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Mishy18
Member
since
29-04-2017
1937
Posts
220
Hugs
2 weeks ago
1 Hug
Shelly just wanted to semd you a massive virtual hug I hope you are OK and think your onc has a poor bedside manner to say the least I just wanted to reach out and let you know that you are not alone on here take care Shelly 🙏
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4 weeks ago
4 Hugs
Here bloody here I'm absolutely dreading think patronising pink was of celebs telling us to check our boobs etc there's never a mention of SBC or the fact that we are 30/40% living with this awful disease even after early stages of primary breast cancer its like we are periahs and our voices are not heard more reaseach is needed urgently to find out how and why this is still happening to us never mind glamourising breast cancer with silly pink bras tutus and other money profit making nonsense going to the big stores then what's left over going into already massively funded research for prevention early stage STAGE 4 needs more thanks Walsh for bringing this up 👍
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08-09-2019
02:31
Thanks Ramade hopefully when I have my follow up app with radio onc he will start to reduce them as I have been told I need a tailing off period anyway I got up earlier this morning tried taking an hour earlier then will do the same tomorrow I've been told its the Dexa that's used when it's the brain so don't think they will change them x
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07-09-2019
05:13
1 Hug
Hi was wondering if anyone has any tips which might help me I'm taking Dexmethasone following my diagnosis of brain mets was prescribed 8 mgs daily at 1st increased to 16 then currently back to 8 as I have just completed whole brain therapy 10 days ago I take them at 9am so nice and early but the fatigue from treatment is quite bad then I wake in night about 3/4 am and can't get back to sleep which is having a knock on effect during day anyone else's tips would be very welcome thanks 😊
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07-09-2019
05:07
ANNIE hi that's great advice I know what you mean about poor drug tolerance I'm struggling on the dexmethasone in combo with my recent treatment but I'm making myself engage in some exercise just a slow pace walk atm and thinking of joining the Tai chi class at Maggies is that the Tai chi you attend you can fill me in when I see you next xxxx
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26-08-2019
07:52
Hi jules how are you doing I have my last whole brain session tommorow like you 5 sessions I cant beleive how bloody tired/low energy I am experiencing they have explained it can last weeks ithe steriods are playing havoc on my tummy and The headaches are kicking in now!!! I was wondering do you suffer neuro pain at all with your mets I am and wondering if it will start to settle down hopefully you being a little further ahead should be feeling a little better I hope Low energy is rubbish Im so used to being a live wire and missing my long walks terribly atm Hopefully this period of time is a bloody bg blip that will fade and allow me to engage in life as a fully participating member Its not getting the better of me yet Have a lovely day everyone and 🤗 to you all x
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20-08-2019
06:27
1 Hug
Sending you 🤗 I do know someone who had palbo fail but is doing well now on cape so keep that thought and I hope you get good results from it 💪
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19-08-2019
09:11
There is a lovely sbc group at Maggies Newcastle who meet once a month if that is any help x
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16-07-2019
05:25
Feeling scared is a horrible feeling I know only too well my anxiety has given me some terrible symptoms resulting in a trip to A and E try not to let it take a hold like I have a treatment plan will definately make you feel better take confidence from some of they others on the forum who are doing really well my situation I have discovered is a little unusual in I am on a plan of watchful waiting since end of Jan this year when diagnosed it really has impacted my physcological health my onc has explained this of part of my plan and when he feels time is right I will start I have had some changes during this period of time I hope everything goes well for everyone x
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05-07-2019
09:32
1 Hug
oops Annie something went wrong there 😨 was meant to read I hope everything is ok with your hubby and we have missed you at the group x
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05-07-2019
09:27
1 Hug
Hi Annie weve missed you hope everything is ok with yourprofile and was wondering if your hubby Karen has been brill and I have had a couple of physcology apps which have helped massively my results showed some progression my medistanial nodes are swollen and I have a couple of new nodules in lungs Onco says not catastrophic and will be starting treatment soon he is fully aware of the anxiety watching / waiting causes and has explained why this was decided for me I will have a natter with you when I see you but thankyou Annie 🖒
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01-07-2019
11:16
Sorry for the late reply been in a funny headspace these last few weeks the ct confirmed lymphs in chest wall affected and a couple of new nodes im waiting for a sample test result to determine my treatment plan im very nervous Good luck on taxol im sure you will be ok on it keeping everything crossed for us xx
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28-06-2019
11:35
i also agree with if you dont ask you dont get its very easy to get lost in the system i have had to be the 'pest' a few times but its so important we look out for ourselves I always take a list and give the secretary a nudge when needed I have made it clear that i will always speak up when needed and wouldnt be afraid to ask for a second opinion although im happy with my onco Im pleased you have had some answers x
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24-06-2019
06:49
Hi just wanted to reach out, Im sorry you have a secondry diagnosis it seems a lifetime waiting for appoinments etc its a scary time for us in the meantime I hope you are getting plenty of support have you a Maggies centre as they have excellant support groups and counselling i was diagnosed the end of Jan this year have not had any treatments yet but under very close watching will be starting in the near future I have found being able to attend Maggies has helped me massively we are all different as treatments are different so try not to worry too much, once you have an oncology app things will be clearer Take care x
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20-06-2019
02:25
1 Hug
Thanks for the replies looks like il be starting treatments shortly waiting for some tests to confirm i can have a certain drug then its good to go x
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13-06-2019
11:35
1 Hug
Hi everyone i was diagnosed with sbc TN jan 24th this year with nodules in both lungs an incidental finding following a cxr for pain in ribs they were very small 5 in all but 2 of them not 100% as too small to size my onc decided not to biopsy as the tn rarely changes status and the best action was watch and wait as being Tn can only have chemo and they were low volume i had a stable scan in April but last onc app 23rd may i had a cxr which has shown possible nodes involved my onc said i need scan had this last tues see onc for results next thurs!!!!! Im absolutely terrified as also had brain scanned as been experiencing frequent headaches whibh i know could be through stress I literally feel like they are gambling with my life here 5 months i have had to endure this i have lost alot of weight again i think stress related i know having no treatment should be a bonus but im struggling massively with watchful waiting my mind is telling me are they not telling me something here because whenever i suggest something i get told not an option My onc has a very good reputation and im not suggesting they are not doing right by me i just feel so afraid that this could potentially go so wrong If any of you have been through similar i would love to here about it x
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04-06-2019
12:14
1 Hug
Hello lovely ladies been a while hope you are all welj Shi has passed on your messages Jencat thanks😊 Buddy hope yov are getting along ok too Im chugging alng ok atm apart frm the odd meltdown 😨 I def have noticed how bad tempered i can be these days 😠😂 my OH thinks im a narky git Apart from the bc stuff everything is great son graduating july daughter doing well at work and my grandaughter is amazing a proper little headstrong girl 🖒 im also doing loads of lovely stuff i have a jam packed summer packed 😊 Thanks for all the 👭 enjoy summer ladies 😙
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28-05-2019
10:47
2 Hugs
Hi Shi thanks for asking wasnt great xray showed possible chest wall lymphs have cancer now waiting for ct from head to pelvis 😔 if its confirmed it will need sorting asap i just hope its something else im dreading incase anything else shows up ive lost weight with all the worry its horrible waiting all the time its very stressful the current wait for ct is 3 weeks tbh im sick of having to wait ill be losing my temper soon its my life im not a bloody statistic sos for the rant Shi but all this waiting /worrying is affecting me mentally im sure they think we are bloody robots 😠 Aside from that im off to Seahouse for a girlie break fri and enjoying spending time with my girls went suit shopping for liams graduation last exam thurs then ceremony july Hope you ladies are doing well and as always sending you all 💪❤👭
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28-05-2019
12:35
Changes on my xray on thurs looking like chest wall nodes have cancer waiting for ct looks like il be ptarting treatment soon keep you posted x
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27-05-2019
12:16
1 Hug
Im Tn diagnosed this jan with lung mets been n watchful waiting since as my onc was hoping if they did nothing much i could possibly benefit from a trial all has been looking good till thursday xray for app showing what looks like chest wall lymphs now affected waiting for ct apparently taking 3 weeks still no treatment anxiety levels off the scale what a shower of **bleep** this Tn is
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