I don't quite know what to say, which is unusual for me. It's upsetting that there are so many unfortunate people on this site but at least we can "talk" to each other knowing that we know exactly what the others are going through and not be told "chin up, we all have problems!". Yes, I was actually told that a few days before I began my course of chemotherapy. A few choice words meant that I no longer hear from that person anymore. Such a shame! Have any of you found that when you tell people that you have cancer, they look at you as if you've said something in a foreign language? One even said "oh, OK" and put the phone down. What sort of reply is that? So I decided to come on here and annoy you all. I now find it difficult to sleep and still wonder if, instead of being made to wait 7 months before having tests, I'd had them when I first presented with the symptoms, things may have been different. But, of course, there's nothing I can do about that now. I spent some time this afternoon trying to choose a wig but got so completely confused that I ended up ordering some storage boxes from a different site completely. Anyway, I won't bore you anymore tonight (I'll start again tomorrow). I've been told that they will be unable to cure my cancer but, hopefully, will be able to treat and control it. To be honest, I did wonder if it was worth going through all that I am, and will be, going through but I had my first session of chemo on 3 August and my next session is next Monday so as I've started, I may as well finish. So to paraphrase the old saying, try not to/don't let the b......d grind you into the ground. Good luck to you all. x
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
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 !!!!!!!!!!
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
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.
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.
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!
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.
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.
No-one knows what it's like for a woman to lose her hair like this, do they, except another woman.
I've gone completely mad and picked up a wig from the hospital yesterday the sizing of which is adjustable, and have ordered 2 wigs on line, all much the same colour but different styles.
I hope you don't mind me asking, but did you have any mishaps with your wig when you went out in it especially if it was windy and do they ride up at the back? I was at the bus stop yesterday and the wind was blowing and all I could think of was that I hope it doesn't blow my (own) hair out. Irrational, I know, but once you get thoughts like that in your mind, you can't get rid of them, can you?
How are you these days?
Battling Babe xx
Hi BB ..... yes you are right, you do get pain before your hair falls out. Kind of like you have had your hair in a tight pony tail and then let it out, is the only way I can describe it. It really helps with the pain to have your hair cut very short whilst you are in the 'falling out' phase, or even shaved off if you are brave enough.
My hair is just growing back (for the third time) and during hair loss this time I have worn my wig mostly but a scarf on a really warm day (wigs are hot!!!). I think it natural to worry that people will notice you are wearing a wig, but they honestly dont and it is just a mindset of building your own confidence which takes a little time. A good wig shouldnt ride up at the back and hopefully the person supplying it to you was trained to ensure you get a perfect fit. If not, go back for adjustments. You can buy products for synthethic wigs such as gel, spray, etc to give you a bit of umphh just as you can with your normal hair, and set with a good hairspray which also helps.
Rachael ........ many of the new drugs are now targeted to only killing the cancer cells (targeted chemotherapy) and I have had a few of them. Also helps with the other side effects too! This is definitely the way forward for all sorts of reasons but how long it will take for them to become NICE approved is a whole different subect lol!
Love to all xxx
Hi Babe as my chemo was during the winter and I love hats I used to go out most of the time in one of my many hats. I wore my wig when going out with friends and occasionally shopping. I never had any mishaps but was never really comfortable until my hair started to grow back, it seemed to hold the wig better. Nobody ever though I had a wig on and I even got asked where I had my hair done. Just been to my exercise class (very moderate dance based) & they have all been commenting on how good my hair looks & how quick it has grown. Keep smiling R