Hi Carol,
Just a quickie! see you are going for a shave this afternoon! when l mentioned this to my bcn, she said don’t go lower than a number 3! going really short can cause ingrowing hair and folliculitis, which may be a problem when the hair grows back, as it can be difficult to get rid of and cause scarring.
Good Luck
Sandra xxx
have had a lovely day of feeling well and having just a normal mum and boys day in the garden, making tea, hanging washing out etc, what once would have been a routine under the radar type day has been really good fun and i am very grateful.
However, i have now upset myself by reading too many posts on this forum where innocuous threads turn into scary ones about secondary cancer, and reoccurance and although i acknowledge that these things happen, at present they terrify me and i bury my head in the sand and just don’t want to know. I am sorry to any ladies suffering this, more sorry than i can type on here, and i am sorry if i upset anyone by saying this. However i feel like i have a fragile peace with myself at the moment and can’t deal with anything other than blinkered vision towards a successful outcome and long term health. I feel awful for even typing this, but felt like i wanted to tell someone. I wonder if anyone else scares themselves witless in this way?
Hi adventurers…
I am here!! After the last few days of stressing I know it was expected that I would be here but I was so scared!!! Yes tors…I scared myself witless dunno why but i certainlt scared the poop out of myself…
Well it all went ok all things considered, did want to run out and go home but I saw it through, had loads of tea and water and needed the loo every 20 mins!!! I even had lunch!!! The cold cap was not too comfortable for the first 20 mins but after that as if it wasn’t there at all…watched tv whilst it did its stuff:-)). Now I feel a bit lightheaded and spaced out but that’s all nothing bad so far to report :-))):-)))):-))) pleasssssse let it stay that way…
I asked abou my rads today as last week they only said that I would have a 4 week break after chemo then start rads which were to be done one side at a time…today they said i will have 19 on left side then a week to recover then 15 on right side…a grand total of 34 !!! eekkkk!!! One thing for certain is that I shall still be going to hospital (rads all being done at my local hospital in the christies dept there so not far to travel thankfully with all those rads)at christmastime and i expect an invitation to the xmas do !!!
Sandra hope Bliss is ok…she is coming out in sympathy for you and her blood levels need to be checked so that you know what to do when you get on the next step of your adventure. Have you booked the coach to Heather’s yet? I don’t even know where she live hahaha. The drop in centre sounds good, we have one locally which I was thinking of visiting…mind you those ladies sound like fun and you may be having way to much fun if you join!! or even getting up to mischief!!
my sleepy brain has switched off now and I cannot remember what I was going to say next so will sign out for now and rest some more 
so apologies to anyone I have not mentioned
thank you everyone for your good wishes…they did work so far and I’m sure they will continue to…
Hugs
Suze xxxxxx
Oh Vickie,
Poor you, know just what you mean, have done it loads of times, in fact Maria has often told me off for going onto threads that l should stay off!! sometimes you just read a little post and there you are, somewhere you don’t want to be, my heart breaks for these lovely ladies, because like you and me, that is the last place they ever wanted to be. And l am sure they would understand how you are feeling and would not be upset by your post.
We are all very fragile, you have to cope with this the best you can, whether it is with blinkers on or read everything and try and understand and think how you would ever cope!!
You should never feel awful for typing what is in your heart, by sharing it with the forum is our way of coping, and no matter what stage anyone is at they, l am sure would understand.
We are all scared for our lives, and when you have young children that fear is the worst thing imaginable! l have no young children but l am frightened for my life, l have so much to live for and want to do just that.As everyone does!
Like you l have had a lovely day in the garden with my grandchildren, they had the paddling pool out, and sitting watching them play was wonderful, my 3 year old said “this is the life grandma” l thought how right you are my little one! Then they went home and my thoughts start going all over the place, but that is how it will be for a long while, trying to learn to live with it has to be the hardest thing l have ever done, but when l look back from when l was first diagnosed, l do have more positive days, yes l am still up and down, but we are allowed to be, so just take the good ones and enjoy.
As Maria has said to me on many occasions stay with the threads that you know, sometime l slip, and could kick myself!!xxx
Carol.Sorry to hear about your shingles, l hear they are really painful?
Hope the shaved head went ok! well done you xxx
Maria, hope you didn’t mind me using your name (above) sorry to delve, but exactly how did you feel yesterday? were you sick? or tired? need to know what l have coming!!
Well your man would say things are on time! bless him, l am sure he is doing a wonderful job.
My little Bliss and l had good news today, her blood count has gone up to 34% considering last week it was 16% that is excellent, still below the average, but going the right way, so no vets for 3 weeks, unless a problem! she said she is not out of the woods, but going the right way. They cant say how she will be because they have never had a dog with two different autoimmune diseases, so fingers crossed xxx
Saffronseed, Pleased you are still well, keep it up!
No need to say sorry to me, it is my problem that l am such a coward!! I just cling to every little bit of good news, but then when l hear something not so good, l fall into that horrible black hole!! silly old woman that l am! If you are going to stay healthy and alive for many more years, l think l will stick to you like glue!
Your two different wigs sound fun! hope to see a photo of them, you could do it like Maria when she put three photo’s up, you could have one without and one with each of your wigs, and we will vote to tell you which we like the best!
We are a house of football fans to, so eyes will be glued to the box, and like you without the drink! xxx
Isabelle, Gosh you do have a long way to drive for your rads, but obviously worth the journey for your lovely home! xxx
Suze Hope all went well for you xxx
Lots of Hugs to one and all
Sandra xxx
PS Suze l was so long posting this you jumped ahead of me, but you sound as though you done well, so well done you, one under your belt!! xxx
Thanks sandra, very good advice to stick to the threads i know and i will try and do so from now on, though i am my own worst enemy at times. But often they are nice little threads til someone says, oh i had all very minor cancer really good prognosis, not spread anywhere, grade 1, half a millimeter, but then now i have terrible secondaries from it, so therefore yours that is worse than me has absolutely no chance at all on this basis… ( well thats what they seem to be saying to me, though admittedley they aren’t quite that explicit!)
I sound mad. Think i am a bit mad tonight. I still keep focusing on what one silly clininal reserach nurse said to me when i agreed to be part of a survey. She said that the resesarch used to be open to all women under 70 who were diagnosed, but now they had narrowed it down to high risk groups like women under 40. it made me sick to my stomach but i couldn’t bring myself to ask why it was high risk and i don’t really want to know. I asked my friend who is a consultant oncologist and she said to ignore her and that its usually not detected early in young women hence the high risk, but i don’t know if that was just to make me feel better. Argh, don’'t want to know. I hate all this!
Hi Mad Woman (Vickie)
You made me laugh, because l do just what you did on threads!! and we probably all do! That will teach us! or will it?
Strange how we all focus on the worst things that are said to us! l am just the same, l suppose it is because we really want the good things to happen, but…just too frightened to be too positive!
That will teach you to take part in surveys! we could drive ourselves mad with a little help from a clinical research nurse and so on…
I am sure your consultant oncologist is right, one thing l have found is all onc tell the truth, the whole truth and nothing but the truth…
We all HATE it. Tomorrow is going to be another lovely day, so enjoy your little ones and forget that silly research nurse.
Come on Heather, we need some funny stories to cheer Vickie up, or any ladies who have a funny story. Lets have a funny story day, although perhaps we should leave it to heather, we cant compete with her stories
Lots of Hugs
Sandra
have decided to go away for a few days with husband and the boys, looking at north wales and everything is booked up! argh. NOT taking laptop away with me…
and thanks sandra for your encouragement, it really helps to be able to post on here
xxx
I agree Tors, I too have dabbled in the secondaries sections (not sure why) and then ended up worrying and not sleeping thinking the worst… However saying that I am so impressed and heartened by the posts in these sections and the strength of those ladies involved. It sounds really patronising and not meant to be…
It is a really hard journey we are taking, we all have our ups and downs and our ‘freaky’ moments/days. I think that is normal though and i have almost comes to terms with the fact that I know that these black thoughts will never go away… hopefully they will be less frequent but I think once you have been diagnosed with Breast Cancer its something that will never leave you - again part of our adventure maybe… and we need to think about coping strategies and putting these ‘dark moments’ in persepctive and live our lives as ‘normal’ as we can do… (its easy to say and harder to do).
Yes I am working full time, I ‘pop’ out of work to have my Chemo and yes I run a household… ( well, I have a very demanding Cat called honey and a less demanding and very helpful and supportive husband!)-no kids though…I have a job i love, so its not like work and I have very supportive colleagues.
I have decided that I want normality, I need the normal routine and to try get my life back on track, so my cancer is part of my life not the whole. I am trying not to push myself too hard though and I am listening to my body and sleeping a lot more than usual!!
Sandra I haven’t bought my second wig yet, but when I have it I will get a photo up. I have worn my wig now for three days running and I am quite liking it - it doesn’t itch anymore and I am more confident than ever and nobody seems to notice its a wig!! I still wear my beany hat round the house though as its soo comfortable. yes stick with me by all means I have no intention of going anywhere just yet!!
Suze well done for doing first chemo it is defo the hardest! You used Cold Cap too so hoping you do keep hold of your hair (as I said before I found my hair loss the hardest thing in all this)
glad you’re up to posting after your 2nd FEC Maria. Aso nice to hear you went from 2003 as NED thats really good news - have you had a reoccurance now?
Best wishes to everyone on this thread and keep up the good work!! xx
Hi all,
I’m surprised at my day today, managed to do all sorts of little things that yesterday seemed like an impossible mountain of tasks.
Sandra, I did feel dreadful yesterday, worse than after the first one, sicky feeling and just grotty. I can’t be more specific, I’m afraid. However I got up this morning took my pills, (anti sickness and steroids) and did things slowly and everything went fine. I had my Down’s son with me as his school was closed today, and we even managed a walk this afternoon. So I am going to bed a happy bunny. I’m glad Bliss is a little better.
Carol, I hope you discovered you have a nice shaped head !! Sorry to hear abut the shingles. Yes make up tips will be good, I’ve never been one for much make up, but we are never too old to learn.
Vickie, I’m sorry you are having bad thoughts, this in normal. but don’t forget 85% of us get through this with no problems. I am cured of my 2003 episode, they say, and I am feeling very positive most of the time about my chances this time. But as I have said before, be careful which threads you read, you cannot keep up with everyone, and although there are some heart rendering stories out there, you should try and stick with people in your own situation. I have also said before, I am very good at the theory, but not so good at the practice myself !! So I am guilty of upsetting myself on here too. These nurses sometimes say the silliest things, that really upset us, good thing if you are in a survey, you will get even better follow up.
Suze, I hope you are still OK and have a good nights sleep, don’t forget to drink lots and take the pills they gave you.
Saffron seed, You posted the same time as I was, so I hope I have answered your question. I have a completely new and different bc than the first time, nothing to do with it, just unfortunately having it a 2nd time. I suppose if 10% of women get bc then 10% of us may get another one, just as ?% of us will be run over by a bus.!!
I wish everyone sweet dreams tonight,
Maria
thanks maria, it is very good to know you, and all the ladies on this thread. You always give me a measured sense of balance when i am reaching out for reassurance.
Saffron, bloody hell couldn’t imagine work! I am a solicitor and took 3 years off work to look after my children as my youngest son had dreadful ear infections and has had 2 lots of grommets already ( he is only 2!), so i decided to have a career break to lookafter him and his brother. I am so glad i did as i had a year of being less stressed and mum at home before all this kicked off. I think work would take my mind off things but i can’t exaclty turn up a year later and say, can i do a bit to keep my mind occupied! I would be a liability anyway, would be some poor decisions made, i would be fighting negligence cases against me for the next 10 years, never mind fighting breast cancer!
Hi Ladies,
Its so hard when you are first DX and you are desperatly trying to get your head around all that is happening , i too used to read threads that mabe i shouldnt have at the time because i know back then i was far too fragile emotionaly to cope with it, i know its hard to do but do try to only read posts which are relevent to your situation , i also try and remember that people post when they are haveing problems and we dont ofen hear of others who are doing well after BC because they are out there liveing their lives and have no need to post .
I think we all find ourselves in that black hole at times ,i know i did many times ,and its a realy horrible place to be .
It does get better though i promise, it just takes time , for me now i can honestly say that BC is not the first thing i think of when i wake up in the morning anymore or the last thing i think of at night , and i didnt think id ever be able to say that, but its true ,and although we get battered and bruised we do come out the other side and eventualy find a new normal,life realy can be good again , so for me at the moment ive decided im not going to worry about the future or the “what ifs” because that would be a waste, and whatever may or may not happen in the future i cant change anyway so for now its 2 fingers up to Cancer! .
Hi Maria,
When i knew i had to have chemo my onc offered me standard FEC or a Clinical Trial called Tact2 , being newly DX i realy didnt know what to do , did i take the proven chemo or try this new as yet unproven regime, tut, anyway after some thought i decided to go with the Clinical Trial as i thought it may just help others with future treatments, My DX was put into the computer at the Marsden and that randomly put me on Arm 4 of the Tact2 trial which was acelerated chemo every 2 weeks, 4 x Epi and 4 x Xeloda ( Xeloda is at the moment only used for secondry cancer) i was glad i did the trial but did find the acelerated chemo tough because i didnt get that “good week” so by the time i was starting to pick up by day 12, i was haveing the next dose of chemo again . One good thing though was Xeloda is an oral chemo so although lots of pills to take i was pleased as the Epi had completely knackered my veins , my veins are still like wire today and having bloods done is a total nightmare so i dread it . Ive also taken part in Breakthroughs Generation Study so hopefully in years to come that a lot will be learnt about the causes of BC from that ,i hope so.
Hope everyone is doing ok, and that you are all manageing to enjoy some of this lovely sunshine , keep positive ladies, one thing cancer can never take away from us is our fire and our spirit.
Hugs to everyone
Take care
Linda x
Hello, Ladies
well, I now look like thug but can hide behind my wig. we had a visit from dear freinds yesterday evening and they had no idea I was wearing a wig, mind you they both wear glasses!
My dear OH said when he saw my bonce that I look like Dan (son) now so I said you mean I am now handsome not beautiful-thanks.
well I am off to work now-only shuffling paper around, nothing too taxing!
Lets enjoy this lovely sunshine
Carol
I took another step on my “adventure” on 2nd.when I went for my follow up ap. after surgery.Good news all cancer had gone having clear margins from the wle and none in lymph glands.Bad news cancer wae very aggresive and so chemo followed by radio therapy. It was quite a shock and i’ve had a couple of wobbly days but not too bad to-day.Going to get my hair cut shorter next week so as not so much to loose and on the lookout for colourful scarves.
Just found this thread and what a lovely group of funny ,slightly mad sometimes , trying very positively to be positive ladies you all are .
So much of what i read made me laugh along with you .
I´ve just passed my six month since dx , the lumpectomy and rads are over ,pills for the next five years and looking forward to getting my first year BC or ABC ( after breast cancer ) behind me , then it will be one down and hopefully lots and lots to go !
I´ve also just come back from seeing my son and his family for the first time since dx ( I live in Spain ) could´nt come back before there was always appointments ,as you all know only too well . I did book a flight in March , but I was having 25 rads , and unfortunately the pigging machine broke down , and then it was a fiesta and so I had to cancel my flight . But to see my lovely grandchildren last month …how do you describe such happiness ?
Now , despite age , weight in fact proberbly defying the laws of gravity … I´ve just joined a gym for the first time in 20 years and three stone heavier . However I really need Mr Motivator behind me , god those excercise bike seats hurt , and I keep slipping off , I think I´ll have to sew some velcro on the arse of my shorts . trouble is then I would stick to the excercise mat when I try pilartes . I hope this is a good idea , I have trouble getting out of bed what with joints creaking .
No , I have to be positive , I will go and I will continue to go , I´m aiming for three times a week . You´re all struggling and putting up with your treatment , a sore bum is nothing to worry about .
All the best ladies ,
Kris
Hi Ladies,
Another glorious day! long may it last!
Tors, Hope you are not reading this! because you are in North Wales without a Laptop!! so hope the weather stays kind to you, and you are all in good spirit! xxx
Saffronseed, We do dabble don’t we! tut! yes to hoping these black thoughts get less as we go along our journey. Impossible task, but we will keep trying!
Keep thinking l need to do something to keep my mind busy, have thought about decorating our bedroom, but that is as far as it has gone!
So pleased your wig doesn’t itch any more, would like to think l can wear mine as much as possible. Not sure about this hot weather and wigs!! xxx
Maria, Hope you are feeling a tad better today! must be a pain having the kitchen men in while you are feeling rotten, although perhaps it helps, something else to think about! Lol!
Good you got out for a walk with your son, that will make you sleep! Have you noticed the steroids make you ‘high’, my Bliss is on 2 x 25mg steroids (prednisolone) a day, and she is zonked out most of the day!! certainly haven’t put her on a high!
How long are the kitchen men there for? it will be lovely when it is finished xxx
Linda, I also look forward to the day when l wake and don’t think of bc, l do try and go to sleep thinking about what l am going to do tomorrow, but can’t get by the waking and thinking it is still there!!! Hope you are enjoying the lovely weather xxx
Carol So have you bought yourself a hoodie to go with that ‘thug’ haircut you have? Hope you are well? xxx
Gill, Hope you are alright, Monday will soon come and soon go, fingers crossed for you xxx
Mum 51, well lets just stay with the good news! and let the chemo do the rest, we all have wobbly days, they are a must!! sorry to say!
xxx
Kris well done in completing your rads, pills! no problem! what is a few s/e between friends! lets hope they are very mild ones.
Hope your Mr Motivator comes along to help with the keep fit! xxx
Isabelle, Hope you are enjoying the lovely sunshine xxx
Heather, Waiting…for my next coffee break xxx
Hope? Are you on holiday in a desert island? Hoping you are well and too busy enjoying yourself xxx
Had a good day today, other than a ‘friend’ asked if l would get another dog if anything happened to Bliss!! l said no l don’t think so, as l do still have another dog! oh she said, not because you might not be here to look after it? Some friends you love and some…mind you, not really a friend, more someone l meet when we walk our dogs! remind me to walk another way ladies!!
When l met the onc on Tuesday, he said l would get a call from the chemo suite, and then a letter with a date, was really hoping to have the call this week, but no call, did you have to wait long after you saw the onc? ladies! before you had a call or had a letter? he did say start within 2 weeks, so they need to move it!! groove it!
Hugs to one and all
Sandra xxx
Hi Girls,
I had an exhausting morning, driving 80 miles round trip to get my new wig. Thats what come of living out in the sticks or up a mountain. A new look for me, I’ll do a photo tomorrow, I’ve got to get used to it first. More comfortable than my last one, and softer to touch too. Not fingers-through-the-hair-friendly though. I also stopped off at Swiss equivalent of B&Q to look at lamps for outside the house and kitchen lights, and forgot to look at kitchen lights. Chemo brain or what. Now I’ve got to go back before Monday when my Kitchen man comes back and tries to convince me to get lights that maybe I don’t want. Am I making any sense tonight ?
Vickie, I do hope you have had a better day. Fighting negligence cases would be a doddle after this adventurous fight, but only one at a time, so you enjoy your kids for the time being.
Linda, Thanks for the info, the studies sound interesting, and I will enjoy my 3rd weeks even more now. First one I came to UK to see my parents, it was lovely.
Carol, the thug shuffling papers, that’s a thought !!
Mum51 Well done on the hair cut project, you are just a few weeks behind me. My post op and onc appointments were very similar to yours. Glad to know all was gone, but shocked to know it was aggressive and needed aggressive chemo. Good for a few wobbly days. However I feel positive now. They don’t do this to us for the fun of it.
Kris, welcome, I think we met on a “not living in the UK” thread. We were probably in UK at the same time. I am so glad you managed a trip in the end to see the grandkids, Do you see them on Skype or video chat ? I find that’s a great way to communicate with loved ones. I love the idea of ABC. Good luck in the gym with or without sore bum.
Hope you all had a good day
Hugs Maria
Sorry, sent it twice
No, Sandra, I don’t think I will bother with the Hoodie-might get an ASBO. I was given an appointment on the day I saw my Onc for the following week,perhaps it’s because the Chemo team are only there at my hospital on Thursdays.
Does anyone experience aches & pains after FEC. I keep telling myself that it is my bone marrow busy making all those white thingies!
Nice drop of rain tonight after I went to the allotment and watered everything!
Have a nice weekend everyone
Carolx
Sorry Sandra,
You have must been posting the same time as me, so I didn’t see your post. No real highs with steroids, but no lows either.
What a strange “friend” you have. I don’t think I have any thing to say to that, I am speechless.
Have a good evening
Maria