Sunday, 13 January 2008

RCHOP and Losing my Hair

So I started on my RCHOP treatment. After my first round I managed to visit Uni during fresher’s fair. I found it really hard being away from uni during fresher’s week as I had planned on being an auntie and helping first years move in etc. Freshers fair was great, I saw lots of people, sat in einies (student pub), went to Gosta (pub), generally a really good day. However I was exhausted after it and slept for the rest of the day and night until the next day. It certainly made me realise how much my life had changed! A few hours with friends and it was like I’d done a 2 day hike or something! The picture shows me in one of my wigs.

Anyway 3 weeks after my first lot of RCHOP and when my second round was due I felt as bad as I had done when I was admitted to hospital. My breathing was bad again I was back to sleeping propped up in bed. I went into the hospital and they were slightly concerned though not too much as it was only my first round. They basically thought the tumour was being shrunk down initially but then it was growing back too quickly before the next lot of treatment was given. My 2nd round of treatment was bought forward by a day and I was changed to a 2 weekly cycle. This was the first time it was mentioned that Dr. Smith, my consultant had weekly webcam meeting with consultants from Derby and Nottingham and that he had corresponded with them about my case. They all agreed a 2 week scan would get ‘one foot in the door’ and hopefully cause a response in the tumour.

Because I was now on a 2 weekly cycle my blood counts would not reco
ver in time by themselves. Normally in a chemotherapy cycle your blood counts drop after about a week and are low for a few days or longer depending on the strength of the chemo and this is the time that you are more prone to infection. If the counts become dangerously low you may have to go into hospital and you may be neutropenic which is where you have virtually no immune system. After a few days they will start to recover and are usually good enough for the next round of chemo. In order that mine would recover more quickly I had to have GCSF injections, you can do these yourself but I have never been able to bring myself to do it! So the district nurse came out to do these, I had Julie most days but some days some other nurses would come. They were all lovely and when we don’t’ need them to come out for a while they often ring to see how I am. Thats me in my hat in the pic.

Anyway GCSF injections help your white cells to increase and so helps prevent infection. They aren’t that painful, you get used to them! The only bad thing is that they cause aching in the lower back and I get like sensitive skin all over my upper body. It has got quite painful in the past! So I don’t particularly like them! However pain is a good thing as that is a sign your bone marrow is making plenty of cells!

After my second round of RCHOP I improved slightly. I was still sick but the side effects weren’t too bad. My mum and dad were both back at work and I was at home, some friends came to visit but most days I spent watching TV and on my computer. It was boring but I thought if I could just get through the next few months I’d be able to start doing more, maybe go back to work in the New Year, go to visit friends at uni.

I had my 3rd lot of RCHOP and things started to go really well. I went shopping in Derby with my mum and dad, walking round for 2 and a half hours, and I also went into town on my own with a friend and went to the pub, a far cry from how things had been. So in general things were looking up….!

LOSING MY HAIR

One of the main side effects of RCHOP is loss of hair. I have to say when I was first told I wasn’t particularly bothered about it, I thought that I’d be able to try loads of different styles of wigs and saw it as a positive thing as much as I could. I picked 3 wigs from a catalogue and I was feeling ok about it.

However as the time when it was likely to come out got closer I got more apprehensive, I started researching on the internet about how it fell out and how long it took and would I just wake up one day and find all my hair on my pillow…I couldn’t find too much information, people tended just to say ‘ I lost my hair’ but no details.

Anyway one night I sat there and I ran my fingers through my hair and a few
strands came out in my hand. I knew then that it had started and I was a little bit upset I have to say. It makes everything real when your hair comes out. Anyway over the next 2 weeks I lost the majority of my hair. Whenever I brushed it a fair amount would come out, I went in the shower twice a day sometimes to wash it and get it out. My mentality was that once it was out, it was done and it would be easier to deal with it. I had been told by the nurse to do this as it would be easier. I had my hair cut short so it was easier anyway and I would stand over the bath and just pull at my hair. It came out in clumps…. The picture shows me when I was losing my hair, it used to stick out and not fall back into place! It also was sore when it was coming out, like I'd left it in a ponytail for too long and tried to take it out. it just stuck out at all angles and wouldn't lie flat!

In a way it was funny, weird as that sounds, me and my mum had quite a laugh literally pulling my hair out! Crazy as that sounds, made it easier anyhow. Anyway for a long time I had a covering of like baby hair, I wasn’t bald though you could see my scalp and I would always wear something to cover if it if I went out. But in the last few weeks I have finally lost the last bit of it and now have almost like a skinhead! Some like stubble is growing I think, but I have virtually no hair now, I look bald for the first time! Which was really weird at first, I didn’t like it but I’m used to it now and don’t care!

With regards to my wigs, before I lost my hair I thought I would want to wear them all the time and I would hardly ever take them off but when the reality came I found them too itchy, they made my head sweat and I wasn’t all that keen on them. The first 3 I ordered, 2 of them were fine but the 3rd one I didn’t like so I swapped it. At first I didn’t like trying my wigs on, I found it weird but it was ok once I got used to it and I did go out in them a few times. However now I have pretty much given up with them. I wear headscarves, bandanas and Buffs which are like pieces of material that you can fold into different styles and wear on your head. They are so comfy and look pretty cool too! Alternatively when I’m sat round the house and if it’s a bit warm especially I’ll wear nothing! Go for the natural look. I’m not ashamed of it, I was a bit apprehensive about showing people but I’ve decided now that I shouldn’t be really and everyone has reacted fine and stuff so its ok! I know I look different but I can’t help it!! The picture shows me in my red wig.

I’ve lost my eyebrows too although they have started to grow back a bit in between treatments but I have a good eyebrow pencil that I use to draw them on. I’ve also lost my eyelashes and some of the hair on my arms and legs. I have no underarm hair. So yeah hair loss isn’t limited to your head! It pretty much affects everywhere!! Thats me in a buff recently.

So I had my 3rd RCHOP and things were going well…..however they soon took a turn for the worse when I got pneumonia…..I had my fourth RCHOP in hospital while I was recovering and it was delayed by a week….following my fourth RCHOP I had a scan to check how things were progressing and to see if we needed to change anything….

3 comments:

R chop chemotherapy side effects said...

R-CHOP is a type of chemotherapy treatment used in non-Hodgkin’s lymphoma. The reaction of r chop chemotherapy differs from person to person. It also has many side effects like it could lead to fever, weak, headaches, skin rashes, lower red blood cell, hair loss and many more.

Earl Flournoy said...

I see that you were having fun with your wigs there, Melissa. Isn't it good to be just anybody you want with fake hair? You can even be a celebrity for a day! That's what my wife does with her synthetic wigs. Anyway, I really hope that you're better now, Melissa. Keep on smiling!

John said...

I think this is a really great post. I also have DLBCL, but I'm an old man at 74. I've had 2 R-Chop treatments so far at the Portland Oregon VA hospital. I'm always tired and think maybe it's because the treatments have lowered my Blood Pressure. My Lymphoma is only in my Bones, especially in left hip, where it's eaten a hole 2 inches by an 1-1/2 inch. The R-Chop has made the pain in my bones go away, but just tired. I gave myself a haircut with some clippers I bought at the store, and now my head looks like Telly Savalas. The Dr. said the hair would grow back, but not in places it wasn't growing before. LOL. Anyway, I think this girl wrote a really good post. It makes us think of the things that are really important, including hair and love and smiles.