Breast Cancer Now Forum

Hello ladies 👋 sorry it’s been a while since I caught up on here. Carine I’m sorry to hear you’ve had some progression. Hope your appt on 6th May was helpful. Judy what a disappointment it must’ve of been for you all with the wedding being cancelled, let’s hope it’s not long before it can all be rebooked. My eldest son got engaged on Valentine’s Day, she asked him, it being a Leap Year, he said “yes” Hopefully a wedding next year 😀 . Well this year has been very eventful for me, I asked for my scan to be done in January and to include a brain scan as I was feeling very odd and wobbly and sight peripherally in right eye was getting bad. The results were what I suspected that I had a brain met. Lucky for me it was a single one and in my occipital lobe so hence the vision and wobbles etc. So on 2nd March I went into Wessex Neurology Centre and had brain surgery to remove it. I feel so fortunate they could do this.  In April I had five sessions of stereotactic radiotherapy also at Southampton. Most of the brain tumour symptoms went very quickly after surgery and then I realised how long I’d been “going downhill” but fairly gradually since September so until things got very bad end of December I didn’t twig (only had a couple of headaches in Sept/Oct).  My sight in right eye is still affected and I’ve been told it prob won’t get any better now but I’m ok with that as I’m still here 🙏🏼 . After radiotherapy I felt pretty rough, all symptoms came back, but was told by Neuros this was normal. Anyway now at last I’m feeling much, much better again.... hurrah 😀   I will get three monthly brain scans now. I wish it was policy that all stage four ladies got a brain scan. My other mets were all stable so I’m still on Tras and Pert. Although I learnt that the molecules in these drugs are too big to pass the blood brain divide, hence getting a brain met. Kadcyla can get through a little better but my Onc said he didn’t want to go down that route yet as everything else was quiet, we need to keep something in reserve. Meanwhile I’ve been hearing good things about a drug called Tucatinib which has small molecules.  Something I’m going to ask my Onc about adding to my drugs (it looks like it’s tablet and given with Trastuzumab.  I’d be up for a zoom or a WhatsApp call if everyone else is.  Missing everyone, saw Judy briefly at secondary bc meeting at QAH before my op and we all went into lockdown. (Judy: what a great secondary bc nurse Ellie is, she’s been fantastic to me.) Love to you all keep well  Julia Xx  PS sorry this is such a long post 🙊 X  ... View more

Hi hi  very sorry for your loss Helen, love to you all. xx Julia  ... View more

Hi ladies  hope you had a good meet up, I missed you all.  Dates I can do next time are 18th Feb, 20th, 25th (but those aren’t Wednesdays) and 26th Feb, 11th March. I have my scan results in a couple of weeks. Hope you are all well with not too many SEs. Look forward to seeing you all soon. Julia x    ... View more

Hi ladies I’ve made a right old mess up on my dates next week 😟 my other appointment I thought was Wednesday morning is actually the afternoon and Thursday one is in the morning. I’m so sorry I’ll have to miss our meet up this time but will look forward to the next one.  love to all xx Julia  ... View more

See you there ladies. Have a good weekend  Julia x  ... View more

Happy new year everyone. Hope you all had a lovely time with family and friends. My first Christmas as a grandma was wonderful . I can make either of those dates if we met in Portsmouth as I have appts late morning. I’m  looking forward to seeing you all again and the meeting ladies. love Julia X  ... View more

Hi all my exciting news is I am a Grandma 🎉 Little baby girl born on 27th November, she’s absolutely gorgeous and we are so thrilled. Her name is Lottie Rose.  I won’t be able to make the 11th Dec meet up unfortunately but hopefully will be at the next one.   Have a wonderful wedding tomorrow (well “today” in half an hour 😃 ) Carine and Phi I Hope the sun is shining for you both. Have a fabulous day.   look forward to meeting you Elizabeth in the New Year, good luck with the move.   love to all Julia          ... View more

Me too, see you all tomorrow. 😊 ✨   ... View more

Hello all That’s all good for me.  Looking forward to seeing you all and anyone else who might like to join us. love Julia x  ... View more

Sorry Helen I’ve just seen your message below as my page hadn’t updated when I wrote my last post tonight. Shall we say the 30th October then....usual place or if you have any other preferred place.  Hope you see this too Judy and Helen.  love Julia x   ... View more

Hi Carine  lovely to hear from you 😊 and congratulations such wonderful news ✨ 😀 . How exciting, look forward to hearing the wedding plans.  I’m happy to do 30th October, hopefully the other ladies will be along to confirm too. see you soon. Julia X  ... View more

Hello everyone hope you are all doing well and had a good summer.  Its been a while since we last met up, would be lovely to catch up soon. If I put some dates I can do hopefully we can arrange something; in October I can do 17th, 21st, 23rd, 30th, in November I’m open to date suggestions (except end of November as that’s when grandbaby is due....so excited I squeal when I say it 😂 )  take care and keep well  love Julia X  ... View more

hello everyone.  Thought maybe we could meet up next month, or July. Thought I’d put some dates on here, so ones I can do in June are 11th, 12th, 17th, and July I’ll fit in with anyone else dates. Hope you are all doing well and your chest infection has cleared Judy. Some fabby news for me...I’m going to be a grandmumma in December, first one sooo excited.   love to all xxx  ... View more

ahh Yes totally understandable Carine, hope you get good results soon. Sorry you’ve got some horrible side effects Helen wishing you well soon.  Hopefully we can all get together next month. Haven’t heard from Judy but hopefully she’ll pop on here to see we are not meeting up today.   love to all  Julia x    ... View more

Hi all, just checking in to see if anyone else is still going to meet up tomorrow (Wednesday 27th). I still can if anyone else is around.  I’ll check back on here either later tonight or tomorrow morning. I had my scan results the other week and they were good as I’m NED (no evidence of disease) so a very happy bunny. Hope everyone is doing well and feeling ok.   Much love Julia X  ... View more

Hi everyone Lovely to see you all last week. I can do March 6th, 20th and the 27th. I don’t mind portsmouth or Winchester. I have my scan this Sunday results on 7th March.  Keep well everyone.   Love Julia X  ... View more

  Hi all yes i can make Wednesday 6th Feb. See you all there. Julia x   ... View more

Hello everyone  I’m sorry I’m going to pass on the meet up in Southampton on 28th as it’s not so great to get to. Hope your wobbles have eased Dragoncarine.  I look forward to our February meet up. love to you all Julia X  ... View more

I’m def free 28th. X ... View more

Hello everyone, welcome Seza sorry you’ve found yourself on here but this little meet up group is lovely and hopefully you will find it very helpful too.  We usually meet in Gunwharf at the Spinnaker Tower cafe but I think next time it will be in Winchester. I hope you can make it it would be lovely to meet you.    Hopefully the other ladies will be along shortly but these are the dates this month I’m free; Monday 21st, bit short notice though I know, then 28th, 29th, 31st January.     Love to all, look forward to our catch up.   Julia X  ... View more