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.

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Days 11-15 Chemotherapy

It’s worth noting that the frequency of my writing will be subject to how I feel and, for the last few days, I’ve felt pretty rubbish which means this post is a little delayed. I’m lying here today with the remnants of probably the worst headache I’ve had in my life (which being prone to migraines is not a small matter). So I think for a bit of a change, I’ll start with a run down of the symptoms over the last few days followed by the treatments.

How do I feel?

To explain the headache in more detail, it is one of those pounding aches which seems to run across the temples. It is at its worst when I’m sat upright or standing. The doctor said that it could be related to the intrathecal injection or possibly a virus. My neutrophil levels have been low also – in fact I’m currently neutropenic; meaning that my body has less than half the safe levels of white blood cells so it has to work extra hard to fight infection. When I woke up on Friday morning and went for my shower, my headache was so intense that I was sick for the first time since treatment started. I went straight back to bed and apart from toilet and shower breaks and a couple of treatments, I have done nothing other than lying down or sleeping every day since.

In addition to the headaches, I’ve noticed that my finger tips have become sore as if I’d been playing a string instrument too hard, but this is otherwise a minor ailment.

The other key symptom which is related to the course of Methotrexate which started on Saturday morning, is sore mouth and throat. I’ve had mouth ulcers in the past, but this is quite extreme, it hurts to brush my teeth, and the bristles make my gums bleed. I have 3 types of mouthwash which are to be taken 4 times a day. Currently I have sores under my tongue, inside my cheeks and under my lips, my throat feels dry and scratchy and my bowels are in discomfort as the drug can affect the whole system. The mouthwashes do seem to ease the pain a little but even opening my mouth and eating are currently uncomfortable activities.

The treatment.

So as mentioned before, on Friday, I had a Hickman line inserted (see separate post), this is to replace the PICC line. It has 2 lines rather than 1 so the nurses can apply treatment and take blood samples at the same time. I needed this line to be inserted before I could start the methotrexate.

After returning from the procedure, they sent me for an X-Ray to check that the line was located correctly. 30 mins later, the doctor had confirmed ok, and it was ready to be used, they applied flushes as normal then started me on a course of Rituximab. Being the second round, they were able to start the dose a little more quickly but monitored me every 30minutes as before. The course lasted about 4 hours. Due to my headache, I spent most of the time resting and didn’t feel any other effects.

Saturday morning, although I didn’t feel it, I was ready to start my dose of Methotrexate they started by applying saline solution for hydration, along with a series of blood and urine checks. The body finds it difficult to break down this chemical so the hydration helps to give my bladder the best chance. The PH levels of my urine are measured every 2 hours until traces of the chemical are down to an acceptable level at which point the hydration will stop (I’m still on hydration as I write, but expect it to finish today) the chemical was applied in 2 bags which were yellow in colour, the first containing 750mg and lasting an hour, and the second having 5350mg and lasting 23 hours. The hydration course has lasted about 4 days, and I’m looking forward to a night of sleep without interruption every 2 hours!

Blood transfusion
Blood transfusion

On Sunday my neutrophil levels dropped quite low so they performed a blood transfusion. Although there is a risk of allergic reaction, it is rare and otherwise the only sensation is renewed energy. My complexion up until this point had started to yellow a little and although this did perk me up a little, the headache was pretty much all I could feel. The course was 2 bags of A-rh positive blood, each lasting 2 hours. It seemed a little strange to think of someone else’s blood mixing with my own and I wondered whether having 3 sets of DNA within my body may affect me, but apparently not!

Monday and Tuesday, I spent mostly sleeping, I was moved to a side room as it came available and having an increased temperature, they felt my headache could have been due to an infection, although I’m still waiting for blood results to confirm. I’ve also been having an injection of folic acid at regular intervals to aid with the recovery process along with the usual array of tablets. I’m due a couple more intrathecal injections, but these have been postponed until I’m well again. The doctor confirmed this morning that once this round of treatment is complete, and I’ve had a few days to recover, round 2 starts which is a little quicker but more intense, and the whole course is repeated once more (4 rounds or cycles in total).