Thank you greenleaf I feel calmer today took myself off in the crowds and retail therapy
Plus I have had time to reflect on what is important and what I can do and what I need to accept
Plus a lovely BC forum lady PM me with her experiences - very similar so I feel less alone
Thanks re the name - yes love both - have just booked a holiday in the sun so will enjoy both for 3 blissful weeks
Hi booksandwine - I'm not surprised you're angry and frustrated. After all you've been through it must have been comforting to have a timescale to work towards to getting on with life. It really isn't too much to ask.
I can relate to you, although I was lucky enough not to need chemo or radiotherapy after my mastectomy in June, so I did have an immediate reconstruction with an expander implant. The problem was my surgeon - who I'm sure is a perfectly competent breast surgeon - wasn't so hot in the plastic surgery department. The result was a mess, and because it was botched, the implant couldn't be inflated. I don't even want my husband to see the resulting weird, growth-like lump on my chest.
I was passed back and forward, and spun a number of lines by the hospital for months about this, until I finally asked to be referred somewhere else. I really wish I'd known at the time how easy it is to be referred elsewhere on the NHS. Have you tried this? All it took was one quick chat with my GP on the phone, and two weeks later I had an appointment with a fab surgeon, in a different hospital, who in turn referred me to a great, specialist reconstructive plastic surgeon. I'm now on his waiting his list (and it's nowhere near a year long), and he's confident he can fix the mess. Just a shame I'll have had to live a year looking like the Bride of Frankenstein.
What I found really helped was researching the options. It made me feel like I had some element of control over things. I checked out a lot of breast surgeons who practice privately, but also do NHS work - websites of private clinics have testimonials, and detail on areas of expertise. I looked for surgeons who had excellent reviews for reconstruction. I then made a couple of appointments (not cheap - £200 a pop - but worth it I thought), and got ideas of how they'd fix things in their NHS practice, and how quickly.
Would that be an option for you? You could find someone who's more willing to operate quickly on radiated skin that way, who maybe doesn't have as long an NHS waiting list? You could also find someone you like a bit better - though I have to say, having met many surgeons over the years, communication skills aren't always a strong point. I suppose what really matters is surgical skill and talent - so sometimes we just have to put up with a rubbish bedside manner. That said though, your surgeon backtracking on his original timetable really isn't good.
Reconstruction can be a pretty long haul - no matter how good the surgeon.
Here's hoping you get things sorted soon ... and get on with life. (love your username by the way - books and wine - two of my favourite things :-))
All the best,
Saw plastic surgeon today after finish of all treatments in October. This was the follow up appointment to when I saw him pre-masectomy and pre-radiotherapy as I had orignally been led to believe I would have could have immediate recon. However learnt from consultation with him affect radiotheraphy has on reconstruction breast and failure rate - was advised he would see me around 3 months after treatment and if I was well and healed well could look to have reconstruction three months after this - IE on waiting list.
Well today 2 months post treatment and all very well healed - got spun a series of lines about needing to see how skin heals and reacts to raditheraphy in another 6 months. He never said I could have reconstruction six months post treatment plus he has waiting lists up to a year.
He was already nearly an hour late for our meeting and I was the only appointment he had today and left stratight after me - got very condesending
Outcome I have no date for any surgery another date to meet in Feb - Why do they all lie to you !!
So I now have a butchered chest that I was told dont worry will only be a few months - NO will be a year or years
I have a life I want to get on with
What do I do ?
Try for another surgeon this one has a brilliant name but crap bedside manner - think today he just turned up to get his fee for consultation - maybe he keeps dooing this and not any surgeries on NHS as this is more profitable
Not have a reconstruction but get surgery to have my dog ears tidied up?
Q also where was my Breast Care nurse - I thought they were still supposed to be my point of contact even after treatment - I had a nurse who sat in on meeting didnt even tell me her name and said nothing through the whole consulation
Is this what the NHS does - cut out the cancer and just leave you hanging ................
Sorry to rant angry and unsure now what to do