I have been silently dropping in to the site and forums since I was diagnosed last April with grade III, TNBC aged 34. I had MX followed by 6 rounds of TAC chemo. Following inconclusive gene testing results I decided to have a preventative MX to healthy breast In March this year. Last Friday i had my temorary tissue expanders removed and silicone implants put in.
the past 14 months are quite a blur now, each stage of active treatment felt forever at the time, yet the 8 months since hemo finished seem to have flown by.
Friends and Family have been amazing along the journey, but they really do say some of the most shocking things. My favs have to be: You’re so brave, i couldnt be brave like you. It must be something you’ve done, did you keep your mobile in your bra/top pocket? or the newest one “well, now this op is done, it’s all over and you can get back to normal”
Normal, what’s that then? I am still shocked to see my reflection in the mirror every day. I know it was only hair and it is growing back at least, but i had always had long hair so no hair was quite a change. I gained 30lbs in weight and have lost 20 of those so far, but again heavier than i’m used to. I’m sitting here 6 days post op bored senseless waiting for he days to pass so i can get back to mummy and wife roles.
I have been challenged a few times in the past month about my ‘mask’. I dont wear a mask, just a smile. I’m not angry at Cancer, just grateful it could be treated, removed and my life prolonged. I dont want to die and find the school mum sympathy looks hard. The ones who look at youbwith the ‘thank god i dont habe cancer’ tilt their head to the side when asking how are you.
i wondered if anyone else felt like i do and how they embraced a new normal?
ladylizzy, that’s quite a journey, I pray the hope you’ve avoided secondaries keeps you going.
Can’t answer your final question, I’m trying to find it myself at the moment too, but I would encourage you to seek counselling. Your local Macmillan may be able to provide it or refer you to another group who can. You’re looking for a BACP qualified counsellor with experience dealing with cancer patients.
Others can’t understand what’s its like for us, maybe they mean well, but they do say some daft things! Good luck. Sarah
Hi Ladylizzy
i found the following article helpful … I hope you do too.
We all struggle to find a new normal … feeling like a square peg trying to fit into a round hole. It takes time.
Be kind to yourself. You deserve it
Hugs Lozza xx
MostMost of us on these sites know exactly Howe you feel I used to find myself crossing the road just to avoid people whom I knew would say the wrong thing or be patronising and we didn’t ask for cancer but like all of us here we will find the new us and hopefully get on with our new persona Good luck and if you pop onto the thread where did I go page 59 there is a poem which just about sums it up xxx
You are so reflecting how I am feeling now. Have done all the positive thinking but today that bit that wants to scream “aaargh” is breaking through. OH has been brill…ish. Family too but there is that bit of me that says…you have no idea. Is it over? No not in my head right now.
I hate the term, but I guess we are on a journey to somewhere. My Dad told me life is about learning. Some lessons you may feel you could do without. This may be one of them.
Any way, today I feel sorry for myself1. Tomorrow I will move on. Thank heavens for this site where you can say how you really feel!
I am fed up with sympathy. I am fed up with “I dont know how you do it”. I am fed up with “you are wonderful”. And as for “Get back to normal” well …what is that!
Hi ladylizzie,
Oh thank you for your post, i have not long joined this site or infact this whole journey so to know that I am not alone in feeling some similiar things to you is just great!! I had a mx on 14th May 2013 and lymph node clearance on 24th May 2013 and yesterday was the follow up to the clearance op. Fantastic news that 14 removed and all 14 clear, what a massive massive massive relief. The bandage was removed and the scar is already minimal so that will not be noticable soon enough.
I had a CT and bone scan and both of those are clear. The CT has however shown up something on my liver (the texture) they advised my consultant that they are not worried or concerned but might be worth a follow up. So whilst they are not looking for cancer and there is no evidence to suggest that this is cancer he has ordered an MRI to check it out, which is next Friday’s delightful way to spend a few hours…fatty liver they think!!!
So I am a bit gutted to be having another MRI but at least this wont be as scary/hard as the breast one. I had my first “top” up yesterday on my breast. It didn’t hurt or feel uncomfortable but it felt good to see a breast shape now, so emotionally it felt better. Also had my first physio which was hard. Both my plastic surgeon and my original consultant came to see me, very happy for me in how I have healed and my prognosis.
We are awaiting an oncology appointment to discuss whether or not I need chemo. I was told yessterday that it has never been discussed at any of the MDT meetings as something I needed, so I need to have a chat with him but my BCN said I would have to weigh up what if any benefits having chemo might have for me against the side effects. I have spent the past few months coming to terms with actually having cancer, now they are talking about me in terms of not having cancer as far as we can tell and now they are saying I might not need chemo and all the while I am still in shock of actually having cancer!!!
I am playing catch up…I cannot get my head around all the health professionals expressing joy at how I am and how great 14 nodes clear and family and friends are all so happy and yet my partner and I look like we have lost the winning lottery ticket!!! If someone had said 4 weeks ago I would get all this good news as I have had over the past few days I would have said OMG with one of two swear words I would imagine also and I would have been jumping up and down for joy and yet I feel flat and exhausted!!!
I go to pick up my little boy from school and I too see the “few” mothers who know turn away because they can’t/don’t know what to say and I want to yell at them and say it’s not catching and I didn’t chose this!! My friends have all said something similar to you “you are so brave” oh my god if I hear that again I shall cave something over someones head lol I am not brave I was given this fight and I am lucky in that I have been given a fight that compared to others might not seem as hard but I was/am constantly scared of dying and leaving my OH and 5 year old little boy so I definately have something to fight for so a fighter yes but certainly not brave!!
I am flat today, most probably exhausted actually but what I don’t feel is that I can “get on with my life like before now” as my life like before doesn’t exist! I have a better relationship with my OH, I have better relationships with some friends and others I know will never recover from this but for me, myself, I will never be the person I was before I oh so casually said to my Doctor “can you just check this lump for me please” the me that I knew then has changed forever. Not necessarily a bad thing but most certainly I have changed!!!
Karen
x
Thank you for all the replies. Am so sorry it has taken me so long to read them and respond.
Since my post i have been dx with Regional Recurrence to lymph nodes and Secondaries in Lungs. Came as a shock, so been trying to swot up on their new plan of action. I had a full ANC on Friday to deal with the Regional Recurrence and they intend to use the path report to plan chemo to treat/tackle Lung Mets.
I hope everyone is as well as they can be xxx