Chemotherapy Experience

My hair falling out by E.Hale

Your hair falls out because of the drugs in chemo. It took about 2 weeks before my hair started to fall out. First it starts in strands, then clumps of hair and when most of it has gone it goes back to strands. It might be better to shave your head otherwise the hairs get in your clothes and it makes you terribly itchy. It was very upsetting for my hair to fall out but I got used to it in about three days, in fact now I think I look better bald than with hair and so do some of my friends! If you go to school after your hair has fallen out it isn’t as bad as you might think. My friends didn’t mind me being bald, okay they did ask a few questions but that was all. Some of the younger children stared a bit, but I didn’t mind. “So what if I’m bald, it doesn’t change who I am does it?” I thought. So really after your hair has fallen out you don’t mind.

Central line comments, By Steven

Although the benefits of having a central line far outweigh the risks, there are some problems. The main one for me was infection, when the site became painful, red or weepy I had to contact the ward for advice and sometimes needed antibiotics. The risk of infection getting into the body is because the line offers direct entry into the blood stream. To try and reduce the risk of infection I kept the line closed whenever possible by keeping the cap on and entering the line as few times as could be managed.

Scrupulous hand washing imediately before the line is used is my advice. I found it helpful to change the dressings if it became wet or dirty and had to take extra precautions when I went swimming. My line did become blocked and was cleared at the hospital, remember to flush the line whenever drugs are given and flushing weekly when the line is not in frequent use, at first I was worried to see a little blood in the line when it was not in use but was quickly reassured and advised to flush the line with Hepsal.

I like sports and was worried having a line in would change everything so to maintain as normal a life as possible I wore a “wiggly bag” this meant I could still play some sports but not Rugby or Judo.

was 13yrs old when I was diagnosed with AML Acute Myeloid Leukaemia. When I first went into hospital I thought I would only be there for the weekend, but it was over a month later before I got home, for a few days before returning to the hospital.

Home was so far away I thought I would never see it, but I did, I fought to see it and it’s made me a much stronger person. But some times things got me down, I thought I’d never reach the end, ever time I got ill it got worse, but then it got better, and then it got worse again and then better again and after 5 long months I recovered completely, It happened because I had the support of my family and friends and I stayed positive, if I didn’t I was uncertain as to where it would leave me.

Before getting Cancer I loved my hair, always trying out different hairstyles and different hair dye, so when I knew my hair was going to fall out I wanted to make the most of it, so I had it cut different lengths and sprayed it pink for a few days, when it did fall out I had a few wispy bits which was fine at first but then I would be reading a magazine about new styles this really got me down, but this didn’t last long as I arranged to have a wig which was sort of fun to choose as it could be any colour or style I wanted, I also got many different hats, and bandana’s which I would normal only wear when I was away from the hospital where people didn’t know me, sometimes I did just want to get rid of them all, when my friends would be talking about new hair styles, which did depress me but knew that if I was patient those days would be back.

There was one thing that I could continue to do and that was to do lots of shopping for new clothes as through the treatment my weight changed which meant most of my clothes didn’t fit, so I kept up with the fashion, for the times I was out of hospital.

While in hospital I spent a great deal of time feeling bored but that changed when I was encouraged to do fun things to keep busy, it makes the time go so much quicker, which at first I wanted to keep to myself, but it helped to talk to someone else the same age, I spent a lot of time doing my nails which was fun especial when I could do it with some of the younger girls it made a lot of difference.

When I was told it was my last treatment I was really looked forward to getting my wiggly (Central Line) out, then I would know I would be back to normal, but I was also scared it had been a long time since I had been me.

I didn’t always feel that I could do what I wanted to do with my friend, even thou they were a great, I had spent so long away from having a social life, which I had missed greatly, but I knew I would get it back, and there would be no stopping me.

I still cried over things like my hair, the hats and other things but I knew there was light at the end of the tunnel, I knew I still had to work hard to reach it but I was going to do it, if you don’t work hard you’ll never get there. I had my good days, I had my bad days, when I had been really ill and had stayed in bed and never thought I would ever get out again, but I did and it was such a relief to know that I was going to have a life again after nearly 6 months of being in hospital, and because of that

NOW EVERY DAY IS SO PRECIOUS TO ME.

Kate’s Experience

My name is Kate I was 14 years old when I was diagnosed with Leukaemia, when I was told I had Cancer I was scared and thought I might die. The doctors explained I needed chemotherapy and this would continue for nearly 2 years I would spend some of the time in hospital but there would be a time where I would have most of my treatment at home, they also told me that some of the chemotherapy would make my hair fall and steroids would make me put on weight. I was in hospital for five weeks and had various things done to me, which I had never heard of before, like Lumber Punchers & Bone Marrows. I had a Central Line [Mr Wiggly] inserted under a General Antistatic for my chemo; it’s better than having lots of Needles.

Before I was diagnosed I had not been getting on with my Mum, but we soon made up. Over the last few months Mum and her boyfriend have been my best friends they have been there for me all through my illness.

Losing my hair

At first my hair was coming out slowly, just strands, as the chemo got stronger it came out in big clumps. The nurses advised me to have my hair cut short then it would not be such a shock when it all came out. I got very upset when I lost my hair because I took such a pride in my long hair and I thought I would be laughed at. Within a month my hair was gone and I got a wig, it felt weird having hair again but it was good because I knew people would not stare.

I got embarrassed because of my size when I was taking the steroids; I thought everyone was staring at me. The weight came off very quickly about two weeks after stopping my steroids my weight was back to normal.

The best thing about being in hospital was just before Christmas I was given tickets to go and see the Pantomime, I have also had the opportunity to go and watch a football match.

Kate 14yrs.

I had to have six lots of chemotherapy. On my first admission I had a lot of injections, one of them was an anaesthetic for my Hickman Line to be put in. I had my chemo through that; they also took my blood from it, it is very helpful to have one, you don’t need to have to many injections, after.

On my first lot of chemo I felt sick a lot but was only sick a few times. I didn’t feel hungry at all; when I got up some times I felt dizzy and didn’t have much strength.

On my second I felt a lot stronger and ate a little bit, I still felt sick but not as sick. I was told that if I drank something fizzy and clear lemonade I wouldn’t feel so bad. It worked.

My third chemo was basically the same, by my fourth chemo I hardly felt sick and I felt fit and well which I at one point I didn’t think would happen.

Just before my fourth lot was due, I got a Very high temperature which was different to other temperatures, this worried me but the doctors thought that I might have infection in my Line, I did, so they gave me antibiotics through my line to kill the germs, this time it was going to take a few weeks so my chemo was to be given after the infection had gone.

Before every chemo I had to have a small injection in my arm for a kidney test so be prepared!

My experiences by Chris. 14yrs

After suffering short, sharp headaches, I was diagnosis with a Brain Tumour. I’ve had Surgery, Radiotherapy and Chemotherapy. Four days after the diagnosis, I spent 8hrs in Surgery and left hospital 5 days later. I’ve had 37 appointments at the radiotherapy centre, 20 minute 5 days a week. I had a central line put in before the chemotherapy, which the nurses use to put the chemo through and do blood test, saves having a needle put in every time.

I’ve had lots of MRI scans, X-rays, Hearing tests and Kidney test. I’m mainly a day patient, but because the chemo affects your appetite, I’ve lost weight, so they put a feeding tube in through my nose to my stomach and I get feed some liquid feed overnight. I stayed in hospital for a few days so my mum & dad could learn how to use the pump. The doctors would adjust my chemo a few times during treatment if it affected me in any way.

I have had a few bad experiences but the nurses and my mum and dad always have a smile on their faces to help you through every kind of treatment.

Steven. 15yrs old

My name is Steve I am 15 year old with Leukaemia, and my treatment is aimed at a cure, so complete remission may be achieved, even if this is not possible I hope for periods of good health. It is tempting for me to judge my future on the good or bad response of others, I say to my self everyone is an individual and everyone will have their own response to treatment. It has helped me to get help from the Leukaemia Foundation they have a wide range of support services.

Things I needed to remember were to maintain good personal hygiene eat a well balanced diet and drink plenty of fluids. To minimise the risk of infection all minor accidents such as cuts need prompt attention. I had chemotherapy treatment with different drugs all having different side effects, nausea and hair loss were the worst, my treatment is for 3 years, so far a lot has already changed in my life, and through out my treatment I will be monitored for any long term effects.