Hi billybetsy,
I haven’t had any mouth ulcers so far but I have been faithfully using the mouthwash they give me at each treatment.
One side effect I’ve had is a horrible taste in my mouth especially for the mid cycle period of 7 days.
My freezer is full of ice lollies (Fruit Pastille) as they are very refreshing while I eat them but as soon as they are finished the bad taste is back.
I’m on day 15 of this 4th cycle and I can taste food again properly but I am resigned to the fact that this will happen again for the next two treatments.
The other bad side effect for me is indigestion. Although they have given me meds for this my poor old OH has to burp me every night so I can let all the ghastly wind out before we go to bed!
Losing my hair wasn’t very pleasant at the time but I don’t think about it now. I’m looking forward to see what colour it will grow back as!
One comforting thought was that my hair falling out showed that the chemo was working!
Good luck with your ex-ray and I hope you get a start date for your hemo soon.
Wendy.
Ah thankyou Mouseybrown had my x-ray today but now the hospital rang me this morning and they want me in tomorrow morning for a bone scan.I have to go in at 9-30 for an injection then go back at 12-30 for the scan god knows what thats all about but delaying the chemo AGAIN, hope you are happy Jane xx
Billybetsy, the injection is some contrast dye, and it takes a bit of a while to work its way through your system which is why you have the three-hour delay, all perfectly normal. Having the scan tomorrow means that chemo will happen soon rather than delaying it, it would have been worse if you’d had to wait a week for it. Do you have a date to see your onc?
Some hospitals do scans before chemo so they can get a baseline on things like bone density, heart function and so on. Write down all your questions ready to spit them out when you see your oncologist, as he or she will be the person to answer them. We on here can speculate about what and why, but your onc will have some certainty because what he says will be based on YOUR cancer.
Good luck for nerves tomorrow, I suggest you bring a good book and maybe your own drink and a snack as drinks and snacks machines in hospitals can be a bit pricy.
Come back tomorrow and let us know how you get on.
Hi to all, had my bone scan yesterday to check it hasnt spread to the bones it wasnt to bad the worse bit was the radio active injection as usual they have trouble finding a desent vein.Booked a hair app for next tues to have my hair cut short just to get myself used to not having long or no hair( i know im going to cry) i cried just making the app (silly i know) i will put a picture on when i haved it done.Keep smiling xxx jane
Hi
Good idea to do the haircut - it means you are taking control of the situstion (in as much as you can)
I had all of the tests MRI, CT, Bone, Heart and although incredibly stressful it really does mean you will know what’s what and the best treatment will be given.
Don’t worry about crying, I only said last night that i had never cried as much, it’s normal, and actually i don’t cry everyday. In fact life hasn’t been half as bad as i thought it would.
I too was concerned about mouth ulcers but haven’t suffered so far (day 11 FEC2) but i have been a real stickler keeping my mouth clean and drinking loads. I’ve had 1 day of sickness which meant the next day in bed, but i have met friends, been away, cooked, cleaned, etc.
The worst bit is the waiting and fingers crossed they know all they need to know and can give you the very best treatment. Remember that because you are young they will throw all but the kitchen sink at you, it doesn’t necessarily mean they suspect something and haven’t told you.
Good luck at the hairdressers.
xx
Billybetsy, if your hair is long enough to give 10" lengths when cut, you might want to give a middle finger to the disease by donating it to Little Princess Trust who take donations and turn them into wigs for UK kids with alopecia, most often caused by chemo.
littleprincesses.org.uk if it’s of interest. I found I got some consolation when I cut my own long hair off by knowing it wasn’t just going in the bin and being wasted. Others who have shorter hair have put it out for the birds to use as nesting material!
Good luck with the results.
CM
x
Hi billybetsy,
Am posting on another thread about newly diagnosed as well, but just wanted to say hi. I’m about the same stage as you, although just going to get my results on Tuesday next week. I’m hoping for just rads and hormone treatment but am not sure what tumour results are so don’t know whether chemo will be in the picture.
Good luck with everything. Isn’t this site brilliant? and thank you to chocciemuffin and staycalmand carry on for all your helpful thoughts. Have been reading your posts for a week or so before joining in!
wish I wasn’t here, and in many ways can’t believe I am but its great to know there are other fab girls out there going through this with me.
Stay well everyone
Wandyx
Hi its moaning milly here again i cant believe it i have just han another call from hospital to say i now have to have an abdominal ultra sound but till the end of Feb which means chemo wont start till March at least. Im so fed up if these are routine why dont they tell u that when u have the oncologist app it would save me a lot of worrying thinking they have found something else. xx jane
So sorry.
Any chance you can talk to someone about what they know so far and how they feel about it?
Moan away! You’re worth it.
Try not to worry about the scans and things they are just checking everything out before they give you chemo (they are very clever people and need to know loads of stuff before they start you on the drugs). This is the worst bit as the other ladies have said, all the scans and tests and not knowing what is going on!!
I had my hair cut a bit shorter and thinned out a bit so that i managed to keep most of it using the cold cap!
Give it a go if you really don’t want to lose it. P.S If you are near Watford let me know, my hairdresser was amazing and looked after my weird and delicate hair all the way through. I was able to go on stage most nights through my chemo and no-one noticed!!
Good luck xx
wow well done for keeping your hair, i really am gunna try my best to keep it, have got an app to have it cut next week. Thanx for the advise xxx ps wot do u do as you said your on stage
Hi, I am a trumpet player and singer, i was working in the west end with a musical called ‘Ratpack’. I am a freelance musician and was back on tour a year after my diagnosis! Just wanted you to know there is life during and after treatment although it is pretty grim at times you get to really appreciate nice stuff! x
Hey ladies just to let you know i start my chemo 28th Feb all systems go now, must admit im bricking it and not feeling very brave at all like everyone says i am i want it all to go away, sorry rant over jane xx
Hi everyone
I got a diagnosis a week ago and am still in shock. Its like a bad dream that you cant wake up from. I have a lumpectomy and lymph node thing next Thursday 24th. Then I guess we go from there. The waiting is so awful and I havent had to wait that long…! I keep asking Why Me? but there is no answer to that for all of us I guess? Glad I am not alone tho. I keep thinking every twinge is something dreadful…is that normal?? Does is always make you feel that you are going slightly mad??
Suzie x
Without question you feel you are going slightly (majorly) mad.
You are in, what is commonly recognised as, ‘the worst bit’. One minute you are you, the next you are a cancer patient, this will take some adjusting to but you will be amazed at how you do it.
The ‘why me’ question is another gremlin that sits on everyone’s shoulder and of course there is no answer to that (other than ‘why not?’ i guess as there will be nothing that you have done to make it happen, it’s just bl**dy unlucky).
Unfortunately you will go thru’ many of these emotions until the 24th but one you begin the treatment you will, without doubt, feel better. In the meantime I guess you may be tempted to Google anything and everything - just be careful, there’s a lot of good stuff but equally a lot of rubbish that can just scare you. Maybe look at the leaflets on here if you need info.
I can’t really offer you advise as everyone is different but i can tell you that at the beginning i was convinced that this was ‘IT’ but now I’m thinking of holidays to book. It’s horrible and scary at times but it’s ‘doable’.
No doubt others will add similar thoughts to support you. Keep posting and best of luck.
x
Hi Suzie and welcome to the BCC forums
In addition to the support you have here please feel free to call our helpline where you can talk your concerns through with one of our team on 0808 800 6000, the line is open 9-5 weekdays and 9-2 Sat.
We have published a ‘Newly diagnosed’ resource pack which you may find useful and you can order a copy via this link:
Take care
Lucy
Suzie, you are completely normal, as SCACO said. I swear that the week between diagnosis and seeing the consultant I pretty much planned my own funeral! But as I’ve moved forward in the treatment plan I’ve managed to calm down so that I don’t burst into tears at the drop of a hat and I can pretty much function, even though I’m a bit obsessed with this cancer thing.
Do give the helpline a ring, even if it’s just to go WAAAAAHHHH down the phone, they are lovely and might help you find your head again.
Good luck, and you’ll find loads of support on the forums.
CM
x
Thanks guys, comments much appreciated. I have been to hospital for pre op checks today. The Breast Sister (sounds like a bizarre porn name…)was so lovely and full of positivity and future planning. yeah, I planned my funeral too, couldnt think any further than that. Now I feel slightly less despondent, thankfully. I am sure the dark fears will creep back throughout this process ( I sound like Alan Sugar now…) but its comforting to know that you all have hope. I have a ten year old son who is the light of my life and although its hard to not cry in front of him, I need to be as normal as possible for him. I am just off to watch him play football now for the school team, he is the only yr 5 that was picked…!
S x
Well done for your wee lad, you must be the proudest mummy!
I have a view on parents and kids and relationships that not everyone agrees with, but it seems to work reasonably well for me and my tribe. I don’t try to pretend to my kids that I’m perfect, that there’s never anything wrong with me, and that I know everything. It all just feels a bit more “honest” to me if the kids can see that I’m just an ordinary human being, that I make mistakes and that I’m able to apologise to them for making mistakes (and I frequently have to) and it also takes the pressure off ME, as well as off THEM.
Kids can be very perceptive, and when a parent is worried and they don’t know why, they often take the “fault” for that worry onto their own shoulders, even if it has nothing to do with them. Worried about the economic climate and the possibility of losing your job, and get a bit short with the kids or a bit distant when they talk to you about stuff? Bet your life the kids will be worrying that they’ve done something to upset you, when you’re in fact just bothered about something the boss said and weren’t even thinking about the kids. So if you do burst into tears in front of him, tell him why. And be prepared for him to ask all sorts of questions that you might find tricky to answer, but which you’ve probably been asking yourself already anyhow.
I’m a single parent with no daddy around to take up the slack, and my 12-yr-old daughter asked me “if things go wrong, what’ll happen to us?”, meaning her and her 14-yr-old sister. I felt that if she had the guts to ask the question, I owed her an honest answer (her 21-yr-old sister would take over but because of where I was, I had no intention of popping my socks next week or the week after) and we ALL felt a lot better after that particular elephant in the room had been discussed openly.
That might not be the best approach for you and your family, if it’s not how you generally deal with things, but it certainly has worked well for us.
Best of luck.
CM
x
Hi Suzie, Sorry you have had to join us. I had a lumpectomy and SNB about three weeks ago and feel so much better since it was done. After dx I was pretty much in shock and I guess that is pretty much how all of us feel. Every little twinge I thought meant that it had spread. Given that I didn’t have a lump and wasn’t aware until dx then everything hurt.
The op itself is quite do-able - day surgery in my case or overnight at worst depending on what time of day it is scheduled. The waiting and worrying was by far the worst bit. Yes, I need follow up treatment and you may even need chemo or treatment that makes you feel less than wonderful in the short-term but at least you will be on the road to recovery.
You will come through it and be back cheering your little boy on the sidelines before you know it. 24th will be here soon and where you are now is the worst part of the journey xx