Hi,
Wonder if anyone can throw some light on this. So I am waiting for the op date which has been put on hold due to Covid and today I get a call from an Operation Assessment nurse. We spent 10 mins going through all the questions and I am booked in to give some blood tomorrow. I am a bit puzzeled as to what is going on here, surely this should have been scheduled with an actual op date? Keen to speak to anyone who has experienced this or understands more about this.
Susan
Hi Susan,
I am also awaiting mastectomy with immediate implant reconstruction for DCIS. My diagnosis has taken months and months as it is a big area and I had to have multiple biopsies before they were satisfied that it was DCIS. Now they have done an MRI and think they may have found an invasive bit, so the goal posts keep moving. Very worrying as I've been in the dark since end of Feb. The department I am with had a meeting about restarting reconstructive surgery last week but have not yet been given to the go ahead to resume as it's "not safe". The surgeon called me last week to say that ideally he'd like to operate on me at end of June. I just spoke to them again today and they say they will update me next week. At the moment they are only booking operating lists for 15 days ahead so that the patients can self isolate for 14 days prior. I imagine if you have been invited for blood tests they are planning on operating about 2 weeks later. It may be different where you are though. Each NHS Trust seems to have a slightly different approach. It's the waiting and uncertainty which is doing my head in.
I just spotted that you wrote this post on Monday so I hope you got some more clarity when you went for the blood test. Let me know how it goes. I am getting my treatment in Burnley.
Regards,
Marisa
Hi Marisa
OH MY GOD I am sooooo happy for you truly, what a relief!!
No I don't have any news from my end other than they are trialing ops this week so it looks like my trust is behind Burnley by a few weeks. It's good to hear that other areas are now starting up. Hopefully I won't have to wait too much longer.
Keep safe and keep me posted xx
S
Hi Marisa
Just wanted to say good luck for your op tomorrow.
S
Oh, thank you so much Susan. Fingers crossed it will all go swimmingly with no complications...
How are you doing?
Marisa x
Hey
I'm sure all will go well tomorrow x Did you have to go for a sentinel biopsy today before your op? Not sure if they do that in every case but I will have to.
Can't really say I'm OK. I experience a range of emotions daily....sadness, anger and frustration. It's 9 weeks on Thursday since I last saw the consultant. I have contacted the breast nurses 3 times (two times due to a question about letters I had received). Not one person has contacted me. I feel like I've been left, and the longer this goes on the worse my mental state. Why can't they just ring me and say.........it's still not happening because of this or that. I feel embarrassed now to call them....hey me again, any news? It's equally hard and frustrating that each Trust seems to be enacting different strategies and getting on with it. I know from a colleague that there are no covid patients at the hospital and yet............(silence).
I mean just EURRGGHHHHH!!! FOR GODS SAKE, WHERE'S THE COMPASSION?? :)
I am re-reading this and laughing..............you gotta laugh......(she says clutching her head rocking back and forward)
Anyhoooooooo rant over. Let me know how you get on after the op xx
Tarraaaaa.
S
I so totally get what you are feeling. I've been living in that exact same world until 2 weeks ago. IT SUCKS!
One thing this whole experience has taught me is how my patients feel when we don't communicate with them adequately. I'm an old age psychiatrist so I diagnose a lot of people with dementia and sometimes it takes ages to get the diagnosis confirmed. I now have a lot more empathy for how that waiting must feel for them.
I would say keep ringing the breastcare nurses and tell them how you feel. Sod it if they sound *** off that you are ringing yet again. You have every right to!
I also called the breast cancer now helpline when my hospital still hadn't got the go ahead for reconstructions and the woman I spoke too had some really helpful practical advice about how to apply a bit of pressure in the nicest possible way. It also helps that you feel you are a bit more in control!
Your mental health is as important as your physical health and sometimes I think it helps to emphasise that side of things to the breastcare nurses. The lady I spoke to on the helpline was really good at getting me to talk through my feelings as well as making some practical suggestions.
Anyway, sending "kick up the backside" vibes to your hospital and plenty of empowerment energy to you.
Marisa x
Hi Susan,
Just wondering how you are?
Sending love,
Marisa
Hi Marisa
More importantly, how are you? How was the surgery, are you healing well and how are you in yourself?
S
Hi Susan,
I'm doing well thanks! Still needing to take it easy as I have a tendency to overdo it and wound has been complaining a bit. But on the whole I am healing well. Very tired and have good and bad days in terms of mood (I've got the all clear from margins and lymph nodes, which is wonderful, but somehow I found it hard to be joyful when I heard it!). I started taking tamoxifen this morning...
I've been blogging like a mad thing:
I find it really helps me to process everything that's been happening. Any news on your surgery yet? Been thinking of you.
Marisa x
Hi Marisa
Glad to hear you have been given the all clear, what a relief xxx
You might want to grab a coffee, this might take some time.....;)
I'm feeling very frustrated and sad at the mo. Last week I rang the breast nurse and was told that she still didn't know when reconstruction would start. My husband came out of his office 15 minutes later to me sobbing and immediately rang the nurse. He asked the nurse to speak to my consultant and get him to give us his thoughts. So a day later she rang me back to say that he thinks all surgeries will restart in September. So maybe I will have my op in October, six months since I will have had my diagnosis. We haven't had the predicted outbreak in my area but the Trust seems to be sticking to it regardless and haven't even used the private health care they bought which has prevented me even considering private treatment. Can you tell I am getting really bitter? As part of this process of course I am to have a consultation with a reconstruction nurse. So today was the date I was to have a telephone consulation but this was cancelled three weeks ago. I rang the breast nurses to ask why this was and they got the reconstruction nurse to call me. She wants them in person which is understandable and I was to look out for an appointment but call in 3 weeks if I hadn't received one. I rang and left a message for her Tuesday, and again today as no one is calling me back. My closest family members can't quite believe how bad the communication is and have likened it to torture. No-one has proactively called me and If I hadn't rang the hospital I would not have had any communication with anybody. I have a 10cm area of intermediate DCIS and although they think it's unlikely to spread my mind isn't thinking that. Anyway, I plod on into the unknown.
Sx
Torture is exactly the word! The way they have treated you/are treating you is not acceptable. Do you have the energy to request a second opinion from somewhere where they have resumed surgery? You are entitled to do that with choose and book. My DCIS turned out to have an invasive component - only small but it did galvanise them to operate as soon as they could. I am outraged for you and know just how it feels to be in limbo like that. It plays havoc with your mental health. Give me a call if you need to sound off...
Not sure if you can private message on here? I will give it a try.
xxx
Torture is exactly the word! The way they have treated you/are treating you is not acceptable. Do you have the energy to request a second opinion from somewhere where they have resumed surgery? You are entitled to do that with choose and book. My DCIS turned out to have an invasive component - only small but it did galvanise them to operate as soon as they could. I am outraged for you and know just how it feels to be in limbo like that. It plays havoc with your mental health. Give me a call if you need to sound off...
Not sure if you can private message on here? I will give it a try.
xxx
Hey Marisa
I have your friend request and have messaged you.
S
Have replied. For some reason I don't get an email to say someone has PMed me.
Hi Spookcat.
Just reading your old posts here.
Can you tell me a bit more about the Choose & Book please?
My surgery for mastectomy has just been cancelled (DCIS - intermediate grade) for next Thu 21st and I'm wondering if I have any options in terms of another hospital that hasn't cancelled reconstructions yet or going private if the NHS hasn't already taken over the private theatres?
Thanks in advance for any thoughts you can offer :0)
C x
Hi Chrissie
So sorry you find yourself in this situation. It totally sucks! I'm happy to chat if it would be easier, as it's a bit difficult to explain exactly what I did to get a second opinion. I used some of my doctor contacts to put me in touch with an oncologist who did a bit of asking around for me. He found a service which was a bit ahead of the game. However, the big caveat is that getting a referral to that service took about a month, as the referral got lost in the post!
He found a service which was a bit ahead of the game. However, the big caveat is that getting a referral to that service took about a month, as the referral got lost in the post!
I found that the best thing was to keep on hassling the clinic where you're going to get your treatment. I rang mine frequently to ask for updates. Going private will cost you about £20,000 if you want a recon
I wrote a blog: www.bigholeblog.wordpress.com
which helped me process everything. Do PM me if you like
Sending much love to you and solidarity.
Marisa xx
Hi Marisa,
Thank you for getting back to me :0)
I think a call is a good idea thank you, although I only got cancelled yesterday so today is my worst day yet as I'm feeling quite emotional today. In the meantime I've sent you a friend request so I can message you privately until I'm feeling able to hold a phone conversation without bursting into tears!
I've managed to keep busy and focused on surgery for the last 4 weeks since diagnosis and have managed to stay very positive about getting an early diagnosis, but today I feel like the rug's been pulled out from under me. It's an awful situation to be in and you can't help but wonder how much worse the cancer is getting while waiting for the surgery to be rescheduled (which is likely to be many weeks away).
Wow £20k. Didn't expect that. I thought maybe £6-8k :0(
Thanks again,
Chrissie xx
Hi Chrissie,
Im in exactly the same situation as you so I know how you're feeling and I'm in Glasgow. Diagnosed with 10cm DCIS 21 December and the only hospital who do Diep reconstruction here in Scotland is an Nhs hospital and I found out on Friday that all but emergency ops have been cancelled and as I have DCIS I'm not an emergency. I have private medical insurance but this is no use in this situation as diep reconstruction is not available privately in Scotland. Consultant rang me on Friday and is looking into sending me to London for surgery with my private insurance. It's just the thought of an 8 hour car journey home with wound in tummy, new boob and seatbelt. Please let me know how you get on. We are both in exactly the same awful position right now. Hope it might help you to know you're not alone. Angie x
