Wednesday, 23 November 2011

Starting the treatment

I forgot to mention in an earlier post, after my diagnosis, he wanted me to go for a PET CT scan, which is a very specialised scan and injects a radioactive substance into your blood and can detect the activity of the tumours and show you exactly where they are. After having the injection, I had to lay down for an hour for it to kick in before I could have the scan. Apart from the radioactive injection (to which I was fairly disappointed when I didn't glow after) it was very similar to the previous CT and MRI scans I'd had before. The results from this were sent straight to the haemotologist who discussed them with us. There were tumours down the whole right side of my body, between my neck, chest and my arm-pit (right near where they removed the lump). It had been classified as stage 2a which was not the worst, but not the best. The Dr also told us that the cancer hadn't spread to my bone and bone marrow (some good news).

I had originally been up to the chemo ward before for a blood test and my bone marrow aspiration. It was not a place I would have chosen to go back to too often, as from an on-looker, it seems very depressing. Lots of bald people hooked onto drips. Now that I'm used to it, and fit in quite nicely was the bald, I quite enjoy going and feel very relaxed there.

From the three steroid infusions which I had previously undegone (from the dermatomyositis), I kind of knew what to expect from the chemo, being hooked up to a machine and waiting for the drugs to go in, so it wasn't such a traumatic and unexpected experience. Every time I have been, which is now four times, I have been the youngest there by quite a few years. Before each chemo session, I have to have a blood test to check the levels in my blood are ok to proceed with the chemo, because if not, then they have to delay it. So far they have been fine, apart from when the nurse misses the vein with the needle, which is a right pain, but nothing you can do about it unfortunately!

A lot of people have been asking me, so what is chemo actually like? And it is how you picture it in the films. Lots of ill looking people, hooked up on machines, waiting for their drugs to pour in, so that they can continue with their lives. Although, it has to be said, for a pretty depressomg place, the atmosphere is quite buzzing! The patients (and their visitors) are always talking to eachother, the telly is on, hot drinks are always being made, chocolates and biscuits are always being passed around (my favourite bit) and the nurses try to make it as pleasurable experience for the patients as they can.

My first chemo session went really smoothly. They administer four different drugs (all with really long, complicated names) through the IV drip, plus anti-sickness-plus saline (to help them all flow through) and I have to take steroid pills as well. I'm also lucky enough to go home with a nice collection of pills (anti-sickness, steroids and a couple of others of which I'm not sure what they're for...) plus an injection which I have to have 24 hours after each session. It starts off with about 14 pills a day for the first week, then reduces to about 3 or 4 towards the end of the two week cycle. I did have to buy a pill pot (made me feel very old) to keep them all organised as they all have to be taken at different times of the day... I didn't feel any symptoms between sessions one and two apart from tiredness, but I was feeling very tired anyway, as fatigue is a common symptom of dermatomyositis.

Session two came around very quickly. I sat next to a girl, who turned to me asking my age, saying that I was the youngest person she had ever seen there before (she was in her fifth cycle) and was only 26. We got to talking and it turned out (completely unrelated to her cancer) that in her final year of university, she sleep walked out of a fifth story building, breaking both her legs, her arm, jaw, cracking some teeth and God knows what else! Either she had done something incredibly bad in a past life or was just extremely unlucky! Amazing the people you meet in chemo! I remember saying to someone, that I had a weird feeling my hair was going to fall out after my second chemo session. And noch, it did. It started to fall out quite quickly and it patches. At first it looked like bad recedence and that it was thinning, but it started faling out fast. Losing my hair didn't seem to bother me too much, as I think it's something you expect to happen with cancer. The only thing that slightly bothered me now, was the fact that I looked like I had cancer. Although I'd now known about it for almost a month, you coulnd't tell, but now looking like I have cancer, felt worse. When the hair started to fall out, it was incredibly itchy, prickly and uncomfortable. I therefore had it all shaved off (for the first time I'd ever had my head shaved...) to a number one. It did look slightly better, albeit quite aggressive and thug-like, but more under control and cancery. I was also not used to having short, thin hair as my hair was always really thick and jewfro-esque.


  1. hi zand, eli here... you write so beautifully and eloquently.. its amazing to see you write with such humour as well. sending you lots of love! xxxxx

  2. Hi Zand
    I am enjoying reading your blog. Isn't it funny about how 'easy' it is to write about cancer; how matter of a fact we become about it all and how it slots into our lives. 6 years down the line it does recede a bit but unfortunately it is a label. We all learn to live with it though. You will too!
    The hair falling out isn't nice, I have seen you look more handsome but it will get better and you will end up with even more curly hair than before.
    Keep going, keep writing and you will get better!
    lots of love from your best Auntie Susan
    ps I am still writing my blog 4 years on!