I know there are a lot of threads in this section,i wasnt sure if to add to it or just read others.
I have a lot of thoughts and questions, i must have gone over every single thing in my head and i am having trouble sleeping.
I am not too scared about lumpectomy or even removing my breasts i am more scared about cheamotherapy and missing out on my sons life (his reaction to seeing me so poorly). i havea lot of ‘why me’ thoughts and feeling like the next 2 years are a write off (if i survive).
i love how normal i feel right now though as i know ill be fighting to get back to normal for a long long time, trying to stay positive and grateful for what i have. Myson is 6 and i have a partner. There doesnt seem to be any support groups near me in the north east, this is the first forum i have found. Any help at all is so appreciated.
i would like to write my thoughts down throughout this journey is there anywhere in particular i could do that?
Tracey
Hi Tracey
I’m sorry you have found yourself on here, but it’s a really good place to ask advice and share your feelings. I’m 39 with a 6 year old and I was diagnosed at the end of June. I have just had a mastectomy with immediate reconstruction, and I am making a really good recovery so far.
Have you been told a treatment plan yet? The first few weeks are the worst as all sorts of scenarios go through your mind. I kept thinking every ache and pain meant if had spread etc etc. After I was given a treatment plan, everything looked a lot more positive. Most people on here will echo that too.
I may have to have chemo depending on the pathology results which is the part I have been dreading most, but if you read the stories on here, everyone is with you the whole way.
Your Breast Care Nurse will be a good point of contact and may know of a group local to you where you can speak to people who are going through the same thing. I have found a support group near me, by looking on Google and they have a Facebook page which is invaluable. A lot of your fears and questions can be shared on here too if you feel that’s something you can do.
Please try and stay strong as I promise it does get better
Sending big hugs
Sarah x
Hello
sorry you’ve had to join the special club I totally understand how you are feeling .
I’m 37 with 3 children under 8 I was diagnosed 30/3/16 although noticed the lump may 2015 was assured it wasn’t cancer at 17mm a year later 40mm grade 3 so as you can imagine I was raging anxious thought that was it if you had seen me 01/04/16 you would have thought I needed sectioning !
its all part of the shock numbness why me what have I done all normal.
once you get your treatment plan and things start to move it will be clearer in your head I still have them wobbly days I’m 3 days post chemo 4 of 6 .
chemo isn’t that bad I found pregnancy worse lol.
take each day as a gift it will change your outlook on life I used to stress constantly now I’m chilly oh well da Sara Sara you will be surprised how amazing are bodies are and how strong we are able to cope you can do this and there are an army of women who have gone through it and going through it that will be here to support you xxx
Right here on this board and anytime that you want to and however you want to!!:womanhappy:
Your BC nurse maybe able to help point you in the right direction for a support group. My own BC nurse has already given me pointers for when I’m ready and they are all local to me and Ive not even started my treatment regime yet.
Any questions you have write them down so that you ask your BC nurse or consultant the next time you speak to them. Some people here may even have the answers for you from their own experience and will tell you in simple understanding words.
A work colleague told me that she wrote a journal and wished that she’d finished it - and I too have begun a journal - it keeps things in focus - because right now your head will be all over the place and writing things down is sometimes easier than talking to someone - even a blog might work for you.
I have been where you are with the sleeping thing and on advice from my BC nurse saw my GP for sleeping tablets. It’s exhausting enough having to deal with the fact that you have a diagnosis, future treatment as well as daily life to deal with.
The vicious circle of up half the night, snoozing through the day and so on was sorted for me with (so far) only two nights of sleep with the help of sleeping tablets. My GP was ready to put me on anti-depressants and counselling but I’m not ready to go down that route yet - so sleeping tablets in the short term have got me over that particular problem and i’m normally a positive half glass full person anyway.
We are all in this together fighting our own individual battles. I love the saying that I saw on a thread somewhere that says ‘cancer started this battle - I’m going to finish it’ :heart:
Hi Tracey
The anxiety and worry is so understandable. I was diagnosed on 27th June. I’m 37 with a 3 and 6 year old. My anxiety was so bad between diagnosis and my first chemo which was 13th July that I lost half a stone and did not sleep during that time. I agree with the other ladies. Go to the Doctors. I gave in and it helps. The ladies on the chemo forum are all very helpful and can answer any questions. My anxiety affected me more than the treatment. Each person is affected differently. i have been able to still be their mummy. And you will be too. There is a blog by someone called Contain who lives near me which might help called Silver Linings which might give you an idea on how people write about their experience. She’s 32. Xx
Meant blog by Cynthia Murphy
Thank you very much for you reply Sarah I certainly never thought I would find myself on such a forum. How has your son/daughter found it? What have you told him/her. I have been told I can either have a lumpectomy or remover one breast (they didn’t say both I’m not sure why) I felt I was persuaded into lumpectomy as it’s only 12mm however I feel a lot of pain all around my breast and wonder if I should just go ahead with a double mastectomy as I’m terrified of losing my life.
Chaemo sounds awful although I have read some positive posts and seen how happy people are after recovery so it does seem achievable. I’m just worried I don’t make it or I can handle all of the suffering and pain and therefore become lonely and depressed. I am so glad I have found this forum. Where are you from? X
Thanks Dotty your post made me laugh pregnancy is hard especially labour. U am glad to hear you have such a sense of humour during your difficult time. Maybe things aren’t going to be as bad as I think. I am one of those people who stress and worry so much and always have and now I feel so lucky and happy to be driving a car or in a shop have never been so happy to be alive yet so scared to be alive at the same time xxx
Thanks swampy I will try to write on here when I can. I have also thought about a journal I think I have upset my partner even more sharing all my fears and questions and I mean horrifying questions which I could have wrote down and researched myself. I have only just been told so I haven’t had much to talk over yet. I have a big decision to make as they want to do my lumpectomy in two weeks buy I had planned a dream vacation joint with a small business trip the doctors have told me I can still go as it only delays things by two weeks but I can’t help but think if I do go I’m allowing it to spread or playing with fire although if I don’t get through this it could be my last trip with my partner, tough decision.
Thanks for your reply, sleeping tablets will hopefully help me xxx
Thanks fluffymittens26 I will look into her blog need all the help and support I can get. Its surprising how I can be so normal during the day and so upset during the night. I am glad you feel you have still been able to be a mummy to your children. I already feel I miss my son and I’m not bed ridden yet (will I be bed ridden for months? One of my biggest questions) xxx
Hi Tracey
My little girl has been quite matter of fact about it all. The nurse recommended we told her without going into too much detail. I basically said I had a lump which was making me poorly and I was going into hospital to have the lump taken away and then it might mean I had to have some medicine too a bit later which might make my hair fall out. I have never used the word Cancer as my mum sadly died from Ovarian Cancer and I don’t want my little girl associating the two. Kids are very resilient though and she is more interested in looking at how much my drain has collected each day! Why do kids like such gory stuff?!
My nurse also gave me a book to read to her called Mummys lump, which I haven’t actually read to her as we’ve explained as much as she needs to know. She also have me a dvd which gives advice on how to tell your kids. Maybe this is something you could ask your nurse for if you think it may help?
You will get through it and like I said earlier once you start with the treatment things will seem more positive. If you feel like you aren’t coping then speak to your GP or nurse and they will be able to help
I am in York so not a million miles from the North East!
Sarah x
I am near York too,
I went on holiday and although it wasn’t the same as it would have been without the diagnosis I still managed to have a good time.
My kids are older so I have been completely honest with them. I waited until my youngest finished gcses before telling her but since then she has been attending appointments with me.
I don’t think you will be bedridden for any length of time. You are more likely to be advised to be up and about I would think and to do the exercises they give you.
Xx
Hi Tracey , I was diognised on the 8.7 16 at 12.20 precisely , a day and time perhaps for the rest of my life I won’t ever forget . I like yourself was in limbo but 21/2 weeks down the line I’m finally trying to get my head around it all . My next journey because that’s the title of my blog is Friday I get told what they intend to do . I’m gearing myself for the impossible and il take on board what ever they throw at me . I just want this little monkey to go away .
ive just come back from a week in Greece because the consultant assured me I would be ok to go . I panicked a couple of days before we left fearing the worst imaginable every ache and pain I had I thought it had spread but again the BC nurse was great she talked me through everythink and told me to enjoy myself . eVen talking to other ladies on here going through this point of the journey feeling how we feel or ladies who have been through it and now enjoying life is so uplifting to hear .
Dont get me wrong Tracey I have my days where I look at my two boy 19 / 14 and just burst into tears , I’ve sat with them and explained everythink oldest was brilliant , youngest went very quiet on me wouldn’t talk about it until we came back from holiday and I had a heart to heart , told him not to be scared I’m going no where it’s going to sorted and I’m in the best care possible , I said talk about it because it will make you feel better and it also makes me feel better ( touch wood he’s back to himself) and surprisingly he’s asked me loads of questions .
posative thinking all the way is the key I’m told , We all know we are in the best possible care and we will all come out smiling youl see ???. Il let you know what they’ll tell me Friday …keep smiling Tracey lv hugs xxx?
Wow benno. Thanks for sharing! I do really want to go on this trip. I feel like I’m getting paranoid now I know it’s possible to spread elsewhere my jaw feels tight and my stomach aches but is that because I’m getting paranoid? Will I be able to go away and enjoy myself or will I feel I’m risking my life? How did you feel on holiday were you able to relax and forget about it all? I had a test on a lymphnode and I’m off to hospital Wednesday I have a feeling they have found something there too and will say not to go away even though they were okay about it last week. I also feel I only have this appointment to decide on lumpectomy and mastectomy and it all just feels too much to decide on so soon, really feeling the pressure. I’m also back at work and it feels like such a waste of time when I now realise how precious life is!!
I hope Friday goes well please do let me know what is said and how you are feeling about your treatment plan. I’m glad your kids are being understanding. Cancer is a scary word my son doesn’t understand he’s too young and I don’t want him to understand. Just want to live through this and get to the other side!! ? xxx
Hi rosebud 6 thanks for your comment. Wow u won’t be bed ridden through cheamo? That’s totally how I pictured it thanks for opening my eyes. I’m glad you had a good time maybe I’ll be okay to go did you have anything in lymphnodes or just beast? I’m wondering if that effects my decision. I think you did the right thing waiting till after gcse’s it’s a hard secret to keep I felt strange at work today xxx
Hi sarah04, thanks for your reply. I think I might tell him about my hair he will be fascinated rather than concerned and probably be the same about any kind of drips/drains whatever they are called. You sound positive about it all and your a mum like me so it’s very reassuring. The book and did sounds good I will ask. Are children ever allowed to come in the room for chemo? Or is it not advised? Xxx
Hi Tracey
My BCN said if my little girl wanted to look round the centre then she could. It’s not something I want her to do really. She came to visit me on the evening of my operation and was more fascinated than anything else but for me personally that was enough. I want to keep things as normal as possible for her and I feel the amount we have told her is enough really at her age. To be honest it goes in one ear and out of the other mostly anyway! X
Il deffo let you know about Friday …get scared when I think about it but il go with the flow and listen to them …I asked them about my holiday on day of my diagnosed and they said sure you can go , go and enjoy try and relax and will see you when you get back …like yourself I was paronoid about it spreading but Tracey you’ll find that’s not the case and all the aches /pains are related to aniexty …my comes in waves but I’m learning to deal with it ,iv got back ache constantly but I know in my head it’s because I’m not relaxed ever ,not until they tell me what they intend to do …my holiday was enjoyable but every now and again when I was enjoying myself the tears would appear … Your right cancer is a scarey word but a word that can be dealt with …il be thinking of you Wednesday …lv hugs ?
Hi I was DX in may and have 2 fec. I’m 38 with 2 girls aged 8 and 11. When first dx with tnbc my world imploded. I was in complete and utter shock and could not begin to fathom how this could happen to me. I had the perfect life and everything to live for. It does get better when you start treatment… You suddenly comprehend that there is only one way forward. Its hard to stay positive but I look at my children and what choice do I have? I found the hardest part was telling them and put it off for quite some time. I told them I had a nasty spot in my boob and that very special medicine would take it away. But that medicine would make me loose my hair. They were upset and shocked but have seemed to carry on as normal. They’ve seen me with my bald head (which I only shaved on sat). My eldest doesn’t like seeing me bald so I do where my wigs during the day and a scarf a night. I got the mummys lump book, which they’ve read a few times and its suitable for them to understand.
Its not easy for any of us. Its bloody hard and not fair. But what I hate most is that its not fair on my children. But I’m trying my best to keep things as normal and be strong for them.
I hope you all are ok and your journey is as best as it can be.
Chemo is a shock to the system. Hopefully your side effects stay minimal. Its a means to an end…a positive end… Hopefully!!
Vent your thoughts and worries on here. There is always someone here to talk to.
The advice and shared experiences have been invaluable. Sending big hugs. X
Hi Tracey. My lymph biopsy was clear but we won’t really know until 2-3 weeks after the operation and they have tested what they remove.
I hopefully won’t need chemo but I know lots of people who have for various reasons and they have been up and about between treatments.
I know what you mean about the big decision and although I sometimes have the odd doubt I know that it is the right thing for me and I have been much more stable emotionally since making it. You will do what is right for you and you will get support from your BCN. This forum has been great for helping me know what to do and expect xx