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Terrified newby

45 REPLIES 45
Raitchr
Member

Re: Terrified newby

I also brought a heart shaped pillow from Jens friends on facebook for 3.50 postage, the pillows are free. Its great to protect op side in car or at home. I used mine when I had seroma, you gently hug the pillow to apply pressure to force the liquid to disperse. 

 

From Amazon I got a triangular pillow which I used in bed so I could sit up comfortably. Also used it to make a "nest" in bed at night to help me sleep.

 

H

feelthefear
Member

Re: Terrified newby

Thanks Heather.
I've been getting an overnight bag together just in case. New pjs etc, as obviously Ill have to look my best when I get my boob off.
I've spent that much on new things, you'd think I was going somewhere nice. X 🤔😀
Raitchr
Member

Re: Terrified newby

Hi, pack an overnight bag and leave it in the car just in case. I was told mine was a day case but didn't go to theatre until 4pm, reacted to both radioactive and blue dye, woke up in bed in a ward 9.30pm.

 

I also took throat sweets as throat can be sore after having tube down it in op.Baby wipes too so you can clean up if needed!

 

H

feelthefear
Member

Re: Terrified newby

P.s. I had microblading on my eyebrows yesterday in preparation for the possibility of losing them during chemo.
If anyone else is considering having it done, I'd say go for it. Barely any pain and only took an hour. X
feelthefear
Member

Re: Terrified newby

At my pre op yesterday they told me if everything goes to plan I'll be home as soon as I've had something to eat and a wee!!
Do they send you home with a drain?
I'm having 7 lymph nodes out as well as the boob. X
Anniej
Community Champion

Re: Terrified newby

Bag for drain is a must as you can put your other bits in and still have free hands. Hairbrush, hankies, lip salve 

Dont forget a little pillow for over your boob and under the seat belt when you get driven home. Good luck. X

Raitchr
Member

Re: Terrified newby

I was expecting to have a drain but didn't in the end and I took a lanyard neck strap to clip it to so it could just dangle!

feelthefear
Member

Re: Terrified newby

Thanks for the advice everyone, and I'd never thought of a bag for the drain. Brilliant idea. X
lizred
Member

Re: Terrified newby

HI

yes, soft crop top type bras are the way to go! I'm still wearing mine (nearly a year on) - not particularly glamorous but very comfy!

Feelthefear - re what to take into hospital - you may well know about this already but, if you are likely to have a drain after the op then take a soft cotton bag with straps long enough to go over your shoulder comfortably (like all the reusable fabric shopping bags) as it makes carrying the drain around a lot easier xx

Debbie61
Member

Re: Terrified newby

Like Heather I just wore crop top and loose shirt (pyjamas!) for first week or so, then ordered some post op bras from M&S which are fine. Debbie x

Raitchr
Member

Re: Terrified newby

Hi I couldn't wear a bra for awhile. Came out on hospital wearing cami top with loose shirt over the top. This is what I used for 2 weeks as scar didn't have a dressing over it. These were cheap ones from Asda. Then I have got 3 elasticated bras, no wire or proper cups from Peacocks. They have a removable padded cup each side so I took both out and made my softie the same size as remaining boob, I am 34B/C. I am comfortable like this, never liked underwired bras anyway. Will buy proper bras when I get prosthesis in a few weeks when any swelling has gone down.

 

M&S, John Lewis and Debenhams all do post op bras but I haven't been let loose in the shops yet.

 

Heather

feelthefear
Member

Re: Terrified newby

I was wondering can anyone advise me on what kind of bras I should be buying ready for my mastectomy? I'm looking online, but I'm a bit overwhelmed. Will a post op bra do or do I need a special post mastectomy bra? Can anyone recommend one? Thank you.
Off for my pre op this morning. 😳🤞
ladybowler
Community Champion

Re: Terrified newby

feelthefear

 

Oh how true, I remember when I was diagnosed, mine was as a result of a recall from a routine mammogram, one week I was playing in a bowls final competition and the next week I was being told I had breast cancer talk about extremes 🙂  but it is history now and the new bowls season starts this week 🙂

 

Helena xxx

feelthefear
Member

Re: Terrified newby

Thanks Helena. I suppose I'll stock up on both. More things to add to my boob off list along with the loose fitting tops, special bras etc. Last week I was shopping for holiday clothes. 😳 How quickly things can change. X
ladybowler
Community Champion

Re: Terrified newby

feelthefear

 

If I was you I would check with your breast team, there is something in the back of my mind about not using bio oil until a scar has completely healed. 

 

E45 seems to be recommended by a lot of the hospitals for moisturising during radiotherapy the skin hydrated.

 

Helena xx

feelthefear
Member

Re: Terrified newby

After reading some of you mention e45, I'm wondering if I'll be allowed to use bio oil? I was going to stock up as it worked wonders on my caesarean scar.
I suppose I should think myself lucky my consultant has offered to take off my healthy boob. I was dreaming the cancer has spread to it last night and was then up from 4am thinking I could feel lumps in it. 😳
Raitchr
Member

Re: Terrified newby

Mine is glued but healed well. Physio said to massage e45 in circular motion twice a day to reduce scar tissue underneath and to stop it feeling tight.

 

Heather

tgregory
Member

Re: Terrified newby

Hi Heather,

was going to look this morning.  Got all ready. Told my husband and he suggested waiting until tonight so it didn't ruin the day 😂  I don't have any more reviews now. Just got told would be seen in 6 months. But to ring up when the scar is healed for false boob 😀  Got glue on the scar according to my husband. 

 

Tracey

Raitchr
Member

Re: Terrified newby

Tgregory, thought you would have looked by now, be brave, you will be fine.When you have had your 1st Physio review after op then you need to start putting on e45 or similar twice a day to the scar so unless your husband is a willing volunteer or draws short straw you will need to look at it!

 

Best wishes

Heather

tgregory
Member

Re: Terrified newby

Heather, I asked for both when I had my mastectomy and was told no. I haven't been given the option. Now I feel lopsided and as we've discussed before had op 30th March and still not looked 😩 

 

Feel the fear, I classed myself as a strong person both mentally and physically until my diagnosis then I've cried more in the last month than in my entire life. But the support you get on this forum is amazing. And people care and can speak from their own experiences. I had mastectomy and sentinel lobe biopsy on the 30th March if you have any questions. 

 

Tracey

feelthefear
Member

Re: Terrified newby

Hi Helena.
Yes, they're aware. My son already has a social worker who works on his care package. I've emailed him and I'm hoping to hear back next week. I've got family support, but I would also like a back up plan just in case we need any extra support over the next few months. X
ladybowler
Community Champion

Re: Terrified newby

feelthefear

 

Are your breast care team aware that you have a disabled son, it might be worth mentioning it to them, when I at my apt for my treatment plan, I mentioned that my partner had MS which is why I did not want to stay in overnight!! they asked if there was any care package that they could put in place to help me with him over the coming weeks.  Perhaps your hospital might be able to assist you.

 

Helena xx

 

 

Raitchr
Member

Re: Terrified newby

Good to hear you are more positive today, I found it easier the more I shared my"news" with people, the easier it got.

 

H

feelthefear
Member

Re: Terrified newby

Yeah, with hindsight having the use of at least one arm while in recovery probably outweighs the need to have the healthy boob straight off. I have a disabled adult son so will need to be at least partially able to things. I do hope to have them both off and a new pair by the end of the year. Maybe for Christmas. 😀Then a winter holiday to celebrate I think. Im feeling much more positive and in control today. X
Raitchr
Member

Re: Terrified newby

I didn't hear much either at my appointments as I was so upset at being told it was cancer but took my husband and he could remember exactly what the Consultant said, usually he can't remember anything on a day to day basis, typical man. 

 

I now go to appointments with pen and notebook and write everything down, then they have to go really slow with explaining things so I can keep up.

 

I also wanted double mx straight away as I thought the other one was a ticking time bomb and wanted to remove as much risk of it coming back. I still want to get rid of the other one but have to wait. Thinking about doing both at same time, my recovery would have been longer and was pleased that I could at least use left hand, it would be difficult with both.

 

Heather

ladybowler
Community Champion

Re: Terrified newby

Feelthefear

 

That is quite normal and why they recommend someone going with you to the appointments because you really do not hear much after they confirm it is cancer.  The stuff my friend told me about what the consultant said was amazing, I really had not heard much at all.

 

Helena xx

feelthefear
Member

Re: Terrified newby

Thanks Liz.
My husband has just informed me that my consultant said I can have the healthy boob off, but not initially. They'll remove it when I go in for reconstruction. I'm starting to think I wasn't even present when I was given my diagnosis and treatment plan last week. My husband seems to know a lot more than me. 😳
lizred
Member

Re: Terrified newby

HI

re the double mx - the docs will usually only consider it if you already have cancer in both sides or if you have an underlying condition eg the BRCA gene, which raises your risk over a certain threshold. I know I considered it before my mx as there were changes showing on the mammogram on both sides - I got referred to genetics and there is also a psychologist who works with the BC team to talk through the process with you and make sure you have thought through all aspects of the decision.

In the end I went for only single mx but am considering left side as well again now (I have a genetic condition that tips the risk into the 'right' level). After my first op I did wonder how I would have managed if I had had both sides done at once as I couldn't use my right arm much for a while and had to get good at doing things left handed. Again, as Raitchr said, please ask if there is anything else you want to know. Liz x

feelthefear
Member

Re: Terrified newby

No one has mentioned psychological tests. However, the way Im looking at it is by having both removed I'm taking some control over cancer. I had twins so have plenty of excess stomach skin to make a couple of decent 34d's. 😳
The whole situation is just so awful. X
Raitchr
Member

Re: Terrified newby

Will let you know re chemo.

 

My consultant wouldn't do double mx as they will not take healthy tissue. That's why I had Mri to check other boob which showed on Mri to be healthy and no cancer. You can have a psychological test to see if emotionally deal with double if one is healthy but I was told this would delay op by 3 weeks.

 

Breast care nurse said do single mx then after chemo if can't live with one boob then can have other taken off at later date. 

 

Heather

feelthefear
Member

Re: Terrified newby

Thanks for this Heather. Knowing what to expect makes things a little less daunting. I'm not going for immediate recon. I've decided to have a double mastectomy as even though there's no sign of cancer in the left boob I don't ever want to go through this again. It would be great if you could let me know how you cope with the chemo. X
Raitchr
Member

Re: Terrified newby

I had Mri which showed nodes looked clear and in op I had Sentnel node biopsy, the first 4 were removed and came back clear. They used the radioactive tracer pre op and blue dye in op to find them.

 

Mine was a day case but they only operate in afternoon and only see 2 ladies at my hospital a day. I went to theatre at 4pm, took a long time in recovery as reacted to blue dye so stayed in overnight, allowed home 11am. Was happy I stayed in as was looked after very well and checked every 30 mins until 2am, pain level was checked and given liquid morphine in the night once. I did pack an overnight bag on the off chance I had to stay in. Was able to get up in night to go to the toilet but had to drag a drip trolley with me as had 2 saline bags through the night. Due to my reaction to blue dye. Had my own room too.

 

I didn't have a drain and there wasn't a dressing so could see scar, I didn't have reconstruction as that op was 6-8 hours. All I wanted was the cancer to be gone and to get home. If you have immediate recon then you are in hospital for 3 to 5 days.

 

Recovery at home was quick. I slept in a bed on my own to 10 nights, made a nest with loads of pillows to keep me from rolling on to op side. GP gave me tramadol tablets, one before bed and have slept well. I couldn't wear bra for 3 week, got some cheap cami tops from Asda to wear under loose shirts and leggings. Got cheap elasticated bras from Peacocks as have a pocket for softie to go in.

 

Do exercises 3 times a day without fail. I did and physio discharged me on 3 week follow up appmt as so pleaded with progress. They gave me a 2nd set of exercises to do for 3 months. Have only just started driving again after 4 weeks, that was my choice, enjoyed my husband being taxi service for me as he works from home!

 

Re chemo they give you antisickness medication before chemo and you take it regularly at home after chemo, you are rarely sick. I think for me the tiredness will be worse.

 

My chemo will be FEC-T so 3 cycles of FEC then 3 cycles of T. My cancer was triple negative invasive ductal, stage 1 grade 3 2.4 cm no lymph or vascular involvement. 

 

Sorry for the long message!

 

Heather

feelthefear
Member

Re: Terrified newby

Hi raitchr.
I was wondering, did you have any lymph nodes removed also? How long was your hospital stay? And how are you baring up? Good luck with the chemo. I've been reading about fasting. I know I shouldn't be at this stage. 🤔 But it looks interesting. I'm an absolute wimp when it comes to being sick.
Raitchr
Member

Re: Terrified newby

BTW I had right mastectomy 4 weeks ago so if you want to know anything about op and recovery then just ask.

 

My husband told me to look at my treatment plan in stages, 1 is op, 2 is chemo and 3 is rads. This meant I only researched (ok, googled like mad) each stage and only focused on that stage. Just about to start chemo this month and was told I don't need rads so only chemo stage to go.

 

Let us all know how your CT scan goes and we will be here for you.

feelthefear
Member

Re: Terrified newby

Thanks Heather.
I really appreciate everyone taking the time to reply to me. It's snapped me out of the crazy terror I was in earlier today. I know I'll feel that sense of relief you talk about once I've had my ct scan and can purely focus on gathering my troops to fight the bc. And yes, you're right about electrical devices. I'll be leaving my phone downstairs tonight instead of on the bedside table.
Angela. X
Raitchr
Member

Re: Terrified newby

Hi sorry that you feel how you do but as others have said when you get a treatment plan you will be able to make your choice and be in a better position. 

 

I googled everything too soon before knowing what the plan was and scared myself silly. I couldn't sleep and if I did I woke up at 3am and that was it for the night. Remove all electrical devices from bedside to stop you googling in the night.

 

After I was told my plan I just cried for the rest of the day. Relief because I was scared, relief because it could be treated, relief that I could grieve for my old life and move on with the new one.

 

One thing I know is that we are stronger than we think we are and this is just a test for us. Don't give up and let Mr C win, be strong and fight for your family.

 

Best wishes

Heather

 

ann-m
Community Champion

Re: Terrified newby

Hi ftf,

Meri is absolutely right, do not go beyond what you know already know, just look to the next stage.  Even though there is loads of great support here, understandably, those having problems will post, so sometimes things can seem more daunting than they may turn out for you & everyone's experience is unique to them. This time last year, I found reading the 'hormone treatment' led me to be more anxious about tamoxifen, than I needed to be as it turned out.  There is no need to visit the secondaries section, or even the 'going through treatment' section yet as your treatment plan has to be finalised. 

Just come on here & chat whenever you need to, we've all been where you are now.

ann x

feelthefear
Member

Re: Terrified newby

Thanks meri.
And that's a good point about reading relevant sections. I found myself trawling through secondary this morning and I'm sure it didn't help.
I hope everything goes well for you. X
Meri
Member

Re: Terrified newby

It is like grieving process, shock, denial, anger, fear, resignation,

 

The fear I feel is so agonising as we spend so long wiating for results, once we have them then plans can be made, but meanwhile fear the worst.

 

I just had lump removed and some nodes, wiating for results, very sore. Each procedure, test, scan is traumatic in and of itself.

 

And apart from here don't feel prepared for them much at all.

 

I found looking online very scary and decided to be kind to myself focus on next step, look it up, ask questions.

 

Even on this site try to only read relevant sections and bear in mind those most affected come here, most of those who cured, doing well, not all here so some sections seem worrying.

 

I hope you find some way to ease the fear a little, distractions that get u through the day.

🙂

 

 

 

 

feelthefear
Member

Re: Terrified newby

Hi Anniej.
Thanks for your reply. It's helpful to be able to air my fears on this forum, rather than adding to my family's worries.
I've got ductal bc. One lymph node was suspicious and biopsy confirmed cancer cells. The area affected over my breast seems to be about 10cm. 😳 And there are scattered calcium deposits. I've been told it's primary cancer, but I've convinced myself it's spread to the liver and that my number's up. I'm 42 and was hoping I had a few years left yet. Half of the time I know I'm letting my fear run away with me and the rest of the time I'm crippled with panic. X
Anniej
Community Champion

Re: Terrified newby

Hi newby, sorry to hear you have joined our very exclusive club. Firstly, follow everyone's advice and DONOT google! If you do you will certainly find more aches, pains and lumps as your mind is in overdrive. I'll bet you aren't sleeping, either, which just makes it worse. You could get help from your GP , you know.

I think your dates are pretty impressive, and you seem to be moving at a fair old rate. You don't say anything about the type of cancer, or the stage. Knowing a few facts made me feel more in control, and even though my Mr.Blobby was out of control I was told it was very treatable. He's all gone now, and I'm moving into chemo next week. Have faith in your medical team as they only want the best for you. Just keep busy, meet friends, and stay off google! Sending a big hug. X

feelthefear
Member

Re: Terrified newby

Thanks Ann.
I'm usually so rational, finding myself in a situation where I'm allowing my fear to override my common sense is awful. X
feelthefear
Member

Re: Terrified newby

Thanks for the reply fee70 and I hope Wednesday works out well for you. Yes, you're right the wait is awful. Think, think, think is all I seem to do. X
ann-m
Community Champion

Re: Terrified newby

hi feelthefear,
Sorry you find yourself here, these early days of diagnosis are always the worst
Do step away from google, it only makes the anxiety a lot worse, as the info is not specific to you & is often out of date. Your team will give you all the info you need & use this site or macmillan for info. We've all been there with'dr google' & quite honestly it's not helpful at this stage when the diagnosis has to be finalised & the treatment plan put in place.
do take care, it will now be dealt with
hugs
ann x
Fee70
Member

Re: Terrified newby

Hi

Sending you a big hug, the waiting is just awful hopefully you will get the answers you need soon xxx I hope to find out my answers on Wednesday but each day is longer than the last it seems xx try to keep busy xx
feelthefear
Member

Terrified newby

I was diagnosed with bc in the right breast last week. It's also spread to at least one lymph node. Mastectomy is scheduled for three weeks.
I'm now absolutely convinced it's spread to my liver. On and off over the past three years I've been able to feel a small mass under my right rib cage. Can't feel it with hand, just a feeling that something's there.
I've now found myself googling like mad and of course I'm now certain it's liver cancer. 😳
I'm putting a brave face on things in front of family but as soon as they turn their backs I'm getting info from dr google.
At my request, I'm waiting for a CT scan. I'll be amazed if it doesn't show any spread.
I've got myself into such a state of terror I just want to hide away.