After 14 CANCER FREE years I found out yesterday that I have to walk the a same road for a second time…I was dx in 1997 at 34 with 7cm tumor extensive DCIS and grade 3 invasive, mx, imm recon, chemo (6x3) tamoxifen and zolodex, which I gradually stopped 3-4 years later …It was a hard road but the rewards have been great …I am married to a lovely man we married about 18 months after mx, we were friends before not an ‘item’ we have had a happy time and to compound our joy and despite everything, the threat to my fertility ( I was told I was unlikely to have any children) in Feb 2002 5 years after mx,( at just turned 39) I gave birth to a beautiful baby boy!! who was followed 20 months later by a daughter, who are the most precious gifts I have ever had, my little boy is autistic which makes me love him all the more!!! For anyone who may have read one of my comments before then I apologise for any repetition… I have enjoyed the last 14 years…
So after 4 months of toing and froing, fretting and worrying ( now that’s along story as I have moved since 1st dx and hospitals arent always good at talking to each other)I had a WLE 3 weeks ago today , 2 days ago went for the results and was told DCIS extensive and some grade 2 invasive there too and now I face mx + whatever else they throw at me???
I am fed up! and back to the stage where every little ache or pain causes concern …daft eh? but managing to keep cheery as it’s quite easy on such a beautiful day, I am once again waiting for hospitals to talk to each other before I get a timescale for surgery… I can’t wait to pick up my ‘babies’ from school and hug them! and I will repeat what I said to the surgeon " I’ll do it all again for at least another 14 years with my family" Heres to the next 14 and beyond!!
I feel better now I’ve said all that,
Hoping you all coping and doing ok despite whats thrown at you too x
J - you are right this really stinks! So sorry to hear that you have to go through this for a second time. Fantastic that you were able to have your two lovely children after the original treatment - they will help you to be strong enough to get through it all again. I hope that the hospitals don’t keep you hanging on too long - we all know that the waiting is hardest of all. Big hugs to you, keep posting to let us know how you are getting on xx
Thanks for that, though I’m not sure you will all want to be bored with my rants He He… but I will keep you ‘posted’ the kids keep me going they are so funny eh? My little boy was worried , we can tell by his behaviour and his ticks ( they think he may be tourettes too, but still at assesment stage for that particular one) I heard my little girl (just 7) saying (when I was recovering from WLE)" just because dad doesnt do your packed lunch doesn’t mean he can’t" bless her for reassuring him and him for worrying dad cudn’t do his butties…he thought because he doesn’t he couldn’t!!! v fussy bout his grub!!! lol
Thanks again xxxJ
Hi J
So sorry to hear you are having to go through this awful disease again.
I had tears reading your post.
keep ranting if thats what helps you get through it.
My children are older than yours (19, 12 and 10 when dx)but they still helped me through the hard times with the funny comments they came out with. My grandson (who’s now 4) also lives with me(with his mum)and he still makes me laugh with his antics.
Wishing you all the best and hope you don’t have to wait to long for communication between hossies.
Chris xx
J it was lovely to read your post, what a beautiful story and an encouragement to many. You are so right - those kids are a real gift - and will give you the strength to get through this next lot. Mine all started 21 years ago when I was 45 then I had the first recurrence 5 years after. I already had my family. Will you be back onto hormonal drugs again or is this one a different ‘make-up’? (don’t you just hate chemo-brain - I can’t find the word I want) LOL!
I hope you will keep coming back to ‘bore’ us - I for one will be looking out for your posts.
Thanks girls, my husband came home early for a cuppa with me and he’s gone to pick them up!! can’t wait, I love fridays! I am not sure what next, just sure of the surgery, was not happy when I heard the word invasive so I guess we’ll see what we see it depends on different things I suppose?? I opted not to have the SNB when I had WLE as I suffer with lymphodeama in right hand/arm, I was hoping that it wouldn’t be nec as I couldn’t bear the thought of not being able to get my wedding ring on if it(lympph) happens again on the other side!! how daft is that ??? Last time it was chemo? that was because of 7 cm tumor, this time won’t know I suppose it depends on how much more invasive lurking there and if it’s decided to visit elsewhere??? I’ll have to cancel it’s passport!!!lol. Talking of passports we have not had a holiday since our honeymoon which was a week in grand canaria in 1998 and we have (before this) booked to take kids to florida to disney!!! We have been saving for three years and it is something for us all to look forward to!! here’s to Mickey Mouse1!!!
love to all Jxxxx
J sorry to hear about your new diagnosis. I’m feeling sorry for myself going through chemo for the first time now. It feels like a never ending road but your story of your first treatment and recovery is lovely. Your wonderful family will help you through. Good luck.
P x
Thankyou I can’t believe your kind comments and encouragement, I would mention you all by name but once typing I can’t remember them!!! and don’t want to miss anyone out!!! so consider yourselves ALL hugged and thanked XX P I just want to say chemo ends and takes with it the badness, view it as a war wihtin, a war you can and will win!!!My sis in law used to joke with me when I was pregnant with my wee man , will it be worse than chemo…(childbirth that is)I didn’t think so …till I had madam a 10 pounder who raced into the world in under an hour!!! Anyway your allowed to feel sorry for yourself, lets face it it’s not pleasant, but summers coming and the world will become a brighter place for green leaves on the trees, and I’ve ordered a heatwave ( cooling every evening and raining for a couple of hours each night, dry by morning of course) that is going to last til the end of october!!! XXXXX
hi j i just wanted to say i have 6kids but my 10 yr son with autism is my reason for staying strong (well on the out side ) your story gives me hope for many yrs to come but i am sorry to hear that it has come back , as of yet my son knows only mommy has a poorly boob on wends i go in for my WLE and the day before is the day that i will have to tell my son thank god he is in a fab school as the head is going to be sitting right next to me when he is told i dont know wot he will be like or how he will take it as routine is going to change for him he dont do change well ill be gone by 730 am so wont be there to put him on school bus but i should be home when he get home so that should be better dont know if ill get him back to school come thursday tho cos i know he will want to look after me its funny how our kids help us all stay strong dont know wot i would have done without mine they have been my rock
sending hugs your way
maz
Maz ( hope I didn’t get it wrong)
Despite everything, I stay generaly fairly cheery and nothing much makes me cry, you just did!!! I can sympathise, saying my child is autistic is one thing living with it is another eh? My boy was 9 in feb this year and he too was upset to at the change when I had WLE so dreading a week in hosp!!!, we too wont tell him till the day…Phew you don’t need the added extras eh? but boy arn’t they worth it!! I cannot explain how much I love him. you know eh??? and to all you with kids isn’t it great how they can even make this fight worth while, boxing gloves on the prize is worth it, afuture with your babies XXXX Its good you have agood school and with my boy its a need to know basis, hope it goes well wed let us know xxx
Hi J
Just read your post, and am with you all the way, you can read my profile. My 2nd diagnosis was 7 years after my first, it it just so Sh’tty and not fair. However if you’ve done it once, you can do it again. The first time I spent a lot of time planning my funeral, and was just soooo scared. This time, I just got on with it (with all the ups and downs, of course). This time I knew I had to live forever because I have my 2nd son with Down’s Syndrome to look after and as I lost my husband in 2009, I am the only one left to do it.
I am now one year post 2nd diagnosis and although still tired, I am back to work at 50% and doing fine. I started a thread where I met a lot of lovely people who have helped me through it, and one of the ladies had a son with autism, I’ll send her here to say Hi.
I wish you all the best and the courage to go through it all again. Next spring will come before you know it.
Hugs and here is holding your hand
Maria
isnt it interesting how many of us have children with disabilities… as you know i also had BC twice but only 3 years apart however i have a daughter with Dyspraxia (now also with eating disorder and depression) but i love her and my son to bits.
once you know what happening treatment-wise im sure things will start to make more sense… and you know your gonna be in good hands.
Thanks Lulu, I understand that too, my wee man is formally diagnosed dyspraxic & autistic and is currently being assessed for tourrettes and ADHD, bless him , sent PM and will be in touch,x Maria thanks read your profile as you suggested, you have proved yourself made of strong stuff, your children are fourtunate to have a mum like you! and when you are a mum of a child with a disability its funny how even this (bc) takes second place, wishing you continued improvement
JXX
Can I hop in? I have a 13 yr old with autism and adhd and as I’m sure you all know it can be fun at times!!! and Yes he’s my reason for staying strong and positve (as well as OH of course).
I had chemo first, mx in Jan and now nearing the end of rads. I had two tumours both with invasive, dcis and lymph node involvement too.
I’m here to hold anybodys hand if they need me too.
Together we will be strong and get through and I’m sure we have some wonderful stories between us.
You can denise hop in here, just to say the funniest thing this weekend came not from my autistic boy, and he comes out with some corkers, but his little sister aged just 7’ my boob was sore after the wle i was wincing she said in a very concerned voice “are you ok mum…oh your just taking your boobie funnel (bra) off” we all howled!!! xxxx
They’re brilliant aren’t they! My lad said to me after my chemo was over but before my op: “Oh I guess you’re getting better then, seeing as you’re moaning at me again” Lovely!!! Makes you smile though
