Recently diagnosed and feeling so very scared and alone

[JD-W]

Hi Daisy,
Good to hear from you but sorry to read what happened with their mistake?!
I suppose you can’t make any decisions until your get your results back...I’m so pleased they are fast tracking them for you.
Julie xx

[daisydi]

I have expained the latest saga in my breast cancer life in the Going Through Treatment section for Nov 18 surgery as it is very complicated.  I am fuming 

[daisydi]

Thanks Marla and Julie.  Here we go again xx

[Marla13]

Daisy-good good luck for tomorrow. Don't worry about what they will find-whatever they will find (if anything) they will deal with. I agree with you that one of the most frustrating things about this illness is that we can feel so well, yet be so unwell, i.e., have cancer in our bodies. You, like Julie, are a trooper and you will get through tomorrow with flying colours! As hard as it is, try not to forecast what the outcome will be and try and put it out of your mind-worrying about it won't change the outcome so you may as well preserve your energy tonight rather than spend it worrying. We'll be thinking of you and waiting to hear from you once you're feeling well again. xxxx

[JD-W]

Hi Daisy,
Please try and not worry...remember I was beside myself with worry and was saying everything you are right now and my results were all 25 removed were clear 😊
It’s good that you also feel well...I was told that’s another positive 👍🏻
At least this time tomorrow you will be one step further.
I’m ok but just arrived at the hospital again for my 3rd drain 😩 and that’s another thing you won’t have to put up with as you are having one fitted.
Will be thinking about you and please keep us posted xxx

[daisydi]

Well tomorrow is the big day again.  I am so so scared mainly of what they find in my lymph nodes.  How can I be so ill but feel so well.  The future looks very bleak for me at the moment.  Cant think of anything positive.  I hate this so much.  How are you getting on Julie?

[Marla13]

My fingers are crossed for both you ladies that you will be able to avoid chemo. Having said that, if you do find out that you need it, head over to the chemo treatment board because there are some strong warrier chemo survivors over there! 

xxx

[Marla13]

Thanks Julie! My father left on Sunday and we had a really nice week together. Now it's time to get back to some sort of normality, whatever that means. 

xx

[JD-W]

No didn’t have a drain but I think having one will be better for you. They told me last night that I may have to have mine drained up to 4 times so need to call them if I feel it filling up again.
Yes...I’m really hoping to avoid Chemo too....🙏🏻

[daisydi]

Thanks Julie.  Not looking forward to it but want it out of the way.  II will get my results on 12th December.  I have been told I will have a drain in for approx 5 days to avoid fluid build up.  Did you not have a drain.  I am trying to work out how I will sleep with the drain in without moving around and pulling it out.  I am always worrying abougt the next step before it arrives!  Would be fantastic to avoid chemo wouldnt it?

[JD-W]

Thank you Marla
Hope you’ve enjoyed/enjoying your time with your Father xxx

[JD-W]

Hi Daisy,
I saw my consultant and BC nurses yesterday. I had to have some fluid drained off which explained the feeling of having a tennis ball under my arm 😩
I’m classed as ‘borderline’ for chemo so we’ve opted to go down the Oncotype test route and I’ve been advised in the meantime to just ‘heal’ physically and mentally until the test comes back in a couple of weeks.
I should then see the oncologist w/c 17th Dec and at that point we will agree my treatment plan to start in the NY.

Was thinking about you this morning knowing your op is a week today...obviously you know how terrified I was before mine and if I can do it anyone can 👍🏻
Happy to answer any questions I can for you in the meantime to try and ease your mind.

Julie xxx

[daisydi]

Did you get your treatment plan sorted Julie?  One week to go for me now.  Getting that terror feeling again x

[Marla13]

Hi Julie-I'm so happy for you to hear that all nodes were clear. That's fantastic news! Congratulations...and now....breathe. 

xxxx

[JD-W]

Hi Carol Lina,
Totally agree about this forum...I’m so delighted I found it...it has helped me so much already 😊
Good luck with your Op xxx

[JD-W]

Hi Debbie,
Yes that’s exactly what I’ve told myself...it must have shown up in the operations...having been through 2 in 2 weeks now I’m hoping at least my BP is ok 😊 xxx

[Carol Lina]

Hi JD,

I'm really sorry you're going through it, and I completely understand your feelings. I was diagnosed 2 days after you and I'm due to a mastectomy. Like you I feel alone, even though my family and friends (most of them living on the other side of the ocean) have been very supportive. For me this lonely only shrinks a bit when Im here, ate this forum, talking to people who are having the same problem as me. So use it a lot and don't feel embarrassed with your syndrome, it happens for many of us. I start shaking when I talk about it and I can feel my heart starts racing when I receive a letter or text from hospital. I've been feeling oppressed when I go to there(and I used to work in a hospital. I have no idea how I'm going to do it again).

Try to do something that you really like and try to do as much as you can before going to bed, so you'll be very tired at night and may have a good night. Sending you hugs and good thoughts. We will be fine, after all the tears we'll laugh again ;-)

[Debbie61]

Hi Julie! Another big step successfully taken! Re white coat syndrome - no, still can’t use home machine 😖. I always cheerfully tell whoever is doing my BP that it will be high so sometimes it’s not as bad as they were expecting! It did occur to me that perhaps I actually do have really high blood pressure - but I guess that would have shown up during my ops. Otherwise I just ignore it and hope it will go away! Not very helpful! Debbie xx

[JD-W]

Daisydi thank you xxx
Thinking of you for your op 💪🏻

[daisydi]

That is absolutely brilliant.  Well done.  Onwards and upwards xx

[JD-W]

Hi all,
Just wanted to share some good news with you all...my BC nurse called me first thing to say all nodes removed were clear 💪🏻😃
Seeing my consultant later to start discussion my treatment plan xxx

[ladybowler]

Julie

Great to hear that you are the other side of your op and WOW what a fabulous nursing team you had, your consultant is awesome to ensure all of that happened to make sure you did not have to worry about your white coat syndrome.

Make sure you get plenty of rest now

Sending you hugs

Helena xxx

[JD-W]

Thanks Mai xxx

[Mai7]

Well done Julie. xx

[JD-W]

Thanks Daisy and thinking of you for your op on the 29th xxx

[daisydi]

Glad your op is over and that you are feeling ok.  x

[JD-W]

Thanks Marla you too 😊 xxx

[Marla13]

Julie-you are a real trooper! Congratulations on your successful surgery but more importantly, on how you handled *yourself* pre-, during and post the surgery! I knew you could do it!! So very happy for you. You sound in much better spirits today....I hope you have a good day knowing that is behind you now. 

Sending lots of love...

xxxx

[JD-W]

Morning all,

Just thought I’d give you an update as I’ve had my 2nd op and managed to get home last night 🙏🏻

Thank you all for your advice on dealing with this with white coat syndrome 😩

I spoke with my wonderful consultant and my BC nurse beforehand and explained how bad my anxiety had got.
My consultant then pulled all the teams together (ward nurses and theatre staff) and briefed them fully.
My BC nurse came down to the anesthetic room with me, my theatre nurse stayed with me for the full time in the recovery room and my consultant authorized the constant BP monitor to be removed and just do the one whilst in there.
Once up in the ward she had also advised to keep the BP monitoring to a min with reassurance throughout 😊

What a wonderful team and so very grateful.

Thanks again to you all for your advice.

Julie xxx

[Marla13]

Congratulations! and yes, your honeymoon is a wonderful memory to bring to the front of your mind to put you in a calm frame of mind. You will be fine! 

xxxx

[JD-W]

Thanks Marla and yes love Smooth too 😊
Lovely to hear your Father is visiting you xxx

Got married this year so will think of my wonderful honeymoon 💕

Yes will Definitely let you all know how today goes xxx

[Marla13]

Julie-good good luck for later today. Please don't be anxious....you will be fine and I trust that you trust you are in good hands. Use your time this morning to get yourself ready (bag packed) etc. and sit down, put on some relaxation music (I love Smooth FM or Jazz) and just visualise your last amazing holiday....and RELAX .

Thinking of you for later and please do update us...OK? 

My father is visiting from Canada this week so if I reply a little late or tomorrow, that'll be why, but I'll be thinking of you! 

xxxx

[JD-W]

Hi Marla,

Many thanks for replying it means such a lot to know I’m not on my own with this.
As you can imagine I’m feeling super anxious right now as due to have my 2nd op later today 🙏🏻

Julie xxx

[Marla13]

Hi JD-W,

I wanted to reply although I realise your Q was addressed to Debbie; my GP explained to me that the reason they take my BP (and presumably every other patients') more than once is because they *expect* our first reading to be high. Mine advised me to do the same at home....to take 3 readings-they normally record the lowest reading. I have been taking mine at home for over a year and it really does get easier. You just have to allow yourself time to get used to (sensitize) to your machine. Don't look at it as a scary old beast. Make friends with it. Take your BP a few times, and in between readings, take a deep breath in through your nose, out through your mouth, a few times, and then take your BP. Don't panic if the reading is high. Don't record it. Take time to just practice relaxing-before you take your readings. The luxury of taking it at home is that you can do it *when* you are relaxed, which is what my GP advised me. And make sure your arm is parallel (in line with) the table it is resting on....your arm shouldn't be hanging down, or on an incline, as this also alters the readings. I just wanted to post the above because I too thought I'll never be able to take mine at home, and I can now do it-albeit, yes, some of my readings *are* high, especially during weeks of stress. But just practice, as you would to overcome any phobia.

I hope the above works for you.

xxxx

[JD-W]

Hi Debbie,
Thanks for posting.
You are the only other person I’ve come across that also can’t take it at home...that’s the same as me 😞
Have you done anything about it? Xxx

[Debbie61]

Hi JD and ladies - looks like quite a few of us have white coat syndrome. As some of you other ladies said, my blood pressure shoots up the minute the machine comes out - but no good even if I do it myself at home! After my mastectomy the night nurses were popping in every 2 hours to take it so it was impossible to sleep. Just as I finally dropped off they came in again and I woke with a jump - BP rocketed and the nurses called their supervisor and I had a little group of nurses at the end of my bed muttering to each other about whether they should call in a doctor. Unsurprisingly that didn’t help! Had to go in for another op to remove more lymphs when sentinel node unexpectedly had spot of cancer. I begged the surgeon to let me go home afterwards and not stay in overnight as I couldn’t face that again, and he did. So, at the end of that ramble, JD you’re not on your own! By the way, I’m 3 years on and doing fine, as you will be too. Xx

[JD-W]

Hi Daisy,
I’ll keep you posted on how I get on tomorrow.

Julie xx

[JD-W]

Hi Marla,
Many thanks for your reassuring words and relaxation technique...I’ll give that a go.

Julie xx

[Marla13]

Hi JD-W,

I, too, emphathise with White Coat Syndrome as I have it too, and I was also told that it is not uncommon for blood pressure to rise after a general anaeasthetic.

https://www.healthline.com/health/what-causes-high-blood-pressure-after-surgery#pain-medications

When I had surgery in 2015, one of the night nurses scared the "bleep" out of me by saying "your BP is high...you need to get it checked out"-but shouting at me in the middle of the night! My mother was with me and couldn't believe the manner in which she said it. Like "duh"-is it a wonder...it's not going to go down by shouting at me". I honestly wouldn't worry about having higher BP when in hospital though I would definitely let your nurse know so that they can keep an eye on it (they will anyways) during the op and then in recovery. It wouldn't hurt to just mention it to them. But again, it's common for BP to rise after an anaesthetic so they need to take that account as part of the reason it may be high post-op. As for relaxation techniques...take deep breaths in through your nose for 3-4 seconds, and exhale (through your mouth) for 6-8 seconds. Practice this 3x/day to help you relax. You will be fine. 

Sending lots of love...

xxx

[daisydi]

Hi I am in exactly the same place as you.  Had mammoplasty on 29th October, 2 nodes removed, one positive so now waiting for axillary clearance booked for 29th Nov.  Wish I didnt have to wait so long.  Also 3 margins were not clear so they will open up wound and remove more.  I have been told grade 2 also ER pos HER neg.  I am also terrified and cant focus on anything but positive node.  Imaging all kinds of scenarios now.  I am also known to be a very strong women but feel like a baby at the moment.  My consultant says it is early breast cancer but how can it be early when it has already spread.  I am a looker after of everyone else.  Good luck for Wednesday. Please let me know how you get on.  We can do this

[JD-W]

Thank you so much for your kind and positive comments xx

[Mai7]

JD-W, just wanted to say hi and welcome and echo what the others have said.  I think the clinical environment is not conducive to relaxation and whilst the uniform is a necessary part of hygiene and professional presentation, it doesn't put you at ease.  A consultant came to see me when I was in isolation during chemo due to risk of infection and he was putting on a blue plastic apron as he approached me, I said "what are you going to do to me?" with a rather worried look on my face and he replied "I'm going to shake your hand!" the apron was to prevent germs being transferred whilst he chatted to me.    I had all of my lymph nodes cleared on one side as mine were full of cancer and I'm doing fine one year on since surgery, no signs of lymphodema or recurrence (fingers crossed).  There is research which is showing that if you stay fit and healthy your risks may be reduced.  I'm glad you found us here where we understand how you feel and I hope you continue to recover well from your surgery.  The mental recovery takes a bit longer.  Sending hugs. xxx

[JD-W]

Tha Khoi Jo...it’s so good to hear I’m not alone xx

[Jobey68]

I am another with white coat syndrome, stems from having pre eclampsia when I was pregnant many years ago! Left me with a fear of having my BP taken so its through the roof before I've even rolled my sleeves up! Had a monitor on at home before to get an accurate reading and its always within an acceptable range, bizarrely after my lumpectomy it dropped quite low which made us laugh after all these years of it being high! 

Its natural to feel anxious and also perfectly normal to focus on the one minute bit of negative news even when the rest was so positive, we all do it. 

Plenty of ladies here to talk to at all hours of the day and night so you are never on your own Xx Jo 

[JD-W]

Ok thank you Ann xx

[ann-m]

Just to add, your bp may well be just fine post op due to the anaesthetic & obviously not being anxious when sedated & in recovery. x

[ann-m]

Hi JDW,
It is a common problem. The nurse I saw for my pre-op check was quite reassuring, she told me not to worry & that they expect people to be anxious when going through this. Ironically, on the day of the op itself, I was so relieved it was going ahead, my bp went down a bit.
Try not to worry about it, they are measuring a stressed bp, not a resting bp, so it will likely to be at it’s highest in that situation.
I decided to do it myself, following seeing my GP about my tamoxifen prescription. My heart sank when he said ‘lets just check your bp’ then he wished he hadn’t!
Once I had desensitised myself to doing it myself, my bp is just fine, as I knew it was & my GPs happy!
ann x

[JD-W]

Thank you Helena for replying so quickly xx

[JD-W]

Thanks Ann for your kind words.
I know so little about having my nodes removed and have been given a booklet to read on Lymphodema which has added to my worries.
Do you have any tips on reducing the panic that comes with white coat and in particular how I can calm down when in the recovery room and then the regular BP checks they have to do post op?
Xx

[ann-m]

Hi JDW,

First of all welcome & glad you found us.

I think most of us have gone through anxieties, especially during the early days of diagnosis & sometimes the whole thing can feel somewhat irrational at times.

Yes, it is daunting to have further surgery, but try & hold onto what the surgeon said about it being mainly good news. Node involvement is very common, but what is reassuring is that recent research has shown that minor node involvement as you describe, does not make a lot of difference in terms of outomes & the surgery will reduce the risk further.

I can relate to white coat syndrome & I work in the NHS! I only have to go into the clinic situation & my blood pressure shoots up. I now do my bp at home & yes, it's fine.

Anyway, feeling anxiety when going through this is quite normal, so be kind to yourself.

ann x