insomnia and worry

Breast cancer for the under-50s

Breast cancer is far less common in the under-50s, but this can leave younger people with a diagnosis feeling isolated. This group is a place for them to get together, share experiences and support each other.

insomnia and worry

No. of entries: 17 | Posted on 08 Oct 2012 04:54

insomnia and worry

This question is not answered

Hi,

I have just joined today (well this eve) and wonderred if therei is anyone out there with insomnia?

I was diagnosed in May this year nad had a bouble masectomy in June..... I am not sure whther I am dealing with this ok as I have only told a few people and have only had 5 nights sleep since then.

 

x

All Replies
  • Hi topcat

    I'm so sorry your to hear your struggling but please don't think your alone in feeling worried and we are here for you at all times so please don't hesitate to talk.

    there is no set way of dealing with this terrible thing that quite frankly takes over our lives. 

    Have you spoken to your nurse to air out your worries and thoughts? they can also help with sleeping problems, i think if you can conquer the sleep problems the worry will ease too.

    there is so much to deal with throughout all of the treatments, i haven't had surgery yet but its coming up and it terrifies me but is worse when i am tired.

    If you don't want to talk to many people use this little family here to help, please don't do it alone 

     

    J x

  • Thanks jessie,

    i have only just joined this online chat but wish i did it months ago......

    I havnt spoken to my nurse as she was quite rude to me when we were discussing sursery. i said i would just have the implants as there wasnts enough fat to do both breasts and then she informed me that I wasnt having cosmetic surgery!!!!! it culminated in the fact that she had lost over 15 stone in weight and she indeed wanted breast cosmetic surgery as she stated hers were empty bags! i have been unable to really talk to her about it all since then.

    You are right, it is also really worse when i am tired but nice knowing i am not alone. x

  • Hi topcat,

    I don't have insomnia currently but did suffer a bit with it a few years back following a relationship breakup.  It was horrible and really does effect every aspect of life because your mind starts working differently when sleep deprived.  Apart from the night after my diagnosis when I didn't sleep at all I've always managed to get a good few hours every night.  I have told everyone about my diagnosis and I do find that for me this helps to make the whole thing feel less stressful.  Most people do survive this disease and I reckon that as long as I feel reasonable fit and well (give or take some chemo SEs) then I might as well let myself feel as relaxed and happy as possible.  No one knows the future so I try not to spoil today with worries about tomorrow.  Things that help to relax  me include listening to music (and making playlists of favourite tracks), a good cry, looking at photos of happy times, yoga, making Pinterest boards.

    Is your bedroom as relaxing as it can possibly can be?  After diagnosis I got myself some new bedding, cushions and some bits and bobs to make it into a little sanctuary of relaxation. Also make sure it is as dark as possible (you can get cheap blackout blinds you cut to size from Ikea).  Use some relaxing essential oils - either wipe the radiator with some or drops on the pillow.  I like lavender and clary sage.

    All the best and hope you can get some sleep soon.

    Nicola x

  • That is awful to hear you have been treated that way!!

     

    Never mind what she says this is your body, you decide what you want and actually in some sense it is cosmetic to do the reconstruction and who is to decide what is the right or wrong decision. i found a similar frustration when i was treated like a doctor had made my decision for me and i was furious.

    I wouldn't want to talk to her either and its heartbreaking to hear you have been spoken to like that when you have this to deal with this, isn't a choice. I would ring and see if there is another nurse you can speak to and of course there is here.

    Its so difficult expressing how to feel when some things seem bigger to deal with, i think my nurse thinks i'm crazy sometimes cos i ramble on about literally everything that pops into my head, but you know what it helps so I can always help as much as possible!

    Never alone!

  • Thanks Jessie,

    I know, I thinks thats why I havnt talked to anyone about it since....that and the fact that I still find it hard to believe. I just kind of got on with things and am not sure whtehr i have really began dealing with it....apart form when I see myself in the mirror! I still have more surgery as they now need to change the implants as I have been having trouble with them and they are also going to replace my nipples (they banked them under my arms to keep them alive and will replace them when all surgery done) !

    You have really helped me jessie and am now only realising that I am not alone in these expereinces and maybe it is ok to moan alittle?????

    Thankyou so much honey, how are you managing? x

  • everyone needs a moan and if there is a time to be able to we have every right to its now! 

    i totally understand what you mean about not knowing if your dealing with it "right" or at all and believing it is a totally different kettle of fish, i was so confused about what to think etc that i actually asked my chemo nurse if people get like post traumatic stress cos from being diagnosed to treatments all you can think is whats coming up not whats happening .. if that makes sense.

    I finished chemo on friday and found myself crying last night thinking what the hell has just happened these past weeks!!

    I was diagnosed end of may and to be honest everything happened so fast i kept saying to them just get on with it i haven't got time for this as i have just turned 5 year old son.

    everything moved from week to week and i found i needed it to its almost like keeping busy so for the past 23 weeks or so my agenda has been appointments.

    I have never felt so alone when i was diagnosed and no matter how many family members or friends i spoke to its not the same unless they been through it. they can only listen. I have found this online community prob the best place to talk.

    I manage ok i think i found myself worrying about the family more then anything and how they cope, I have 3 beautiful older sisters and they find it difficult because i'm younger and i my parents of course find it so hard

     

    sometimes i feel like i sound patronising so please tell me if i do... i don't mean to 

     

    J x

     

  • Thanks Nicola,

    i have never had insomnia before and probably thats why i find it so difficult?

    i still havnt told more than a hanful of people but maybe i should. I just thought i could sort it and get over it but I am finding i am more upset about it now than maybe i was before?

    x

  • dear jessie,

    just reading your words help. Its not patronising......

    i was diagnosed end of May too and was offerred my double masectomy within 14days. Within 2 mins of them telling me i had made the decision and told them i was going to go for it! The surgery got put off till June 14th which in a way was worse as I hadc myself psyched up for the 31st of may! Like you, i dont think I really had a lot of time to think about things and just got caught in in a whirlwind of hosp appointments and discussions on surgery dates etc..... I am also a single parent of a 3 year old and it just felt like i had to get on with things and just deal with it??? i am not sure I have,and your comment about post traumatic stress sounds a possibility?

    i didnt have to have chemo and cant imagine how that feels but did see my mother go through it.

    x

  • i don't think it is really possible to deal with it until its all over with and we take a big step back and look back on it a bit like after you have a baby and everything starts falling into normality and you have that "just ran a marathon" feeling.

    Its so hard being a single parent at the best of times but to deal with life changing decisions on top of it i think we are doing amazing.

    I was started on chemo as we weren't sure on what to do, because i am 25 years old i had to be referred to genetics and a lot of decisions were going to be based on the out come and through the tests i was given the brilliant news that my cancer will not effect my son genetically and my family doesn't need referrals so although they are unsure as to why i have it i can relax its not something they can predict my family will have. with this i felt so happy bu made me then be able to think about me.

    I was told, because of the genetics results, this could be down to bad luck...... Bad luck!!

    Just a little lol.

    I think coming to terms with it all is trying not to take it personally i had to explain to myself cancer doesn't care we are single mums, doesn't care our age etc and you know what i will not let this take over me. 

    It's nice to speak to another single parent of a small child... i say nice obviously not that we have this dreaded thing but that again it isn't personal... not sure bad lick describes it though

    J x

  • Totally echo those thoughts......

    I cant and we wont let this beat us for our families but for our young children. Being a single mum is also another issue and sometimes you dont get the opportunity to sit down and have a cry unless its the middle of the night as someone else cant just deal with them whilst you are upset! on the one hand i think it helps but on the other its harder as even though family help you are on your own with it when it comes down to it. my problem is also that i have just moved and dont have any of my old friends around anymore but havnt felt well enough or indeed strong enough to get out there and make new ones.....who is going to want to talk cancer ?

    As for bad luck, isnt that something you refer to when your car tyre blows and your spare is flat !!!!!!!

    x

  • Hola Chicklets,

    Ok I see this a little bit differently to you all and that's expected as we are all different.

    Firstly I'm a single parent too, I have 2 teenagers and trust me the age of your children makes no difference to this as they come with their own complications at any stage.

    I'm 41 and have no family beside my sister who is at the other end of the country, but what I do have is a sense of fun and humour and brilliant friends. Sure this isn't easy but sitting in and thinking the worse doesn't make it any better. Being a single parent makes us more resourceful, we've coped with tough times without anyone and can do this too. You don;t need to be alone, or keep it a secret, it;s nothing to be ashamed of or proud of, it's just life - 1 in 3 of us are diagnosed now and many, many of us will recover and live a long and happy life, for some of us that won't be as long as we hoped and yeah that is sh*t but it's real.

    I'm living my life, was diagnosed in May, had mastectomy and ax clearance, still have the beast in my body as it spread more than we first thought, so I'm hoping the intensive chemo and rads i have planned we chase it away for a while.

    I used to be a person that believed you deal with things after they happen and with my life events, losing my parents etc than that was the method I applied everytime - not with this ! Let is out along the way ladies, cry, scream, laugh, dance , shout, blog, moan whatever you need but don't think I'll wait till it's over and deal with it as you have to keep living through this and can't afford to get to the end and then be shocked and depressed over what you have lived through. It's imposible to always be positive - I am an optimist by nature but even I know and accept the reality of my life changes. I'm not meaning to sound harsh and it's my personal take on things but life is precious, share your worries with frinends,how can they understand if you shut them out, make new friends with people here who understand fears and worries a bit more but keep your old friends too as you need them. Don't be afraid to write down or blog how you feel if you can't tell someone - better out than in ...all the stuff you keep inside eats away at you and solves nohing. Ive involved my kids all the way through and talk openly it helps them when they have worries, sure it' was a shock at first but now we all laugh at my bald head and one boob. Ladies WE CAN DO THIS ..YOU DON'T NEED TO BE ALONE - SEEK THE HELP THAT WORKS FOR YOU . Complementary therapies are useful and help, anti depressants too if you need tham, counselling, exercise, ;laughter - still being you - I am it isn't changing anything I WANT to do - why should it ? It's a label and you don;t have to stop liivng just because you have a label

    Anyway it's just my thoughts, do what works for you but never feel alone as you aren't -good luck on your journeys :) xoxoxoxox

  • Thankyou all,

    As jessie says, it doesnt matter how old we are etc and eventhe age of our children but it has been useful to chat with another single parent of a small child. i can appreciate how older children bring issues with them and in a way my little 3 year old doesnt have the fear about cancer that an older child may have but I do wish i had joined this group before as some support and advice on speaking to little ones in particular would have been good. i too have talked to my little girl all the way through this and i dont want her to be as afarid of the word cancer as I have been in the past. i know we are all fighting to get through this but the company of others who have walked or are walking a similar path is good.

    xxx

  • I do think the children whatever age bring their little light in all this, I have been very open and honest about it all to my little boy, as far as you can with a 5 year old, and he has decided the cancer is storm troopers and the chemo is the jedis'.... i just thought that was a brilliant way (his way) of seeing it and its helped him and he doesn't like it when mummy is tired but which child does and he doesn't have the fear either and it is a massive relief.

    It must be so hard having moved to a new place and deal with this as well but like I say we are here to go through it all with you, must say it took me a good month to pluck up the courage to write anything on the forums its strange to be scared to talk to people you don't about the thing that we all know first hand but its great to get advice and a good chat with out sorrow eyes people don't mean to give when you see them face to face.

    i read a lot of posts and its amazing how many people write exactly what your thinking at the same time how things are so different for everyone

     

    J x

  • I don't have children so things are very different for me.  My in-laws have come from overseas and are staying with us to look after me.  They are doing all the cooking and cleaning.  I've also stopped work whilst I go through chemo.  Being self-employed means no income at the moment so we're using our savings and also OH's wages but it means that I can be very selfish with my time and just structure my day around my energy levels.  I'd imagine that with children, especially little ones, that's pretty impossible.  So getting a good night's sleep is even more important.  Have you had much time or space to process stuff?  If not,  then it's no surprise your mind goes into overdrive at night.  It's trying to deal with everything it doesn't have time to deal with in the day.  

  • Thankyou so much,

    I havnt had to go through chemo at the moment anyhow so have the advantage that i dont have that to deal with. One of my implants is catching on the inside of my body and now they have to change them both but wont do it till Dec due to not wanting to upset the scar tissue already there.i think you are right, dont get much time to process stuff during the day so it all gets stirred up at night time....

    I have been self employed in the past and I know its a pressure when you dont make it into work, so take your time honey and good luck!

    x