Hey,

Totally get where your coming from!

What have you been dignosed with?

If your interested check out my blog: www.thefightofourlives.wordpress.com

feel free to message me :)

Rachael xx

Hi Battling

Re the wig - you can get a wig on the NHS and they are very good these days with quite a few styles to choose from.  I was treated at The Christie Hospital in Manchester and they have a wig shop there.

Know what you mean about so called friends some I have never heard from again others phone and call regulaly and I know I can phone or text them and have a chat. 

I found the worst thing about the chemo was trying to stay away from people with bugs - as my treatment was in the winter I stayed in over Christmas & New Year and although I went out with friends we would avoid crowded places.  I think I got a bit neurotic.  I was with my husband in the supermarket and as he was putting the shopping on the belt at the check out he said "that girls blowing her nose she has a cold " and immediatly started putting the stuff back in the trolly and went to another check out.

Good luck with the treatment.

Hi river ....... I have been on chemotherapy for several years now and always worry about infections too. I don't know why, but I have never asked anyone before, but can you get a mouth-mask or something to wear during winter flu times?  The Chinese seem to wear them for carbon emissions, can you get them for germ emmisions.  Might look daft, but I guess they could literally be a life saver when well into chemo cycles.  Am I being a bit weird ?      Max x

Hi Rachel and  BB !   X

Hi Max

I think you can buy masks they have a filter in them (the OH used to have them at work) how effective they are I dont know.  You could ask your GP (as I have seen dentists and doctors wearing them when they have a cold) which type to get.

I assume that you get the flu jab I had one last year because I was starting treatment.

The other thing I did was have a small bottle of hand wash and antiseptic wet wipes with me all the time and one in the car as well.  I also made sure that I did not touch any doors in public places - used a hankichief or gloves but if I did then out came the antiseptic hand wash.

Never mind looking wierd you could always start a new fashion or wear a scarf over the top !!!!!!!!!!

River x

Good idea about the antiseptic wipes!  You kinda get to the stage where what is weird amyway - bald head, no eyebrows/lashes, protruding portacath, one-sided chest, bright red eyes, runny nose  - might as well add a mask!

I will feel a bit daft asking the chemo girls but will let you know what they say - seems a good idea to me.  And yep I did have the flu jab.

Thanks river x

Hello Rachael

Nice to hear from you.  I've been diagnosed with carcino sarcoma of the endometrium which, I've been told, is not curable but can be treated effectively.

What about you?  I had to go to the hospital today for a blood test to make sure I'm "fit" enough for my second session of chemo on Monday.  Not nice to be thinking of all over the weekend.

BB

Hello

Thanks for the info about the wigs.  I picked one up today.  I've gone blonde but am not confident enough to go out in it on my own so may get a baseball cap and/or a hoodie and really show some attitude (if only).  Can I ask something of you all?  I have now started to lose my hair and my head and hair itself is painful!  When I tried the wig on I wasn't sorry to take it off because it made my head hurt.  I don't understand that.  In the past I've fallen down our stairs at home, twice, each time backwards (don't ask me how) and only stopped when I reached the bottom and actually knocked dents in the wall with my head!  That didn't even given me a headache (no sense, no feeling), but this "crampy type" pain I could do without. Has anyone else been affected like this?

Hello to you too Max.

BB

I have non-hodgkins lymphoma (dlbc) I have had my course of chemos ill be starting radio next week-I still have some in me but a little in comparision to the heap I started out with.

You sound like your in a mixed emotion place right now-which we can all totally relate to.

I lost all my hair-prior to all this I had long black hair and I was always obsessing over it-I'm truly gutted that losing hair is a side effect maybe in the future they can develop drugs that identify the good cells and do not attack them!

Rachael

BB 

I did have a little pain when my hair came out but the chemo nurse had told me that some people do experience pain and shave their heads when the hair starts to come out.  I did not do this but every night standing over the sink I used to run my fingers through my hair - not pullinging it - and it came out in handfulls.  I would do this until most of the lose hair had come out, this meant that I was not waking up to a pillow full of hair every morning.  I had very thick wavy hair and it did not all fall out I was left with a few wisps round the edges so under a hat I could have a thin wispy fringe.

It has now grown back even thicker and curly.

I know what you mean about the wigs, even though it was a good one I always worried that it would come off.  Did you get fitted for the wig because mine was not painful but I did find it uncomfortable after a while.

River

Hi Rachsel

They do have a system called a "cold cap" which stops the hair from falling out but it does thin.  I think they only offer this at Christies if people are really, really upset about losing their hair, I heard of someone actually refusing chemo if her hair was going to fall out.

It involves pumping freezing cold water through a hood that you wear, your hair is also wet.  I saw someone with this and she was wrapped in blankets because she was so cold.  I understand that the first session can be painful.

As my treatments took 7 hours I dont think I could have stood this.

I think that it is distressing when your hair falls out no matter how prepared you are.  The worst bit for me was when my eyebrows and eyelashes started to go (fortunatly that was near the end of my treatment) because that can make you look ill - I started wearing eyemake everytime I went out so I would not look so bad.

I always had short hair and it grows very quick so its back to the lenght it was before treatment now but I can sympathise with someone who had long hair as that will take longer.  Although think of all the styles you can try.

Good luck with the radiotherapy.

River