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scared now the reality has hit me

56 REPLIES 56
Matty2
Member

Re: scared now the reality has hit me

Of course you'll be fine come September - it is a target to aim for.

I have set myself targets, some are little ones for a day by day approach, some are for next week (perhaps a supermarket trip(can't believe I'm saying that!!!!) have  target of flying to visit a friend in France in May - never done anyting like that by myself before!

A target of getting through the bone scan on Wednesday without tears or bottling it up!

I look on this whole journey as a series of steps to getting away from the Beast.

I have already had mastectomy (3 weeks ago) and am already taking hormones, do not need chemo(yippee) and found out I don't need rads either (double yippee)

We all have a journey - a staircase to climb.

On the way be prepared for the tears and the sheer emotional roller coaster this Beast forces on us - but of course that's why you hve jined us for support, and laughs and advice

Beryl xx

 

suedehead
Member

Re: scared now the reality has hit me

Hi Gill,thanks for the reply. You are such an inspiration! I'm writing this through a face full of tears! Your sister sounds a scream! My sister is in Australia so that's hard.it was awful telling her the news over Skype.just want to give her a hug. She had booked flights home in September for 3 weeks coincidentally a couple of days before I got the results, so it will be good to see her. Hopefully I'll be feeling better by then! Hugs to you. Jackie x
ThePianist
Member

Re: scared now the reality has hit me

Hi Jackie.

 

The one thing you are not is alone! I had exactly the same outcome as LoobyLou (Hi again) and there is no reason that you could not have as well. But even if it's not the same journey you will not believe how quickly it actually goes. I had my surgery on 30th June last year. I simply can't believe where the time has gone! At the time I thought every moment doubled in length but that's your mind playing tricks on you. Honestly, there is not only light at the end of that bloody tunnel, there's the rest of your life to be getting on with. You may not think it right now, but you will actually have a few giggles over the next few months - I know I did. Just listen to the ones who have been through it - there's millions of us and we're all still here and joking about the blue boobs, luminous wee and the offers to pick up your chicken fillets should you lose them in town! (I never actually told anyone that, but that was my twin sister who offered to follow me around in case of embarassing dropouts!)

 

Anyway, chin up and when you feel miserable log on here and have a groan!

 

Lots of love to you

 

Gill

 

suedehead
Member

Re: scared now the reality has hit me

Hi Sarah, thanks for replying. How are you feeling? I think that's what I'm worrying about the most, how I will feel after the op. Are you having radiotherapy? I have total trust in the clinical teams (have to say that as I work in the NHS!!!). Just feel so alone at the moment- even though I have the most amazing husband and kids and my workmates have been fab. Good luck on your journey! Jackie xxx
suedehead
Member

Re: scared now the reality has hit me

Hi Loobylou, thanks so much for replying! When do you start your radiotherapy? I'm going for a bone scan on Tuesday,then results on Thursday when hopefully I will know what the plan is. I think I'll be more settled once I know when things are happening. Never had any sort of surgery before so this is all new to me! I don't think its sunk in yet, my mum cries whenever I talk to her, as do my friends at work. Although it's lovely to know they are so supportive it's really hard seeing their reactions. A nurse practitioner I work with just bluntly said 'oh no are you worried about bone mets?' Which I hadn't even considered before! Good luck with your treatment, lots of love x
loobylou111
Member

Re: scared now the reality has hit me

Hi sweetie,
There is definitely a light at the end of the tunnel, infact there are some lights as you go along the tunnel. Like you had same diagnosis last dec, since then I have had two wider incisions (no mastectomy), a lymph node or two removed and had the encouraging news that all the cancer has been removed and lymph nodes clear. Now today (like you told to expect radiotherapy, chemo, hormone tablets) I have been told I need the hormone tablets and the radiotherapy but no chemo!!! You never no this could be your outcome. You will beon a roller coaster of emotions so never beat your self up for being upset. Good luck with your journey to life beyond cancer...you can do it!! ((((Hugs n love))))
keepmumsane
Member

Re: scared now the reality has hit me

Oooo I have one. Its twice my size but deliciously soft. The pattern is on tit bits. Mine was in the cancer society gift bag with a heart shaped pillow. 

I need to unpick a seam to reduce the fill but actually its just nice as a stress ball... mine is sky blue. Oddly appropriate really 😉

Xxxx

Pahahaha,  cod liver... next time its cat biscuits ?

Snort

Xx

JETS
Member

Re: scared now the reality has hit me

Rosie x cod liver capsule made me think of candid camera too - joked to a friend do you reckon they all sit in the pub afterward and say " I got for liver oil capsule on mine today!! " .... Check out knitting knockers - these are ladies who knit foobs for ladies who have had mx - it's been recommended to me I wasn't convinced initially but figure I'll give them a go !! You might want to get involved! Sarah
JETS
Member

Re: scared now the reality has hit me

Hi Jackie - I'm mum of three never smoked and also 45 ! Just wanted to say there is light - mine sometimes still gets a bit foggy as I am early days had bilateral mx on 12 jan and waiting for oncology meeting next week but I do try to focus on good news bits and pieces - you will too x there is masses of support on here and we never mind if you are up or down x no one chooses to have cancer but there are amazing clinical teams in this country that will be working round the clock to get you wellx hang in there xxx sarah
suedehead
Member

Re: scared now the reality has hit me

Feel exactly the same! Diagnosed with Grade 2 invasive ductal on Monday. Will need mastectomy and rads then possibly chemo. Just wasn't prepared for this- I'm a relatively fit 45 year old mum of 3,never smoked etc etc! Feeling sorry for myself today, think it's just hitting me what's to come. Trying so hard to put a brave face on at work and in front of hubby and kids but finally lost it today😰 please tell me there's light at the end of the tunnel? Tried to ring breast care nurse today but they're not in😓. Got so many questions. Jackie x
Rosie_Rabbit
Member

Re: scared now the reality has hit me

Had the MRI this morning Cat Very Happy An amazing machine and a wonderful radiographer, a total credit to her profession. At one point where they attach a cod liver oil capsule to each nipple I did wonder if I was being set up for candid camera, but apparently the machine can use it as a marker. No problems with being in such a small space, in fact i may take up potholing and if I have to have the left breast removed I could probably navigate left hand bends with comparative ease Cat Wink

 

Thank you ladies for the advice re finance, that is very kind of you. The BCN nurse was true to her word and left me some literature on finacial support to pick up this morning, so I'll go through that tonight.

 

Currently having a mug of green tea and knitting with cat on lap - bliss

 

Rosie xxx

Anniegran
Member

Re: scared now the reality has hit me

Hi Rosie, as someone said to me, the experts know what they are doing and the tests Mean better diagnosis and the treatment that is best for us, we just have to have faith and hang on in there.. Big hug, Ann
Anniegran
Member

Re: scared now the reality has hit me

Hello everyone, it is all a bit overwelming. I was found my lump on 3rd December and Cancer was confirmed on the 12th. Further tests were required and have confirmed that I am borderline Her2 positive. My 'lump' is 4 to 5cm and Grade3. I am to have chemo first (Taxol+Herceptin) followed by mastectomy. I think I will start Chemo on the 6 February subject to result of Heart Ultrasound and CTScan. I am really fed up with the waiting. I just want to get on with it. Yes, nights are the worst. Going to take a hot drink up to bed tonight as suggested.
I am lucky that I have a lovely husband - we are both trying to put on brave faces and be positive most of the time.
My friend, who had a different type of cancer, had financial problems and MacMillian were marvellous. She had a one to one with one of their advisors who sorted out Benefits for her and pointed her in the direction of other people who arranged transport and a Service Charity that gave her a grant to put in a shower in her bathroom.
I keep on reminding myself that the reality is nearly always better than I think it will be. Hope I am right.
Good night everyone, hope we all have a good nights sleep.


pjw
Member

Re: scared now the reality has hit me

Rosie

Ask your breast nurse or hospital about volunteer drivers. A family member used this service for her radiotherapy appointments. She just contributed towards the petrol. Not free but cheaper. Speak to Macmillan they provide grants for things like travel etc , plus benefits advice and should be able to point you in the right direction for help xx
JETS
Member

Re: scared now the reality has hit me

I know what u mean Rosie x I did snap on Xmas eve ..... But then got put back together and here I am toddling on x rest, try not to dwell, take each day at a time x hugs sarah x
Matty2
Member

Re: scared now the reality has hit me

Hi Rosie

I'm coming out the other end now but I looked at the hospital visits/tests as steps, no matter what was said or done.

Each step was a step to beating the Beast, a way upwards and onwards.

 

Beryl

Rosie_Rabbit
Member

Re: scared now the reality has hit me

Thanks Sarah and Gazzlyn,

 

That does help. As i posted on the other thread a few mins ago no treatment plan tomorrow, instead an MRI scan and (hopefully) the treatment plan at the end of next week. I spoke to the BCN on the phone and she is leaving me out some info at the Breast Screen Reception desk on how to get financial assistance. So i will pick that up tomorrow before the scan.

 

It's just that you think that you have used up all your positivity to get to results day and then you find you have to stretch it a bit further and then a bit further after that. Then you get to wondering how far you can actually stretch mentally before you snap all together.

 

Rosie xx

JETS
Member

Re: scared now the reality has hit me

Rosie - Im on my own in the sense of being the only adult in the house and have actually surprised myself at how I have coped - you will too. I am lucky to have 3 months pay at work but the finance has been very worrying for me - there is a booklet by macmillan on 'help with the cost of cancer' - ask your BCN for it tomorrow after the meeting. Its quite a big booklet but explains some of the financial help that is available to you etc. The way my treatment went was meeting with the consultant and other clinical staff then off to a quiet room with the BCN to be given helpful leaflets and actually explain everything! Also - be braced that you may have more tests tomorrow (you might not but I did and this threw me a bit...). Lots of people on these forums work through chemo and report to only having a few bad days after each treatment. This could well be your experience so try not to dwell on the more worrying aspects that you read. I may yet have chemo (have oncology appt on 4 feb) and I have read a bit about the side effects but then decided that I would take peoples tips on these forums but would just wait and see what happens. I havent had an easy ride so far but am definately getting more and more positive days and feel like my brain is waking up a bit again - out of the whole cancer fog that it was in for about 2 months! Will be thinking of you tomorrow.
Sarah
gazzlyn
Member

Re: scared now the reality has hit me

Big hugs to you Rosie Heart, I dont know what to say other than I am so so sorry that you have the worry of finances whilst going through all this.  I hope you are able to talk to your BCN to see if she can put you in touch with someone who can help with this xxx

keepmumsane
Member

Re: scared now the reality has hit me

O rosie, that reading ahead thing is a real trap. Scared the heck out of me too. 

My chemo nurse said yesterday that they really can manage things for us or else its not worth having the chemo. he said read it and then forget it.  The only one to remember is your temperature.

My 11 year old said imagine the worst stuff but it wont be that bad.

The ones with less symptoms are out doing stuff. 

Xxx

It bites, its such an unknown.  I ran in mental circles too. Much love ,  agree the travel cost hurts.  Do you have a cancer society volunteer who could drive you? There must be something.  

Xxx

Sandie

Rosie_Rabbit
Member

Re: scared now the reality has hit me

Hi Loubyloo

 

I was told Monday that it was Grade 2 Ductal with a spread to my lymph node. No treatment plan as yet as they hadn't had their MDT meeting, so I go back tomorrow at 10.10am to get the treatment plan. I do know it will be surgery and 6 x chemo sessions but i don't yet know the order. I read someone's experiences of chemo recently and where I was OK before at the thought of it I am now absolutely terrified. I have no idea how I am going to cope with it on my own plus the expense of all those taxi fares to and from hospital is going to break me financially (on a low income at the mo).

 

Rosie xxxxx

 

 

loobylou111
Member

Re: scared now the reality has hit me

Hi rosie,
Any results yet? I was told mine would be ready this friday but as I was so anxious my breastcare nurse was able to give me my good news on monday.Worth a try to see if yours are ready now?? Anyway good luck and hugs xxx
loobylou111
Member

Re: scared now the reality has hit me

Thank you rosie,
Soft purring sounds like a real tonic. Night times are worse but there is always someone on here! Tc xxxxx
Rosie_Rabbit
Member

Re: scared now the reality has hit me

Dearest LoobyLou,

 

I'm in the same boat with no partner or hubby and also no family. You are right about the middle of the night bit. I go to bed at night with the fear of waking up in the early hours and 9 times out of 10 I do. This is when I grab one of my cats (mad cat lady!) and cuddle them whether they want it or not. The purring calms me most times. Other times I try to imagine a golden light going through my body and calming me. Again most times I'm asleep before I get all round myself!

 

Keep posting here cos it really does help and is getting me through that interminable wait for my biopsy results (this Monday).

 

Love Rosie xxxxxxx

gazzlyn
Member

Re: scared now the reality has hit me

Big hugs to you Sarah Heart and everyone xx

13gerbera
Member

Re: scared now the reality has hit me

Sarah that's definitely worth celebrating, it's another sign that you've got stupid cancer beaten 🙂

Kentstar
Member

Re: scared now the reality has hit me

Good news Sarah, you needed some to boost you. Take care x
Matty2
Member

Re: scared now the reality has hit me

YAY YAY - not in Lymph nodes well done Sarah- I celebrated as well

 

I'm going through my 2nd menopause though and have just made the mistake of googling Anastrozole, as I was getting some 'effects' that weren't in the leaflet.

Yep - runny nose (but I now have a cold)sleeplessness - yep, 'smudgy' sight, yep but I have had sight problems for over a year which had settled down but has been playing up lately - of course hot flushes are part of the course

 

Or of course it may be in my imagination!!!!!!!!!!!!!!!!!!!!!!!!!

 

Welcome back to the sunshine path - we all need to follow it carefully some days

 

Beryl xx

JETS
Member

Re: scared now the reality has hit me

Hi all x just popping in to thank you again - was walking one of those low days but feel a bit better tonight. Pathology results positive that not in lymph nodes ( mini celebration time) so no rads. 10 years tamoxifen - so boo hiss to early menopause ; one of the side effects is but sleeping so not like that one will bring on anything new;) - oh and I've got an appointment on 4 feb with consultant oncologist to discuss chemo - but this is to discuss whether we do or don't so I'm v drained but have edged myself back gently onto the sunshine path a bit x thx all again - your support overwhelms me when u are each going through the same x
13gerbera
Member

Re: scared now the reality has hit me

Hi Beryl, I think you get your results tomorrow so I'll be thinking of you and hoping for the best possible news, which is nothing less than you deserve 🙂 

 

xx

Sharon

Matty2
Member

Re: scared now the reality has hit me

I've only just picked up your posts Sarah - wish I had earlier,

You have had so much to take on, your life has changed in many ways (and your body shape) and I am sure it is a blip. Could have joined you at 4.30 this morniing, I am getting to the stage where I am thinking of sleeping tablets but I don't think, for me, that is a solution either. I have the first counselling session next week, if I can travel that far

I booked it before the op date as I was really low, hoping I can hang on until I have been there, maybe the hospital appointment tomorrow will help. I hope yours is not more negativity it sounds very painful.

Sorry not being very positive 

You help us all, we are the best self-help group

 

All i can offer is a shoulder to cry on - the right one please! and a big gentle hug (without the squeeze)

 

beryl xx

gazzlyn
Member

Re: scared now the reality has hit me

Sarah I don't know what to say to you because I think Sharon has said it all. You are so supportive to us all and your aloud to feel like this as well you know. I know you don't want too but sometimes you need to let those feelings out. I agree with Sharon speak to your BCN even if counselling isn't for you right now its an option should you change your mind. I hope today goes well for you and I hope you have a brighter day. Love and hugs to you Lynda xx
JETS
Member

Re: scared now the reality has hit me

Hi Sharon x thx this really helped xxx
I've got path results and been having issues with drain site healing correctly ( just one more thing😉) so hosp going to look at it today also . Stupid cancer x ( I'm loving that - might get my boy to mock me up a tshirt) x thx again - I know I should probably try counselling but the idea of sitting with a box of tissues and someone 'sincere' not to mention making any more appointments related to stupid cancer - just can't face it at the moments. So today? A we get through today - right ladies? Lots love and thx again - I'd be insane by now if it wasn't for this forum . Sarah
13gerbera
Member

Re: scared now the reality has hit me

Sarah I'm sending you HUGE great soft hugs, so sorry you've had a horrible evening but not surprised as you've had more than most to deal with and must be shattered by now.  I'm sure you're right about your parents being tired but I guess that's caused by stress/worry more than anything else and they probably feel glad that they are able to be of some practical help rather than just having to stand by and watch you have such a hard time.  It's rubbish that stupid cancer takes such a toll on the people we love isn't it 😞

 

You are just about the most positive person I've come across and a genuine inspiration on how to deal with stupid cancer but trying a bit of counselling can only be a good thing.  Frankly, I think we should all take whatever help is available as there are no Brownie points for suffering unnecessarily.  Maybe you could ask your BCN for a counselling referral or phone your nearest The Haven?

 

Can't remember what you're attending hospital for today but whatever it is, I hope it goes well for you and don't you dare be apologetic for being a bit down, you are a Wonder Woman in the way you are coping and I can only look on with awe.

 

Take good care of yourself

x

Sharon

JETS
Member

Re: scared now the reality has hit me

Stupid cancer indeed.
Had a low early evening yesterday - everything sort of hitting me - diagnosis consultations mri biopsy bilateral mx recovery room results day pending - it's been such a huge amount to take in that I think I am going to need some kind of counselling to get over this but am sooooo not a counselling type - it makes me depressed tp even vaguely acknowledge it. Stupid cancer. Can't drive yet. Stupid cancer. Can't take my girls to London this Sunday so they are going with their friends and family without me. Stupid cancer. Parents still here visiting to look after me and my teenage daughters - they are looking so tired and I feel such a burden. They would b so angry with me if I told them that but it feels all the wrong way round. Stupid cancer. When the reality hits - for me in the middle of the TV awards and right now before the birds wake up - it feels like I will never get the old me back and I'm not sure I'm ready for the new me. It can be overwhelming. But tomorrow is another day of waiting at the hospital so I will get up, plaster on my smile and dust off once more. Stupid stupid cancer. Lots love s xxx
Rosemaryanne
Member

Re: scared now the reality has hit me

My local team wear amber and black- your arm would fit in perfectly, Sarah!

Catchpole, I think we all understand where you're coming from. We feel fine, then someone tells us that actually we're not. We have a disease that is terrifying, and things are done to us which make us feel far from fine. And it isn't fair, not at all.

Hopefully once you get into hospital and start the process of getting rid of the Beast, as Beryl calls it, you will feel as if you are gaining some control over the situation.

I'm so sorry that you are so scared, but I understand and empathise, as do all of us on here. Stupid cancer.

Love Rose xx

Matty2
Member

Re: scared now the reality has hit me

Hi All

I've the green and yellow boob as well!!!!!!

So pleased the blue wee is gone and really pleasd the blue nipple has been cut away

Pain threshold still tricky, thought I had sorted it but not at moment. It's just in one patch of my new boob.

 

I think the darke of the night is the worst time as well, there is nowhere relly to 'go' to escape it. I now have fruit tea and honey (usually camomile) but that just gives me something else to think about - mundane things like can I lift the kettle, waiting for water to cool, scopping our 'runny' hunny that is crystalised, waiting for the brew. Then slowly drinking it - boring I know but in that time my mind is not working on the 'what ifs' the Beast brings out in me.

Tired today, visitors, was surprised how it wearied me, but they did bring lunch and left as soon as they noticed i had had enough. Good to see the though.

Thanks for a laugh about the eletric shocks in power cuts

 

Beryl x

JETS
Member

Re: scared now the reality has hit me

just a check in to send some positives to looby looxxx hope u feeling a little better today x
catchpole
Member

Re: scared now the reality has hit me

I feel exactly the same, it cant be happening to me, me who has always been so fit and healthy and apart from my hysterectomy for fibroids 7 years ago, rarely ill, i walk loads, never smoked, never been over weight, eat healthily, yes im over 60 but ive never felt it, How can a silly little lump cause all this, and i still feel so well,. Middle of night is worse, as i  live alone, have great friends but in middle of night, just me. Lumpdectomy next week, then poss chemo, dreading that the most.  I cant get my head around it.June

JETS
Member

Re: scared now the reality has hit me

Lol - laughed out loud about the idea of plugging into the mains rose! Shocking died down in the night - my little nerve endings what must they think?!
I think we really missed a trick here with football clubs - my daughter is a season ticket holder at norwich City - yellow and green - oh yeeeessss. ~ I qualify!!!
Hope56
Member

Re: scared now the reality has hit me

Oops die not did
Hope56
Member

Re: scared now the reality has hit me

My husband and sons support a blue and white football team so they were well impressed . They reckon I am now a did hard fan ! Not that I showed my sons - heaven forbid xx
Rosemaryanne
Member

Re: scared now the reality has hit me

Oh wasn't it sooo blue! I was still off my head on whatever they gave me in theatre, daughter helped me to the loo and I remember the amazement and giggles. Still can't really look at the blue nipple though. I have to replace the tape around it every couple of days, and do it blind. xx

Hope56
Member

Re: scared now the reality has hit me

I love and feel that positivity - thank you. But I did impress myself with the blue wee.... The blue nipple I could live without. You are so right 2nd time around will be easier. xx
Rosemaryanne
Member

Re: scared now the reality has hit me

Hi Hope. Looks like there's a few of us going in for a second round, it's going to be so much easier this time- no blue wee, radioactivity or wires.

Walk in the park, eh?! xx

Rosemaryanne
Member

Re: scared now the reality has hit me

Oh Sarah- only you! I get what I think of as little prickles in leftie. Poor sod doesn't know yet it's going to be messed up all over again. My lovely, lovely surgeon has put me on her operating list as she said it will be "complex", then practically hugged me as I left this morning. This experience has drawn me to some really wonderful people, and I WILL cultivate patience and come out of this as a better human being!!!

Hope you have a peaceful night. Oh, just thought, you'll be ok if you get more power cuts : plug into your drain wound! Always a positive!

Love, Rose xx

 

 

Hope56
Member

Re: scared now the reality has hit me

Hello girls. Round two for me next week too! They didn't get clear margins. I've had my down moments about it but know that it's just a blip and one that can be fixed. Stay strong - we can do it. Sending hugs, love and positive vibes .
JETS
Member

Re: scared now the reality has hit me

Rose - I would say you are one of the least self pitying people out there x allow yourself a bit of a "low" you are more than entitled x Monday will come and go quickly - You hang in there xx

I've been amused by electric shocks this evening over my right chest - I have to place my hand on my chest to stop them - it's been making me smile - it's like my body is waking up and saying 'screw you cancer' xxx

Roll on February !
Gentle hugs
Sarah
Rosemaryanne
Member

Re: scared now the reality has hit me

Hi Loobylou

I'm also gutted that i have to have more surgery next week to clear margins. Trying to focus on the great news that my lymph nodes are clear, but allowing myself a bit of self pity tonight. I hate anaesthetics, don't want to go back to square one and the post-op fragility, but have to keep emphasising the good news when talking to family and friends. Sorry for whining, but sometimes it's good to get it off my chest (yes, said it again!) amongst people who understand

Love, Rose

keepmumsane
Member

Re: scared now the reality has hit me

Hi lovely,  im on the the other side of the world,  so I am here at 2am, I shall watch for you.  If you're a facebooker pm me, ill give you my info so you can friend me you can message me instantly. If not just message me here anyway I often check in.  this stuff is bad enough, lean on us, we're on the inside too, and no one on the outside truly undestands no matter how hard they try..  I dont wake anyone at 2am,  im often lying on the couch awake too. 

Hugs honey,  second surgery bites.

Xxxx

Sandie