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!)

sleep

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!

Days 16-18 recovery period

Although I try and take pride in my appearance, I would tend not to regard myself as vain or in any way precious about my appearance. In this world of self imagery, high speed transactions and 140 character assassinations, the way we look affects the way people feel about us.

In my mind, there is little relationship between hair style and personality but perhaps in some way it does betray personal style and taste. I thought I would be prepared for hair loss, in fact it was the only symptom the doctors were sure about, but even so, watching your hair fall out in clumps as it has over the last 48 hours does bring with it a certain level of anxiety and self-reflection.

Hair Loss
Hair Loss

Otherwise the last few days have been fairly un-eventful. I’m now waiting for all my platelets and white blood cells to restore to acceptable levels. It was also confirmed from a swab of my throat that I had contracted ‘influenza A’ – incidentally the variant of flu that is not covered in this years’ flu jab and which the chap in the cubical next to me also had (we were sharing a bathroom, so I was less surprised than the nurses at this outcome!) I seem to have coped fairly well with it though, apart from a sore throat and generally feeling unwell, I can say I’ve had much worse with a fully functioning immune system, although I expect the course of intravenous antibiotics and tamiflu probably helped.

I also reached the end of my course of hydration. The relief from the beeping and clicking of the pumps and having to unplug and wheel around the stand each time I went to the toilet or shower was a greater relief than I had expected.

It’s surprising how used to performing a task regularly you get (especially when it’s every 2 hours for 5 days) that you forget how annoying and restricting the task in fact is. I’m sure I’ll re-asses some of my other daily habits when I return to normality!

Procedures- Tunnelled, Central Venous Catheter- Hickman Line

As already mentioned I had my Hickman line inserted on Friday, it wasn’t a lengthy procedure or in fact too painful, but it has made life in terms of blood samples and injections much more comfortable and convenient.

What is it?

The main benefit of the Hickman line over the PICC line is that it has two separate lumens (valves) which means that treatment can be applied while at the same time blood tests can be taken. During my Methotrexate infusion, they could also apply saline solution at the same time to help support my bladder.

the main daily benefit for me is that the exit site is at my chest rather than my elbow which is better for both comfort and daily activities such as having a shower.

The Procedure.

Central Hickman Catheter
Central Hickman Catheter

From about midnight on the night before I was told not to eat or drink in preparation for the procedure. I was taken through to the operating room and asked to lie on the bench. The anaesthetist started to shave my chest while her colleague inserted a catheter into my wrist. She cleaned the area and then applied 3 doses of anaesthetic in a triangle from my neck around the right side of my chest. As the anaesthetic started to react, they applied a mild sedative (to help relax me noting that I still had my severe headache) via the catheter, and prepared the area by applying shields taped to my chest and face so that I couldn’t see the operation (and presumably to collect blood spray). They started by making incisions to the top of my neck either side of my collar bone. She passed a needle through the opening and into a vein which passes from my neck down under my chest into my heart. A guide wire is passed through the needle and advanced into the vein. A vein dilator is then passed over the wire to hold the vein open and make a seal. At this point the performed an x-Ray to check the position. I was fairly drowsy at this point, but was aware of what was going on. The staff reassured me as I went, telling me when to expect tugging and pulling, and talked me through the steps. Next they made an incision into my chest and passed the line just under the surface of the skin up to the site of the guide wire. The line was pushed into position and the guide wire was removed. The pulling and tugging at this stage was fairly strong and although I could feel what was happening, there was no pain, it was just a tugging sensation. After a few minutes, the entry and exit sites were stitched closed and a dressing was applied. The anaesthetist instructed her colleague to reverse the effect of sedation and another fluid was applied to my catheter. I became much more lucid and awake at this point and I could feel my headache again. I was sent back to my bed for a short while. A few minutes later a porter arrived to take me for a chest X-ray. 30 minutes later the doctor confirmed the line was in the correct place and was ready to use. The whole process probably took an hour and I was surprised how quickly it was ready for use. I was expecting to feel pain as the anaesthetic wore off, but the pain was no greater than a small cut. My collar bone was a little swollen and was a little tender for the next couple of days and it’s taken me a while to get used to sleeping with the line in. The top stitches will come out tomorrow (after 5 days) which I’m looking forward to as they’re starting to rub a little. The stitch at the exit site will be removed after 2 weeks. I have also had a bit of an allergic reaction to the dressing which has made the area a little red and itchy, but this is manageable. Re-dressing tomorrow should help relieve this.

Sore Stitches
Sore Stitches