My Treatment: part two.

Me receiving my first round of DA

So I know I said that I was going to split my treatment blog posts into three posts (Hickman line, Chemotherapy and Stem Cell transplant) but as I was writing the second entry it soon became evident that there was too much information to condense into one readable entry. I have therefore decided to break up the post about chemotherapy into several smaller posts for the sake of depth, brevity and sanity. This post covers my first round of chemotherapy and my experience of DA and its side effects.

Chemotherapy round one - DA

On the evening of Friday 26th September 2014 I started my first round of chemotherapy. The protocol was called “DA” which is the standard induction chemotherapy given to AML patients. It was a 10 day course of a mixture of two drugs: Daunorubicin and Cytarabine (or Ara-C, which is where the acronym comes from). The Cytarabine was an IV infusion given twice a day for the 10 days, and the Daunorubicin was given as a bolus through a fast-running infusion on days 1, 3 and 5. The Daunorubicin was bright red in colour and turned my urine bright pink for about a week afterwards! 

I didn’t experience many side effects while having the actual chemotherapy. As I was an in-patient for the whole treatment, my nurses did a great job of managing any sickness or nausea with regular anti-emetics (anti-sickness drugs). I was also on a lot of other prophylactic medication (i.e. to prevent nasty side effects or illnesses) such as anti-virals, a disgusting anti-fungal drink called itraconazole (shudder), and I was given a concoction of mouthwashes to prevent pain, ulcers and sloughing of the mouth and throat.

In AML, cancer cells divide and grow rapidly. The way the chemotherapy works is by targeting and killing off the rapidly-dividing cells in the body but as there are other non-cancerous rapidly dividing cells in the body, it attacks these too. These cells are found mainly: in the bone marrow; in the gastro-intestinal tract, from the mouth, throat and stomach, to the small and large intestines and into the rectum and anus; and in the hair follicles. The side effects of chemotherapy reflect this, with the commonest being mouth and throat pain, sickness, diarrhoea, anal and rectal pain, and hair loss.

After the course of chemotherapy was complete, I was left with basically no immune system. My white cell count (the cells responsible for fighting infection) was zero. Luckily my red blood cells and platelets could be sustained through regular transfusions, but this is not the case with white blood cells. So I was eventually transferred back to a private room where everything around me had to be extremely sterile, my visitors had to be limited to close family and friends, and they had to be very careful about cleanliness. If anyone had so much of a snuffle my Mum banished them, and she would occupy herself by endlessly cleaning everything around me. 

But despite my mother’s excellent cleaning skills, I developed a number of nasty infections. The sort of infections you develop after chemo are unlike any other infections I have had in my life. Like everything else associated with AML, their onset was rapid and their effects were profound. You start feeling a little unwell perhaps, then within a few hours you start to feel cold and begin to shiver, you temperature shoots through the roof, you feel sick and may vomit, then the shivers turn to rigors and you can’t control your teeth chattering and the whole bed starts to shake. This, dear reader, is when you discover that paracetamol is actually the most amazing of medicines. Pre-cancer, I didn’t think much of paracetamol. I thought it didn’t do much and was almost akin to a placebo. But give someone with a post-chemo infection some paracetamol and the shivers stop, the temperature comes down, the coldness abates, and you feel better. Magic stuff.

The first infection I developed was in my Hickman line on 6th October on the last day of my DA regimen. I was immediately started on IV antibiotics and the day after my Hickman line was removed. However my temperate continued to spike until around 10 days later when it finally started to settle. My Hickman line was replaced on 17th October, but unfortunately by the 20th I was having raised temperatures, rigors, flu-like symptoms, etc all over again. This time the infection site was where I had had a cannula in my hand to administer my medications and transfusions while my Hickman line was out. The skin around the entry point developed a cellulitis and became red, swollen and very painful.  

But by far the worst side effects I had related to problems with the least dignified end of the gastro-intestinal tract. In hospital you get very well acquainted with your bowel movements, and talking about your toilet habits become a regular and unremarkable thing to do. I know the Bristol stool chart by heart, and still check to ensure I am not too far astray from a decent 4. As I said though, I had some pretty sever bum-issues. During those first few weeks, I was in excruciating pain every time I needed to open my bowels and for around half an hour afterwards I could barely sit down. I had to lie down for most of the day with a pillow underneath my back or between my legs. I actually had issues on and off with that area for the majority of my treatment right up until after my stem cell transplant. I was sent for MRI scans and CT scans, and at one point it was thought I might have to be referred to a specialist and have surgery though thankfully that never came to fruition. 

By the end of my treatment, I had lost count of the amount of people who had taken a peek at my arsehole. I remember saying to my mum one day that I wouldn’t have cared if the cleaner wanted to have a look too, if he could do something about it. I'm aware that it’s the sort of thing that people are naturally unwilling to talk about, however in the interest of complete transparency for the sake of whoever might be out there reading this, suffering, and thinking they are alone, I am going to be completely candid. And anyway, I have been somewhat desensitised as to what constitutes private or intimate details due to my midwifery training. Essentially, I first developed an abcess on my anus which was incredibly painful. The pain lessened whenever my white cell counts were up between chemotherapies, but it never disappeared 100%. I also suffered with haemorrhoids that would bleed profusely, and general inflammation of the rectum and anus. The pain after moving my bowels was so relentless that I would be terrified to go, and would pace the room in agony for up to half an hour afterwards. I developed a fissure (a tiny but excruciatingly painful tear) on the sphincter. Fissures are actually really common among the general public, but like I said, we don’t really tend to talk about our bums. Since I have discussed mine fairly openly, I have discovered that quite a few people I know have suffered with them too (don’t worry, I’m not going to name any names!). After my third round of chemo, the inflammation and breakdown of skin around that area was so severe that my doctors thought I might have a fistula which is where a small channel appears between the rectum and skin alongside the anus. I had an MRI which showed that there was no definite fistula, so luckily I did not require surgery. So to anyone who has had to deal with any of this, or is currently having any of these issues - you have my complete empathy and compassion. I recommend moist toilet wipes, a hand held mirror and detachable shower heads on the “cool” setting. Nowadays, I still dream of my pre-cancer bum but things are almost back to normal.