T Day plus 3 (13th January)

John wrote:

Bad and fitful night’s sleep and woke up with a headache which I can’t seem to get rid of.
Every time I get comfortable I have to move so they can take blood samples or me the cyclosporine, or I have to go to get a cup of tea or something else from the hatchway.

Sue wrote:

We have not explained the port holes yet – anther detail in this hi-tech care regime.

 If someone does not want to go through the whole hand washing and putting on aprons routine, then they pass stuff to John through two small air locked hatchways, which have inside & outside doors and a shelf in between.

In at the top and out at the bottom

T Day plus 2 (12th January)

John wrote:

Another good night’s sleep.
Woken at 5:30 for the cyclosporine

Cyclosporine & a fuzzy John

Still plugged in. Not even going to his private bathroom, can get in the way of the cyclosporine infusion. You have to take it with you!

And later there will be another transfusion, and this evening they promise me more cyclosporine followed by a platelets transfusion. All this to keep my blood good until the stem cells start to get to work and make my bone marrow, and in turn my blood, better.

Sue wrote:

Much relieved that John is in much better spirits.

He tells me he has been able to start reading again – Thank you Steve H for the “Life of Samuel Johnson”.

T Day plus 1 (11th January)

John wrote:

Last night I had a good sleep at last, probably helped by the paracetamol given to me for my temperature of 38.6.

Then woken early for the first of today’s 2 cyclosporine drip. I am to get them morning and evening. I fall asleep while the drip is running, but that seems to be alright.
The doctor visits and tells me they want to try to find the cause of my high temperatures , which seem to be a regular evening occurrence now. He has ordered a chest x-ray for me.
So just as Sue is about to end her visit, the nurse comes in to take me for the x-ray. It’s a wheel chair job. I must also wear a mask over my nose & mouth, presumably to protect me from breathing in anything nasty.

The doctor tells me I am also to receive a blood transfusion, this morning - my first ever. This is to support my red blood cells, which have been wacked on the head by the chemo. He says to have one or more blood transfusions is quite normal following the transplant. When I ask if it is to be group O (my old blood type) or Group B(my new blood type), the answer is “It’s very complicated”.

The doctor tells me that I must be resigned to feel poorly for at least 7 days following the transplant. I am just beginning a long journey and there are significant milestones to look forwards to now

1.    Leaving hospital  in 2 or 3 weeks time

2.    In 3 months when I will no longer be confined to home and hospital visits

3.    In a year when they will be able to tell if the transplant has really worked

Later in the evening I received a second transfusion.

 
Thanks to all those who are reading this blog and sending me encouraging e-mails which I can read once Sue has put the phone on the windowsill.  

Sue wrote:

The Anthony Nolan trust sent John a card. It quite choked me up to read it.

This is in no way a plug for them.
You can see the great things they are doing, besides giving us much hope and encouragement, by visiting to  www.anthonynolan.org

The BIG Day

T Day (10th January) – Transplant Day

John wrote:

So I am in isolation and the big day is here.

And here it is  - roll on the drums - the stem cell transplant.
 

Note the pinky brown , highly distinctive colour – which has an uncanny resemblence to the cup of tea they refused me with my paracetamol a couple of days ago. 

No wonder they call them infusions. Just a slight worry that they have the right bag!

    

 But I should not worry. The nurse tells us, the cells were harvested 2 days ago. Air freighted yesterday. And here is the baggage label as proof

Sue wrote on 26th May
Interesting that 4 months  later my ears pricked up when I heard about a Stem cell courier on the 24th May Radio 4 Saturday Live
Saturday Live.

  

 

 Here is me getting the stem cells (Sue , I‘ve gone all fuzzy again)

 

Fascinating Fact 1 - It seems Germany is champion in the Stem Cell Transplant World Cup because they make  it a legal requirement to register your blood type. So they beat us again. Good job they don't play cricket

Fascinating Fact 2 – Once the transplant has engrafted (medical term) my blood group will be changed from O to B.

Transplant over, it's time to pick up some encouraging e-mails - see that ubiquitous cup of tea on my bed-side table. Always welcome.

I am now really in the depths of the ward.  Sadly it seems like isolation in more ways than one. I have a window in the room, but instead of the garden to look out on as i had on the ward, I now only have a brick wall.  This appears to have compromised receiving texts.  The e-mails can come in, but rather slowly, and only if the phone is balanced on the window sill.

Here is Sue, "dressed to kill", visiting me in my room, my window and my ubiquitous brick wall. Her turn to look fuzzy now.