Exactly five years ago today, my life changed! I was sat with my uncle, got called up, and walked into a room to see my parents trying to smile even though it was obvious they had been crying.
I was told that I had Leukemia, Acute Lymphoblastic Leukemia (ALL) to be exact. It wasn’t a huge surprise, as I’d been transferred to that hospital because they wanted to do some tests to rule out Leukemia, but as it turns out, they didn’t.
That was the start of 3 long years of chemotherapy and one hell of an experience! I do know look back on it as a good experience, even though I obviously didn’t think that at some times when going through it. Looking back now I wish I had kept some form of diary or private blog about it all, as my memory has never been great but I’m sure all the chemo has made it worse! That’s my excuse anyway! ๐
I had to take a lot of tablets, mostly in the fist year, upto 30 a day over the course of some days! Particularly the five days of every month when I was on steroids, I hated them as they seemed to really affect my sleeping patterns. I didn’t sleep as well for a start, but when I did eventually get to sleep, I found I was having really weird dreams where I felt I was always trapped in bed and other weird, but similar situations, but as soon as the steroids wore off a few days later I was fine, until about 2 weeks later when I was on them again!
Apparently I was a bit of a test case as the hospital, as I was older that most of the other patients, quite a few student nurses etc attended my appointments and asked me about my treatment etc. In the first year, I spent about 9 months in hospital! When I was allowed home I normally ended up being back a few days later with another throat or chest infection.
Near the beginning of the chemotherapy, I had a port-a-cath inserted to save having to have lines put in all the time. It’s basically a domed structure placed just beneath the skin, which goes into a vein leading to the heart and when they need to use it, it is accessed with a needle. Because the same area of skin is pierced by a needle so often, the skin becomes desensitised and you can’t even feel it go in anymore!
The hospital I was at had never seen a port infection, as they were quite rare. In the first few months of my treatment, I had numerous infections which led to the port being removed, with another one being put on the other side of my chest. A few months later that got repeated infections and was also removed! I was just trying to help! They hadn’t seen a port-a-cath infection so I showed them two!
They decided not to try a third port-a-cath but instead went for a Hickman line, which is basically a tube constantly sticking out which is connected to a vein going direct to the heart. These are more prone to infection which is why they didn’t give me one to start with, but I ended up keeping it in for 18 months without many problems!
With only about a year of treatment left they decided not to put another line in, especially with my habit of getting them infected! So I had the remainder of my treatment through canulas in my hand. Around that time I had some other complications, I didn’t think I’d been helpful enough showing them the port-a-cath infections they”d never seen, so I got a hard, warm rash on my leg to try and confuse them! ๐ It worked! I went to see a dermatologist and eventually they diagnosed it as Erythema nodosum, which they later thought to be caused by some of the chemotherapy tablets I’d been taking for the past 2 + 1/2 years!
They had to take me off the tablet which was to try and protect against some particular chest infections which with my low immune system could have been not good to get. The only alternate to the tablets was to inhale some disgusting liquid though an oxygen mask for about half an hour. I only had to have it about 6 times, a few weeks apart, but the first twice it made me physically sick when I breathed it in, but no-one was supposed to come in and help as no-one was allowed in the room whilst I was having it and no-one was allowed in the room for something like 6 hours afterwards as it was an irritant! But they let me breathe it in! ๐
I’ve been told there were a few times when they didn’t know if I was going to pull through or not, but obviously I don’t remember those occasions as I was so ill, but I’ve been told at one point I was on two drips, one of fluid and one of antibiotics, constant blood pressure and heart rate monitors, with 2 nurses and 3 doctors all in my room, basically just hoping as my body was just shutting down and they didn’t have anything else they could do! Obviously I pulled through and I never even knew about that for a few years when my dad told me one night!
I’m glad it was me that got it and not my sister for sure! She’s seven years older than me, but I don’t mean to sound cocky when I say it, but I don’t think she would have coped very well. She’s hated needles her whole life, almost cancelled holidays when she realised she’d have to have injections! As you can imagine over the course of 3 years I saw quite a few needles!
Everyone always asked me how I kept such a positive attitude to it all, joking about with the staff and pulling out my hair once it started to fall out. I never could see the point of getting upset or annoyed, how was that going to help? It was happening so I had to get on with it, no amount of sulking, whining or complaining was going to make it all go away! Two of the male nurses on the ward were a great laugh, they ended up having a competition to see which of them could find me the girliest or babyish bed covers! I had Teletubbies, Barbie, Thomas the tank engine and loads more!
There were only a few times over the whole three years where I felt a bit upset or annoyed and that wasn’t even because of being ill or the treatment or such, but just because it had changed my life, for example I had to restart my college course because I missed so much of the first year, I was gutted as I was leaving my mates, but obviously I made new friends with the group I started with the second time. I missed a few mates parties from either not feeling upto it or actually being in hospital. Two out of the three New Year’s Eve’s I was in hospital!
I’ve now been finished treatment for two years and I’m now in remission, not sure how long I stay in that state or if I do forever, but basically I’m in the clear atm. As with anything there is a chance it will come back, but I’m not going to worry about it or let it affect me, if it does come back I’ll worry about that at the time!
I think overall it was one of those experiences I am glad it actually happened, I met some amazing people at the hospital and it sounds so cliche, but something like that really does make you think about life and your family and friends and how important to you they really are. The way some friends reacted to it all, by not really contacting me at all, at first I was a bit upset, but then I realised I would be exactly the same if it was them, scared to make contact, but then the way some of my mates were there for me was amazing.
One friend in particular I will certainly never forget! The minute she found out about me being ill, she left college, got taxis, buses and trains to come and see me, went to the previous hospital I was at who directed her to where I was now and then I only managed to see her for an hour or so as she then had to leave for the trip back home! But I still can’t believe to this day she went to so much effort!
Sorry for such a long post, I think it’s just one of those things I wanted to get out; I’ve never really spoke about it all a huge amount, never really wanted to before.