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.

Days 8, 9 and 10 Chemotherapy.

So they say to start the year as you mean to go on, although for me 2015 in bed with a headache was not my intention, especially having not had a drop of alcohol for months!

The treatment

so just as I was settling down for my second evening at home on Monday, I had a call from the ward asking me to return in the evening at about 8pm. Frustratingly due to the bed shortage, a vacancy had come up and they were concerned that if they didn’t book me in straight away they’d lose my bed. So I spent the night of the 29th back in Worcester.

On Tuesday, I was due to have a short treatment of vincristine, followed by my intrathecal injection on Wednesday. The doctor said I would be able to go home afterwards noting that I couldn’t start any more treatment till my Hickman line was put in on Friday.


This time, the fluid was clear in colour and only lasted for about 15 mins followed by a flush. I didn’t experience any reaction to it apart from a bit of tiredness about an hour later.


The next morning, in preparation to my intrathecal injection, I was told that my neutrophil levels (a measurement of white blood cells) were starting to fall. This meant that I’d need a daily injection to help my bone marrow replace white blood cells and reduce risk of infection.

I had to negotiate with the doctor as I was hoping to go home to see the new year in noting that I wouldn’t be back home for several days after the next treatment. She said that as long as I monitor my temperature and provided I had my injection before I went home, I could go home and return the following afternoon to receive the next injection.

The Cytarabine was administered through my spine (intrathecally- see separate post) to help it interact with blood cells in my brain. The procedure was fairly pain free and lasted only 30 minutes including preparation. After a short rest, I started to get a severe headache which continued through the evening. I had a lift home from my brother during which I struggled to fight nausea and dizziness caused by the headache. I arrived home and had some water and paracetamol which helped numb the pain a little. I rested in front of the TV with Liz to see out the remainder of 2014.

I felt a little guilty as Liz decided to stay with me rather than celebrating the new year with friends, but I’ll make it up to her next year. I couldn’t stay up all night so went to bed at about 10:30 and read a little before drifting off and sleeping as best as I could with the nagging headache in the background.

I woke up the next morning with the headache at a stronger pace. After breakfast, I went back to bed and spent the first part of 2015 in bed. It had subsided a little by 14:00 so I went back down for a lovingly prepared soup for lunch.

At about 16:30 it was time to return to the hospital and having eaten my final meal of the day on the ward (instant vegetable soup, which incidentally I will be happy to see the back of) I’m sat here writing to you. Tomorrow I’m having my Hickman Line put in which I expect to be a little more painful than the PICC line, but its apparent complexity intrigues me, and being a local anaesthetic procedure, I’m sure I’ll be able to tell you all about it tomorrow. So till then Happy New Year…