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I feel so lost and don't know what to do!

37 REPLIES 37
ladybowler
Community Champion

Re: I feel so lost and don't know what to do!

Xena

 

How many sessions are you having?

 

Helena xxx

ladybowler
Community Champion

Re: I feel so lost and don't know what to do!

chocolate

 

As Jill says you will get your head around it all, just give yourself time and dont put too much pressure on yourself.  What point are you at in your treatment?

 

xx

Jill1998
Community Champion

Re: I feel so lost and don't know what to do!

You will get your head around it - first few weeks are very hard indeed.Lots of support and advice here from people going through the same and those who are now out the other side .
chocolate
Member

Re: I feel so lost and don't know what to do!

This is how I feel at the moment it’s al blown me away and I can’t get my head around it
I dont believe it.
Member

Re: I feel so lost and don't know what to do!

Hi Zena 75. Thank you so much for your response. It's lovely to hear from people going through this horrible battle as well but we will win the war in the end. I shall watch out for you on the radiotherapy thread for December/January and be thinking about us both going on the 27th. I hope you are having a good enough day today and can get distracted from it all with other things going on. Xxx

Xena75
Member

Re: I feel so lost and don't know what to do!

I've just read through your post from start to end, wow what a whirlwind. I'm glad your news was good and you have now told everyone too .

You start rads the same day as me! 

I dont believe it.
Member

Re: I feel so lost and don't know what to do!

Thank you ladies.  Letter has arrived this morning so appointment for Tuesday and a list of dates for treatment starting 27th December. First two weeks will be 3 days each to cover Christmas and New Year, third week will be 5 days and fourth final week will be 4 days.  This will certainly take away the strain of the travelling with only having one week with five days in a row. The first two weeks of the 3 sessions my husband will still be on holiday from work so he will do the driving and we can make a bit of a day out about it. It does not bother me at all that it's over the four weeks and not three.

Big sister has now been told so she is never going to complain again about screening. She admitted that she had a small cancerous growth removed from the skin on her leg last year and told know one so she totally understood my secrecy even more so because of our daughters home situation. 

I must say I am feeling absolutely great just now and am so looking forward to Christmas. 

Hufflepuff
Member

Re: I feel so lost and don't know what to do!

I don't believe it,

 

Good to hear from you again.  Glad to hear you have been taking things easy - you can't beat a Christmas film, can you! Once you get started with the rads it'll go really quickly, I've only got 4 to go now.

 

Best wishes xxx

ladybowler
Community Champion

Re: I feel so lost and don't know what to do!

I dont believe it

 

That is great news and fab that you were able to give your daughter the positives of your diagnosis, very much the same way as I did my mum, to be honest she did come back at me a few days later saying that she was not happy with me keeping it secret but did understand and we moved on from it.

 

Once you get your Onc apt you generally have your planning apt about 2 weeks after that and then rads start about 2/3 weeks after so you might now not start til after Xmas, which is not a bad thing.  I started mine last year on 20 December which meant it took longer to get them completed as there were the two bank holidays so I didnt get finished until 19 January, I was really frustrated as I wanted it all done before the end of the year, I had 20 in total.

 

I think you are being very sensible about your job and if you are able to perhaps pick it up again after your treatment has finished then great but at least it is one worry you dont have, and that would be some journey every day.  I was lucky my work was half way between home and hospital and I arranged my appointments for around 1pm so was able to go straight from work.  Having said that in total it was only about a 10 mile round trip there and back.

 

Will look forward to seeing you on the rads thread

 

Helena xxxx

I dont believe it.
Member

Re: I feel so lost and don't know what to do!

THat is me now back in the land of the living. Had a few 'just sunk in days' where I have been quite emotional so tucked myself up on the sofa and watched channel 5 Christmas films. My Thursday appointment last week went very well. Definitely radiotherapy and 5 years on Tamoxifen. DOc explained very clearly pros and cons of it all but told me my risk of recurrence was at the low end of the scale. MEt the oncologist so just waiting on my appointment to come in for the pre radiotherapy checks. Once I know what is happening with that I will move over to the radiotherapy blogs. I suspect I am am going to probably be a near Christmas start. Have been told 3 weeks treatment. I am working up though to some extra just in case they suggest a boost.       

MY daughter has been told and what a relief to be able to tell her with the positives out of it all now that I know rather than having them go through all that horrible waiting time. YES she was emotional, some tears and many questions. Surprisingly she was not angry with me or her Dad but is angry with cancer in general. I started off by telling her we had a non cash result win in a lottery. Told the good news first and then worked my way back to the beginning and skipped over the waiting time with all the worry. It will probably take a little while for it to sink in and then she will come screaming at me at a later date!!!!

Out of all of this I have decided it is time for me to 'let go' of my wee part time job. I did love it but I can carry on with parts of it in my own time so that will keep me going.  I will be a WASPIE so therefore a kept woman but heh there are more important things to life now.

The job was in the complete opposite direction from the house to the radiotherapy centre so it would have meant 25 miles to work, 50 back the way to radiotherapy and the 25 back home probably at rush hour so it was a very easy decision to make. I will finish on Friday as I have holidays to take. 

I will be watching for the postman now or a telephone call with my appointment.

Thanks everyone!

Hufflepuff
Member

Re: I feel so lost and don't know what to do!

I don't believe it,

 

I was so pleased to see your post.  What a relief for you and what an emotional rollercoaster this week has been for you.  Results wise, I was in a very similar position just a few weeks ago, and have started radiotherapy this week.

 

Best wishes and a hug xxx

Charys
Community Champion

Re: I feel so lost and don't know what to do!

Awwwwwwwww, thats great ! I think you'll march forward strongly and be back to 'you' in no time.

 

Same results as me (and Helena), and that was in MArch 2016 I had mine.

Optimissy64
Member

Re: I feel so lost and don't know what to do!

Great news Idon'tbelieve it!  The best of outcomes. So pleased for you.

I had WLE and SNB in December, clear margins and no node involvement just like you, so just had radiotherapy and the daily hormone tablet, and life returned to normal very quickly, as I am sure it will for you too. Have a good celebration with the other half tonight - you're allowed to get tipsy on these occasions (well, I know I did when I got the resutls after my op!) x

Jill1998
Community Champion

Re: I feel so lost and don't know what to do!

The pants work !!! 👍👍👍👍
ladybowler
Community Champion

Re: I feel so lost and don't know what to do!

I dont believe it

 

I am absolutely thrilled to have read your post, the tears are falling with happiness and relief for you, I have been thinking about you all day wondering how you were especially with the weekend coming up and seeing your daughter.

 

I was the same as you, clear margins, no lymph node involvement, ER+.  I went on to have 20 sessions of radiotherapy and am on tamoxifen for 10 years.  I finished rads in January of this year and have been back to my normal, although rather different in perspective, life now

 

I wish I was a fly on the wall when your husband comes home, he is going to be soooo relieved.  I think a bottle of something sparkly should be opened tonight.

 

Well I know you dont need the tough pants now, but heres a pair of spangly ones, mind you they are not tiny!!

 

Lots of love and hugs

 

Helena xxxx

 

 

sparkly pants.jpg

I dont believe it.
Member

Re: I feel so lost and don't know what to do!

HEllo everyone. AFter a dreadful day, crying all the time, ignoring telphone calls and hiding at the back of the house in case anyone should come to the door. I have just had a telephone call from the breast cancer nurse I saw yesterday.

Smiley Happy

She told me the pathology result final part came in at lunchtime today. SHe managed to speak with the consultant and he gave her instruction to call me with the results.

 

OH My good ness out of such turmoil the minutes before she delivered the best of outcomes I could ever have hoped for. I have Clear margins and no lymph node involvement. ER positive. she has made an appointment with the consultant and the other Doctor (endocrine)??? Not even sure of the right name but the one they reach the decisions with regards the way forward for Thursday. if I have heard her correct she said radiotherapy and hormone therapy. Oh my goodness I can hardly believe it. I am still crying and knowone  at home at the moment to share with so hence being on here. 

 

i am am not going to call my husband just now as he wil be driving home just now. The joy it will give me to give him this news instead of the dreadful news I had to give him a few weeks ago. I am so happy and excited and I know we will cry together. Our hugs will be tight tonight.

 

i can cope with this way ahead. No problem compared to what it could have been and be so thankful. I shall work out almost a funny way to let my daughter know without all the 'details'.  I am so lucky.

 

Thank you to everyone for all the support last week. I shall carefully wash the big pants and add some fabric conditioner with a lovely lavender scent and send them back. I shall look out some lovely sparkly tiny underwear that used to fit long long ago and just look at how different life can be. 

Good luck to everyone on this journey we just don't need. Xxxxxxxxxxxxx

 

 

 

ladybowler
Community Champion

Re: I feel so lost and don't know what to do!

i dont believe it

 

Oh my dear I am so sorry to hear that you didnt get your results today, you wonder why they could not have phoned you to re-arrange as surely they would have known.  I have heard of other ladies on here having had the same thing happen.

 

Sending you loads of hugs

 

Helena xxxx

I dont believe it.
Member

Re: I feel so lost and don't know what to do!

I am no further forward.!!!!!

After all the angst of building up for results and a treatment plan, got there and was told they did not have all the pathology results so could not compile a treatment plan yet.

I am shocked and numb. Cried all the way home and have hardly slept. 

Has anyone else been in this position?

I Have been told I have been rebooked for next Thursday .

I am going to have to put on my best acting skills and visit my daughter over the weekend. There is no way I can talk to her yet as I am now more emotional than ever and would be to afraid of not being able to give her any information. I would not want to spoil their wee holiday.

 

Jill1998
Community Champion

Re: I feel so lost and don't know what to do!

The pants will help !!! At least it won't be as obvious if you have an accident anyway !!! Make sure if you don't understand anything ask them to explain it again and maybe write some of the information down ,it's very hard to concentrate when you feel anxious .
Jill1998
Community Champion

Re: I feel so lost and don't know what to do!

Why are these appointments always in the afternoon!! My results appt was at 3.30!!!! It was a very long day !!! Hopefully by this evening you will feel a lot better !!!
I dont believe it.
Member

Re: I feel so lost and don't know what to do!

THursday has arrived, hardly slept. I am in central Scotland Jill. Health service has been wonderful. Just wish results could be immediate as this stress cannot be good for us when going through this. Still have until later this afternoon to go. The big brave girl pants are off the line and ready to go on. Trying to put on a brace face for husband who left to go to work for the morning.

Cathysid
Member

Re: I feel so lost and don't know what to do!

Hi I don’t believe it,
I was diagnosed in July and I did find that the most stressful period was waiting for results and a treatment plan. Once I knew the full diagnosis and treatment plan I felt so much better. Oncologists are very good at treating breast cancer, and the long term outlook is usually very good. Wishing you luck for Thursday,
Cath x
Jill1998
Community Champion

Re: I feel so lost and don't know what to do!

It's a horrible anxious time ,but when you have more information and know what happens next you will feel better and also when you are able to be honest with your family you will feel happier as it is obviously causing you some unease. Where in the Uk are you ?
I dont believe it.
Member

Re: I feel so lost and don't know what to do!

Dearest everyone.  Oh those big pants made me laugh. Thanks for a little light in all of this.

By the looks of it I am feeling some comfort in that others too had or felt the same things about Mums and Daughters. My daughter has Been in touch, by text fortunately, so have kept to just the subject she was talking about. She tells me they are going away for a few days on Wednesday. Feel guilty that she knows nothing. BC nurse has been in touch too to let me know they have all the results from the initial biopsies ready for Thursday. She did not mention the pathology report for the lump and SN biopsy but it was the consultant who booked the appointment saying those results would be in by then. According to him they go to Manchester to be tested. 

I think it will have to be the weekend I tell her the news. I will probably need Friday to digest what will be said on Thursday. This will give my husband and I some time too. He is getting a bit more concerned as the time gets nearer. He will be with me on Thursday.  I was on my own when I was told initially so I had to tell him!

Woodview
Member

Re: I feel so lost and don't know what to do!

Hi there I don't come on the site too much these days but felt I had to respond to your message 

I was the same with my Son and Daughter when I was diagnosed my daughter was 28 weeks pregnant at the time with her first baby I had arranged a surprise baby shower for her on the Friday and was told that I needed surgery for BC on the Wednesday my husband and I kept it to ourselves the three weeks of tests and scans I had the surgery was in overnight managed to say I was working away overnight as my daughter lives next door to us I wanted her to enjoy the shower without the worry of me

.We told both our children that weekend it's the hardest thing to do they were both very upset we had gone through those weeks of worry on our own especially as our daughter is a nurse she was so upset she wasn't there when I had my surgery .

while I was halfway through the chemotherapy my daughter gave us a beautiful granddaughter our first grandchild and here we are three years later I am very well happy and living life just had my third clear mammogram 

it is so hard for you at the moment I wanted you to hear it does get better and you really need the support of your loved ones we felt awful but relieved when we told them ,they were the ones that got us through the darker days 

hope this helps and lots and lots of love and hugs to all you ladies going through this xxx

Jill1998
Community Champion

Re: I feel so lost and don't know what to do!

Sounds like a good idea 😁
ladybowler
Community Champion

Re: I feel so lost and don't know what to do!

Jill

 

Hum!! perhaps I ought to get some new ones in case any of us fall out of the pockets 🙂 🙂 xx

Jill1998
Community Champion

Re: I feel so lost and don't know what to do!

Totally understand your feelings re your daughter as we just want to protect our children no matter how old they are don't we !!!
Jill1998
Community Champion

Re: I feel so lost and don't know what to do!

They are looking a bit baggy Helena ...had a lot of use !!! Welcome I don't believe it !! Good luck on Thursday !
ladybowler
Community Champion

Re: I feel so lost and don't know what to do!

I dont believe it

 

I spent 6 weeks acting "normal" over the phone but I know I did the right thing because I did not want to have the worry of my mum worrying about me as I know she would do.  It was good when I did tell her that I could be very positive because I knew what was going to happen and when.

 

Have everything crossed for you for on Thursday and here are a pair of the tough pants we give ladies who are in need of some support, they have big pockets so that we can all get in there to be beside you.  They are freshly laundered as you can see 🙂 🙂

 

Just keep coming on here whenever you need to and there will always be someone on here to help and support you.

 

Helena xxx

 

 

tough pants.jpg

I dont believe it.
Member

Re: I feel so lost and don't know what to do!

Oh Helena Thank you so much. Your explantions make so much sense to how I am feeling at the moment. I think if I can 'explain' why might help when I am in a position to talk with her about it. I know now as well that it could always be a two way thing and that in her life she does not tell me everything and I certainly do not expect her too. Indeed her Dad and I sneak away to things and tell her afterwards and she too may phone from a nice hotel somewhere and say "guess where we are" so you can imagine the scenarios I am thinking about. I am deliberatly not contacting her these few days and hoping as well that she does not phone me so I can hide behind the 'no contact'. I am a coward with this and normally a more confident person.

Thanks for showing both side to it Helena.  I pray Thursday may make my decisions that little bit easier, either way!

ladybowler
Community Champion

Re: I feel so lost and don't know what to do!

I dont believe it

 

Hello and welcome to the forum.

 

I would echo what ann has said,  I was the same recall after 3rd routine mammogram, I did not find a lump nothing.  Had my op, radiotherapy and am on tamoxifen now, that was all 12 months ago and life is back to normal.

 

With regard to telling your daughter, I remember many many years ago my mum found a lump and had it removed, she did not tell me until she had her results.  I was angry with her for not telling me.  Fast forward to this time last year, I had had my op and was waiting for my results, I had not told my mum, she doesnt live close to me and is elderly, I wanted to get my results and treatment plan before I did so that I could give her some positive information rather than that I had had a lumpectomy but didnt know what was happening from there.  She was not happy with me but when I explained my reasonings she totally understood.

 

Sending you loads of hugs

 

Helena xxx

I dont believe it.
Member

Re: I feel so lost and don't know what to do!

Thank you all for this. At least I am not alone when at home on my own knowing the forum is there. It has all happened so quickly so still in shock and although I know it is real it is like a denial. I have never felt so well and so healthy and this is why it is so shocking. I have even had a great recovery from the WLE etc. Never had an incling or felt any lump or changes and just so concerned that the next few months could take that all away from me and physically and emotionally will be so hard.

I am going over in my head all the scenarios about how to tell my daughter. I know my son in law will not be able to cope with yet another diagnosis so will  be hard for him to support my daughter. He is looking after his own Mum at the moment, coping with their loss and now all her treatments. I have a sister too who needs to know but right now i need to look after myself without having to deal with her emotions. I am absolutely blessed that my husband and I are strong so we are bouncing options between us how to handle things.This must be one of the worst situations to be in that you just dont know what is happening when you feel you need to know. Never the right time but with Christmas looming I cannot even think about shopping or anything and  a couple of weeks ago I was so excited about having a little one in the family again and looking at all the toys and decoraions to make it so special for her. I have nevr known such sadness and worry.

ann-m
Community Champion

Re: I feel so lost and don't know what to do!

Hi I dont believe it,
The waiting for the results part of going through this, is always the worst part, so what you’re feeling is quite normal although horrible.
You are not selfish at all, it’s just one of those things. Fortunately, as bc is picked up a lot earlier, outcomes are excellent. In my case I was back to life as normal within a few months.
Wishing you all the very best for Thursday, as ever, its the uncertainty of not knowing that is the most difficult part on dealing with this, as the mind goes into overdrive in filling in the gaps.
It does feel much better when you know what your dealing with & what is to be done about it.
ann x

Hufflepuff
Member

Re: I feel so lost and don't know what to do!

On bless you, I'm so sorry to hear what you are going through.  It is so difficult knowing what to do for the best re telling those closest to us, and it's understandable that you want to have as much information as possible.  Only my husband knew about my initial appointments, biopsies etc.  My Dad had been quite unwell for a while (not cancer) and I didn't want to give my Mum and sisters any more to worry about.  When I then did tell them, they were upset that they hadn't been there to support me, especially as I had gone to some appointments alone while my husband looked after the children.  I echo what Joanne said - it won't be easy to tell your daughter, but she will want to be there to support you.  I can tell that you are close to her, and of course, you want to protect her and your son-in-law, as they've had a really difficult time.

 

I'll be thinking of you on Thursday.  There's never a good or right time to tell our loved ones difficult news. When you have more information after your appointment,  I hope that you will feel able to talk to your daughter. 

 

Sending you a hug and I hope that you managed to get some sleep eventually xxx

 

 

I dont believe it.
Member

Re: I feel so lost and don't know what to do!

Oh Thank you for such a lovely understanding response. I can really feel your hug. This horrible thing is a nightmare for us Mums and daughters. I really cannot believe that I have actually had the surgery and I am too worried about giving yet more bad news to the family that I have kept it private. I am praying for the least frightening result from the pathology and the treatment plan so I can try and be upbeat with her. I know it's a 50/50 chance it may be a greater treatment but as I don't know yet I would not be able to answer her questions and that would make her concern worse. Believe me they are exhausted having used

up all their physical and emotional energy  and tears this year because of horrible cancer already. If I could get away with no outward signs right now I feel I would want to keep it from her forever! I know though that would not be right and I am only saying that as she is top of my "need to know list".

I am so glad you are there for your Mum and yet she will be trying to protect you as well. It's such a fine line when families are close.

All this waiting in between for results takes its toll. I have not managed to fall asleep yet! My lump is out but I don't know what it is or was or what the next stage will be. It's like living in a nightmare.

JoeC
Member

Re: I feel so lost and don't know what to do!

Hi,

 

I'm probably not the most informed response you're going to get, but you need an instant hug, so here's one.

 

I'm very new to the forum too. I don't have breast cancer but my mum was diagnosed with it less than a month ago. She's still in a complete whirl too, she doesn't yet have all the information she needs, and feels so lost and confused. She didn't want to tell me - she didn't want to worry me. As a daughter I say that I have the right to be worried about her. I'm sure your daughter would say the same. She would hate to think of you going through such a turmoil and not being able to help - even though the only help we can offer is love. 

 

You need her, and she needs to be able to be there for you.

 

It won't be easy, you'll both cry, but you'll have a wonderful supporter afterwards.

 

Lots of luck, and love

 

Joanne

I dont believe it.
Member

I feel so lost and don't know what to do!

It's after midnight here and my first post after reading the Forum for the last week or so. IN a whirlwind, I received a recall letter, went for the follow up and was more or less told there and then it was breast cancer. 2cm lump, don't know what kind or anything, had biopsy there and then and very quickly had a WLE and sn biopsy done through the same incision. GOing back for the results of all that on Thursday. I am heart broken and cannot believe this is happening to me. MY mind is racing every waking minute with the what ifs etc and then I cannot get to sleep. Only my husband, who has been wonderful, but is very upset too knows what is happening. We have a married daughter and a wee grand daughter and have not told her anything yet. This is where I HAVE  a problem which breaks my heart not being able to tell her just yet. I want to wait and tell her when I have something to tell her and I am praying it can be positive or if not to at least have the facts so I can answer her questions. I feel very selfish but both her in laws were diagnosed within a few weeks of each other with cancer early this year, both had big operations and Chema and sadly the Dad died.  HOw can I put my beautiful daughters home through any more. I am really struggling. Thanks for listening. Xx