Day 58-65 Chemotherapy

Last Wednesday I was expecting my second intrathecal injection. There was a delay with the doctor coming round, and by about 14:30 I was resigned to the fact it wasn’t going to happen (noting that the doctors finish at 17:00). It turns out there was a difference in opinion between the new registrar (who by the way, seems to be on the ball; a refreshing enhancement to the ward) and the doctor who would perform the procedure. The registrar felt that I was best off getting it out of the way so I could go home for a couple of days to be back on Saturday, while the doctor felt that I needed a break between the injections in case of an adverse reaction. Bearing in mind that I didn’t really want to spend another whole week in hospital, I quietly sided with the registrar. The consultant came down to decide; the three of them came in to my room having audibly discussed this outside and told me that they had decided that I could go home this evening. Conveniently my dad had just arrived while this was going on, so a couple of hours’ admin and we were travelling back home. I thought it was a little strange that they could just cancel this procedure, but they need beds and I wasn’t going to argue.

Chemotherapy Outpatient style

Having spent Thursday at home, and feeling a little refreshed, on the Friday I was due a short course of Vincristine. The dose was just a 10 minute infusion so they decided it would be ‘easier’ if I had this as an outpatient. It was a little strange to be sat on a ward that apart from the lack of beds and curtains, seemed familiar. A chair, side table with water jug, drug trolley, drip stand with pump and an HCA walking round performing ‘OBS’

A cup of tea and paperwork later, we were done. The 10 minute infusion took about 3 hours out of my dad’s day, but I think he feels like he’s making up for lost time and said he’s glad to help.

Return to hospital

with all the travelling, packing and unpacking, it didn’t feel like I had much time at home, but I managed to delay my return visit till the evening with a minor fib about having to arrange transport. This meant that some of the visits by friends and family which had been planned on Saturday could be performed in the comfort of home rather than in the depressing side room without Mariokart.

Saturday afternoon was spent preparing for a day of 24hours Methotrexate on Sunday followed by a 3 hour course of Rituximab. The course started on time at 4am with some pre-meds including antihistamine and a drug to protect my bladder. This was followed by saline solution which preceded the methotrexate by a few hours and continues as I write this until my body has expunged the remaining poison.

I had almost forgotten about the Groundhog Day routine that ensues with this treatment: beep beep, wake up, unplug the pumps and stumble with the stand into the bathroom, urinate into a jug, return to bed and press the call bell, lights on, urine tested, bag mixed and refitted to the pump, try and get some more sleep. This happens every 2 hours for about 4-6 days.

I realised I was feeling really weak yesterday and my blood results confirmed neutropenia. I had a couple of blood transfusions which seemed to help and I feel a little more alive today.

How do I feel?

With the obvious lack of sleep I’m shattered. I’m a little disorientated and dizzy; I’m not sure whether this is due to tiredness or the treatment, but probably a little of each. As expected, the main side effect from the methotrexate is that it affects one’s gastrointestinal tract meaning blisters and bleeding from my mouth all the way down to out.

I’m still using a multitude of mouthwashes which help, along with tablets to aid bowel movements, but eating and brushing my teeth hurts. I have constant pains in my abdomen similar to wind or stomach cramps along with horrible shooting pains which make me writhe around a little, but I’m getting used to this now and I know it will ease off in a few days.

A new pain, which I don’t remember from before is intense stinging in my fingers. I’ve had tingling fingers pretty consistently, but yesterday this got a lot worse to the point that I couldn’t peel an orange without a knife and I was a little concerned about being able to play the violin again. The registrar comforted me slightly by saying that this was due to the vincristine and is fairly well documented, although It might take 6 months to dissipate, it would go eventually and he increased my dose of amytriptiline in order to help minimise the sensation.

Advertisements

Day 54-57 Chemotherapy

I’ve been back on it for a few days, and am starting to lose track/energy; Rituximab, Vincristine, Doxorubicin, 3 days of Cyclophosphamide and yesterday I had another intrathecal injection of Cytarabine. Gladly the procedure of ‘very thin needle’ and ‘4 hours lying on my back’ seems to work ok as I have another booked in for tomorrow afternoon. I feel a little light headed, tired and my bones ache, but I feel a great deal better than I did during cycle one.

Bruised knuckles
Bruised knuckles

I can also feel the peripheral effects of my chemo coming through; my skin is dry, mouth claggy and my knuckles are turning brown. The heady dizziness is disorientating, and I’ve spent most of the last few days staring at newspaper supplements and the wall or mindlessly watching TV shows that probably wouldn’t have much impact if I was fully coherent. After tomorrow I have a few days break in order to prepare me for 24hr Methotrexate infusion. I didn’t enjoy this last time, so I’m planning to get up and about as much as possible and try and shake myself back to normality so that I have the best chance of getting through it.

Trying to sleep

The room is hot so I have the window slightly ajar. The alternative is the fan, but as sleek as it looks, it’s noisier than the dark outside. My head is still throbbing a little as I drag myself under the scratchy white sheets. I no longer have the energy to remove my pyjamas as I drop my head into the pillow. I hold the button slowly reclining the bed into its familiar prone position. My top crinkles beneath me which I know I’ll regret in the morning, but I can’t pull myself around too much without tangling the Hickman line in my chest. It has become a familiar appendage, hanging against my skin. I rarely notice it until I lie on the clamps which dig unforgivingly into my flesh. I reach to the call button and switch off the light.

Bed panel

Nuzzling my head into the corner between the pillow and the side panel, I stare at the warm LED glow shimmering across the mechanical grey stucco plastic. Finally I close my eyes. The darkness is noisy.

I can feel the throbbing of my joints as my blood pulses in syncopation around my body. The repetitive flick of the second hand on the wall is suddenly overwhelmed as the deep rumble of a car drives past the window. At the same time I hear a click as the gurgling rumble of the fridge kicks in; an appliance on its last legs. Clinks and rattles join in from outside as a trolley passes along the corridor. I concentrate on the colours behind my eyelids.

The disorientation of dark blotchy reds merge with purples and yellows. My mind lifts as I feel a cold chill through my brain. I can feel my head spinning. I feel weightless and can no longer orient myself against the sounds from outside. I can feel my whole body fixed in position spinning around the room. The dizziness makes me nauseous, but I let it pass as I imagine myself spinning and diving uncontrollably, bouncing off the walls. The exhilaration increases my pulse momentarily as I finally drift off to sleep.

Recovery Day 48-53

It’s been about 2 weeks now since my last round of treatment, apart from 2 days in hospital in the middle of my recovery period, this has been the longest stay at home since the end of November. It’s a strange feeling, and as the saying goes, the time has flown. I also realised that I haven’t driven once during that period, which for someone who used to clock quite a few miles is also a little strange, but I think I’ll pick it back up again!

Having mostly frittered the time on needless procrastinating, mindless TV (I even watched 2 whole episodes of Doctors!) and computer games, I feel I’ve wasted some of it. I’m sure most people (and definitely my consultant) would say that it’s important relaxation time, although it’s usually against my nature.

I was originally due to go back in to hospital on Sunday/Monday. In the seemingly haphazard, last minute approach that I probably wouldn’t accept from elsewhere, but have started to get used to; I had a call yesterday (Thursday) from the hospital saying that a bed had come available and they’d like to get cracking.

This terrible timing was a little frustrating for 3 reasons:

1: I intended to hand make Liz’s Valentines gift which I now had to rush in a day rather than span over a few days as originally planned.

2: I’d just received a second hand copy of Goldeneye for the wii in the post, and was looking forward to some nostalgic bond reenactment.

3: I was due several visits over the weekend from friends and family, which I now had either to cancel or relocate. (I did, however, cheekily combine my visit from Owen last night with a lift to the hospital for which I was grateful)

From the comments by the nurse, however, it sounds like my consultant had made a note on my file about the delays during my early phases of treatment and wanted me to keep on schedule. I am, on reflection, glad of this. A bit of frantic hassle now will lead to my treatment being completed quicker and more effectively meaning I can return back to a renewed sense of life.

So for now, I’m back in ward confinement on R-Codox-M starting with the R for Rituximab which has so far been running for about 2.5 hours with another half to go…

Day 44-47 Recovery Period

Blood then home

On Wednesday morning I was told that as I had no serious symptoms and a normal temperature, they were happy for me to go home after the transfusion. There were 3 bags of blood required including a flush between each and a process of admin (I think they have to order each as they need it). The first starting at 11:00 meant that I would be in hospital until about 20:00. Interestingly, although they know my blood type, they have to perform an additional “cross matching” exercise the same day. As well as blood group, they also refer to antibody levels.

My mum arrived just before 8pm and I went home fairly promptly; the nurses had organised my discharge notes and the pharmacist had delivered my bags of medicines by about 6 even though I was still plugged in- I think they must have needed the bed!

Back Home

Thursday morning I felt revitalised. I think during the gradual decline I hadn’t realised how much the anaemia/neutropenia/thrombocytopenia had affected me.

I wasn’t sure whether the nurse was due as she was previously booked in for Friday, but she arrived promptly at 10:30 to administer another shot of Lenograstim (some nurses refer to this as GCS which is granulocyte colony-stimulating) which has been extended for a further 10 days.

I knew I felt better as I decided to tidy the living room a little which has become cluttered with pharmaceuticals, dressings and solutions.

Pharmaceuticals
Pharmaceuticals

I spent the afternoon filtering through work e-mails which had filled my inbox. I also started working on some sketches for a whisky project that was pending although an email popped up Friday morning saying the customer didn’t have any budget so I decided not to complete or submit these.

For the rest of the weekend I’m looking forward to relaxing in the traditional sense, rather than through the necessity of not being able to do much else.

How do I Feel?

I generally feel well although waking up this morning was hard work. I can feel the effects of the Lenograstim again; it has the tendency of inducing bone and joint ache similar to how you feel when you have flu. I can also feel the back end of the last Chemotherapy session creeping over me; the tips of my fingers are very numb and tingly (a bit like pins and needles) I also have a similar sensation in the tip of my tongue. My ‘fissure’ seems to be subsiding and my recent bathroom visit was much more manageable. At it’s worst, I felt like I had been eating broken glass, so the knowledge that this was a temporary experience is a huge relief. Finally, and this is difficult to pin down to my treatment or whether it’s just tiredness, I have a kind of cloudy brain feeling. Although I feel awake, it’s as though I’m viewing the world through an obscure experimental movie like ‘Being John Malkovich.’ A temporary cloud hovering over all my senses I hope, but this feeling was much worse earlier on in my treatment.

I am repeating the R-Codox-M treatment (cycle 1-3) in a week’s time. I was told that the chemicals are accumulative. I’m hoping with apprehension that the symptoms aren’t accumulative too.

Day 39-43 Recovery Period

Before I start this post, I need to offer a health warning to family and friends: I’m ok, there’s nothing to worry about, I just had a bit of an emotional blip; but I think it’s important to be honest.

Day 39 first day home

I was looking forward to being home for 2 reasons: firstly a chance to relax again and regress back to childhood playing computer games while being waited on by Liz. Secondly there was a family gathering planned on the Saturday in aid of my Aunty’s birthday and it would be a convenient excuse to catch up with a bunch of relatives who I hadn’t seen for a while.

My blood counts, as noted previously, were on their way down, so the district nurse had been booked to arrive daily to administer the Lenograstim injection. On Friday the nurse arrived about 10 minutes before my Dad who kindly offered to make a cup of tea and finish the washing up. When she left, he foolishly asked if there was anything else he could do. Several journeys to the loft later it was time for him to go so I felt a little guilty that we hadn’t had time to catch up, but very grateful for the help.

otherwise the day was fairly un-eventful apart from completing a level of Halo!

The Party

Saturday was mostly spent sleeping and relaxing in preparation, I was feeling fairly well in myself but a little weak so took it carefully walking to and from the car and sloped off for a bit of a sleep on arrival. The party was good, nicely laid out with a good spread of food, music which the aunties could dance to and I managed to catch up with most of my relatives. My mum’s cousin came over with his wife who had been through a similar experience 4 years previous. They offered support and said that there’s a light at the end of the tunnel, a sentiment which was appreciated.

I generally follow a more scientific than theological ideology, but the words “I have been praying for you” spoken by a couple of relatives was also greatly appreciated, especially knowing that it was both genuine and heartfelt.

Even though I spent the time sitting down, I realised how tired I was when I stood up. To those who didn’t know me, I must have seemed like a drunken old man stumbling to bed early, but I felt a sense of achievement all the same.

The Panic

During Sunday, I became aware that I had taken a couple of risks. I like to think of myself as a ‘pragma-realist’ I like to form decisions and opinions when I have all the information, although I understand that sometimes ‘all’ the information is un-available or difficult to obtain.

The risks therefore were as follows:

1: I hadn’t had a blood test since Thursday and the next was due Monday (I was aware of this on discharge, but decided not to press the point in case of jeopardising my release) this meant it was difficult to know how low my blood levels were.

2: I went to a party full of people in a public place. (I had discussed this with the doctor who said this might be ok, but again hadn’t been explicit about it with the nurse or doctors on the day of discharge in case it would jeopardise my chances of being able to go)

In the afternoon, I had started to feel quite weak and feeble so went to bed early. As soon as I started to drift off, my mind started wondering. Recalling a comment the doctor had made on Thursday; “I can feel the lump here, it’s much smaller than before,” began the start of my panic. Until this point, I had thought it had gone completely and suddenly could feel it again myself. On top of this, my skin was feeling really cold to the touch and I was sweating which is usually a late symptom and should have stopped by now. To top this off and noting that I’ve experienced every type, size, shape and colour of fluid and solid discharge during my treatment I had uncomfortable bowel passing which was quite bloody and I had strange blotches (like red freckles) appearing on my skin. Adding all these together I started for the first time to think of the ‘what ifs.’

Red Freckles
Red Freckles

The hardest thing to console myself over was not all the problems I’ve had or things I should have done, it was all the things I hadn’t yet done. As much as I’m comfortable with the experiences I’ve had so far and am confident that I have learned a great deal during my relatively short life, I feel I have a lot more to achieve and am capable of offering more. Obviously no-one knows what’s round the corner, but I would be deeply unhappy if I had to leave without having made a positive contribution to society, even in the form of offspring. With all these spinning thoughts and imagined conversations with friends, family and colleagues flashing through my mind I started to well up. As a pragmatic bloke the first tear dropping down my cheek is always a little embarrassing, but it happens; I’m not sure why we feel the need to instantly quell it, but perhaps that’s our way of coping. I managed to stop the tears before waking Liz, but felt a little refreshed when I woke up. Perhaps it was just a case of the Sunday blues.

Return to hospital

On Monday the nurse came round to take blood tests and flush my line. I got up late as I was extremely tired, so I asked Liz to bring her (and all the kit) upstairs. I spent most of the day asleep although managed to make it downstairs in the afternoon. Mum had the day off work so cooked lunch for me and Liz which was nice. I watched a bit of telly and sloped back off to bed. Nervous of the bleeding I decided To avoid going to the toilet before bed.

Tuesday morning, I had to go to the toilet. By this time, based on the discomfort and a bit of help from the NHS website, I was pretty sure it was heamorrhoids. I decided to call the hospital to see the best course of action. The nurse said that my blood counts weren’t back yet but that I should book in with the GP to get them checked out. She prescribed me cream over the phone, I was tempted to offer Skype but decided against it! A couple of hours later at about 16:30 I had a call from the hospital saying we need you to come in via A&E the blood results were as follows.

Heamoglobin – 76

White blood count – 0.2

Platelets – 10

Neutrophils – 0.0

Platelet Transfusion
Platelet Transfusion

I am now back in hospital receiving a bag of platelets (low count explaining the heamorrhoids, which the doctor here has actually said is an internal tear or fissure and not piles after all) I have a further 2 bags of blood to follow and the nurses were surprised I managed to get away without further or worse symptoms! I’m hoping they’ll send me home once I’ve had the transfusion, but recent experience tells me that’s anyone’s guess!

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!