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.
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.
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!
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).
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!
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…
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 after a couple of days at home, my spirits are a little higher than they were. I’m still finding walking around the house (especially the stairs) frustratingly tiring and spend most of the day feeling lethargic with my brain working slower than its normal rate.
I’ve spent the time lounging around catching up on Christmas telly and building Lego (ok I admitted my guilty pleasure, and the theme of gifts this year 🙂 ).
I’ve also started to develop a cough along with my tight chest, but it doesn’t feel like an infection yet. I also found that my skin is starting to get quite dry, although this could be due to the interminable hand washing that I’m subjecting myself to.
In other news, it looks like that due to the drunken, clumsy, comedy xmas slipper sporting public, there’s a bed shortage, so I can expect the next few days of my treatment to be spent as an outpatient. I’m not sure whether this is entirely good news, as it means a couple of my treatments (including methotrexate hell) will be delayed, and I’ll be subject to fewer checks. It also means that I’m going to have to rely on Liz as acting taxi for me during her week off work (which incidentally was a coincident well timed!). On the plus side, I can continue to relax in the comfort of my own home.
To add to the administrative mess, I had to send Russell (my brother) back across the hour round trip to the hospital to return an undelivered bag of tablets to the ward. I hope Mrs. Taylor received them in time!
Any side effects?
Apart from the aforementioned, they’re fairly manageable so far. I did however have a shock today after weighing myself. I was a little prepared as I’m visibly gaunt, but over the last 10 years or so, my weight has rarely fluctuated beyond 13.5-14.5 stone (85kg ish) and now stands at 11 stone (70kg) which for someone of my height means that with the impending hair loss I think fancy dress choices will come much more easily (I’m thinking Monty Burns or Nosferatu, suggestions on a postcard…)
On the top of the list of possible side effects when signing my consent was the frustratingly contradictory statement:
now, with the position of my tumour and the fact that I’ve spent weeks with both of these I wasn’t sure which way this was going to swing, and according to the doctor, it could be both. The last few days, however, have driven strongly towards the latter. It’s been about 4 days now and beyond a couple of glasses of the inventively named ‘movicol’ solution, it’s getting towards time to raise it with the doctor. I’m due back in the hospital tomorrow morning for a course of ‘Vincristine’ so I’ll probably mention it then!
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)
So Merry Christmas! I’m feeling in as much the spirit as is reasonably possible. I’m wearing teal striped PJ’s which my mum said looked a bit like the ones the boy in ‘The Snowman’ was wearing, and my socks have baubles on!
Yesterday was pretty tough going but not anywhere near as difficult as I thought; I was due to have an intrathecal injection (through the spinal column) but that has been delayed due to shortage of staff.
Here’s the low down of my chemotherapy treatment over the last 48 hours:
The chemicals day 2 (Christmas Eve):
Each morning at about 6:30 the nurse wakes me up to take blood samples before breakfast, they also check my blood pressure, temperature and heart rate to make sure I’ve had no effects during the night (these “obs'” are performed regularly throughout the day. I went through the usual round of intravenous flushes and bladder protecting compounds (along with anti sickness tablets and others that I’m losing track of)
This chemical is from a group of chemicals called ‘monoclonal antibodies’ which can accurately pinpoint specific cells via proteins. In this case, as my cancer is related to ‘B-lymphocytes’ which have a protein spot called CD20, the manufactured antibodies attach to this compound so that my body can break down and destroy these cells. The downside, is that at the same time, they attack good cells (which my body will eventually replenish) this can lead to certain side effects.
Although this is a very effective treatment, it can lead to allergic reactions such as itchy rash and sickness. I was also given an antihistamine to reduce this risk. During infusion, the nurses start the drip very slowly and take observations at 30 minute intervals to check how I’m coping. If all is well, they notch up to the next flow rate and so on. To start with I felt fine, but after about the 3rd hour, I started getting short breath, light headedness and my blood pressure had dropped slightly so they continued at this rate for a while. I also experienced some severe stomach cramps which I’m told could be due to the growth receding and my bowels moving around.
The drip lasted for about 7 hours, and by the end all I was feeling was a little light headed and lethargic.
Finally I was given a bag of cyclophosphamide, this is one of the main chemicals used in my treatment and most of the days of my schedule I will be having this.
This drip lasted for an hour and at the end I was starting to feel quite tired. I watched Skyfall on ITV and then was given a sleeping tablet to help me drop off!
Day 3 – Christmas Day
Today the schedule is thankfully a little more relaxed, I’ve had the usual pre-meds and tests, and I am due to have another round of cyclophosphamide in a moment. This should last for about an hour.
I’m still a little tired this morning and felt a little dizzy coming out of the shower but I feel much less pressure around my abdomen. I opened my bowels this morning too which as ridiculous and disgusting as it may sound, was probably the most comfortable passing I’ve had for weeks. I will regard this as the first Christmas present of the day!
I was left with a stocking of gifts by my mum and have just received a present from the nurses on the ward which is gratefully appreciated. I am also looking forward to seeing my family this afternoon to exchange gifts (I had a bit of a logistical nightmare getting people to buy, collect and wrap presents for each other on my behalf, but I think I managed to pull it off!)
anyway, that’s me for today- wishing everyone a merry Christmas.
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.
Today has been a busy day, I’ve had a bone marrow biopsy, a PICC line inserted (both of which I’ll talk about in further detail under the “procedures” section) and I’ve started the first days treatment.
Over the last couple of days, I’ve had a supply of saline solution, to keep my bladder clear. I’ve had steroids to keep me alert and to restrict the tumour growth a little (this has had the effect of making me feel quite good) and I’ve also had a couple of drugs to protect my stomach lining (all in tablet form).
Due to the size and fast growing (and therefore fast shrinking) nature of this tumour, there are concerns that my bladder and kidneys will not be able to keep up, so I’ve also been given an intravenous drug called rasburicase to help my bladder break down the dead cells to release into my urine.
How does Chemotherapy Work?
Obviously this is a very complex topic, but out of interest, I’ve been talking to the doctors here to learn as much as I can. As I understand, the range of chemicals introduced attack cells as they divide, the more quickly and frequently a cell divides, the more likely they are to be affected by the drug. In our bodies we have some cells that divide and replenish regularly (like your hair follicles) and some which divide much more slowly. Cancer cells tend to divide more quickly, which gives the chemicals a chance to attack and kill these cells in order to break down the tumour. During this time, good cells are also killed which leads to side effects such as hair loss. One other fast growing cell structure is the gut lining and mouth, so I expect to have a sore mouth and bowels as the treatment starts.
During this time, after the first round of treatment, my immune system will be very low. In fact they expect me to have 0% white blood cells and very low platelet count. They call this neutropenia.
Because of this, I have to be very careful about hygiene and washing so as to minimise risk of infection. I have single use toothbrushes, regular mouthwashes, and visitors must wear aprons and gloves.
What are the chemicals and what are they like?
Due to a delay with the PICC line, they changed the schedule slightly but the main chemicals used are as follows:
this lasted for just over an hour, I had some friends over so It seemed like no time at all. It’s mixed with saline solution so is a clear liquid. Due to the location of the PICC line, there’s no feeling or sensation of it going in, and I feel surprisingly well after this treatment.
The chemical in this bag was smaller and lasting about 30 minutes. Again clear in colour. I was starting to feel a little light headed at this stage, with a strange taste in my mouth, but nothing serious.
This third chemical is red in colour and in the smaller 30 minute bag. I was told that this could colour my urine so not to worry!
Each chemical was followed by a saline flush, as due to the nature of the PICC line, the nurses minimise the amount of times that the drip is disconnected at my end. All handling is done with specially packed gloves.
As a safety measure all drugs are double checked by two nurses to make sure the right person gets the right drugs and the outer container is placed over the drip so that it is instantly visible that the drip is a chemotherapy drug.