I was told by the reconstruction nurse about significant waiting times to get reconstruction if I had the mastectomy. I haven't heard of a two year thing, that just seems very cruel, surely not?!
I guess when I refer to the a cut off date I meant that this was the date I wasn't prepared to wait any longer and just get the mastectomy. I knew I could have got this in my county at the time within 3 weeks if I made the decision. I guess I just needed an end date, a way out.
This is what I'd read. They haven't brought it out yet but sounds like there is talk of possibly introducing timeframes Hopefully not.
Ahh I see, I have just found out that the hospital I should have had surgery at in West Yorkshire is taking the overspill of covid patients from the south east, so to add insult to injury I'm being traded for people from many miles away xx
Hmm it says the link isn't there when I click on it in my last message, but it's a couple of links down from that message saying it's not there anymore. Hope you can see it x
I think there would be a massive fuss if they even thought about implementing that, especially since it was at no fault of the patients.
It's understandable that you are going to get very annoyed especially with what's going on at the moment and how unfair it seems. You have no control over your future and that is just terrible. I think I have brought this up before, but it might be worth you asking for a psychologist to talk some of this over with, and take it from me who was of the opinion of "this stuff is just rubbish", it did help me xxx
Yes it does make me angry when everyday I see yet another news report of another illegal party, wedding or rave with hundreds of people attending being broken up by the police in the London area. These people put themselves at risk and if they get ill they can access the NHS for treatment but I can't. It's starting to feel like there's no end in sight for me if the masses don't care about covid and then they are being brought up north to my local hospital and receiving care
Yes I will speak to them this week. I was doing okay until they cancelled and then the op date came and went. We've already had my husband's diagnosis to get through in the last 12 months so it's a lot to handle without all the extra worry of not knowing when I'll get a date.
I've just spotted this post and thought I'd share my experience. I had a mastectomy May 2020 with no option of reconstruction due to Covid, I was in contact with the nurses but eventually gave up. It's Feb 2021 tomorrow and still no word of reconstruction, I'm feeling completely fed up and forgotten. The constant pressure of the prosthetic hurts my mastectomy scar which is raised and pink but I feel really self-conscious and unconfortable going without it. I am coping by trying to ignore my situation as I get very weepy if I think about it. I'm glad some of you are getting treatment though as the waiting is horrendous.
I am in the same position. Procedures are not going ahead so waiting for surgery date. I have DCIS intermediate non invasive but extensive at 7cm so really concerned that the wait will cause it to turn invasive. Also worrying about how many on these forums have started with just DCIS but then get told it has spread after the surgery. Does anyone know how fast growing it is and I also read that some people have been given treatment to help fight the growth? Mine is oestrogen positive. Any advice very welcome. The waiting is the worst and is so stressful. Best wishes to all SL
Sorry to hear you're in this situation, as I was myself just 12 months ago when my mastectomy surgery was postponed from mid-Jan to mid-March. The waiting was awful and as much as I was dreading the surgery, worrying about what is happening inside while waiting for what seems like an eternity makes you desperate to have it! I would say that the situation with the NHS isn't as bad now as it was 12 months ago, so fingers crossed that you will soon have a date organised. My DCIS was also intermediate and widespread (and oestrogen positive) and luckily despite the delay didn't require any radiotherapy or chemo. Stay in touch with the hospital - the BCN's called me every week without fail, which helped me feel like I hadn't been forgotten and helped build up a relationship between us. Also don't feel like you can't give them a very polite nudge if you haven't got a date in the next 3-4 weeks, because they are on your side and will understand your anxiety.
