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Post Op and in need of some support

23 REPLIES 23
Roxie65
Member

Re: Post Op and in need of some support

Hi Hydie

It did dies sound like we are on a similar timescale. Sorry to hear of your problems and delays the surgeon really does have so much power over our emotional states.

 

Due to the bank holiday and oncologists holiday I don't see her until 12th may to confirm I will proceed. After reading up on triple negative I don't need to make the decision of if chemo is right as its to high a chance not to. After all as you say we could have small untraceable ones starting.  I hope your chemo goes well and keep in touch.

 

I am currently getting ready I have told everyone and talk openly with those who can cope, not all can face me. I have told them no sympathy as it upsets me I need them strong and that will support me and my God what support even from people unexpected.

 

I have bought my holiday forward and cut it to a week so I wasn't dissapointed lol. Eyebrows being tattoos in the 7th and going wig shopping Friday. I like to be in control and this helps me feel I am making the decisions now lol.

 

Hopefully we will sail through chemo and being as prepared as possibly in any way we can can only make us stronger.  Xx

Hydie
Member

Re: Post Op and in need of some support

Hi Roxie
I am new to this site, your story is quite similar to mine, although my journey started off with a genetic test leading to elective risk reducing mastectomy, I also had a surgeon with poor bedside manner and poor time management. thankfully for me his time management was so poor he cancelled my op on the day itself, I kicked up a huge stink and was on another surgeons table a week later, she was lovely and the difference in my emotions to have that confidence was immeasurable.
Another similarity is, post surgery I discovered it was all too late and I had a small tumour. At first I thought they were just telling me out of courtesy, that they had done all they needed to do already, so was shocked when told I needed chemo even though my subsequent ct scan and sentinel node biopsy were both clear.
I have done a lot of reading and the best way I could get it into my layman's head is that the chemo is designed to catch and kill off any new tiny little tumourettes which might be brewing at undetectably small sizes, before they get big enough to cause problems. Mine was also triple negative and I start my first round of FEC chemo on 14 May. Sounds like we are on similar timescales?
So far I have only told people I have to, I am struggling to deal with the outpouring of sympathy. I am not sure if it's because I am in denial, all I know is when people start feeling sorry for me, I start feeling sorry for myself, so I prefer it if we all just carry on as normal!
keeks
Member

Re: Post Op and in need of some support

Sorry to hear your news Roxie

 

you prepare yourself for one thing then have to start all over again, at least no more visits to your surgeon. That part is done.

 

Take care.

 

Keeks

 

Roxie65
Member

Re: Post Op and in need of some support

Thank you Lucy.

Lucy_BCC
Member

Re: Post Op and in need of some support

Hi Roxie
The following information may help you to understand more about treatment options/reasons:

https://www.breastcancercare.org.uk/diagnosis

Take care
Lucy BCC

Roxie65
Member

Re: Post Op and in need of some support

Got my results today. All the cancer was removed and no lymph node involvement but as my cancer is triple negative I need chemo and rads as apparently no drug therapy for this type. Now need to read up as thought if it hadn't spread then no chemo needed.

Roxie65
Member

Re: Post Op and in need of some support

Hope all goes well with that. Some days do make you realise that its all worth it in the end xx
keeks
Member

Re: Post Op and in need of some support

Thanks Roxie

I got my tattoos yesterday at my planning session.  The sun was out and every field we passed was full of skipping lambs. Some days are are just glorious. 

 

Keeks

Roxie65
Member

Re: Post Op and in need of some support

Thanks Keeks

 

Hope all is going well for you too.  I am in a much better frame of mind than I was last week so ready to face my surgeon next week and hopefully won't feel intimidated.

 

Thanks for your support xx

keeks
Member

Re: Post Op and in need of some support

Glad you're feeling better Roxie65.

 

After you get your results you might never see your surgeon again,  hopefully your next doctor has a better manner, 

take care.

 

keeks

Roxie65
Member

Re: Post Op and in need of some support

Its not fair when they tell us one thing and don't stick to it. If it may not happen as they think then don't give times we can deal with the wait just not the feeling of an imminent op then it not happening.

I do get copies of what ius sent to my doctor that was how I found out the type and grade my surgeon has never told me.

I have now seen my two scars and although look bigger and brighter at the moment can see he has done them for how they will look cosmetically. One will sit neatly in the crease of my armpit the other hidden by even a bikini top but so neat don't think will show much anyway. I need to focus that this is what skills are beast his ability to heal with the best look after and not his bedside manner lol.

Dreading seeing him on the 23rd but now for the right reasons and not taking his curtness personally.

I will post on here how it goes. Thanks for the reply I hope all is going well for you now x
lucy12
Member

Re: Post Op and in need of some support

Hi Roxie

 

I was also told I was first on the list but ended up not going down to theatre until after 2pm and like your surgeon, mine had a bit of a rubbish bedside manner - it wasn't really very confidence inspiring!

 

But 7 months down the line the scars have healed and I can now see that he must have been a very skilled surgeon. They were a lot bigger than I was expecting at first but now I hardly notice them.

 

Does your hospital give you copies of all letters etc? I automatically get sent a copy of every letter to my GP and have learnt more from these than from speaking to him at my appointments. You can also request copies of all your notes, scans etc.

 

Keeping everything crossed for good news on your results on 23rd - keep us posted.

 

Lu xx

Roxie65
Member

Re: Post Op and in need of some support

Thank you I am going to do as you suggest and write down any questions as I think of them then I won't forget when faced with my consultant.

I have told everyone but am forever reassuring them I will be OK so don't voice my real fears. I found just being able to put on here how everything was making me feel a great release on a day I had hit rock bottom. It has enabled me to get rational again ready to face what comes next. There is so much comfort getting advice from people who have shared the experiences.

Thank you and good luck x
Cath2410
Member

Re: Post Op and in need of some support

This breast cancer care website is brilliant for information on everything and has help me get through the process and stay one step ahead so I feel like I'm in control.

I've also found it helpful to carry a pen and pad around with me all of the time to write down all of my questions for the next appointment I have.

It is a roller coaster of emotions but the more people you tell, the more people can give you the support you need. Don't feel like you have to keep your fears to yourself find someone to share them with as I've found it does help.

Good luck with your treatment x
Roxie65
Member

Re: Post Op and in need of some support

Thank you for clearing a few things up. My surgeon is apparently very very good when it comes to the surgery and I suppose its better in the long run that this is where his expertise lies. The other staff are all lovely.

I assume the scar is the way it is to remove the second lesion too but I would have liked to have known.

I intend to let him know I want to be kept informed so I feel I have some control although I will go along with his recommendations.

I wish you luck with you treatment and thanks again. X
Roxie65
Member

Re: Post Op and in need of some support

I agree it is very tiring trying to hide your fears and frustrations from those you love and so good to be able to let of that pent up emotion on here.

I never realised how my emotions could change so quickly it really is a roller coaster. X
Roxie65
Member

Re: Post Op and in need of some support

Thank you it has stopped now but I will keep an eye on it. Thanks for taking the time to reply. I hope all is going well with your treatment x
Donnaandfamily
Member

Re: Post Op and in need of some support

Hi Roxie

I am a nurse (previous ward sister) if you are unhappy with your surgeon you have the right to request a different surgeon....and all of your comments would support the change 100%

 

To help set your mind at ease......the scar maybe larger to ensure they had clear margins around the tumour....(although this should have been exlpained to you prior to your operation) they usually x ray the area removed from your breast while you are in theatre....this too takes time while you are still under anaesthetic

The scar under your arm would be usual for lymph node removal.........

I know it is easy to say.....but their poor bedside manner should not reflect their abilities and their proven abilities........

Try to think positive and know the cancer is removed and your treatment will begin .....usually after 5 weeks...this felt like forver for me.

Ihave just completed my second chemotherapy course......... it is not too bad so don't listen to other peoples stories unless positive....your journey is yours and different from everyone lese xx Take care and good luck

keeks
Member

Re: Post Op and in need of some support

Hi Roxie

I think we (well me) take a lot of energy and time making sure our illness doesn't hurt the people close to us. I don't share my feelings too much with my family as I can see how much it worries them. 

 

I have been on the other side when my mother had leukemia 20 years ago so I am prepared for all the hospital delays etc but I only really come clean about my feelings and frustrations on here or with my partner.  He is a psychiatric nurse so is trained not to judge or take it personally.

 

I feel like a teenager in that one day something is the end of the world and is forgotten about a week later when something else comes along.

 

We are all on a conveyor belt, the people I come in contact with are all great. But most of my questions and concerns come into my head about an hour after my appointment. 

 

Take care 

 

Keeks

 

lazy_jane
Member

Re: Post Op and in need of some support

Hi Roxie65

I'm sorry you've had such a bad time, but do get the leak checked out.  Iam fortunate my care nurses, surgeon and hospital nurses could not have been nicer and more helpful.  I hope all goes well with you and you find some support.

Roxie65
Member

Re: Post Op and in need of some support

Thanks Keeks

 

Its reassuring in a way to know the treatment I got wasn't a one off as I had got it into my head that it had become personal about me.  Mind I still think we should be treated as people and not just a part of their job. Working with students about to sit exams I know how important it is to keep them settled and feel we need the same.

 

Being able to post on here yesterday helped me clear my head as those around me are used to me taking control not losing it.  I realise today I need to let the doctors take control but let them know I will still have a say and won't be ignored. I do know they are doing what's best for me but as you say not to the detriment of my emotional wellbeing.

 

My wound never leaked yesterday so will keep an eye on it and get it checked if need be. I am far luckier than you with everything fairly near to me, it must have been scarey to be so far away for you. As far as times and dates are concerned I am going to take them with a pinch of salt and give myself later timescales then it can only be a bonus lol.

 

Thank you so much for taking the time to reply I think it all came to a head yesterday and I needed to release to someone in the same boat not just someone close who would say it will all be OK.

 

I hope your treatment is all going well and let me know if you need an ear. Lots of thanks and hugs from me x

 

keeks
Member

Re: Post Op and in need of some support

So sorry to hear you've had such a hard time Roxie65

 

if your wound is starting to leak and hurt I would see someone. If your BCN is not around then I would see a doctor.  I started to have problems on day 10. It's a 60 mile journey to the hospital so I ignoted it, convinced it was 'normal' and ended up in hospital having another operation to remove an abbess. 

 

As for the hospital situation I can sympathise,  I went for my pre-op two days after dx and the nurse very cheerfully asked when my op was as she had not been given any file, I almost walked out. 

 

Was told I was first on the list when I went for op, taken down to get my wire put in and the nurse at ultra sound didn't even look at me. Told me to take my stuff of and put it on a chair. I just said what stuff? I'm wearing a hospital gown. 

 

Half an hour before surgery (2.30, so much for first) the anethastist came and asked if I knew what my height and weight was.

 

I'm not quite as organised as you but I requested copies of my pathology reports and all doctors letters, they told me things I didn't take in at the appointments. and things I was never told.

 

There are loads of leaflets on here, I posted questions, and have phoned the helpline when I need something explained. I changed my breast care nurse to one at my local hospital. 

 

I have made very few actual decision regarding my treatment , but I have slowed things down to my own pace. To me, my emotional and mental health is the thing I have to look after, the doctors and nurses will look after the rest.

 

it's good that you are able to loose yourself in work just now, if it benefits you it's a good thing.

 

I made an extra effort with the puncuation and spelling in the circumstances. 

 

Take care

 

Keeks

Janet_BCC
Member

Re: Post Op and in need of some support

Dear Roxie65

 

Welcome to the BCC Forum.  I'm sure other members will soon be along to offer you some support.

 

You might also find it helpful to talk things over with one of our helpline staff.  They will be able to offer you practical information and emotional support.  The opening times are 9-5 on weekdays and 10-2 on Saturdays.  The number is 0808 800 6000

 

Very best wishes

 

Janet

BCC Moderator

Roxie65
Member

Post Op and in need of some support

I am 48 years old and I found a lump a week before christmas and rather than look a fool waited to see if it was hormonal.  It never changed just got more and more painful so beginning of February I went to the doctors and she suspected a cyst and said pain was good and she couldnt feel anything but because of my family history she would send me to a breast clinic.  My consultant never seemed worried when a mass was found on my mammogram and scan but a ultrasound cone biopsy was done painful to say the least.  I was told I would be called back in two weeks.  A couple of days and I had my appointment but for 3 weeks, after a week I had a bit of a melt down but then pulled myself together with the thought if it was bad then I would be called back.  I have tried to stay strong and have great support so cant let them know how scared I am.

 

I went along so sure all would be ok and before I even sat my consultant said sorry to tell you but you have breast cancer just like that, they then called my daughter (19) in whilst he was explaining the op to test sentinel nodes and hopefully remove the cancer.  He then looked at my daughter and said you dont know whats going on do you, she replied no and he said your mum has breasst cancer.  She broke down I comforted her and he asked did I have any questions.  God no not at this point wasnt even sure what planet I was on.  My breast care nurse took us to another room and asked any questions but I just needed to get out, she gave me contact details and we left.

 

I received my operation date through the post along with my pre op.  At this the nurse said if I had any questions my breast care nurse was on holiday and no one was around in clinic so to ring the number and another breast care nurse would help.

 

I work in exams so to me everything is done to a strict timetable and this is a whole new experince which I am finding hard.  The day of my op arrived and whilst I was having the guide wire and radiation injections my surgeon came round and told my OH that I would go down around midday. The doctor who done the guide wire wrote on my notes second lesion found but I only saw this when having the injections so no one to ask so missing talking my surgeon was a pain and a worry.  I set myself up to go down midday stupidly but I handle things in time frames.  The time came and went only to be told sorry he fitted someone else in first but your next.  Then told would not be til 2.30 as lunch.  At 2.30 he decided to take someone who was last on his list next and I then had another melt down.  My breast care nurse was called to calm me down and apologise and explain that is how he works.  They took me down next at 3.30 to wait down there half an hour, I think to settle me that I would be next.  My surgeon took one look at me and said its left isnt it and said no more and I was asleep.  When I came round I was taken back to the ward at 7.30.  They sorted some pain killers and a letter for my doctor and told to get my would checked in 3 days and I was discharged 9.30.  The next day I rung my nurse to find out about exercises and again she apologised and said they should have shown me before I left but use the ones in the leaflet with my primary breast cancer pack.

 

I had my wound checked on the 3rd day and all ok but by day 5 has leaked a little and is getting more painful and the exercises harder to bring my arm down properly.  Is this normal?  I dont see any one now until the 23rd when I get my op results and this will be my surgeon who scares the life out of me. I will have to ask all my questions then but how do you get through this time waiting for what could be awful news.  I have been so positive but now its all caved in on me and I am fearing the worse. Why do doctors have to make this harder than it already is?

 

I never feel I have a right to ask for help but I am breaking down inside I feel scared of my surgeon and haven't had the chance to ask him anything. All I know is what I read and the unknown is by far the scariest thing I have had to deal with. I havent taken any time of work as its my busy time so has helped and the op was done at the start of the school Easter holidays so now off but its doing my head in.  Trying to keep strong for my family but I dont feel strong at all.  I thought by putting it all down on here you would all know what I mean and how I feel whereas others around me dont.

 

Like others on here I thought I would sail through the op and probably only need radiotherapy, but then the second lesion no one has even mentioned.  The scar is right across my left boob from near the nipple towards the armpit not around the nipple like some have and I have the scar under my arm. This is now playing  on my mind that it may have been worse than suspected.

 

Sorry this is  so long  winded but I so need to get it all off my chest.

 

Thanks  x