Day 37-38 Limbo

Aaarrggggh, well that’s how I’d planned to start this post, but this morning things have changed. I was initially due to have my intrathecal injection on Monday, but it was rescheduled to Tuesday. By Wednesday at 15:30 having still had no news, I was starting to get a little frustrated. More specifically due to the fact that I’d been told I could go home for a couple of days while my blood counts are still high. Every day after chemo, your blood counts drop so by Wednesday I was starting to feel like I wouldn’t be able to go home at all!

The procedure

The other hurdle to my being fit for discharge was illness and specifically having a headache after my intrathecal (IT) chemo. I had been told that they would use a thinner needle this time and allow me to lie down for longer afterwards (4 hours) in order to minimise the risk of a returning headache. During the procedure, the doctor struggled to find the correct location. She hit the bone at least twice (which was quite uncomfortable) and she also reportedly bent a needle.

As the anaesthetic started to wear off, my back started to stiffen up and was quite painful. I was a little nervous of this triggering the headaches. On going to the bathroom to brush my teeth, I became a little dizzy and had to dive back on the bed to sleep for a bit.

The student nurse brought round my blood results for me which didn’t make great reading and I was a little concerned about my prospects.

Day of release

This morning, during my shower break, I did a couple of stretches and wore myself out but apart from a mild dull ache, my headache has subsided. When the doctor reviewed my blood results they’d actually come up a little thanks to the lenograstim I’d had the night before.

I thought I’d ask for a bit more detail about the results for reference:

  • Haemoglobin (HB) these are a type of white blood cell.
  • White blood count (WBC) this is a general count of cells.
  • Platelets (Plt) these are blood cells which help clotting.
  • Neutrophils (Neut) making 70-80% of white blood cells they are a good indicator of a healthy immune system.

Here are the ‘normal’ and ‘threshold’ ranges for each noting that everyone is different and the doctor would normally find out a baseline normal level for the patient along with other contributing health factors to help determine what the safe levels should be.

Haemoglobin (HB)

normal: 135-180, threshold: 70-90 depending on age and health.

My counts: 28th – 96, 29th – 97

The doctor said that they don’t pay much attention to these levels.

White Blood Counts (WBC)

normal: 4-11, threshold: below 4 is when they start to be concerned, but depending on health some people can tolerate lower levels.

My counts: 28th – 1.2, 29th – 2.5

Platelets (Plt)

normal: 150-400, threshold: 10-20 or under 100

My counts: 28th – 134, 29th – 102

I found this quite interesting; I noticed from the above that you have a lot more platelets than you need for daily life, but the doctor said you need high amounts if you’re having surgery or are in an accident. For example a count of between 10-20 would mean you start getting nose bleeds and bruising, below 100 you’d struggle to heal from a cut on the head and you need 200 or more to survive surgery. They tend to apply a transfusion if these levels get towards the 20s.

Neutraphils (Neut)

normal: 1.9-7.5, threshold: 0.5 (neutropenia)

My counts: 28th – 1.0, 29th – 2.3

I’m currently anaemic and have a reduced immune system, but I’m within safe thresholds for going home. I will also have another Lenograstim injection before I leave which will help give my bone marrow a boost.

Advertisements

Day 34-36 Chemotherapy

I’m on day 6 of phase 2 chemo which is also day 36 of my treatment. I’m due to have another intrathecal injection today which, having just got over the headache from last time, I’m not looking forward to.  I am, however now unplugged from the pumps and therefore feel a familiar sense of relief.

Day 34 & 35 treatment

The treatment for these past 2 days has followed the same course, frustratingly, due to the length of the courses (and that for some inexplicable reason, they can’t start till midday) they have been running through the night. This means 2 things:

  1. Not much sleep (lots of interruptions)
  2. Regular toilet breaks (due to the volume of fluid absorbed)

The chemicals for both days were as follows:

etoposide – 120mg in 500ml of fluid across a 1 hour course

ifosfamide (+Mesna) – 2900 (+800)mg in 1000ml over 1 hour

Mesna – 2400mg in 1000ml over 12 hours

Day 36 treatment

then finally today I’ll have Methotrexate applied intrathecally (into my spinal fluid) – as far as I’m aware, that’s it for a few days.

My neutrophils will start to drop over the next couple of days (neutropenia is usually expected between day 7-10) and to counteract this, I’ll be given injections of a drug called lenograstim which helps to stimulate the bone marrow (where blood cells are made)

I’m also being give another injection each day which helps to thin the blood and prevent blood clots. It’s supposed to go into my stomach, but it hurts when they put it there so I’ve been asking the nurses to administer into my arm (apparently into the subcutaneous tissue under my skin).

How do I feel?

honestly, I’ve had worse hangovers but I feel fairly grotty. A little disorientated and my brain is feeling lazy- I can’t beat my ipad at chess any more! I sometimes get the feeling of sickness but it goes; I think the anti sickness drugs are working.

Green maple leaf
Green maple leaf

If I get up in the night I get quite dizzy and my blood is taking its time to get back into my brain. I nearly fainted the other night and have therefore have been classed as a falling risk hence the award of green maple leaf. I have been advised to sit on the edge of the bed for a few minutes before getting up, this seems to help although doesn’t half make me feel like an old man.

liz said it’s good practice- thinning hair, unsteady balance, aching joints, unreliable bowels… Can’t wait to be young again!