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.
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!)
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
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!
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.
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!
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.
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.
Yesterday, I had an intrathecal injection. I was expecting this to be quite painful and was a little apprehensive after the bone marrow sample. The main side effect for me (although I’m prone anyway) was a massive headache which knocked me out a bit, hence my tardiness in writing. Feeling a little better now though so here it goes:
What is it?
Due to the nature of my cancer, the treatment needs to get round the whole body including my brain in order to target any rogue cells floating around in my blood. In our neck, we have a protective defence which filters blood and minimises the risk of infection to the brain. This mechanism (the ‘blood brain barrier’) also prevents chemotherapy drugs from accessing the brain also.
In order to bypass this system, the doctor performs this procedure which applies the chemical into the spinal fluid which can then circulate into the brain effectively.
The Chemical and how it’s applied
Apparently, this method can also be used for some anaesthetic and other treatments, but in my case the chemical used was cytarabine.
I was asked to lie on the bench curled into a ball on my side. I had to bring my knees quite high and bunch my shoulders over. Explaining the procedure as she went, the doctor said that she’s aiming for the gap between my Lumber L2 and 3 vertebrae between the disc. The spinal column finishes at L1 and is then followed by a chain of nerve endings (like a horses tail) so the doctor is very careful and slow in order to avoid these. By curling up, the gap between the disc and vertebrae is opened up to make the targeting easier.
Once she had found the location and cleaned the area, the nurse applied the first needle which was an anaesthetic (a gentle scratch). She tested the area and I still had some sensation, so she applied a little more, I couldn’t feel the needle at this point.
The first step is to remove a small sample of fluid for testing. They try not to take too much as the release of pressure can be painful, so they just remove a couple of drops. Once this is done, she then applied the treatment which for me was 70g dissolved into a 3.5ml solution. Although being a small amount, she injected very slowly to minimise discomfort.
Once complete, a dressing was applied and I was slowly sent back to my bed. In order to help the chemical travel through my spinal column, I was asked to lay flat on my back for 30 minutes.
How did it feel?
The procedure was in fact pain free. I felt a bit of pressure as although I’m lean, there is still quite a way for the needle to travel. Otherwise and for the next hour or so, the only sensation I felt was a slight light headedness from lying still. After this, however, I did start to get a headache. I’m fairly prone to headaches and I get migraines so I was expecting a headache in some form, but this was one of the stronger types of headache in the realm of serious hangover or post migraine shock- it lasted for several hours and although I slept through it, it returned the next morning. It’s now gone after a period of about 12 hours.
So apart from comprising Boxing Day, the last two days have been fairly similar with regards to my treatment. After the usual blood tests and pre-meds there hasn’t been a huge amount to report:
each day at about 10:00am I am hooked up to a bag of cyclophosphamide which lasts about an hour. I read today that it leads to a high risk of infertility. Noting that this is the most common treatment in my regime, I’m glad I was able to bank some of my potential self on Monday!
How do I feel?
Yesterday, I felt a little uncomfortable after the treatment. I felt a little short of breath and light headed. I’ve experienced this before, and noting that I’m basically being poisoned, I expect to feel a little strange. Nevertheless, I mentioned it to the nurse. They were less concerned, but as a precaution performed some additional blood tests (to check for heart function) and hooked me up to an ECG machine (which I know from watching Holby City means Echo Cardiogram!) it was a little strange having sticky patches (about 8 in total) stuck all over my body, and cables linked up to a machine which ultimately produced an old style dot matrix print out! (Presumably of my heart rhythm). All was well though.
Each nurse and doctor I’ve spoken to, has reiterated the importance of drinking plenty of fluids. I appear to have fairly low blood pressure which they seem to attribute to me not drinking. As a middle distance runner, I’m fairly used to drinking water and I think with the ‘sloppy diet’ that I’m struggling through, I’m pretty confident of my hydration level.
This was further enforced when I was asked to sample 24hrs Urine for testing- I was given a jug and a 5 litre bottle, the nurse said I was unlikely to fill it, but to ask if I needed more!
After a good night’s sleep (with the aid of a tablet) I felt refreshed this morning. Although after having my shower, I felt really weak. Perhaps I’m a competitive bloke who doesn’t like loss of control, but having been pretty fit and healthy a couple of months ago and now being too weak to climb a flight of stairs without breaking a sweat is a little difficult to swallow.
On top of this, with annoying acid reflux aside, I think I’m starting to experience my first real symptom of treatment. Until now, although the food I’ve been eating has been strange and at times revolting to look at in a puréed form, it’s familiar and at times comforting taste has generally aided consumption. Now everything seems to have a kind of metallic taste, and without my sense of smell it’s difficult to distinguish from a cup of tea, a glass of water or the hideous ‘natural’ flavoured mouthwash I have to rinse with 3 times a day!
Some good news, however, I get a 2 day break from treatment and as my Haemoglobin levels seem to have restored slightly, I’ve been told that I can return to the comfort of my home until Monday when I’m due to start a 23hour course of Methotrexate (for which I as yet don’t have any information, I’m lead to believe is unlikely to be an enjoyable experience)
The PICC line is a type of catheter which can last up to six months and is much better than having standard catheters which need to be replaced every 2-3 days.
The line comprises a thin tube which passes through a clamp and valve and enters the body through a large vein normally on the inside of the elbow. The tube follows this main vein underneath the bicep muscle through the shoulder joint around under the clavicle (the collar bone). It then travels down and stops just short of the heart.
How is it inserted?
I started with an anaesthetic cream applied to the entry location which would numb the veins (I’m left handed so asked for it to pass into my right arm). This was left for about 30 minutes. I was expecting there would be a a strange tickling sensation or even pain to this procedure. The needle was a little longer than a normal catheter needle but I barely felt this go in. Once the vein was found, the tube was gently pushed to the correct length. The nurse was fairly experienced and using marks on the tube she could gauge how far round it had gone. Once it had passed into my shoulder, she asked me to look down and to the right to help the tube pass downward at a branch in the neck. Once located, she tested the line to make sure blood could flow out and a saline flush could flow inwards. Then a dressing was prepared and applied and the valve was locked off.
As an additional safety check, I was sent to the x-ray department to check the tube was correctly located.
I asked to look at the x-Ray and although I could see the line, it was difficult with untrained eyes to follow it’s complete path.
I sometimes get a little nervous (perhaps more at the thought) of these procedures, but I can honestly say, they could have done this without me noticing. The only thing I felt was a slight pressure in my arm as the needle was inserted.
Since having the line in it’s been much more comfortable and flexible to live with and I can barely feel the intravenous chemicals passing through using this system when compared to the standard catheters.