Time Shifts Slowly

A matter of routine. The days morph into weeks. One week down already. A long and slow descent. As my cells die slowly.   Within this room I lie. With four familiar walls. Shuttered window viewpoint. On Autumn world outside. It's a limited life.   Here in isolation. Yet not alone at all. Friends and …

Get the Balance Right

The body is a complex organism. There are many chemical reactions going on inside of us all of the time and we never give it a second thought most of the time. As processes happen others are triggered which compensate and result in a consistent environment which keeps us healthy most of the time. Biologists …

Calm Before The Storm

It's a little weird being here in hospital. Although I am not well (obviously) I am not feeling really ill. So whilst they monitor and measure I remain for now in relatively good health. My neutrophils remain high, so for now my body remains protected from the environment around me. I do know for certain …

Pent Neb

It's time to don the Darth Vader look again. Today I am being given a Pent Neb (short for pentamidine nebuliser). This is a standard precaution following stem cell transplants. The first part of the process involves Salbutamol a drug which open up the airwaves. This lasts about 15 minutes or so. This is followed …

Day 0/1

Today has been busy, after a quieter morning. I managed to get reasonable sleep in spite of regular trips to the loo, due to the diuretics. They were worried I was retaining too much water, but the body is a complex organism and getting the balance is difficult. In recent days they have increased my …

Day Zero – Part 2 (Update)

As ever things are slightly different to expectations. The general guide to this treatment quoted this morning is modified here in Nottingham. The procedure itself will start at 4pm and not 3pm as originally written. I will be given Piriton and Hydrocortisone to prevent any allergic reaction to the DMSO The stem cells will be …

Day Zero

Day zero is the name given to the day of your stem cell transplant. This will happen this afternoon, 48 hours exactly after my chemotherapy took place. The extra day has been to allow my kidney time to flush the Melphalan out of my body, so it won't kill the newly introduced stem cells. I …

Poison Remedy Playlist

A series of tracks from my iTunes on the theme of poison and remedy (incorporating pill disease and cure). It's an eclectic mix ranging from the 80's new wave bands ABC and Depeche Mode , alternative 80's band The Cure (with a suitably titled song In Between Days as I'm between Chemotherapy and Stem Cell …

Noises in the Night

Tick, click, whoooooooo The clock The drip The air filtration unit It's constant, rhythmic noise Not easy to sleep with all this racket Whoooooooo, Tick, Click, Whoooooooo Whoooooooo, Tick, Click, Whoooooooo Whoooooooo, Tick, Click, Whoooooooo Tick The clock marking time Tick Reminding me that it's late Tick Counting the seconds Tick One by one Click …

Ice Pops and Poison

It's a strange thing to sit here as I've just been poisoned for my own good. The chemotherapy has started. Melphalan has been injected and I'm sitting here sucking on an ice pop. I've not had one in years but it's a necessary medical treatment. The purpose is to keep my mouth and gut cool …

Kidney Matters

This afternoon I met with the kidney consultant. His aim was firstly to assess me ahead of any potential chemotherapy/stem cell treatment in order to determine whether I needed dialysis first. Secondly to answer questions about the way forward. There are a number of different scenarios but before I delve into each one the answer …

On My Way

The call came in at 2:15pm. Thankfully It didn't go off this morning in church so at least I got to go. I'm off to Nottingham. The day I have been waiting for for several months has come one day early. It's a two hour journey to Nottingham, but a bed is available and they …

Feeling Messed About

A phone call at 5pm last night has left me feeling a little messed about. The call from my consultant at Nottingham was to inform me that when I go in on Sunday or Monday they will not after all perform the chemotherapy. Instead Renal will look at my kidney to determine whether I will …

Leaving a Bitter Taste in the Mouth

It was in February of this year I first noticed this. At the time I had no idea why. In the months since it has been a constant presence. Sometimes subtle, sometimes overwhelming. At its worst it has induced nausea. In Nairobi, just before the diagnosis of Myeloma it was acute. A bitter, salty, metallic …

The Road Ahead

I came across this video from Myeloma UK. It gives advice about the recovery process from Stem Cell transplant. I found it useful although need for a neutropenic diet is no longer seen as relevant according to the stem cell nurses at Nottingham. https://youtu.be/zIXcGBv7Ryc