Shi Community Champion
Community Champion
Posts: 3,247
Registered: ‎11-10-2017

Re: May 2017 chemo starters

Mishy 😘😘what a faff you’ve had. Lay it on thick at your appointment I did when I phoned my bc nurse when I had a 😳😳and they ultra sounded me 👍👍it’ll give you piece of mind. How’s that beautiful grandchild of yours doing 😁😁😁still got that baby smell? 😘😘😘💕💕✨✨Shi xx
Community Champion
Posts: 1,051
Registered: ‎21-01-2017

Re: May 2017 chemo starters

Good you got it sorted, Mishy. Fingers crossed you get an answer to the orange peel conundrum! X

Member
Posts: 1,854
Registered: ‎29-04-2017

Re: May 2017 chemo starters

Hi Annie the nudging went ok the screening dept were at fault not secretary as i expected she was a star git it all sorted out within a 5 min call to them however i did find out there is a five week back log due to high demand probably due to the fall out from the screening scandal!! I would be more inclined to get annoyed about delay but i have a clinic appointment with my bc surgeon on 16th for the swelling and orange peel area so im sure if shes concerned i will have a ultrasound Im pleased you are accessing support from maggies in group i have just finished mt where now there but we are keeping in touch xx
Community Champion
Posts: 1,051
Registered: ‎21-01-2017

Re: May 2017 chemo starters

Mishy, how did the nudging go? At the secondary BC support group meeting at Maggies we were told there was a five week waiting list!! The numbers of people being diagnosed is increasing exponentially and so waiting lists are up hugely. Also, if you are waiting for a CT scan one of the scanners is being refurbished so a wait there,too! 😡

Member
Posts: 1,854
Registered: ‎29-04-2017

Re: May 2017 chemo starters

Annie so lovely to hear from you your mammo experience sounds surreal i think thats partly what im dreading the first one and all that, I am so pleased to hear of your results that is fantastic news you definitely have to paint the town red watch out Newcastle here comes Annie 💖
the staff in our trust i have to say are fantastic and as you point out Mai they are so massively overstretched in all however delays can make things more worrying and tense for ladies in our position i am going to ring tgem today with a gentle nudge so to speak 😊
Community Champion
Posts: 1,572
Registered: ‎19-04-2017

Re: May 2017 chemo starters

Hi Mishy, yes the screening system sounds a bit messy. No doubt services are overstretched due to lack of government funding and msnagement over-streamlining and the poor nhs staff have to do the best they can. It's not like a parcel delivery service where streamlining might result in late deliveries, no this one results in death and it sucks so I'm glad it hit the headlines. Hope you had a lovely weekend . Xx
Community Champion
Posts: 1,572
Registered: ‎19-04-2017

Re: May 2017 chemo starters

Lovely to hear from you Anniej and I am so pleased about your positive news. You keep whacking that nasty cancer and paint the town red, then green, then purple, then orange........ xxxx
Community Champion
Posts: 1,051
Registered: ‎21-01-2017

Re: May 2017 chemo starters

Poor you, Mishy. I agree. There's enough to worry about without checking on medical procedures. Had my first mammo two weeks ago at RVI. Experience not great as it was same room and same radiologist! Unbelievable ! Bit of a melt down, but she was wonderful . Apparently it is quite normal to feel emotional the first time. Also that same week had my first CT scan after three cycles of Palbociclib. Two weeks of hell waiting for results at clinic. I was convinced it had spread further as I have a few aches and pains now, plus a little dry cough I can't seem to get rid of. Great news though. My lung mets have shrunk, and there is no sign of further spread. Painted Newcastle red that night!! 🍷🎉🍾🙃. Hope you get appointment sorted. X

Member
Posts: 1,854
Registered: ‎29-04-2017

Re: May 2017 chemo starters

RANT alert 😨 To add I will be highlighting the importance of mammos being on time for us ladies and computer errors which can cause unes especially in the light of the terrible screening cock up which has been addressed in the house of commons today some of those poor ladies who lost their lives due to problems in the screening programme, ladies we will have to be on the ball re app etc.... Rant over 😉👍
Member
Posts: 1,854
Registered: ‎29-04-2017

Re: May 2017 chemo starters

Evening ladies a lovely night in Newcastle windy but sunny which is main thing, got call to say have an app with bc surgeon on 16th to check boob i think they are more concerned about the orange peel dimpling in skin rather than swelling hopefully its just rads effects so surgeon wants a look, any way my main rant is about mammo been expecting a letter with date should be due this month to discover tgat my bc surg secretary hasn't sent the request card down to screening department which currently has a 5 week delay so it could be July by i get it im fuming im niw going to have to chase it with her tomorrow as she was off today thank goodness the bcn rang me or i wouldn't have realised and just been sitting like a lemon waiting, i explained i was all psyched up fot it and really its not good enough having to chase these things up myself thats the second time ive had to do this, it makes me look like a pain in the 😨
Rant over!!!! Looking forward to the weekend as we are being promised warm weather and sunshine which is great news when most of last summer was lost due to treatment looking forward to summer 👍😎
Member
Posts: 1,411
Registered: ‎24-03-2017

Re: May 2017 chemo starters

Appointment with GP today at 5.15 - to check the rampiril is doing it's job and to ensure it's not affecting my kidneys whilst repairing my heart!!! 

 

Herceptin again tomorrow, then just 2 more to go.........!  x

Member
Posts: 188
Registered: ‎30-05-2017

Re: May 2017 chemo starters

Jay, thanks for the info. Lots to think about.

 

Community Champion
Posts: 1,572
Registered: ‎19-04-2017

Re: May 2017 chemo starters

Thanks Jay, I'll have a look at those. Xx

Member
Posts: 1,411
Registered: ‎24-03-2017

Re: May 2017 chemo starters

Mai and Daffodil - there are two very interesting threads on here regarding reconstruction.  I highly recommend you having a read.  First one is under "Moving forward after treatment" "Recovery after treatment" "A flat way of life" and the second one is under "Going through treatment" "Surgery" "to reconstruct or not".

 

I'm still very much undecided.  Like you Mai I'm keen to let sleeping dogs lie and in another way I'd love not to have to think about prosthetic etc when I get dressed in the morning!

Community Champion
Posts: 1,572
Registered: ‎19-04-2017

Re: May 2017 chemo starters

Aww, thanks ladies for the lovely words.  I am deeply moved. Heart  Likewise, you have all been amazing and whilst I shared all knowledge researched you double checked and sense checked it too and just knowing there was someone else out there feeling as crappy and isolated as me was a great comfort.  I'm sure we will be friends for life now.  I think our shared compassion and sense of humour has been a great distraction from some pretty harsh realities we've faced! xx

I had my lymphodema check up last week and all good, only a 2% difference so Im considered low risk for lymphodema.

Binocular woman!!! thats funny Shi. x

Daffodil, I still have my head in the sand on the recon at present but would be interested to hear what you have to say after your appointment.  I feel a bit nervous about the prospect of the tissue in that area being disturbed again - let sleeping dogs lie and all that...... but want to feel balanced and symmetrical again! :-? xx

Member
Posts: 188
Registered: ‎30-05-2017

Re: May 2017 chemo starters

Thanks for all the wishes for today. So, I need an ultrasound scan, but surgeon didn't seem too worried. Have to see him again in two weeks time, so more waiting, first to get a scan and then for the results.

I will also attend a BRA meeting on 8th May to meet other ladies who have had or are waiting to have breast reconstruction surgery. It is an opportunity to discuss options and outcomes. Still about 9 months till I am due to have mine, but surgeon wants me to the research so I can make an informed decision. 

Take care ladies. 

Member
Posts: 1,411
Registered: ‎24-03-2017

Re: May 2017 chemo starters

Thanks for sharing this Treehouse.  

 

Of course, you'll have no need to use them - you're off on holiday and you're going to have a wonderful family time xx

 

Member
Posts: 1,621
Registered: ‎11-05-2017

Re: May 2017 chemo starters

For anyone travelling I just got travel insurance through ALL CLEAR.
It was good cover for a reasonable price and included all of my issues. ❣
Hope I don’t have need to use them when we go away. X x
Member
Posts: 1,621
Registered: ‎11-05-2017

Re: May 2017 chemo starters

😂😂😂😂👍👍😂😂
I do wear rather strong glasses 👓 but won’t take offence.
Knocky woods is wonderful!
🌳 🏠
Member
Posts: 1,411
Registered: ‎24-03-2017

Re: May 2017 chemo starters

Yes indeed Tatyana - please do pop onto facebook and take a look at what's arranged - you could well be tempted!!  

 

I do like the way Treehouse has become known as "Binoculars" Woman - when my son was small he used to call binoculars - knocky woods!  - all have a connection, in a funny way with the name "Treehouse".....!  

 

If it wasn't for this forum - I'm sure I would have gone crazy (sorry.... crazier!)!!!  Love you all, xx