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.


Procedures – a catheter

I thought I’d talk about some of the procedures that I’ve so far been through and explain a little about what they’re used for, why and more importantly what it feels like.

Today, I’d like to talk about the Catheter, anyone who’s been in hospital for a few days will have experienced these, but for me it’s a fairly new experience.

What is it?

Top of wrist

Top of wrist

A catheter is a small tube with a valve that is inserted into a vein usually below the elbow.

they can be placed at any point, usually where the larger veins are, in my experience (I’ve had about 8 inserted over the last couple of weeks) I prefer them to be in the forearm as it’s easier to write and shower than when it’s in the wrist or elbow.

They’re inserted using a needle which is relatively pain free (a small scratch) which is then removed leaving a tube in place. It is secured using a waterproof adhesive label, although this sometimes need replacing after a shower.

Underside of forearm
Underside of forearm

What does it do?

A catheter is used to apply fluids (I’m currently hooked up to a saline drip to make sure my bladder is fully flushed through ready for treatment) it can also be used to apply medicines such as ‘intravenous paracetamol’ which is more potent and fast acting than tablet form. It can also be used for taking blood samples rather than having to puncture the skin several times.

What are the side effects/downsides?

Sometimes if they’re inserted or removed a little quickly they can bruise is the skin as a little blood is let out under the skin. Otherwise, I’ve experienced no worrying or painful experiences, the medical nurses apply these regularly and can help with any concerns.

Bruise from removal from a small vein.
Bruise from removal from a small vein.

The downside to these kind of catheters is that they need to be removed every two to three days as they can begin to get clogged up and uncomfortable. Between each application of fluid, the nurse will flush the line with fluid to reduce this risk, but as a precaution, and for the ease of the nursing staff during a long term stay, they may decide to insert a PICC line or a Hickman line. I’ll be having one of these inserted tomorrow, so I’ll tell you how it goes 🙂

Saline solution
Saline solution