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.

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!

Day 30 to 33 chemotherapy

Having completed round 1 the ‘R-CODOX-M’ part, I think I was lulled into a false sense of security thinking that the ‘R-IVAC’ cycle would comprise fewer chemicals. It seems that although infused over a shorter period of time, there is a greater volume of therapy.

Day 30 last day home

On Wednesday, I spent the day chilling out and sorting out my things ready to take to the hospital. In the usual convenient manner, having been told to call the ward at 14:00 to confirm arrival time on Thursday, they told me to get into Worcester by 16:00 which didn’t give me much time to arrange a lift and prepare myself for the journey.

on arrival, I went through the usual checking in procedure; general questions, next of kin, any power of attorney, weight, height, blood test, OBS, wrist band, MRSA swab, and logging of belongings. I was then allowed home for the evening although needed to be back in by 8.

Day 31 Chemotherapy

The journey in triggered my headache, so returning to my bed I spent the first part of the morning asleep or resting through the coughs beeps and whirrings of my new room mates.

The chemo started again at 12:00

Cytarabine 3900mg over 3 hours, followed by

Etoposide 120mg over 1 hour

ifosfamide (with Mesna) 2900 (+800)mg over 1 hour

mesna 2400mg over 12 hours

Cytarabine 3900mg over 3 hours

As you can see, this meant that my sleep was interrupted by fluid changes as well as (due to the volume of saline included with the above: 4500ml) regular toilet breaks. This meant that the following morning I was fairly tired.

Day 32 Chemotherapy

The onslaught continued and I spent most of my waking hours trying to sleep:

Cytarabine 3900mg over 6 hours

Etoposide 120mg over 1 hour

Rituximab 375mg over 3 hours

ifosfamide (with Mesna) 2900 (+800)mg over 1 hour

Mesna 2400mg over 12 hours

Cytarabine 3900mg over 3 hours

Day 33 Chemotherapy

I’ve had a few hours break this morning which was a quite a relief from being plugged into the pump.

The therapy is due to start after lunch as follows:

Etoposide 120mg over 1 hour

ifosfamide (with mesna) 2900 (+800)mg over 1 hour

Mesna 2400mg over 12 hours

How do I feel?

My main symptom is lethargy. This could be due to interrupted sleep although I expect some of the way I feel is due to the chemicals floating round my body. My headache has started to ease and although it still persists along with stiff neck and shoulders, it is much more manageable now.

In addition to the standard side effects which seem to coincide with all of the chemotherapy drugs (bruising/bleeding, anemia, sickness, diarrhoea, sore mouth, hair loss) the current round of treatment has  the additional symptoms of eye problems, skin changes, numb hands and feet.

To minimise risk of eye problems, I’m taking medicated eye drops which are applied every 3 hours.

the fact sheet for Mesna under ‘why is Mesna given’ states the following: “if you are given ifosfamide or cyclophosphamide chemotherapy, you may get bleeding in your urine. Both drugs can cause irritation of the bladder lining. Mesna helps prevent this by protecting the lining.” Thankfully, the Mesna seems to have done its job!

my skin has become very dry especially on my hands and face.

I’m also experiencing numb hands and feet, but otherwise, my symptoms are so far mild.

With regard to hair loss, this has slowed down somewhat but I have noticed that my beard hair has been coming out in the shower. In fact I  think I prefer wiping my beard off to shaving so I think I’ll not bother shaving for now!

Days 24-29 recovery period

I’ve spent a few days at home now and adjusting to reality has become more difficult than I thought. Hindered primarily by my headache which while improving, is still a frustrating brake on my daily activities.

Day 24 – release day

I was collected from the hospital by my Dad who had to wait for a couple of hours while the nurses collated my notes and bags of tablets. Initially I was told that my consultant would like to see me before I left but this didn’t happen. Incidentally, I haven’t seen her since the 23rd December and have only been in contact with the on call doctors. I think therefore that she has been avoiding me as she knows that I will have built up a huge list of questions for her.

On the way home, I managed to mitigate my headache slightly by folding the chair back as far as it would go. It gave the journey an interesting viewing angle!

Having climbed the stairs for the first time in a while, I crashed out and didn’t do much beyond sleeping.

Day 25

I spent Friday at home watching telly (I’d built up a library of TV to catch up on) and sleeping. It felt strange being at home with nothing to do, and although there were chores I could have picked up on, just walking round the house was enough to wear me out so I decided to take it easy. Luckily for me, Liz has been keeping on top of most things so I don’t have to; but I have a strange desire to get back to fitness so I can help out.

First Weekend home

Lego Cargo Plane
Lego Cargo Plane

Without any plans beyond relaxing, it seems that I’ve started to regress into childhood. My primary activities have included: completing ‘plants vs zombies’ on my phone, playing ‘Halo’ on my X-box and building a ‘Lego city cargo plane’ which my brother bought me for Christmas. I had a couple of friends pop round for a cup of tea and catch up which was nice; although I felt a little guilty on receiving a text from one of them saying ‘I’ve just come round to see you in Worcester, but you’re not here!’ Although on reflection, he should probably have checked my location first!

By Sunday I’d managed to increase my standing stamina enough to walk round to my friends’ house for dinner. I wore a pair of jeans which were tight in November and are now bunched up like a sack of potatoes around my waist (my favourite belt is now back in the drawer as it has too few holes, so I’ve had to resort to a fabric friction belt) On arrival, I had to lie down on the sofa and again after dinner which felt somewhat unsociable, but I think they understood. It was nice to fit a little sense of normality into my weekend.

Day 28 – the start of Week 5

It feels like a lot longer than 4 weeks since the beginning of my Chemo, but I expect this is partly due to counting hours in the ward. I had a district nurse visit in the morning to flush my line and take a blood sample. Having been told that I’d get a call with an appointment time, the shock awakening of a knock at the door took me by surprise, so she had to greet me un-showered and wearing little beyond my dressing gown! After a bit of a chit chat, she realised she didn’t have enough syringes for a double lumen line, so she left and said there would be another nurse round in the afternoon. Looking at the X-box controllers and Lego lying round the floor, they both asked If I had kids and were surprised to find out that I’m in fact a 33 year old child myself.

Day 29

Today I had an outpatient meeting with my consultant. Having bombarded her with (predominantly scientific questions) we decided that despite my headache I’m ready to crack on with phase 2 treatment. She said that I probably need to have my spine injections restarted but she’d get a neuro-specialist to come and see me beforehand to check me over.

The symptoms

I’m fairly symptom free now. I have a long way to go to get back to fighting fit, but besides my headache, I feel fine. My hair is still falling out, but slowly now with little change to my current appearance of baby head. I have noticed, however in washing my face, that my beard is falling out. I gave up shaving a few days ago and although it is growing, it’s much slower than normal and at first glance, my 10 days beard, looks like about 3 days growth (mainly due to the thinning of it’s mass) my throat is fine, mouth is healthy and even my digestive system seems to be fully functioning, so I’m prepared, if not looking forward to getting booked back in to hospital tomorrow.


Days 22-23 recovery period

I’ve cycled through the menus a few times now and while there is a reasonable amount of variety, I have never really expected any level of culinary excellence. Yesterday’s lunch, however, surprised even me.

Hospital food
Hospital food

Now admittedly, I got exactly what I ordered; and I’m not exactly a food critic, but as someone who currently can’t be bothered to eat at the best of times this presentation doesn’t exactly excite my appetite. Although I expect the average resident is fairly comfortable with the bland and ordinary, I’m pretty sure that without affecting cost and time, a small level of care and attention could vastly improve this meal in both nutritional and aesthetic values. Forgetting all the obvious omissions, I’d like to specifically raise your attention to the dessert. Apart from the choice of dish, if you’re going to drop a solitary slab of jelly in a bowl, it bears the question ‘why bother unwrapping it in the first place?’ As much as the idea of jelly appeared to be an interesting alternative, on reflection I think this would be enough to make Jamie Oliver quiver in his boots! With this in mind, the news that I can go home for a few days is a huge relief. I have a bit of a concern about my headache and how I’m going to cope with the journey, but to be honest if I have to bear that for forty minutes, the comfort of my own home and real food is worth the pain. The doctor decided that the second temperature was just a blip and had finished all my antibiotics and even reduced my other tablets to a small handful. I need to get a district nurse to visit and do blood tests and re-dress my Hickman line while I’m home and I’ll probably have to learn how to climb stairs again, but I’m looking forward to the short break of normality. Although still falling out, my hair loss seems to have slowed its progress so rather than shaving it off as is standard, I think I’m going to see what happens. If I look a mess for a few weeks in aid of science who cares! I’ve been taking a pic each morning the first few are below:

Hair 1
Hair 1
Hair 2
Hair 2
Hair 3
Hair 3
Hair 4
Hair 4
Hair 5
Hair 5
Hair 6
Hair 6

Days 19-21 recovery Period

As soon as I’m ‘recovered’ they’ll let me home for a couple of days which I’m looking forward to. I’ve been up and down the scale of Neutropenia over the last few days (low white blood cell count) I think over the last 6 days it’s been 0.5, 0.8, 0.4, 0.4, 0.9 and today it’s 8.7 which means I finally have an immune system!

Unfortunately, in addition to the confirmed flu I had with minimal symptoms (other than sore throat and headache), my temperature was borderline concerning at 38.1 on 2 occasions overnight. With this in mind, I’ve had a series of blood cultures taken whereby they presumably try and grow the offending bacteria in a Petri dish in order to identify what it is. This has the unfortunate result of my staying in the hospital for at least another 48 hours until they get those results back. In the meantime they’ve started me on a different antibiotic to try and help me fight it.

Yesterday I was quite ill and didn’t get out of bed until fairly late in the evening. I managed to eat a small amount but it was difficult to sit up with my headache as it is. I am feeling a little better today and managed to shower and sit up ok without too much discomfort. I am, however, beginning to get a little frustrated with this interminable headache.

Although they’re aware of all my symptoms, I haven’t really talked in too much detail with the doctors as they seem to be busy and distracted at the moment, but I have started to wonder whether this extended break in chemotherapy and delay before round 2 is likely to impact the electiveness of the treatment.

As someone who is usually in control and likes to take a handle on my own destiny, it’s a little difficult to let go and allow others to deal with it for me. I have to concede, however, that the doctors do know more than I on this subject and I rather have no other choice.

My Daily Routine

It has become fairly monotonous for me, but I thought for posterity I’d talk through an average day in the life of the little room which has become my temporary home.

6am – a health care assistant (HCA) walks in and wakes me up to perform ‘OBS’ (presumably short for observations) during which they check pulse and O2 levels using a clip on my finger, my blood pressure with an inflating arm cuff (I have my own one at the end of the bed which they connect to the machine) and my temperature using a machine which measures through my ear.

these ‘OBS’ are performed at roughly 4 hour intervals throughout the day and at about 10pm before bed.

6:30am – I am again woken by the nurse who takes a blood test. The procedure involves specially packed gloves, a couple of flushes including heparine to prevent clotting in my Hickman line and about 2 vials of blood.

7:30am – The main light is turned on and I am offered breakfast. Normally at this point (especially having a headache), I’m ready to say Pi$$ off! but my actual response of ‘porridge, orange juice and hot chocolate please’ is a little calmer.

8am – I raise the head of the bed and start to eat my cold, tasteless, instant porridge.

8:30 – a team of HCA’s come in to change my bed so I get out and sit on the chair with my headache in my hands for a short while.

9:30 – I climb out of my freshly made bed and go for a shower. This takes a while as I’m a little wobbly, and have been hooked up to a machine for most of the time which involves unplugging, wheeling, positioning so I can reach the shower via the curtain and without spraying all my clean clothes, manoeuvring via the toilet and returning to origin. I then brush my teeth which is rather painful and then perform the series of 3 mouthwashes including one which has to be mixed from 2 boxes of tubes.

10:30 – by this point I’m usually climbing back in bed as the cleaner arrives to clean the floors and surfaces.

11:00 – at varying times but usually by now, the nurse has arrived to give me my morning tablets. See list below. Around this time the doctors also turn up (sometimes 1, sometimes up to 3) to prod my stomach, check my breathing and ask me if I have any questions. To which the usual response is ‘oh, I haven’t checked that yet, but I’ll let you know,’ or ‘possibly, we’ll have to see how you respond,’

12:00 – lunch arrives, which for me is usually dinner at lunch time. So far mostly ‘puréed’ forms of common favourites like strange vegetable stew which tastes like beans, or fish Pie which tastes like a fish smoothie.

13:00 – by now I’ve usually started eating, but it’s cold and I’m less inclined to finish. Pudding is usually at the opposite end of the warm spectrum as I’d normally expect, e.g. Stewed apples with custard- cold, ice cream – room temperature! – I perform my mouthwash routine a second time.

14:00 – they take my tray away and offer me a ‘hot’ drink (usually tepid:) tea is almost tolerable, not sure why but always offered sugar in my sickly hot chocolate which seems overkill and I daren’t tempt the coffee!

15:00 – after an hour or so sleeping usually a visitor arrives asking me if I need anything and how I feel. Although ever grateful, it’s difficult to appear enthusiastic by this point.

17:00 – ‘dinner’ arrives which is a baked potato or sandwich. Or soup which is a gloopy grey undefinable goo with floating almost re-hydrated shapes. Due to my enforced diet I have been restricted to the latter, although in the last few days I have started to risk the excitement of triangle cut sandwiches chewed well. If I have a visitor, they have to watch me eat.

19:30 – by now visitors have left and I have time to update my blog, catch up on the news or watch some telly. I usually have a couple of interruptions for ‘OBS’ or ‘hot drinks’ I also have to brush my teeth and perform my mouthwash routine again.

21:30 – evening tablets are given which includes intravenous antibiotics into my Hickman line (I expect this will finish soon though)

22:30 – final OBS are performed and usually as I just start to read my book, they turn the lights out. (There is a side light but it’s difficult to reach in this room as the remote thingy doesn’t work so a little annoying, but I try and finish at least a chapter!)


The tablets:

Morning tablets
Morning tablets

I’m starting to work out what most of them are for, I may have some of the spellings and functions wrong, so if you’re a medical student- go to a library and ignore everything I’ve said.

  • Allopurinol – prevents gout due to breakdown of cytoplasm
  • Aciclovir – anti viral
  • Amitriptyline – relaxant
  • Domperidone – to relieve nausea.
  • Omeprazole – protects the stomach lining
  • Ondansetron – to relieve nausea.
  • Co-trimoxazole – prophylactic (preventative) antibiotic
  • Sodium Docusate – to relieve constipation

These are in addition to pain relief (paracetamol/codein/tramadol) my migraine tablets (sumatriptan), the mouthwashes (nystatin, chlorhexadine, caphosol), solution for acid reflux (Peptac suspension) and the flushes provided for my Hickman line (sodium chloride, heparin sodium)

As you can imagine, it’s quite a bit to carry and remember on discharge days!