Can't sleep - just diagnosed

[Shep72]

Hi loulou

How are you doing today? How is your pain?

I'd love to read your blog ... is it in the rules that you can tell me where to find it?!

I'm trying to change my eating does feel a bit like I've shut the stable door after the horse has bolted tho!

Sending you hugs and wishes for a lovely day xxxx

[Shep72]

Treeze

Just posted to you on another thread... sending you lots of hugs xxx

[Treeze]

It's not been too bad thanks.confirmed kidney cancer and I have an appt with urologist on Friday then breast surgeon next week and ultrasound.Ops look to be happening around 3151st Oct and then depending on any remnants left more chemo or not then 3 weeks of radiotherapy.a lot to take in but I'm ok x

[Shep72]

Thank you, I like that saying, think I'll use that.

How has your day been? Did you get results?

Hugs xxx

[Treeze]

So sorry you've had a rubbish day.When the anxiety settles you'll be able to carry on like you did yesterday and like you will tomorrow.I tell myself this too shall pass.sure it's little comfort now but you have friends here xxx

[Shep72]

Hi all,

I'm having a really really rubbish day, I've been crying lots and I'm terrified I'm going to die! And to boot I'm really upset that I rocked yesterday and haven't maintained it today. I think it's a crash from yesterday all that anxiety and being super brave. Now I'm super tired.

My consultant mentioned yday I'm triple negative which I knew nothing about so peeped into another thread and saw one named 'is there any triple negative survivors out there' it's thrown me into a tail spin. Even though the thread has been running since 2012 which is a long time. My breast care nurse rang today and explained what is was and that surgery will give more info. From what I understand treatment is surgery, chemo or radiotherapy - I just can't have the radiotherapy.

My positives are my tumour is small, caught very early and early signs ultrasound show no lymph activity - surgery will confirm.

I don't want to die and leave my children, my daughter is 8 and my son 10 - I know I'm rushing ahead but the pain it causes in my heart to think I could leave them without a mummy is unbearable.

I've got dressed removed my bandage and managed to take off 2 of my steristrips from yday, I've been for a walk and now trying to relax but the anxiety is overwhelming.

Sorry for the long post xxxx

[Janey2]

Hi Loulou. Just wanted to reassure I hope. After surgery the breast was far less painful than under my arm. I'm a way ahead of you but now no pain in either breast or under arm. I'm now a quarter of way through my radiotherapy treatment and have learned to keep going with the exercises. Good luck to all of you. This bit waiting and worrying is the worst bit. Xx

[loulou50]

Hey Shep sorry for delay in getting back to you.

I read your posts and sounds really good- well done you!  See you CAN move forward- step by step is the way!

Well my 'help' just didn't happen but have seen a few other people which has been great.  I seem to get really tired easily though.  I think it's the crashing down of all the adrenaline as I get resuts Thursday and really cant even work myself up about it!  It's like I have nothing left.   The worst thing is I have burning nerve pain all around my underarm.  The breast part is mostly painless but the underarm bit is really not nice.  I haven't heard of many other complaining about it so I hope its ok.  I have been doing the exercises regularly and use my arm etc so think it mightjust be the trauma- hope so.

I have overhauled my diet a bit , strating to add in a bit more veg!  Organic milk , that sort of thing.  Trying to cut out the added extra hormones we don't need! 

I see you mentioned the colouring books- I do those too!  I love them.  I'm blogging my experience too- although not sure I can put that up here- not sure on the 'rules', but I find it really helpful to write. 

Lets think- laugh of the day- um..........opening the door to the parcel delivery driver in shorts (bed gear) and my green surgical stockings

Spoiler

Keep chilled, one step.......xxxx

[Shep72]

Ah lovely, enjoy the company

💗💝💗

[Treeze]

Got my good friend coming round and tv and relax.I haven't tried colouring yet but got some paints and some stones and going to do some stone painting when I'm in the mood.:) thanks for everything xx

[Shep72]

I hope you got some lovely presents and are not to tired tomorrow as a result.

Questions ... my mum asked me what my questions were and I said I couldn't think of any!!! It's hard isn't it ... what to ask, what do you want to know / hear!! I popped a little notebook in my bag today and as a thought popped into my head I jotted it down. Also used it after my appt note a few important things / words down.

Fingers double crossed for your results, it must be dreadful facing a potential double dose. I'm on my second cancer but my body kindly gave me 25 years gap!

Sounds like you do have an infection, hopefully some antibiotics will get that cleared.

What do you have planned for the evening? Any good tv or have you a book? Have you tried the mindfulness colouring in books - brilliant.

Sending hugs 💗💜💗

[Treeze]

Thank you I did.been out far too long today buying birthday presents and will no doubt be shattered tomorrow but never mind.Am rather breathless so get a lot of rib and back pain with that but managed to keep going.tomorrow is my day..I think..for getting biopsy results in kidney and it's a bit of a lucky dip as anything could happen so I'm bracing myself.should probably ask a million questions.my plan then is surgery followed by more chemo followed by radiotherapy but can't look that far ahead till I know what I'm dealing with.my bad chemo arm with my rubbery veins 🙂 has suddenly gone red and warm on the lumpy but..sorry bad description 🙂 so it might well be infected and need to mention that too.lets hope we all have a good night ladies xx

[Shep72]

Yes, it would be amazing wouldn't it!

What is your treatment plan? 3 months in though is good, it means you have achieved 3 months and the end is nearer to reach. Mind you on crap days that just doesn't help!

I remember doing surgery, chemo and radiotherapy 25years ago and you get into a routine of this new life and in some weird way I found comfort at the time of the structure and predictably of how I would feel. I'm hoping that knowledge will help me this time, knowledge scares me too tho!!

I've had my mammotone today and it was 100% better than I could have ever imagined so I'm riding high on that for a while. Results back next Thursday and fingers crossed my nipple stays. I asked about a double mastectomy but my surgeon said no, and I'm happy with his reasons.

I hope today is being kind to you and you have some energy to enjoy the day...

Virtual hugs xxx

[Treeze]

Know that feeling so well Shep..I want to wake and find its all been a very long dream..don't know what I'd do first...jump up and down laughing and run around doing stuff I think and appreciate how my body feels! I really miss having strength and energy just to go out a whole day and not get tired.its only been 3 months for me but in a way I can't remember just spending a day thinking of ordinary stuff..getting ready for work, errands I had to run, what to have for tea and so on.what did I fill my head with all the time?lets all hope for a good day today.look how great we all are! 🙂 xxx

[Shep72]

It's so easy to frighten ourselves isn't it... I have a whole pack of booklets that I can't really look through I find it to overwhelming and my anxiety then shoots up!

Wish non of us had to go through this, it feels so unfair. I'm waking early every morning and for a split second I don't remember and then it just washes over me and it's the worse feeling in the world. I want to be brave and do this with a smile but sometimes all I can do is cry and be frightened 😔

[Treeze]

I find that on Facebook on the macmillan threads..so many with people saying their life is ruined, how much pain theyre still in etc which relative just died.I've stopped reading them as theyre just not helpful

[Shep72]

Oh no you poor thing, but something else crossed off the endless list of things happening. How do you feel physically this evening?

Sometimes we have to be in our moods for the day, better out than in. How is your support network doing, over their coughs, colds and migraines? I have found small amounts of time with others helpful, it's just the crash back to reality that is a shocker and that's when the years come?

What is next on your list to wellness? Have you seen a consultant about radiotherapy yet?

Work went very well today, everyone was so lovely and I had lovely gifts too which made me cry! I intend working up to the week before surgery, much like you described.

Tomorrow is my dreaded mammotone and I'm going to ask the surgeon about having a double mastectomy rather than just the single. I feel it's what I would like - ease future anxiety and not have to repeat this experience.

Big hugs and here's to tomorrow being a good day for us both xx

[loulou50]

Hey Shep,

Thankyou.  I had my dressings off today and was soooo scared of that I burst into tears walking to the surgery and couldn't stop!  All was fairly ok, although had to have steri strips back on as one bit not healed properly 😞

It will be good for you to go back to work.  I did the same for a while but then had a few days off before the op so that I didn't pick up any lurgies! ( I work in surgeries)

It was quite good to get prepared both practically and mentally as best I could, but the going back to work first was good as it mean't sorting a few things out and also noting all the well wishes of work colleagues which really helped.

I too have googled a bit of positivity- but got bored with it and neck ache lol!!!  I have been a bit grumpy today and decided not to post any positive quotes but enjoy my grumpiness instead lol!!

I will be thinking of you and willing you to have  agood day.  Big hugs xxx

[Shep72]

Loulou,

My thoughts are with you on Thursday, like you advise me, one day at a time and bring your thoughts back when they rush off into outerspace.

It's so hard to read, connect and reassure ourselves because there is always someone out there who is having a similar but worse experience and then it triggers the 'what if / panic button'.

You've got this, you can do this just like I can. I've been googling positive quotes this evening to inspire myself .... drove myself mad with it in the end! Bloody positivity .... lol!

I'm off to work tomorrow first day back since diagnosis last Thursday, walking in will be hard but some normal for a few hours will be good.

Virtual hugs xxxx

[Shep72]

Just made my husband sinf that for me ... yep made me laugh 😂

[loulou50]

Treeze

Brilliant!  It works doesn't it!  Without wanting to make light of any of it, it just sort of puts a bit of space between the word and ourselves.  Whatever helps, but I know it doesn't help everyone. 

Im still trying to keep calm as I have my results Thursday and was diagnosed with grade1 cancer, but read so many are told that at biopsy then go and the news is very different.  Im not sure the boards help me when I read that sort of stuff 😞

xxxx

[Treeze]

Loulou a dear friend of mine did the word "mammogram" in the style of Al Jolson and it will stay with me like that now forever! 🙂

[loulou50]

Hey Shep,

That is so good to hear you have had a good day!  Good days are made of little moments- like happinness is, and you will still have these days.  Keep employing a sense of humour, because you may as well! 

Here is another little tip for you- say the 'scary' words -"chemo' maybe one- in a 'mickey mouse ' voice or sing it to the tune of 'happy birthday'- does it make you smile and seem more like- well just a word?  

Each day as it comes Shep- one step at a time, because that is how it happens- not like the car crash in our heads.   Soon you will have had your biopsies, and that will be in the past, done with.  Pat yourself on the back at getting through each step - thats really important.  You are doing something tough and others will help you, but you need to acknowledge yourself too.  I think of it all as learning.  What am I learning from this- and what is cancer teling me.

It definately tells me to look after me better- eat better quality foods and get enough rest etc. 

Ive had a fairly good day too.  Been on my own most of it as all my 'help' has gone down with a cold or migraines, but I have quite enjoyed it anyway.  I live alone now, but have two girls, 20 and 22- one at Uni and one local.  I have started writing a blog to help me process things and in the hope of raising awareness of breast cancer in ways that mainstream do not.  Its scary putting yourself 'out there' but liberating too!

I hope you have another good day tomorrow.  Sending positive vibes your way and virtual hugs.  We can do this - we will do this......just watch! xx

[Shep72]

Hi Brenda

Thanks for the encouraging post, and info on the mammotone. It's good to hear that you are doing well post surgery and gives me hope. I am at risk of double breast cancer due to my previous treatment as a teenager so I am now starting to consider asking if a double mastectomy is an option, I only want to do this once .. if you know what I mean.

I hope your recovery continues to go well for you

Xxxx

[Shep72]

Loulou

You are right it is a stumble! So I've stumbled into today and it has been a good day. My parents visited and made me laugh ... that felt great and we've told the children ... they were amazing my daughter 8 cried at the potential bald and my son 10 sniggered! That was truly magic and lifted my spirits no end.

I too use mindfulness I find it very helpful - sometimes tho like thurs and fri no amount of mindfulness seemed to help.

Please do let me know your results Thursday, your kindness and experience has helped me get to today.

Xxx

[Brenda77]

Hi Shep, I have just had a double mastectomy for breast cancer in both breasts.  One showed DCIS and the other was an 18 mm area, invasive with DCIS.  I requested mastectomies as I had small breast cancers about twenty years ago and wanted an end to it all.  I had the mammotone biopsy first and felt no pain at all.  It took about 30 minutes and the machine made a slight burring noise.  The only initial discomfort was the anaesthetic injection.  I only had my mastectomies two weeks ago and I am now managing to do bits and pieces at home and have not had any major pain.  I was lucky, it was grade 2 and the sentinel lymph node biopsies were negative so I do not need chemo or radiotherapy.  It was oestrogen receptor positive so I need to take a table, Letrozole, every day to block the oestrogen.  I really hope things go well for you too.  I was in a terrible state and could not sleep and was in a state of panic.

Lots of love, Brenda xxx

[loulou50]

Thanks Shep,

You just sort of stumble along to each bit really and you will get through it. The biopsies sound a bit more involved, but you wont feel anything and I guess they will get much more info that way.  It would be nice if someone replied who had had it done to put your mind a bit more at ease.

25 years of good health is very encouraging and once this blip is sorted I really hope you have the same again, and no reason why not.

It's very difficult to be around others I think and 'enter the old world' where things were 'safer' and just ok.  Suddenly we are faced with our own mortality in some way and that is very hard for others to grasp.  I feel sorry for people around me as it's really hard for them to get it right! Tetchy or what!

Is there anything that helped you manage your feelings before that you can use again?  Sometimes we forget we have some really useful resources.  I blog and journal, which makes me take a realistic look at myself and get things clear, but also use just a few seconds at a time of mindfulness when I get panicky.  I just say 'what is actually happening NOW" and remind myself my thoughts are running away with me.  Mostly it helps.  There are times of course where I can't stop the anxiety but that's just how it is- I don't fight it, I try and ride the wave so to speak. 

Give me a shout if you think I can help or just want a rant.  I know we have things a bit different here, but lots of it affects us the same.  When are your biopsies booked for? xx

[Shep72]

Well done you for getting this far ... fingers crossed Thursday brings you good results.

Radiotherapy is tolerable from my experience but that was many years ago! I don't know much about tamoxifen but I guess like my previous treatment which has put me at risk of breast cancer it's what works at the time. My treatment gave me 25 years good health.

I've already had 2 biopsies which were ok, apparently this is a different noisy and takes about 15/20 mins under local anaesthetic.

Yes I would be a rich woman with all the positives I've had! People mean well and carry hope but it can be a bit argh!

Sorry to hear about your mum, what a weight for you both to bear ...

Xxx

[loulou50]

Hiya,

Yes it's completely minging sweetie but we will get through it step by step.  My cancer was diagnosed 4 weeks ago- grade 1 and 1cm.  I had the op Monday- lumpectomy and some lymph nodes removed.  It wasn't as bad as I thought, but it is a trauma, so feeling a bit sorry for myself and fed up with not being able to wash under my arms properly (Phoooo!!) 

My results will be Thursday at 11 am Gulp!  That is the scary bit, but I have been told most likely radiotherapy and tamoxifen ( tamoxifen scares me because of side effects and possibly giving uterine cancer- I have genetic link here).  However, until they look at it all it is possible more ops and chemo, so I guess it can all change dependant on result.

Im not sure if you mean just the general breast biopsies- but yes I have had those- it was ok.  One hurt , but not unbearable- you will cope ok believe me ( I am a wimp!).

I think people's reactions are the hardest to cope with.  I went for a walk yesterday, just a short way, and someone said 'whatever are you doing out here!"  I felt like I should be behind a door with a cross on it or something!!! Grrrr!  Anymore 'be positives' and I might have to punch someones lights out ( with my good arm). 

It's all we can think about right now I know- but try to remember how you got on with your life before- gradually , but it happened, and it will happen again.  My Mum is half way through chemo for bowel cancer- she's 82- she's doing it- we can do it! Keep focusing on just what is right in front of you and all will be well.xx

[Shep72]

Hi loulou

Thanks for your reply. It's just horrible isn't it, how are you feeling? What is your plan of treatment? I'm swinging from calm, practical to an overwhelming sense of anxiety and panic. I'm hating telling people it like I'm giving them some really rubbish news that makes them sad and that's not a nice feeling.

Have you started treatment yet? Have you had a mammotone biopsy?

We can do this xx

[loulou50]

Hi Steph,

Im sorry to hear that this disease has struck you again, and as you rightly say, it is so unfair.  It sounds as though naturally there are a lot of fears amongst the anger, and I truely hope that some replies you will get re those fears will help you gather some calmness amongst the storm, but I would say allow yourself your feelings. 

Although I am in a different situation to yourself, I have been newly diagnosed with invasive breast cancer about the size of yours too.  I share some of the feelings you have, although I am sure the sense of unfairness is much more raging second time.  I just wanted to let you know someone is listening, and that I am willing you to be ok and know that you can do this, you really can. x

[Shep72]

Thank you so much x

[Janey2]

Shep sending you a huge hug. You've been dealt some rotten cards. I hope you have an understanding and helpful breast cancer team around you. This site can be a huge support, but I'm so sorry you've had to join the rest of us here. It's a safe place to let go of what you're feeling, especially when you're trying to be strong for everyone else xx

[Shep72]

I received the dreadful news yesterday afternoon that I have invasive ductal breast cancer - its grade 2 and 13mm in size. As I previously have had cancer some 25 years ago (44 now) for non Hodgkin's lymphoma where I had chemo and radiotherapy I can't have radiotherapy again. So what would have been a lumpectomy with radiotherapy is now a mastectomy with chemotherapy.
I know my tumour is small in size and for that I'm lucky - yearly screening is the positive here.
But - I'm scared, I'm angry and can't stop crying. I can't sleep, my mind is a whirl of thoughts - my children (8&10) my husband having to watch this happen and coping financially having time off sick.
I'm so angry that I get cancer twice - it's just not fair and that what I had as a teenager still is effecting my life now.
I'm scared of the mastectomy - the op, the recovery.
I'm having a mammotone biopsy under nipple next Tuesday to see if they can preserve my nipple. The biopsy scares me.
I'm sorry for the length of post and for being so negative - I just wanted to talk and reach out to someone who may understand. I struggling to keep my anxiety under control tonight