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July 2017

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Community Champion

Re: July 2017

Mishy - sorry to hear your news -what a ******** !!!! I hope you know what they are going to do soon so you can at least get your head around it a bit better .Jill xx

Community Champion

Re: July 2017

Hi Mishy, glad you are doing well but watchful worrying (as I call it) keeps the anxiety monters in tow.  Shi asked me to post you this link for a clinical trial:  https://ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialNumber=NCT03424005

Sending hugs.

Nikki. xx

Shi Community Champion
Community Champion

Re: July 2017

Mishy ❤️❤️❤️😘😘❤️❤️❤️😘😘😘you are always in my thoughts beautiful, glad your onc is keeping close eye on you. Hope you’ve been having lots and lots of hugs with your Ella Bella 😘😘😘 always 👭👭👭for you and bit of we go together from the musical grease on the jukebox for you 🤪🤪🤪what bappa lulls a what bam boo 🤪🤪🤪love you 💕💕💕✨✨✨✨Shi xx

Member

Re: July 2017

Shi thanks for your support and  👭💖 

Member

Re: July 2017

Hi everyone just thought I'd let you know that I am doing OK not on a treatment plan as yet on watchful waiting my onc has arranged another ct scan for end of this month with review on 4th April so still feeling in no mans  land atm

I hope everyone is well thank you so much for the well wishes xxx 💖👭

Shi Community Champion
Community Champion

Re: July 2017

❤️

Shi Community Champion
Community Champion

Re: July 2017

Mishy sending you ❤️❤️❤️Darling and 👭👭👭hope your chest infection has cleared and they can get you a plan in place 😘😘hope you’ve had some lovely time with Ella Bella in this glorious 🌞 😘😘💕💕✨✨Shi xx

Member

Re: July 2017

Glad to hear from you Mishy, we’re all rooting for you. Seems so unkind to leave you wanting answers and a plan of action for so long but good to hear that you are feeling better physically and that you will have some lovely family time this week. 💕to you from the October 17 crew xx
Member

Re: July 2017

That is a good idea, take a small break form instagram and snapchat. If you're really strugling of doing that, use a special tool which allows to control the content and time you're spending in a social media. Here is a link to their homepage

Shi Community Champion
Community Champion

Re: July 2017

Mishy and ftf 👩‍🎨👩‍🎨👩‍🎨👩‍🎨🤺🤺🤺💣💣💣💣 mishy, your dads guarding you and Ella earth angel is your light. As I’m typing this the cancer research Uk ad has just been on saying together we will beat cancer, now there’s a sign if ever there was one 🙏💕💕✨✨✨Shi xx

Member

Re: July 2017

Hi Angela thanks for your words of wisdom 😊 yes you and me both with accident findings that's what's pissing me off the most that there weren't any red flag symptoms for us how would we have known?

Anyway woke up today feeling more determined and positive I've got one shot at this and I'm going to bloody well get it right now more yes sir no sir thanks very much sir its my life and I'm going to leave no stone unturned 👍sending you all 👭💖

Member

Re: July 2017

I totally know what you’re going though Michelle. I’m going through it too. 🙃

We have to have hope. I’m here if you need anyone to talk to. DM me on twitter any time. 

We honestly don’t know what’s on the horizon with treatments. I’ve got a gut feeling we’re going to be here for a long while yet. 

Xxxxx 😘😘


@Mishy18 wrote:

Shi thank you for the 💖 I logged on tonight to send 💖 to you all

Still don't think I'm getting used to my sbc diagnosis my chest infection is gone now so feeling like I was before no symptoms to even suggest there were mets in my lungs trust me to have them in both I don't see my onc for another 2 weeks and feeling really 😳 abandoned and left to get on with it of course my mind keeps going to terrible places and I have to keep reminding myself to snap out of it it just feels so different this time around it's the kind of feeling that's very hard to describe like I'm having a nightmare and it's not really real sorry for the offloading ladies probably not what you all want to hear especially on valentines day just want to have my app so I can get some clarity and know I'm not being just hung out to dry 😨😨😨

My onc is very good at his job but I feel like I was my own doctor and if it wasn't for my gut feeling where would I be when the red flag symptoms finally appeared probably with a lot less treatment options that's for sure  it just makes me mad that we are not offered some time of screening after treatment ends

On a much lighter and brighter note my little angel Ella came today with my valentine made at nursery she's is sleeping over on Monday which I can't wait for cuddles and bedtime stories it's half term next week so will be spending time with her and Holly doing lots of lovely things 💖


 

Member

Re: July 2017

Shi thank you for the 💖 I logged on tonight to send 💖 to you all

Still don't think I'm getting used to my sbc diagnosis my chest infection is gone now so feeling like I was before no symptoms to even suggest there were mets in my lungs trust me to have them in both I don't see my onc for another 2 weeks and feeling really 😳 abandoned and left to get on with it of course my mind keeps going to terrible places and I have to keep reminding myself to snap out of it it just feels so different this time around it's the kind of feeling that's very hard to describe like I'm having a nightmare and it's not really real sorry for the offloading ladies probably not what you all want to hear especially on valentines day just want to have my app so I can get some clarity and know I'm not being just hung out to dry 😨😨😨

My onc is very good at his job but I feel like I was my own doctor and if it wasn't for my gut feeling where would I be when the red flag symptoms finally appeared probably with a lot less treatment options that's for sure  it just makes me mad that we are not offered some time of screening after treatment ends

On a much lighter and brighter note my little angel Ella came today with my valentine made at nursery she's is sleeping over on Monday which I can't wait for cuddles and bedtime stories it's half term next week so will be spending time with her and Holly doing lots of lovely things 💖

Shi Community Champion
Community Champion

Re: July 2017

Mishy ❤️❤️❤️Sending you ❤️❤️❤️💕💕😘✨✨Shi xx

Member

Re: July 2017

Sorry to hear that Carole. I can imagine your disappointment. I’m sure your anxiety levels have been pretty high too. Hopefully it won’t be too long before they can fit you in. 🙏🙏🙏🤞🤞🤞 xxx

Member

Re: July 2017

I’ve had a call today from the hospital to cancel my Diep tomorrow.  They’ve got a trauma case that can’t wait.  I’m devastated 😥

Member

Re: July 2017

Hi Michelle. Four weeks seems like a long time to have to wait. 😳 I don’t think they understand the torture of not knowing what’s going on. Makes me mad. It’s like cruel torture making us wait for answers. Our brains manage to come up with all sorts of terrors when we’re in no mans land. Keep busy. 

Keswick was lovely as usual. Xxx 💪

hoping everyone else is doing well. Xxx

Shi Community Champion
Community Champion

Re: July 2017

😘😘😘mishy 👭👭👭our gold hot pant have magic unicorn elastic mishy ✨✨✨✨glad your maggies are being a great support mishy while you are waiting for plan ❤️❤️focus on the light of Ella Bella ✨✨✨✨she is your light mishy ✨✨✨✨love you 💕💕✨✨✨Shi xx

Member

Re: July 2017

Angela I'm over the moon for you absolutely brilliant news enjoy Keswick and don't forget to make the wish 👍👭😚

Ladies thanks for all your kindness and support I'm still very 😳 waiting in no man's land till my onc appointment on 28th 4 more weeks of not knowing what lies ahead 😳 thank God for Maggies I'm seeing a counselling lady they arranged it when I got diagnosis to support me in the meantime and they have asked me to attend the sbc support group on Wed as they feel meeting other people in the same position might be beneficial to me but for now I'm just about managing to not let the dark thoughts take over

Oct girls thanks for the hotpants need all the help I can get I know things will be better when I digest it all properly and have an actual plan in place but for now sending you all my 💖

Shi Community Champion
Community Champion

Re: July 2017

Hi ftf, enjoy Keswick and go to magic wishing well and have a coin in there for everyone 😘😘enjoy being in the mountains 🏔 😘😘💕💕✨✨Shi xx

Member

Re: July 2017

Thanks ladies. 😀 it’s such a relief. First thing that’s worked since diagnosis. 😳 was starting to think nothing would. Phew.

In Keswick now to brush off the fear and celebrate the good news while it’s here. X 

Member

Re: July 2017

Great news Angela x

Shi Community Champion
Community Champion

Re: July 2017

FTf 👍👍👍😁😁😁that’s great news darling 😘😘😘 pleased you are responding to cape ❤️❤️Keep 💪🏻💪🏻💪🏻💪🏻As I know you will and 👭👭👭👭grab hold of mishy18 gold hot pants us oct17 girlies she look after are holiding onto her tight 👭👭👭👭Tatiana sending you big hugs and love too and all the beautiful amazing July girls ❤️❤️You 💕💕✨✨✨shi xx

Member

Re: July 2017

Just had results of first ct since starting cape. I’m stable Mable with some shrinkage. 💃💃💃💃🥂🥂🥂😀😀😀

hope everyone else is doing well? Xxx

Member

Re: July 2017

Our thoughts are with you and we will be here to support you when you’re ready. Hope that your infection clears quickly and that you get a plan as soon as possible xx
Shi Community Champion
Community Champion

Re: July 2017

Mishy 😘😘😘❤️❤️❤️👭👭👭we’re here always 😘😘😘💕💕💕✨✨✨Shi xx
Member

Re: July 2017

Mishy, lovely to hear from you xx It must be such a shock for you and your family and quite understandable that you need some time away from here to get your head around it all and to be with your family. Just want you to know that even although you won't be on the forum for a while we will all be thinking of you and sending our love xx

Member

Re: July 2017

Ladies thank you all so much for your support I will definitely be asking those questions regarding tumor profile etc I can't have any treatment yet as I have a chest infection and virus waiting for it to clear on 28th Feb I will have my treatment plan ready to get started I will be asking more questions as I wasn't prepared for this it happened so fast such a shock as I know when I went to the gp I wasn't showing any signs of anything after vitals were checked oxygen levels chest sound I pushed for bloods and chest xray the area of concern which led to the ct was my rib which was just scarring from the rads nobody my onc inc was expecting this everywhere else scanned was clear thank Goodness but I am reeling right now a few weeks back I was just someone who was getting over bc now I'm someone who will live the rest of my life with sbc it's a scary place my kids are in shock devastated I'm trying so hard to reasurre them but I haven't got all the answers
You lovely ladies are the best thanks so much for your support xx I'm going to be having some time out so I can get my head around this 💖👭
Member

Re: July 2017

Dear Mishy,

I am thinking if you need a second opinion from another radiologist or other professionals.

The thought came from the various interpretion/comment from 3 different radiologistt for my lung shadow appeared on  3 CT scans which were followed by a chest x-ray, for which  no shadow was found in my lung.

The 1st scan was referred by my family doctor who was also a very senior doctor in the emergency room. He let me to look at the original copy of CT scan result with radiologist comment. It was commented the leison on sternum consistent with metastasis. The 2.5 cm neoplastic nature tissue in my lung suspicious of  cancer. No plural fluid was found. But, my family doctor said the sternum leison should be cancer but he didn't know what was that in the lung.

The 2nd scan which was referred by my previous oncologist and done before bone biopsy. She is green in the field.She did not let me to look at the CT scan result (probably don't want to touch a patient (me) nerve. She said cancer  from sternum spreaded to lung. I challenged her how she knew w/o any biopsy and she said they follow pathologist and radiologist comment She could only  give my treatment plan after bone biopsy came out then she could only know what type of BC this time (triple positive, same to  my first diagnosis or changed)

The 3rd scan which was referred by my current oncologist and done after 4th session chemo. He has 10+ years experience and is also a professor. He sad the image on my lung is a scar from tuberculosis. He asked if I had this disease when I was young.

Different person has different interpretation. To me, if any doubt ,get a second opinion does not loose anything on the baseline treatment should not be postponed. We are racing with a bomb.

PS.

i was not offered a lung biopsy though requested.

I am touching on  the wood, no obvious lung symptom except several times breathlessness  at the beginning when feeling sick before any testing/scan.

  

 

 

Community Champion

Re: July 2017

Mishy

 

I have only just seen your post, oh my darling I am so sorry and just wanted to send you all my love, hugs and positive vibes. 

 

Helena xxxxx

Member

Re: July 2017

Sending you all love and strength Mishy xxx 🤗 xxx
Member

Re: July 2017

Dear Mishy I am so sorry to hear about your results I am sending all my positive thoughts and energy in your direction and hope that you get the very best treatment 💕💕 so glad they caught it early.
I think someone else mentioned it but do try to push to get the genetics profile of your mets if you can. XXX Ruth
Member

Re: July 2017

MIshy....so sorry to hear your news....sending you lots of love & positive vibes...early diagnosis has gotta be a good thing 😘😘

Member

Re: July 2017

Mishy I am at a loss for words and can just remember you popping into our October thread with love and positivity and words of wisdom and my stupid phone keep calling you mushy
My darling please know you have the biggest group of supporters possible on you side sending love and hugs xxxxx
Member

Re: July 2017

Hi Mishy,

I'm so sorry to hear your news  and sending you love and hugs xx I'm thinking of you xx

Member

Re: July 2017

Hi Mishy,

So sorry to hear your news but at least they've caught it early and you've now had extensive scans. I don't know why they don't do that prior to treatment, I guess it's a cost thing 🙄

sending ❤️ and hugs, stay 💪💪lovely lady, we're all thinking of you and you can vent to us whenever you need to 😘
Member

Re: July 2017

So sorry to hear your news Mishy I really don't know what to say other than we are all here for you. Stay strong lovely lady 💪💪❤❤
Member

Re: July 2017

Hi Mishy.
Sorry to hear your news :-(
Don't forget we are all here for you lovely.
Cassie xx
Member

Re: July 2017

Mishy all I can say is everyone is here for you. Love and strength to you ❤️
Member

Re: July 2017

Mishy, hugs darling. Don't know what to say .xxx
Shi Community Champion
Community Champion

Re: July 2017

Mishy 😘😘😘sorry to hear your news but thank God they’ve found at this early stage 💪💪💪it’s your dad for sure 😘😘😘👭👭👭love you and always here 👭👭👭💕💕💕✨✨✨Shi xx
Member

Re: July 2017

So sorry to hear this Michelle.  I can only imagine how you must be feeling as I was being tested for exactly the same thing over Christmas.  Are they sure at this stage, with them being so small, that they are actually mets?  I had a lung nodule at the start on CT, but it disappeared with chemo, so I don’t  know if it was a met or just a nodule.  My sister, who has had two BCs and colon, gone to st 4 liver, has about 5 lung nodules but they haven’t changed in 4 years, so they think they are not mets. She has just had her check ups today and is clear on cancer except for 1 8mm tumour in her liver.  She was on palliative chemo 3 1/2 years ago but has had 3 liver ops since then and is feeling great now. 

If it is mets at least they’ve found it really early xx

Member

Re: July 2017

Ahhh Michelle. I’m so sorry to hear this. 😢 I wish you didn’t have to join us. Totally devastated for you. 😘😘😘😘
I’m here for you. There are many treatments for you maybe even surgery with so few. Get yourself on the prospect north east trial. Don’t take no for an answer. Your tumour needs profiling to give you more options.
DM me anytime. We’ll meet up for that coffee soon. Hold tight. 🙏😘😘😘😘😘
Member

Re: July 2017

Hi ladies Angela I'm pleased to hear that you are happy with your onc and you have a good team behind you
I'm finding this really difficult so I'm just going to say it had a call Tues evening to go to see my onc yesterday morning my ct scan through a curve ball basically picked up lung mets which were not what was showing on the xrays that turned out to be scarring from rads he explained there are about 5 altogether 2 in one side 3 in the other so small he said its shocking they found them I gave a chest infection which started on Monday so I have to get rid of it before they can start any treatment (not a symptom of the nodules) apparently they wouldn't have started to cause symptomatic problems for about 10 months which would have been a much worse scenario
Just going to say this I have always been a believer in going with your gut I went with mine I had no infection or symptoms related to this at all but felt a feeling in my gut think it might have been my dad pushing me to go 😳😳 Angela I'm not changing my status on twitter about it as my kids are on there we are not ready for that yet so if I tweet silliness as I do you know why
just trying to process this news told my little family yesterday ladies for now 👭👭👭👭💖 💖
Member

Re: July 2017

Hi Michelle.
I’ve never had any treatment at Sunderland. I opted for Gateshead as that’s where my bc nurse is. I only have clinical trial and genetic appointments at the freeman. I’m waiting for the results of more genetic tests so I’m hoping it’s not too long before I get an appointment for that. 🤞
I know what you mean about scans.

I’ve still got the same onco. He’s very good and I like and trust him. It won’t stop me getting a second opinion at some point if I think I need one though.
I’m sure your scan results will be good. It’s absolutely impossible not to let it worry you though. Brain goes into overdrive doesn’t it. Xxx
Member

Re: July 2017

Hi Angela keeping everything crossed for you for the 1st are a your treatments now at Freeman or still Sunderland did you change your onc??? Scanxiety is a real actual thing who would have thought that the scan was very quick it took longer to out in the cannula!!! They did thorax and abdomen with liver the full lot which brings me back to the burning question I have always had from diagnosis with other cancers you have full body scans before and after treatment and after lots of reading here and in other places that most mets, SBC seems to be not actually a recurring disease rather than residual cells from primary surely if the scans were done at the time treatment could be targeted more specifically obviously I'm no expert and they obviously do this for a reason but it's still always something I questioned especially as now I'm getting the scans anyway!!!!
I hope everything goes well with this one 👭 for the 1st Angela got your hand virtually 👭
Tatanya if you are reading I hope your treatments are continuing to treat you kindly Carole hope you are good following your period of worrying Kimi I hope you get a good discount or even better free dental tre it's so expensive isn't it!!!!
Missa I don't know if you still come here even to read but if you do you are in my thoughts too lovely July ladies 💖👭
Member

Re: July 2017

Morning ladies.

Good to hear from you Kimi. Sorry to hear about the chair incident. 😳😳
Michelle, hope your ct went well. Fancy that a Sunday appointment. I thought I was unlucky getting a Monday night. My results are due on the 1st. 😳😳😳 cra**ing myself.

Hope everyone is doing well. Xxx
Member

Re: July 2017

Hello lovely ladies have you all had snow yet we have it looks lovely but it's starting to freeze so I can't get out and about incase I fall 😨 before I get surgery still on the list but my symptoms seem to be stable just a waiting game took advantage this morning before it freezes over and had a lovely walk got my ct on Sunday morning then onc 4th with the results of that fingers crossed I'm going to take my onc a hairband for a joke!!! I'm going to pop in before hand to Maggies as they are having a mindfulness drop in might come in handy!!!!!!!!
Anyway enough about me! Kimi lovely to hear from you and sending you all big hugs and positive vibes
👭👭👭
Shi Community Champion
Community Champion

Re: July 2017

Hi kimi 😘😘fantastic news about your clear X-ray 👍👍hope you are in the mend after your tumble is so easy to loose balance from a chair, hope work have now got you a set of small steps? Is it me or is January flying? I’ve never known a January whizzz by like this one. Sending big ❤️❤️❤️❤️❤️And lots of ✨✨✨✨✨to you all 👭👭👭👭😘😘💕💕💕✨✨✨Shi xx
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Member

Re: July 2017

Hi Lovely Ladies and Happy New Year.

Sounds as though we all had a good Christmas, can’t believe the amount of work it all took and now it’s all done, decs are back in their boxes and back in the loft, does make the house look tidy eh?

So pleased with the good news stories, long may it continue, Angela, you are amazing, so pleased your new meds’ are working and with more in the arsenal, go get ‘em girl. & Mishy & Carole, thank goodness results are good, although all this worry does nothing for our wellbeing. Hope you’re recuperating well Helena, and Shi, I’m with you next Christmas, going with the easy version, too much work for it to be demolished in minutes! My x-ray came back clear, still have the discomfort under my ribs, but reading about your experiences think I’ll have to put it down to rad damage, just wish there was more aftercare in my area.

We had a couple of days in the New Forest just before New Year, lovely seeing the ponies and donkeys roaming free, Mark, my OH now wants to live there! 

Back at work now, managed to fall backwards off a chair shutting the waiting room window yesterday, hurt my bum (it’s got plenty of padding!) and banged my head and worst of all my jaw hurts, must have clenched my teeth, suppose I work in the right place (dentists) if I need something done. I find I still get quite tired, thank goodness it’s only three days, but it does give me some normality, hope I don’t always have to rely on that, don’t want to work forever!

Anyway, onwards and upwards Lovely Ladies, look after yourselves, as usual thank you all for being here, good luck with appointments etc, holding hands very tightly still.

 

Love Kim xxxx