Wow, am I getting frustrated!! I feel like life is one loooooong waiting room, waiting for herceptin to finish, waiting for my surgery date for reconstruction, waiting for my clinical psychologist report back, and to know if it is going to be in my favour… Can’t even begin to imagine how I will feel if it comes back saying I am not of ‘sound’ mind and shouldnt be making these kinds of decisions yet. (To explain, I’m opting for mx and recon on my healthy breast, as well as recon on my already mx side - I have my reasons!). Lets not even go into all the waiting room moments I’ve had over the last year and two months! You will all know what I’m talking about there.
I know I need to sit back and relax, and just wait patiently for things to happen, but as most of you will know, having BC is a long journey, which for me started May 16th last year, when I found my lumps. So from all the biopsies, surgery, fertility treatment to store eggs, chemo, radio, herceptin and tamoxifen, I’m ready to have the ‘light at the end of the tunnel’ of reconstruction. I’ve been ready since the day they took my right breast away, but of course there is so much to endure first, you can’t focus on that. I don’t know why I am so desparate to have it done, but my life feels on hold waiting for this surgery. And I know some people have really long waits with their surgeons, and I have a fairly new surgeon so hopefully his list isn’t too long, but I would go into surgery tomorrow if I could. My next appointment is in three weeks, when psychologist report will definately be back and done (and hopefully good!). Three long weeks. Why is time dragging, and why can’t I think about anything else?
I know there could be so many things that go wrong with surgery, and that there will be significant pain, and much rehabilitation, but I’m ready for it - why can’t it be ready for me? I want to look forward, get my life started again, I need 2013 to be hospital free!! Fingers crossed no cancer spreading… that would do me in. Where would I find the strength for that? I’ve read many posts from ladies in that situation, and I admire your strength, and wish you well.
How do others deal with the waiting? I just can’t be this half woman any more.
So sorry for the negative post/rant, I’m just going through a hard time right now. Anyone else wished for a magic wand throughout this whole damned process?? I have, countless times!!
Big love to all you ladies out there, whatever stage you are at, my thoughts are with you.
I am sorry to read that you are having such a hard time at the moment, along with the peer support you will soon have here our helpliners are on hand to offer further support and a listening ear on 0808 800 6000, lines are open 9-5 during the week and 10-2 Saturdays
We also have other support services which you may find helpful, please follow this link for more information:
Know exactly what you mean Tammy. I wanted immediate recon, was told I couldn’t because I would have to have RADS. Then when I asked about recon after chemo and RADS. I was told ‘you can’t possibly have such a serious operation while you’re on herceptin’. So as I was nearing the end of herceptin, I made further enquiries and was told I needed to lose 3 stone before I could have the op. Fair enough, but why had nobody told me sooner??? I could have been losing the weight while on herceptin. I’ve so far lost 2 stone 4 (since start of May) and went back to see surgeon yesterday to let him know that I would have achieved the 3 stone within a couple of months (at latest) and so could I please have a date for an op. He is talking about February. I thought November was a realisitc ask - bearing in mind this is a private surgeon (I have BUPA through work). Absolutely distraught. I feel nobody understands because nobody else is walking round with a mutilated body. My original mx was in October 2010.
I am sorry you two are having such a hard time - the waiting is the worst thing - I can’t actually imagine what you are going through as mine went so smoothly but I do know about the waiting - time just drags - but it does speed up towards the end.
I do hope you are both strong enough to find something positive to do through the waiting period - I know I wish that we had been able to get away for even a mini-break whilst we were waiting but circumstances prevented it.
I hope someone with a more similar history to yours posts here soon for you but in the meantime you both have my best wishes and thoughts.
Thanks very much for all your replies. I know I am not the only one suffering with the waiting game. Sometimes its just good to hear you are not on your own.
Nottsgal, I know exactly what you mean about being told information too late in the day, when you could have done something about it much sooner. I guess they are always just taking one step at a time, and I suppose them asking you to lose weight after everything you’d been through may have stressed you out when you needed to just rest and recouperate? I don’t know, I always hope there is an actual reason for these things. Wishing you the best of luck for the last bit of weight loss (well done on the two stone, that is a real achievement - how on earth did you do it in such a short time? I’m on weight watchers, but find i’m good one week, and bad the other, so one step forward one step back. I’m not getting anywhere!), and roll on February I guess.
Even though I’m seeing my surgeon on 6th sept, I have no idea when surgery will actually be, so i just keep my fingers crossed that there isn’t a long wait. I feel I might go a bit mad if there is!!
Lizdeb, I know exactly what you mean, getting away would be amazing, but I have to work (boo), and my boyfriend left me a few weeks ago, so I’d have noone to go with!! Life is just super isn’t it!!
Thanks again for your posts. Thanks Lucy for giving me the number for the helpline, I may well use it soon!
Will update when I get any news after 6th!
Heyyyy, I finally have a date for my op. 27th November
Pity my husband has to be in Glasgow that day.
Never mind, I’m going to get my boob back - at last
I have a date for my op too - 9th November!! Cant wait like you. Good luck. xxx
I had my mastectomy in 2010, chemotherapy 2010, radiotherapy 2011 and am on Tamoxifen. I did not think my reconstructive surgery was going to happen so I got a job and then got a date. I had the tummy tuck which reconstructed one and the lift for the other or it would have looked even funnier…one pointing straight and one facing south lol. Now they are even I had tatoo and nipple made and it looks really good. I just went along with the surgeons suggestions even though he wanted me to make the decisions. I have now developed lymphoedema in my affected side and I am pursuing treatment for this. I have relocated from London to Lancashire and have been working full time since March. I feel better than when I had my ‘cornish pasty’ boob !! I had an implant but that had to be removed and I was much happier with reconstruction. You need to feel right whatever that means to you we are all different, I know some who have had no reconstruction which I do not think I could have chosen. Theaving road is long I am still on Tamoxifen and having regular check ups but believe I have successfully moved on.
Great that you finally have your dates
Hope you manage to keep busy and that you manage to arrange for all the help you will need when you come out!
I had my mastectomy in August, now on Tamoxifen & 5 weeks of RT start next week. Can anybody tell me how soon I can start pushing for my reconstruction ? Its just that I have been off work since August & would really like to get the next big op out of the way so that I can concentrate on getting back to work for good.