Day 6&7 – rest days

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 ūüôā ).

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…)

Me in a Harry Potter dream sequence (photoshop fun!)
Me in a Harry Potter dream sequence (photoshop fun!)

On the top of the list of possible side effects when signing my consent was the frustratingly contradictory statement:

“Diarrhoea/Constipation”

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!

Day 4&5 Chemotherapy

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:

The chemicals:

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!

24hrs Urine
24hrs Urine

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 pur√©ed 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)

Day 2&3 Chemotherapy

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!

Xmas PJ's
Xmas PJ’s

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)

Rituximab

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.

Cyclophosphamide

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.

Peripherally Inserted Central Catheter (PICC line)

What is it and when is it used?

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.

PICC line inserted at right elbow.
PICC line inserted at right elbow.

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.

Day 1 Chemotherapy

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:

Cyclophosphamide

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.

Doxorubicin

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.

Vincristine

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.

Chemotherapy drip
Chemotherapy drip

Procedures – Bone Marrow Biopsy

Today I’ve had a bone marrow biopsy, I was a little nervous about this procedure as it’s fairly invasive in it’s nature and I expected some pain or discomfort. I’m fairly slim (apart from the growth in my bowel which makes me look like I have a beer belly!) which means that the bone in my hip where they have taken the sample is fairly close to the surface.

The reason for taking this sample is that as my form of cancer is related to white blood cells, there is a chance that the bone marrow has been infected. From this sample, they can asses how far these cells have migrated.

The nurses and Doctors were fairly reassuring and helped to explain each stage, but I thought I’d explain the procedure from my point of view. I should also add that experience will be different for different people so please talk to your specialist if you have any concerns.

step 1 – anaesthetic.

The anaesthetic is applied first to numb the area and the soft tissues that the biopsy needles will be passing through.

obviously the needle is fairly large as they need to insert one needle to puncture the bone then another to collect the sample. The anaesthetic is applied using a needle which gives a sharp scratch. Due to the amount of tissue between the skin surface and the bone, this needle is quite long and as it went in and as the liquid was injected I found this a little uncomfortable, but this discomfort was probably more tolerable than I would expect from a dentist.

step 2 – bone marrow aspirate

this first step is to extract a sample of fluid from the bone marrow. From me they took 2 vials (the same as for blood tests). The sample is taken with a long needle which passes straight into your bone. Being a long distance runner, my bones are fairly hard which means the needle took a lot of effort to puncture the bone. The first part as it passed through the tissue was fairly pain free and when it reached the bone the discomfort was tolerable. Rather than a stinging sensation, it felt more like a numb throb as I felt the pressure on my hip and the liquid drain. The nurse explained that sometimes as the pressure is released there can be a bit of discomfort, which I experienced as a numb throbbing perhaps warm sensation.

at this point, the nurse also prepared some slides so that the liquid can be assessed under the microscope. What he’s looking for here is lumps of bone marrow which can sometimes be mixed in with the blood.

Slides, samples and biopsy.
Slides, samples and biopsy.

step 3 – trephine biopsy of bone marrow

This final stage is to collect a plug of bone marrow for further testing. As mentioned before, my bones are fairly hard which means that this process was a little uncomfortable for me. Sometimes this can be performed with a small hand drill but talking to the nurse, he preferred to make the cut by hand as the drill can be a little too rough and also can give poor samples. This next needle is slightly larger than the first and is pushed through the skin using a slight and gentle turning motion to get through to the bone. The bone is then cut by turning the needle and pushing at the same time to collect the sample. The sample is taken through the tube and pulled out in one piece as a plug. (A bit like uncorking a bottle of wine!) From my experience, although a little uncomfortable, and lasting slightly longer, this was no more unpleasant than the first procedure. And I will honestly say that having teeth removed is much more uncomfortable.

Biopsy needle
Biopsy needle

step 4 – dressing and healing

Once complete, the nurse applied pressure to stop the bleeding and applied a dressing. I was advised to sit for a few minutes to assist with the pressure. The procedure was performed about 2 hours ago as I write this and although I can feel that I have a wound, the pain is no more than a dull sensation in my hip and a bit of stinging on the skin, which could easily be where hairs are trapped in the dressing adhesive!

so in summary, the procedure is about 15-20 minutes long, and although uncomfortable, I will be much less nervous going into the second assessment after my first phase of Chemo.

Non Hodgkins, B-cell, Burkitt’s Lymphoma and me

Today is the 22nd of December, the shortest day of the year, but for me the start of a long and scary road to recovery. I’ve been ill for several weeks now with a range of different diagnoses including appendicitis, chron’s syndrome, colitis, and more. On Friday (just on my way out to get a hair cut and go Xmas shopping with my Dad), I had a phone call from the hospital telling me that they’d like me to come in urgently due to a review of biopsy results.

Not very good at smiling!
Not very good at smiling!

Until this point, I’d been told by a number of people that being young and healthy, it’s not likely to be anything serious, that the risk of Cancer was low, and what ever it is will be treatable.

Although not panicking at this stage, I was now beginning to think that it was something more serious.

I wanted to track the events of the coming days for two reasons:

  1. To help people in a similar position as me to understand the process and prepare themselves for this technically complex, whirlwind adventure that I’m about to face.
  2. To act as a diary of events for my own posterity and to help me keep my sanity.

I hope that not only friends and family but others who are also affected by this condition can find something useful in this series, and if I’ve made a positive impact on one person, I have achieved my goal.

Diagnosis and Symptoms.

As far as I can tell, for these kind of tumours, the symptoms generally present themselves as physical swelling. Due to the location of my tumour and the fast growing nature of it, it was restricting my bowel movements which meant that I was struggling to digest food, open my bowels and a general feeling of sickness.

One strange symptom which occurred but only for a couple of days was night sweats. I initially thought I’d wet myself as the sheets and duvet were sodden. I then realised that I was dripping with sweat even though I was cold. Since having steroids, this symptom has gone.

In my case (being fit and healthy) the diagnosis was a fairly slow process. I first saw the GP about the swelling, who suggestive it could be my appendix due to the location. I was then referred to a gastroenterologist who again felt my stomach and suggested that as I was in fairly good health otherwise and the pain was not too severe, it could be something like Chron’s disease. So he referred me for a CT scan so they could get a better look.

About 4-6 weeks growth.
About 4-6 weeks growth.

While waiting for the CT scan, I became a little more unwell and pains, cramps and discomfort were getting more severe. I reached the point where I couldn’t eat any more and was being sick. At this point, I phoned 111 who sent me to an out of hours GP at 11:30 pm Friday 12th December. He decided to admit me to the hospital for safety. I spent about 5 days there where they kept me under observation and pulled my CT scan forward. The scan results were inconclusive especially noting that I had no visible signs in my blood tests, so they then performed a biopsy of the mass to determine it’s nature.

By Wednesday I was feeling a little better and the pain had been brought under control using pain relief and eating a purée diet to help food pass through my system. They decided to send me home over Christmas so they could identify and plan my treatment over the break with a view to starting in the new year.

The biopsy results came in on Friday 19th, and I was called into Worcester Royal Hospital which has a specialist oncology team who have been looking after me ever since.