancaster to Leyland, then down to Manchester! But what a life saver she was!
She managed to get to our house in record time, and we managed to get down to Christies in time for my blood test (They have to be done by a certain time, as the Ciclosporin levels get sent off at 2pm).
Before we even got home, John had phoned to say keep my doseage the same for now.

Teagan has a wicked arse today - I think the anasthetic did something to her, she really stinks!

Tuesday 15th March (Day +48)
Back to Christies for my weekly blood test with Melissa!
I saw the doctor who said my Ciclosporin levels are still low, but not to worry. He also checked for the results of my Bone Marrow Biopsy, which luckily were clear, and my bone marrow is producing blood cells (a good thing!!).
My HB was a little low (8.2), but everything else seemed to be good, and he spoke of hopefully removing my central line by day +60, but thats not too far off, so I'm not sure if that will happen that soon, although it would be nice!
I think he noticed my hair is starting to grow back too, but to be honest I think thats the Ciclosporin, as it causes 'excess hair growth', which I have noticed in a few other places (My moustache and beard are coming along nicely!).
Melissa and I then escaped and went for dinner at the Trafford Centre, and I managed another little walk around.
My energy levels are SLOWLY coming back - I know it's still going to be a very long slog, and it's also very bloody frustrating, as I just want to get on with 'normal' life again!

Teagans vet appointment was just before tea. Her face has swollen up so much, and she looks so uncomfortable, but as usual, good behaviour and no complaints!
Unfortunately the news wasn't good - the biopsy has shown that she has T-Cell Lymphoma - which isn't good. It doesn't respond to chemo. The vet said there was more tests they wanted to do with the biopsy sample. I asked how much it was going to cost, as i'm on a very limited budget - they know this, as they know the situation with me being ill.
She told me the cost, but then told me they have a fund, and have agreed that the test will be paid for out of the fund - I got tears in my eyes at this, so very nice of them to help me out at this time.
I asked the dreaded question...'how long'.
Weeks to months was the reply.
The vet then gave Teagan an anti-biotic and an anti-inflammatory injection, and sent us home with 3 days of anti-inflammatory tablets for her face.

I somehow managed to hold myself together at the vets, but broke down at home.

Friday 18th March (Day +51)
The past few nights haven't been good - I'm not coping with the news about Teagan. I can deal with myself being ill, and all the bad news I've had in the past, but I can't seem to deal with this.
The swelling on her face is slowly going down which is good. We're back to the vets on Tuesday for her stitches out, and the hopefully the results of the tests will be back - although i'm not entirely sure what they will reveal.
No hospital today, which is a nice rest, but back on Tuesday morning for my 'usual' blood tests and check-up.

1 comment:

  1. *hugs* Heather.. you've been through so much and been so stoic, it seems incredibly cruel to have to deal with what's happening with Teagan too. :(
    Not for the first time do I wish I had a magic wand I could wave for you.
    You and Teagan are in my thoughts xx