Hello all…how I would get through without the support from everyone I do not know!
im due to start chemo in the next 6-8 weeks and I’m really anxious. i don’t want to lose my hair and I have ibs and im convinced I’m going to spend the next 6 months on the loo 
I have really low bp as well.
How has everyone coped with the SE’s? Any tips?
Thanks
Esther xxxxx
Hi Esther,
You do sound totally overwhelmed. It can be really fightening when your treatment plan includes chemotherapy and the waiting doesn’t make it any better. I was hoping not to have chemo, but my post-op results were not as good as expected - so suddenly found myself on that route.
I had long hair but didn’t want to try the cold cap. You might want to talk to your Breast Nurse about this before making up your mind. Of course, I didn’t want to lose my hair but decided that as it was going to happen, I would at least do something positive with it, so I donated it to the Little Princess Trust. It doesn’t change the fact that I am now bald and it’ll be a while before I have hair again, but at least I haven’t lost it for nothing. I also decided against a wig (that’s just me) but lots of women here have found really good ones.
As far as your IBS is concerned, chemo can effect your gut. A lot will depend on the regime you are on. Again I would talk to the oncology team about it beforehand. Main thing is to have everything to hand that you might need (laxatives, antacids, diarrhea treatment etc.). Perhaps the things that you know work well for you. I have made the mistake of “waiting and seeing” on a couple of occasions when I would have been better off if I’d taken something sooner! Don’t suffer unnecessarily, it’s not worth it. If the medication you’ve got doesn’t work, ring your chemo team or GP for advice about alternatives. It’s what they are there for.
The most helpful thing I did was to join the “starting chemo in February” thread here … the Valentines. I don’t think I’d have got this far (chemo cycle 5 this week) without them. I’m sure there will be a similar thread when you start. You will find lots of support - practical and emotional from those going through it at the same time.
Take care, good luck and let us know how you’re getting on.
Gill
Hi Esther
Ive just finished 6 lots of chemo and all I can say is that it is doable and you will come out the other end.
Re hair loss- you could try the cold cap. I didnt and I wear my wig whenever I go out. 4 weeks post last chemo now and my hair has begun to sprout. Only tiny baby shoots but it is sprouting!
Re IBS Movicol is brill for constipation. Immodium for the runs and ask for Omeprazole to protect your stomach. I have a hernia and by cycle 3 i had to doulble the dose but im back to normal dose now and hoping to stop completely soon.
Re sore mouth - i found using CORSODYL mouthwash helped enoormously followed by Difflam. Like Gill said get prepared with meds before theres is a problem. Ask your doc for a prescription excempt from because your prescriptions will be free.
Good luck
QD x
Hi Esther
I have to agree with what Gill and Queen Drama say. I am also in the February group, and one of the best things you can do is pop over and read a few posts from any of the groups in the “Undergoing Treatment: Chemotherapy” section to find out how others have coped with side effects from Chemo. Losing my hair wasn’t a problem for me, but I know that many women do worry about that. cold cap as mentioned can be successful and might be worth a try. When you have a start date, if there isn’t a group set up for that month, perhaps you could begin one yourself as they are invaluable for us when going through it.
As far as your other conditions are concerned, I have Sjogren’s Syndrome (among other things) which gives you similar symptoms to IBS. Medics will take this into consideration and give you medication to help you with any side effects you might have.
Good Luck, and Best Wishes.
Poemsgalore xxx
Hi Esther,
I am undergoing chemo at the moment and I suffer from colitis as long as oncologist is aware you will be fine any problems don’t be afraid to contact them that’s what they get paid for…
dont worry about things if you lose your hair it will grow back the more you stress the worse you will feel I know I’ve done this in the past and been worse because of stressing I don’t stress/worry as much now .
Just take each day as it comes it does help
Marie xx x
Hello Esther,
Just wanted to add that I thought cold cap was worth a try and did keep most of my hair through chemo. But the biggest confidence boost I had on the hair topic was going to get fitted for a decent wig before I started, so I’d be ready if I needed. The Trevor Sorbie charity “My New Hair” can recommend a hairdresser from a nationwide network, used to dealing with medical hair loss.
Mine is thinning now on further treatments, but I get a boost from going to a hairdresser who knows how to make the most of it - and integrate the bald patch left from chemo.
Sarah.x
Esther, forgot to say I spent about £200 and was amazed at how realistic it was at that price. I wished I’d been as brave as the young woman I saw walking confidently in to the oncology ward today with a shaved head and proud of it! S
Hi…I too was petrified of chemo but it wasn’t all that bad…it was doable…don’t get me wrong…it’s no picnic but I was expecting it to be like TV…it wasn’t…any symptoms I had…which were few…were dealt with by my onc…I too have IBC and told my onc of this beforehand so I was ready with meds to deal with any symptoms…my best tip to anyone starting this journey none of us wants to be on is…to get a wig as near to your own style and colour as poss…I was supplied one free…I live in the Nwest…and no one was any the wiser…I also bought some night caps as my chemo was in the winter and my head got cold…also some nice banndannas…all reasonably priced from online stores…just search chemo caps and lots of sites come up…I imagined the chemo as pacman…munching all the baddies…hang on in there and you’ll be ok…best wishes…apple…
Hi all,
thank you for your advice and support. I don’t have the option of the cold cap at this hospital Unfortunately. I will definitely look into the wigs. I’m extremely worried about how people view me. I think that’s why I’m so worried about it. I love my hair so much. I’d rather they take my boobs than my hair and that’s saying something because hair grows back.
i will definitely speak to my oncologist about my IBS then and see what they can give me for it. I’ve already got a health card for free prescriptions. My gp sorted it for me.
And I will definitely join the group when I start. I presume it will be June or July when I start as I have to go through all my fertility treatment before then. It’s so much to take in. I was fine about the op and the thought of radio seems like a breeze in comparison to chemo now. Oh well…I’m looking forward to 2014!!!
thank you all lovely ladies xxx
Esther, i just acknowledge all of the above, i did really well with chemo. got loads of stuff in place and didnt need it. when you get into athread you will see we all have the same fears. look back on the posts how to get through chemo, or what you need etc.
you will have some crappy days and need to rest.
youre not on your own and thats the best thing about this forum
Anne xxxxxxxx
good luck
I agree with the advice of joining the group that starts chemo at the same time. Being able to share what you’re going through with people that understand makes all the difference. Yes go through the different month’s groups and you will see we all had the same worries. I still miss my hair, it was one of my biggest upsets at the time. I gave up on my wig a couple of months ago and now go out in my pull-on cap. If you had told me that I would be doing this in September I would not have believed it. You’ve made the first step helping yourself by joining the forum - well done you!