Hi anyone who is reading this - hope you had a fab Christmas - we did.
Brain is going 90 to the dozen. Was totally cool and collected about the whole thing and now am extremely fedup that I still don’t know what is going on and having had the operation on the 26th Nov still haven’t got appointment for radio.
Also, still don’t know about chemo and am trying to decide what to do in the hair department …
Have extremely long permed hair that I think will look very odd in a long curly wig so if needed the wig will be a sleek bob. Not sure what to do in the meantime
should I bob this now ? (will be less of a shock - even if it’s a frizzy bob)
should I cut it all short ? (may hang onto it for a bit longer)
should I just leave it? (enjoy it while I can)
Won’t have to do anything if no chemo - unlikely but possible. In which case I’ll be worried about things other than my hair! Feeling quite desperate to get the go-ahead for chemo now … feel sick if I think I will miss it.
When I imagine I get the go ahead for chemo then I feel just as worried about that! … yes you’ve guessed it - feel sick.
Fear of the unknown I suppose …
The only good news on the horizon is that we managed to have sex yesterday! (Excuse me please). Husband sad he was pleased we were getting back to normal. You’ve got to laugh haven’t you? NORMAL!!! I’m getting so I can’t string 2 thoughts together!
Head just gong round and round and round … presumably this is normal???
Even worried about the poor hairdesser - she has taken years to cultivate this lot! She’s going to be devastated.
New Year’s Eve is just as confusing … do I want to be with others? If someone asks me what I’m hoping for I will feel like smacking them in the chops (never done it- non-violent). Do we want to spend it alone with the TV? What a waste? Feel like I can’t make any decisions about anything until I know what on earth is going on.
Am I normal?
Sorry about this but having a “moment” … am sure it will be fine once the ball is rolling as it were …
Just wanted to say hi and sorry your in turmoil at the moment. Please dont worry about it tho - its perfectly normal - whatever normal is now we are on this journey!!
Its probably because of all the holidays just now that you dont know whats going on - no comfort to you I know.
As for the hair thing - I would say leave it as it is till you find out about chemo for sure. I too had long hair - a few of my friends suggested getting it cut shorter before starting chemo but I didnt feel that would make losing it any easier - and also did not see the point in wasting the money!!! Once I started to lose mine, and the bald patches were showing, I got my oh to clipper it for me - the tears were rolling down my face while he was doing it but it meant I was taking control. I did get a wig but have never worn it - have lived with beanies and buffs mostly - wore bandanas at the beginning but was tying them so tight to feel secure I was getting headaches!!
I dont have another half now (my choice), so think I am just going to pretend new year is not happening and get up next day as if its the same as any other!! I am fed up with folk saying next year is bound to be better - having had this happen this year, and last year my daughter was seriously ill. I will take 2008 as it comes.
Everything along this journey is fear of the unknown for sure - but once you know what is happening - I am sure you will cope with it well - we have no choice but cope at the end of the day.
I hope you find out what is happening soon, and if you dont, please feel free to have another rant - we all have at some point. I hope it helps to know you are normal and you are sure not alone.
Oh Fiz
you remind me of me so open in your posting and needing to let it all out.
Lets face it its all ‘terrifying’
What i found was that the onc and medics would answer the medical questions but it was the practical things like your hair, the wig the headcovering. The physical side of a relationship etc etc.
Infact i meant to write and recommend that my chemo suite had a pateient support group with patients who had ‘done’ chemo being there to chat about practical issues. Maybe i should do that asap.
Hair, well mine was the longest it had been rather scruffy but naturally wavy and i was really pleased i had been able to grow it shoulder length. I didnt think i would have chemo and got it done paid alot hated it.
When i was told i had to have chemo, i got mine cut short. I found it messy when it started coming out and would not have liked to have had long hair.
I had a wig which i liked and felt very comfortable with, however i did use bandanas too. However i didnt like peoples reactions and them ‘knowing’ i was having chemo and was ill. Hate being the patient i like looking after others.
It was new year 2006 that was difficult for me. I had been told on the 23rd Dec i needed chemo. I just grimmaced when people said ‘happy new year’.
I was terrified but 2 years on feel quite well and ‘did’ the chemo.
You have everyone here for support. do go to the special days BCC put on if they are in your area. Also i went to ‘headstrong’ held at my hospital. The ladies were great i tried on lots of head scarves and hats. We had a good laugh and they made me feel so much better.
Let us know when you find out if you do or do not need the chemo.
hi Fiona -
this is a rotten time - the holidays put everything thats there to keep us well on hold - and plus we are supposed to be enjoying ourselves!!
Im waiting for ‘big’ results on monday (the where else and what next ) - known it was coming a fortnight ago… had a few wobblers in the middle of the night!!
Like you my head is scrambled - can’t remember who I’ve wished happy new year to etc etc some even been wished twice…what the heck!!
Hope you hear soon - I’ve been assured that I’ll feel better when I know what I’m up against…hope that is how you will feel too.
good luck, Suex
Thank you so much for your replies - it means such a lot to know that there is help out there and also that I am normal.
The latest is …
~ I am finally going to find out (do I believe this?) on Tuesday 8th January …
~ we have been keeping it a big secret and we realised this was putting too much pressure on my husband so our secret group has been expanded from 4 (key members of my family) to 8 (key members of his family). We live abroad and all our group are in the UK. Thank goodness you are all here online… “R”(Liverbird) … from what you’ve said i think you understand why I don’t want any one to know …
~ the hair decision has been postponed until I find whether I need chemo … I may find a wig first and then try and copy that! … bit back to front …that might be a first??? going to the hairdressers and asking them to copy the wig - rather than going to the wig shop and asking for the wig to be like the hair! …
Good luck SueBeth - let us know how your results go - I’ll be thinking of you - you did well to get through new year - don’t know how you did it! - we stayed in - I’m glad we did - Christmas was lovely so we didn’t mind
Hi Fiz Bix - We were diagnosed about the same time I think, we exchanged thoughts on telling people. Have just read your posting and sorry that this is a particularly difficult time for you. I think it is tomorrow that you find out for sure whether your will be having chemo or not. Just wanted to say I will be thinking of you. I had my first chemo Christmas Eve and apart from the first few days have really felt not bad at all. Our son went back from Australia to UK yesterday for the new school term and I managed to walk miles sight seeing in Sydney which was really encouraging. Two weeks today since my first FEC and feeling that my hair may start to come out any time. Was going to get it shaved at the hairdresser, but we bought a clipper thingy today so we can just do it when it feels right. I did choose to have mine cut really short as a half-way measure some weeks ago which has been good. As you say, shame about the expensive highlights! Have a wig and some turban things at the ready - may be too hot for the wid. Have to say my pubic hair has started coming out in handfuls which is somewhat disconcerting, but I knew it would happen! Anyway, let us know how you get on. thinking of you. Love Sarah x
Hi Seabird - have been thinking about you - hope it’s going well. Did you get a picture? Sorry to hear you son has gone back - hope he is back again for Easter.
Just to say that I went to see the consultant … and there was an appointment mix up … so going back tomorrow again. Think this was about the 7th time when I thought “today I’m going to know”. If they do tell me anything tomorrow I won’t believe them - or I’ll forget it with the shock.
Decided to give my hair the chop - I wanted to take it home with me so I could have bits sticking out of hats if necessary - husband persuaded me not to and sat in the hairdressers just in case I got upset - or more acurately tried to pick it up! - which was very sweet. Think he had a vision of some mad woman crawling all over the hairdressers shavings on the floor going “give it back - give it back - don’t waste it - haven’t you heard of recycling? - it will take me 2 years to get that lot back!”. So at least the hair is sorted for the next few weeks. And I have to say I don;t look in the mirror now and think “I’m going to miss you so much” In fact, I look in the mirror and think “Who the hell is that!”
If you don’t hear from me tomorrow then “no news is … no news” in my case!!!
Speak soon
hope you had a good day and weren’t too stiff after all that walking
love
FizBix xx
Hi Fiz Biz - Great to hear from you, but so sorry that you are still suffering the agonies of not knowing what happens next, that is just rotten. Do let us know one way or the other when you finally get told. No, not feeling too stiff from the sightseeing, in fact I have felt good both this week and last, my son will indeed be back at Easter. Having a “hair today, gone tomorrow” head shaving party (small!) this afternoon and my brave OH is going to do the deed! As for the picture, this has turned into a bit of a project and I am sitting weekly for the artist, so it will be very interesting what we end up with!! Who’d have thought it! He’s coming along with sketch pad to the head shaving! Great to talk to you again. Good luck - Hey, we can do this! Love Sarah xx
did you hear that drum roll ??? Yes - you’ve guessed it - I KNOW!!!
The onc was very nice and said that as I don’t have any hormone receptors he’s going to give me the next level up of chemo - which made sense.
So I am having 8 in total every 21 days. 4 of one type (EPI) then 4 of another (TAX). Starts Monday 14th Jan.
I got it wrong - am having chemo first then radio for 2 months after that - should be finished by October!
Hair will probably be gone 14 days after first treatment … met a very nice lady in waiting area who told me where she bought her wigs locally … let’s hope they do “large” … having a look tomorrow.
On the whole very pleased - just a bit confused as have to reorientate myself as I thought it was radio first … the big discussion/decision now is whether to come out of the closet - thought I could postpone that decision until Spring but have to decide now.
The other good thing is tht I have now met the team in the inc unit and finally have some good quality information - it’s all been a bit hit and miss up until now.
Good luck with the head shave - hope it goes well. At least it’s summer over there - I’ve been FREEZING today since my hair cut - going to be pretty parky without any at all!
Sounds like the picture is gong to be a masterpiece - you’ll have to take a photo of it and put it on the website … sounds to me like he might give it to you at the end - hope he does … you’ll deserve it - quite a nice positive thing to have …
You’re right - we can do it - many have before and many will after us! …
Dear Fizbiz - So glad that you know now what’s ahead and what “the plan” is, it makes it all so much easier! Like you I am having chemo first ( 3x FEC then 3 x taxotere) and then radiotherapy, and then hormones, so we will have quite a few experiences to share! The head shaving was a great success, and strangely enough will always be a good memory, we really had fun, I felt totally loved and supported, and didn’t even wake up with a hangover over this morning! Funniest thing was that having been “blonde” for the last 20 years the quarter inch I have left is definitely dark which is strange to get used to. Went out in my wig this morning and no one gave me a second glance! The picture is actually a series of pictures which I think is going to be a whole exhibition in about a year’s time - will be very interesting though, and as you suggest feels to be a really positive thing A wonderful antidote to all the medical things! Good luck with your decision making - I can only share my experience, which has been that I have told everyone, and I have not had a single negative reaction, everyone has been brilliant and so interested and saying that now they won’t be so frightened if it happens to them, which is great. I was thinking about you the other night and thinking that for those who care for and love you, if you do then tell them a long way down the line, they might then feel sad that they did not know “at the time” to support and care for you - you know, true friendship and sharing good times and bad etc. I know it’s extra hard for you because of your business, good luck whatever you decide. There are no rights or wrongs in any of this, just how each and every one can of us can get through it the easiest. Good luck for your first chemo, please please keep in touch. Love Sarah
Well about an hour after I wrote to you yesterday I went into a complete wobbler that I am now out the other side of - thanks mainly to all the support from people on here, my husband and my new wig - which I have to say is not bad at all - not to mention a huge relief.
In the end we have decided to tell only very close friends here. We decided you were right - it’s either involve them and let them into the problem or alienate them - so we opted for the former. Have to say that is was surprisingly easy (having got over the wobbler) and they were extremely supportive both emotionally and with offers of help. We are going to tell only a small group.
I wore the new wig both times and one of them kept saying how lovely my new hairstyle was - when I told her it was a wig she was flabbergasted and wants to get one! That was a surprise. It was great that this happened before I told her about the impending hair loss - so I knew it was genuine and she wasn’t just being kind. She genuinely thought it was my hair.
The other one said - “wow - I love your new hair” - but when she touched it in admiration and knew it was a wig straightaway as it wasn’t my hair - we’ve “touched hair” before when comparing textures just in case you were wondering!!!
Her husband thought it made me look 10 years younger … am beginning to wonder whether my old hair was as great as I thought it was!!! lol!
When I had my wobbler Margaret invited me to join the “anyone starting chemo” thread - which I can see you chat on so we’ll meet there as well.
Can’t say I’m looking forward to chemo but am certainly feeling more prepared. This biggest issue for me is that it’s one of those things that until you do it you don’t know how you are going to be (other than bald!). This obviously mucks up the “planning” side of life somewhat.
I also did a weight poll (you may have seen it) and it seems as though it shouldn’t be a problem. It could go up, it could go down (yes please!) but nothing too extreme that can’t be sorted out aferwards relatively easily. Am feeling more relaxed about that and going shopping on Saturday so that I have good things to eat at hand. Have decided that nutrition is particularly important. Also prepared with new toothbrushes etc. Am going to buy some pineapple juice for mouthwashing too … in fact I’m going to start a new checklist thread … I’ll write down anything i can think of and ask anyone to add anything else on that they think might be useful …
Good luck and well done for keepig your chin up throughout! A definite role model!
Speak soon
Lots of love
FizBix
HI FizBix - I just added one or two things to your list - you sound wonderfully well organized. Keeping one step ahead helps with the feeling in control aspect! As you say, you just don’t know how you’ll be with the chemo. You read these great long lists of side effects, but then I thought “well, not everyone is going to get everything”, so basically just wait and see and deal with each thing as it comes along. The first few days were the hardest (but not awful - just nausea, tired, some strange feelings), but I can honestly say that week 2 and 3 I have felt fine. Second FEC next week. Will chat with you and the others on “anyone starting chemo” - as you say, this site is such a support. Glad your “wobble” did not last too long, I am sure we all have them! Lots of love Sarah xx