66855members
352799posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Diagnosed 2 days ago.. Scared

132 REPLIES 132
Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

Oh dear ladies, But you've both sensible and taken advice.

I know how you felt about being lonely in hospital.  I ended up in for a couple of days with low neutrophiles and it was the day my son got his GCSE results so I missed out but I had to way that up with being safe and after 2 days I was back home and had no more issues.

Keep strong ladies, just keep ticking off the days.

Kip

x

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi Claire.. Hope they sort your pain out in your legs and the spots.. I had joint pain in my wrist and leg.. The pain was dreadful it only lasted a day with me but my heart goes out to you 😢 it's hard isn't it hope your feeling better very soon 

Hugs San x

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Aww San

So sorry to hear you've not been well. Will they carry on with your chemo and just adjust it a little ? I suppose the first one is a bit if a trial as none of us know how we will react. 

Pleased they are helping you with the symptoms though. The teams seem great and are there to help with ant little query. 

I've called my nurse a couple of times regarding leg pain and sore spots on my face and head. They told me to take antihistamine and are calling me tomorrow to see if any improvement. 

Keep fighting San and I hope the next round it alot kinder too you. 

Claire xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Thanks kip 😊 I've still got a lot of mouth ulcers but I now have medicine for it so hopefully in a few days they will get better.. I've been unable to eat and lost 7 pounds in weight this week but to be fair I'm a size 14/16 so I can afford to lose a bit of weight 👌

I'm feeling a bit more positive but last weekend when they admitted me to hospital I signed myself out which I know was stupid but I was so low I couldn't cope with the thought of beening so alone in hospital (because of covid) I just wanted to be with my husband at home... I've learnt such a lot about myself through this journey and there is a lot I don't like about me that I need to work on and change

Hugs San x

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

Hi All,

 

Firstly Znandra, you poor thing.  Sounds like you got all the SEs in one big woosh.  Unfortunately the first round is always a "do it and see" kind of thing as you never know how you'll react.  But at least they'll have it all sorted for next time.  Its amazing what they can give you and what they can tweak.  Hope those ulcers have gone. Yuck.  I had a sore mouth sometimes, particularly on my last type of chemo.  Salt water rinsed out regularly helped, as did Iglu mouth gel.  Also I was given some mouth wash from the chemo unit to use, trying to remember is name?    Worth asking the hospital.  

Spots - I never got them but I do recall lots of ladies who did from time to time.  Don't worry about it feeling trivial to ask the chemo hotline.. they'd rather you asked and have come across all sorts.  Worth asking for some advice.

Kip

x

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi all 

They have stopped my chemo for now because I have reacted so badly to it... I've experienced all side effects 😢 atm I'm battling mouth ulcers but I'm have ulcers in my privates as well.. I could list them but I think that's too depressing.. Each side effect lasted a couple of days.. Anyway long story short at least my high temperature wasn't sepsis it was a water infection.. I should of have my 2nd chemo yesterday but now I wait for my doctor to get in touch... I've been told they may refer me to the new Clatterbridge hospital that opened a couple of days ago here in Liverpool because they can deal better with ppl like me apparently.. Sorry about the doom and gloom I am now beginning to improve and feel better.. I'm actually not surprised this have happened to me I'm allergic to penicillin and few other medicines not to mention different foods and drinks I react to as well.. On a positive note at least now they will tweek my chemo and observe me more closely next time which will be in a couple of weeks

Hugs San xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi Kip

No I didn't have injections before, they never mentioned them. They did put steroid through the drip before my chemo though . 

I checked with the team before taking paracetamol and had already checked my temp. Legs seem better today . 

I've come out in alot of spots . Never usually suffer with spots but they are on my forehead, shoulders and back . Some quite sore . I've been putting cream on them as I think it's a minor thing to call the team for .  Has anyone else had them ? 

Claire x

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

Hello Clare,

Glad you are feeling ok after the first chemo.   Its always strange waiting for something to happen, and for many people nothing much does.  Did you have to have the injections into your tummy after chemo, if you did that can cause leg aches (and back sometimes),  just check you are ok to take pain killers for it.. but remember to take your temperature BEFORE you take any pain killers as they lower your temperature. best to be careful.

Hope you're still feeling good.

Kip

x

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi all

Just wondering how everyone's getting on ? 

San how have you been after your first chemo ? Hope you're ok .

I had my first on Friday and so far so good. Had quite bad pains in my legs yesterday but have eased off a bit today . I'm not getting too confident yet though as I'm expecting to feel the effects over the next few days . 

Thinking if you all

Claire x

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

Hi there Exonian,

Glad you found this page, although not glad you had to find it in the first place.   I'm two years post diagnosis now.  I had single mastectomy, node clearance, 3 positive nodes ,chemo, radiotherapy and now on Tamoxifen for 10 years.   Its quite some journey but one you'll find is manageable in small steps.   The operation, as the others have said, was quite straight forwarded, in and out on same day, all healed up really well.  I've reamined flat, but when you make a choice, make sure you have all the information, my BCN showed me photos of different options, its a very personal thing and whats right for you may not be right for someone else.   Focus just on the next step for now, otherwise it can be overwhelming.  

Znandra - so glad the chemo went ok.  It is quite a relaxing unit at my hospital too, lovely staff.  I was in out and in 2-3 hours.  I had FEC x 3 and then T x 3.  I remember after my first one I sat at home just waiting for something to happen, nothing much did really... a few days later I felt a little bit nauseous but nothing too bad, no actual vomiting.  If you have steroids to take, bear in mind for a lot of us they made us very emotional when coming off them, expect a dip in emotions.. or a big shopping spree... steroids make you shop online (that was our excuse anyway!!).  And of course, the hair thing.   Mine started shedding about 12-14 days after first chemo.. had it shaved off once it was falling out everywhere.   Tough time but its just another step to getting through it. Once its gone its gone and the fear of waiting for it to go is all over.

Hopefully you've found the chemo group for June and can go through it with them.. you'll make life long friends on there.. I still have a group and we regularly chat and even met up.   As you've found, sometimes only someone going through/gone through this can really get it.

Take care ladies

Hope the weather isn't too hot for you.. 

Kip

x

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi exonian

Mine and Claire diagnosis are virtually the same though I haven't an mastectomy I did lose my nipple and half my breast but nothing a 'chicken fillet' won't fix for future nights out 👍

 

I'm 6 weeks post op I was so scared of the operation but the reality was a very positive experience I would never be that scared to go under the knife again.. The reality is you close your eyes for 2 seconds then they wake you up.. And for the first time since your diagnosis you feel free and the cancer gone!! Honestly I never felt so good and so hopeful 😊 they took 12 lymph nodes (some ppl have as little as 4 and some ppl have as many as 18) I had 12 and like Claire 2 of mine were cancerous which went from grade 2 to 3 because it reach our lymph nodes which means they offer you chemo and radiotherapy to protect your future self 👍

 

I had my first chemo session today and like the operation I feared it.. Well if I'm honest I fear the hair loss but I will take that in hand as soon as I can by making an appointment with a wig specialist and taking control of that situation.. All I know fear always come with the unknown they go hand in hand.. And looking back the fear of the operation and the fear of the chemo is actually worse then the actual experience and both experiences have been surprisingly pleasant certainly not scary at all.. I just have to conquer this fear of the hair loss now

 

It's a journey no one asks to be on yet we find ourselves here anyway... They say you have breast cancer and we automatically think death.. But it isn't and honestly if you were made to pick a cancer we would look up the statistics of all different cancers and we would all pick this one because the odds are so good and in our favour

 

This is a wonderful forum and as I first wrote this thread 'diagnosed 2 days ago.. Scared' I have found comfort... Support.. And lots of important information and most importantly lots of wonderful ppl travelling along the same road as me.. And I appreciate ech and everyone of them 😍😍

 

Hugs San xxx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Thank you for your reply you sound lovely and possitive 😊 I am worried re the choice big op or mastectomy but hearing why you chose I fully accept and understand as I believe I would fear it would come back.. I appreciate your reply I am wishing you wellness and a further good recovery 😊

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi Exonian

Sorry to hear you're also here but there is lots of lovely ladies here to help. 

I had a mastectomy and full lymph node clearance 4 weeks ago tomorrow. 

I was originally diagnosed with grade 2 invasive ductal 30mm in size and 2 cancerous lymph nodes. Once I had my surgery it  was found I had 30mm lump but also 35mm DCIS but thankfully this was non travelling , still 2 cancerous lymph nodes but they removed 18 and it became grade 3 . 

I was never in any doubt I was going to have a mastectomy as I was worried they wouldn't get clear margins and I'd have to go back and have it done again. When I had mine done reconstruction wasn't an option because of Covid but they did say they could leave enough skin to do one further down the line. I declined and have decided not to have recon. 

Recovery has been really good and I was in and out of hospital the same day , and up and about the next day , although quite sore. 

I'm now having chemo ( starting Friday ) then radiotherapy and tamoxifen . A long road ahead but I'll get there . 

Take care 

Claire xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi 

I am new on here just diagnosed with same as you, so awaiting mri results, consultant has said he hopes it all contained in one breast, also given me a choice of a op which I can't remember the name with remolding of breast of mastectomy but he did say because of Covid and I have cardimyopathy mastectomy would be a easier op then first choice but goalposts may need to change with mri results... I wondered how you have been and what op and treatment you had and how is your well being? As your a few months in front of me 

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi San , been thinking about you today . So pleased it all went ok for you . Hopefully you'll stay as well as possible throughout but rest up when you need too. Keep us posted .

Thanks Kip met my team yesterday . They have decided to give me Abraxzane first and EC second . There was no reason they said . I start on Friday afternoon. They said I'll only be there a couple of hours . Is this how long you were there San ?  I thought it would be longer . I've decided not to cold cap .

Claire 

Xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi girls.. Had my first chemo.. I was nervous but it was fine.. Very relaxing tbh.. So far and its only 8 hrs but no side effects 🤞 fingers crossed it stays that way.. I'm feeling great compared to this morning

 

Hugs San xxx

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

Hope all going well today Znandra.   First one is the scariest but you'll be well looked after.  Take it easy, put your feet up and let us know you're ok.

Good luck to you to Claire with your upcoming chemo.  

I kept a tally of days like Shi.. .was great to see them ticked off day by day. 

Big hugs coming your way ladies.

Kip

xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Thanks Claire 😘 I've woken up this morning feeling more positive... Good lick for today 👍 I will be thinking of you 

Hugs San xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Oh San , sorry to hear you've not been having a good day . It's only natural. Every time something new comes along I'm the same. Let it out . Have you someone at home to talk too ? 

All sorts of emotions will be going on . I'm sure we'll have up and down days but we have to remember it's only for a short time and we will come out the other end . 

I meet my chemo team tomorrow and they aim to start me on Friday so I'm sure I'll be the absolute same as you . 

Big hugs . I'll be thinking of you xx

Claire xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Had the worse day today.. Went for my chemo assignment this morning and ct scan.. I've cried on and off all day.. Don't know why really I just feel overwhelmed and terribly sad 😢 I hate getting upset it makes me feel weak.. I need to get my head around this because I start chemo on Wednesday

 

San xxx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi San

It seems like the return of the hot flushes is probably normal then .

It seems we all have different scans. I just worry that the pain in my upper back doesn't seem to be going away . If it was muscular surely it would ? Who knows . I keep mentioning it but they don't seem to take an interest. My consultant was off last week so hopefully when she's back this week it will be brought up again . I'm hoping they will give me another scan just to double check. My nurse said it's not common practice to have more scans even when treatment is over . That's worrying as I would have thought they would repeat scans to check everything has gone .

My team have been really great and really quick considering the current situation. I'm pleased I've had surgery first to remove all they can see . Just keeping everything crossed my lymph nodes did their job and contained it .

When I'm due a mammogram again I'm going to ask about scans. They have told me I have dense boobs ( boob now !! )  so a mammogram doesn't always pick things up until it gets quite big. Hoping they look into this . 

All of the wig shops are closed near me so that's another challenge. My nurse has suggested I try cold capping but I'm unsure . Maybe worth a try to see how I get on . 

Take care 

Claire xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi Claire... Well just after my operation I hardly had any hot flushes for about a week but then they had gradually came back and it's unbeatable at times I basically have about 3 flushes every hour all day long and through the night.. I've not suffered from ache tbh... I haven't been offered a MRI scan and I've only been offered a ct scan because of my back/pelvis pain so I'm assuming any ct scan they offer you they check all you're bones?? I've had a chest xray before my operation to see if my chest was clear.. Whatever that means.. Clear of infection or clear of cancer I wouldn't know because they didn't state why and I was probably to scared to ask

 

Maybe the different procedures are that post code lottery we mentioned before but why it isn't the same for everyone I don't know?

 

I'm from Liverpool and we do have a couple of good hospitals here.. I'm being looked after at Aintree hospital the have a macmillan centre which is fairly new so has all the latest equipment etc which is reassuring 

 

I'm not looking forward to next week but at the same time I know I have to go through this before I can get back to my old life 

 

We just have to put our trust in these ppl all I know is that they have a duty of care and if you ask them any question they have to give us a honest no bullsh#t (sorry for the swear word) answer.. In other words whatever they have said to you is the truth of it 

 

Hugs San xx

 

 

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi San

Yes we certainly seem to be on the same journey !! I am wondering exactly the same about tamoxifen. Why don't they start it straight away if they know what is feeding the C. 

I started with hot flushes about 9 months ago and went to the Drs but was fobbed off . Basically it's the start of your menopause and until you feel you can't cope with symptoms then get on with it. I also went back about 2 months before my diagnosis and was offered HRT ( no blood tests etc ) . I declined but took the info she gave to me to have a look at. 

I now think it was all cancer related but I'm worried as I've started to get the flushes again. Are you still having them San ? 

I've also had a full ache between my shoulder blades . It appeared about 6 weeks before my diagnosis . I had a c.t and mri which my BC nurse assures me were clear but no bone scans . I mentioned it again to her yesterday bit she didn't seem concerned although it's worrying me . Any suggestions ? 

Take care 

Claire 

Xx

 

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi San

Yes we certainly seem to be on the same journey !! I am wondering exactly the same about tamoxifen. Why don't they start it straight away if they know what is feeding the C. 

I started with hot flushes about 9 months ago and went to the Drs but was fobbed off . Basically it's the start of your menopause and until you feel you can't cope with symptoms then get on with it. I also went back about 2 months before my diagnosis and was offered HRT ( no blood tests etc ) . I declined but took the info she gave to me to have a look at. 

I now think it was all cancer related but I'm worried as I've started to get the flushes again. Are you still having them San ? 

I've also had a full ache between my shoulder blades . It appeared about 6 weeks before my diagnosis . I had a c.t and mri which my BC nurse assures me were clear but no bone scans . I mentioned it again to her yesterday bit she didn't seem concerned although it's worrying me . Any suggestions ? 

Take care 

Claire 

Xxx

 

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi Claire.. We have exactly the same type of breast cancer I'm also ER 8/8 HER2 Negative.. I have suffered a lot of hot flushes since the start of my menopause I have about 30 to 50 everyday.. I know it sound crazy but because I know this linked to my breast cancer each I had a hot flush I felt it was like it was feeding the cancer.. Making it bigger? I know that sound mad but what I don't understand is if the hormone therapy is so affective for our type of cancer why aren't I getting it now? Instead I'm getting it after the chemo and radio treatment? Makes no sense to me.. On a positive note my back pain has improved a lot today which makes me worry less I'm not so stressed to the ct scan on Monday now xx

 

Hugs San xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi all 

I've just had a really long chat with my BC nurse . She has gone through everything and explained that grade 3  means the cells are dividing and grow faster but doesn't necessarily mean there is spread beyond the lymph nodes . I'm ER+ 8/8 and she says that means I'm highly sensitive to the female hormone so the drugs they give me to stop it will be highly effective . I'm also HER2 - . Also they are saying they have removed everything they can see during surgery . 

Just waiting to hear now from the chemo team for a start date . 

Claire xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi ladies, 

I was upgraded to a grade 3 too, lymph nodes were clear. I had oncotype testing with showed intermediate risk of recurrence (score was 19) so I’ve decided against chemo. I had radiotherapy planning today and will have 15 sessions plus 5 boost then see oncologist again for medication planning. 
I fluctuate between margins (by a whisker) and lymph nodes were clear so it’s fine to I’m sure there are rogue cells out there. 
best wishes 

Mel xx 

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

❤️ Think it’s happened to a lot of us, biopsy has shown them grade 2 but results after op showed grade 3. Please do call the number on here and speak to nurses, also please do speak to the bcn you will have been given ❤️ your teams have seen it all before and will know what to do. It’s like being chucked out of a plane with no parachute to start with but you’ll flap your arms and fly through the treatments and others on here grab you and pull you along the journey too when your arms need a bit of a rest❤️💕💕Shi xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi Claire.. That's is exactly my thoughts because my cancer went from grade 2 to 3 and I keep thinking if any cells have escaped it will be growing somewhere else.. It seems we are experiencing the same worry and concerns.. My scan is on Monday 🤞 like I said before its just another thing to worry about.. My chemo starts on Wednesday 😕

Hugs San xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Aww San , its all very scary isn't it. I go from feeling really hopeful and positive to feeling like they aren't going to cure me . 

Did you have your scan ? Keeping everything crossed it's clear. 

I know they told me they removed everything they could see in surgery and chemo/ radio is a preventative but since they said grade 3 I've been absolutely terrified . Is it possible to fully recover from grade 3 ? All these things keep going around in my head. I never imagined I'd be in this situation !!

I'm still waiting to hear from my chemo team . I think all the waiting is so worrying thinking is it spreading fast while I'm waiting . I just want to feel normal again without the constant worry . 

Hope all your recent results come back clear San . Keeping everything crossed for you . 

Take care

Claire xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi Claire 

I would say that was very normal I often feel like that.. I do atm because this last week I've had a lot of lower back/pelvis (and backs of my legs).. The hospital physio rang me yesterday asking how I'm doing with my arm exercises? I mentioned my back pain.. I also went on to say how active I was before my diagnosis (I would reach 10,000 steps by 2pm and I worked to 9pm) doing a very active job to literally doing nothing.. She agreed with me saying it did sound like a movement problem.. She said she would have to upday my surgeon which I of cause agreed.. 24 hrs later he has arranged a CT bone scan for me for Monday morning 😖 obviously I'm now entertaining the thought of bone cancer!?!?! Just another hurdle I now have to jump

By the way my first chemo appointment is next Wednesday.. I feel like I'm just winging all these appointments 👍😂

 

Hugs San xxx

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

C d Lucy ❤️ Just be kind to yourself and do things that make you happy, don’t let it take your joy, it will try but don’t let it 👭 meltdowns are part of the journey, tears,  laughter, constipation, piles, hair from all over not needing an immac anymore (saves a fortune👍) step by step and day by day you will get through, break the chemo down into cycles rather than how ever many months, I had a post it up in my kitchen and ticked the bleepers off after each treatment, it kept me focused 🥊🥊🥊 and i was with the oct17 crazy gang on our train 💃🏻💃🏻🕺🕺💃🏻💃🏻 Through. And the steroids will have you bouncing off the wall 😁 boing boing boing you’ll be up all hours, just sleep when your body tells you too, it’s hard to stick to routine sleeping pattern, so just follow your own beat 👍 we each have our own and you find what works for you ❤️💕💕Shi xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Thank you Kip . It's obviously one of those days when every possibility is going through my head . 

Claire x

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

Hi Claire,  oh you poor thing, don't worry it's completely normal. The worry gremlin will always raise its head from time to time, it happens to us all and you've just been given a lot of information to digest recently.  I was the same, once treatment began I felt I was doing something positive and that helped too.  Your team will have planned the best treatment for you and we have to put our trust in them.  Keep talking to us and we'll hold you hand along the way.. At a safe distance obviously 😘

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi all hope you're all ok. 

San have you started your treatment yet ? 

I had my oncology appointment yesterday and they told me I'd be having 3 lots of EC and 3 lots of Braxzean. Then a break and 15 rounds of radio . I was ok yesterday but have suddenly had a meltdown today . I keep thinking I'm going to get it somewhere else . Is this normal ? 

Take care 

Claire xx

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

Hi everyone,

I told you Shi would keep you smiling..Wham perm is definitely it.

I can sympathise with the strange sensations post op, after my mastectomy i had all sorts of tingles, twangs, and phantom nipple too..still get that one occasionally but i was told as nerves settle etc it does hurt a bit.  It all eased over time though.

I agree with Shi over the hair loss,. Its definitely a tough thing but having control helps.  I cut my long hair short before chemo, took the chance to try a pixie cut for once,  then shaved the lot as it started to go.  Initial shock was hard but after a few days you just move on..  i was given a voucher towards a wig and it looked good, even my oncology nurse didn't spot it, and gave me a little chat about expecting hair loss.. she was shocked when i whipped it off..also gives you a good feeling if you meet those people who are looking at you and wondering and you scratch you head and jiggle the wig slightly..their faces!  I have embraced the new grey hair and the curls which did straighten out somewhat eventually..now 2 years on i have hair just above shoulders again.  I used to wash my bald head and the new hair with a shampoo bar from Lush called New supposed to help new hair growth..never gone back to normal shampoo again.

Sending hugs to you all especially those awaiting the  next step jn the journey

Kip

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi Claire,

I’m 48 so similar position about impending menopause! It’s such a joy to be female 🤣

I’m now five weeks after surgery. This week the numbness has really improved. The downside is I feel so much more! I hope Monday goes well and you get all the answers you need. 
best wishes

Mel xx 

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi Shnug,

the surgeon said had he known the size and grade before surgery it would have been done then so I think it was just for completion. The radiotherapy is because I had lumpectomy rather than mastectomy. I’ll be on tamoxifen for ten years after radiotherapy.  
best wishes 

Mel xx 

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

Think 80’s wham perm san 😁Chemo curls a go go 💃🏻💃🏻🕺🕺💃🏻💃🏻💕💕Shi xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Thanks Shi... What are chemo curls? When it grows back I think I will embrace my gray.. I wanted to do that for a long time now 😊

San xx

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

San ❤️ You don’t be ashamed of anything lovely ❤️ It’s so personal and the rollercoaster of emotions are part of the journey ❤️Hold tight and ride them out ❤️So many of us have lost our rapunzel tresses and before Covid-19 you could donate your hair to little princes trust who make wigs for children, not sure if they are accepting hair at the minute though. Try some off amazon and luvyababes have a great selection now too (not just fancy dress ones) ❤️ It is a bit like having a kinder surprise when it starts to grow back you don’t know what colour it will be or if it’ll be straight of if you get the chemo curls 😁 you’ll be better at styling all that and rocking your look ❤️👍💕💕Shi xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Thanks shi ❤️ I'm thinking I will probably shave it at the beginning once I find a nice 'realistic' looking wig that suits me.. Being a hairdresser by trade I do have a critical eye but once I find one perfect for me (I'm sorry I'm not a head scarf type of person maybe because I was a hairdresser I don't know? ) I will shave it all off and yes it's a control thing definitely.. I will decide when I lose my hair not a drug 👌 once I've done that I know I will be able to face the rest of it.. Sadly for me my hair or the loss of it is my biggest challenge which I'm ashamed to admit

San xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

  • Thanks San, I really haven't had to take many painkillers but I agree the strange feeling /pain now is worse than the beginning. Like you say most probably everything trying to get back to some kind of normal . I've found getting in the shower and just standing under the water is helping . 
  • Claire
  • Xxx
Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

Sorry gremlins out that was gi Jane and sinead O’Connor 🤣😂🤣😂

Highlighted
Community Champion
Community Champion

Re: Diagnosed 2 days ago.. Scared

San ❤️ Sorry to hear you won’t be able to have cold cap. It can be difficult to loose hair, but you can turn it into a positive ❤️ When you are ready you could shave it to a one or 2 with the clippers, it does give you a feeling of being back in control as crazy as that sounds ❤️ Get some makeup on 1st, I forgot and ended up looking like action man, no go Jane Demi Moore or elfin sunward O’Connor 🙄 was better once face was on 👍 get silk pillowcase gentler on head 👍 I also used the beauty despite cancer scalp care kit, went with ordering crazy, coloured bobs, tinsel wigs, the lot 🤪 I’ve seen people in long unicorn ones too 👍 I’ve also seen people not bother with hat or wig or scarce and be so stunning they take your breath away. Do what’s right for you and when you look into your eyes in the mirror it’s still you, you are always there ❤️ Remember that 👍😘💕💕Shi xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Claire.. I meant to say I'm about 3 and a half weeks post op.. And I'm getting pins and needles and more discomfort as the numbness improves.. I'm also getting pain in my nipple which isn't there 😂 I'm probably in more pain or discomfort compared to first having my operation I'm guessing it's because my nerves are repairing hence the pain?

San xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Aww San , I wondered why you hadn't been on here . Try to keep positive, hard I know in these very strange times. I'm not sure I could stand the cold cap anyway , I think it would give me a crazy headache . 

Once I've spoken to my oncologist I'll have more details I'm sure . I'm now 2 weeks post surgery and feel well in myself , just the funny feelings in my arm I'm unsure of .  

I know what you mean about not knowing what all these abbreviations mean . I'm starting to get a bit baffled and don't always like to ask or I forget 😂. Chemo seems so daunting doesn't it but it's not forever and it's obviously the best treatment for us . 

Xx 

Claire 

 

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Also... I've had a few bad days because I've been told that during the covid crisis my hospital won't be offering the cold capping treatment which if I'm honest left me devastated and so upset... I just have to deal with it I suppose 

San xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Hi ladies... Here is my update..

30 mm grade 3 (was 2) ductal carcinoma... nodes 11 removed 2 cancerous

ER 8/8 HER2 Negative ((btw I have no idea what that means?)) 

I'm having two types of chemo... First lot will be once a week for nine weeks then the second lot.. Once a fortnight for 2 months.. Then radiotherapy and hormonal therapy (a tablet I think) also they said they will give me something for my bones every 6 months for 3 years... I know I sound vague but since I've been diagnosed with breast cancer I haven't read anything about it... I discovered I was a 'dont want to know type person* probably because I'm scared to read something I'd rather not know if that makes sense

 

San xx

Highlighted
Member

Re: Diagnosed 2 days ago.. Scared

Sorry to butt in, just had to say I haven’t had any scans either, apart from ultrasound at diagnosis and planning ct for rads, I had 3 of 4 lymph nodes with macro & micro mets found at snlb that didn’t show on the ultrasound, then chemo and rads now on exemestane ha ing switched from anastrozole. 
I thought it was cos I’m a private patient, all my nhs mates have had mri, ct and dexa scan routinely.  
it really does bother me when I see others getting them and I’m denied them as it’s not deemed necessary. I haven’t even had a blood test since I finished chemo last Oct, the nurse who gave me my zometa yesterday asked me why as I should have them before each infusion!!!! 
news to me I told her!!! 
im grade 2 micropapillary er & pr+ her2 neg