Hi.
I just wanted to get some experiences from others on their aftercare, once they’d had the surgery and the treatments and months following on from that by medical professionals.
Every hospital and staff is different, so it just an overview of what’s happening out there really.
My own personal experience is in two halves.
The surgery(mastectomy) itself went well. I have a good informative surgeon and the chemotherapy suite/team were also great.
The breastcare nurses and Oncology wasn’t so praiseworthy.
So much so, that because of sharing my breast cancer story with a separate entity, it got passed onto the hospital and I have a meeting with a mediator next month.
I am hoping that they will be more supportive going forward as they can’t change what’s happened but I do have further surgery reconstruction to have.
A brief view of issues, was being admitted to hospital twice because of an infection of the drain left in too long. The other was being given the wrong antibiotics with ultimately conflicted with my Lupus medication.
I had a couple of complications with the effects of the chemotherapy and very little help from Oncology triage or the breastcare nurses, so that’s what this meeting is about overall.
I do hope that you get some answers and some clarification from this meeting . I hope you have everything that you want to ask written down in advance . It’s easy to lose trust when things go wrong and it’s often down to a lack of communication. I haven’t had the experiences that you have had though there were communication problems in my pathway which caused me a lot of stress at the time but no physical harm . I am also a Nurse - I know how easily mistakes can happen . The issue with you having been given antibiotics which conflict with your SLE is an incident that should be being investigated as to how it happened and what can be done to stop it happening again. I’m not sure why your drain would be left in too long .
I hope you get all the answers you need, as Joanne has said write down all your questions, as we can be call over the place at times, so much to take in.
I also had a lot of issues with my drains, almost the same as yours had to be readmitted to hospital for further surgery, However, my surgeon is very caring. In my heart, I feel there is not the care and service we had before lockdown.
Please look out for yourself. Don’t worry that you’re asking too many questions and if you’ve missed one out when you get home give them a call to get it clarified.
Wishing you well going forward please keep posting let us know how you’re doing. Take one day at a time and maybe a cup of tea with a special friend who is able to listen and understand you I know this is hard sometimes.
Hi Joanne.
The antibiotics incident was ironically given to sort out the drain infection. (The antibiotics was a medication i had taken years ago, with no side effects, but that was when i wasn’t taking hydroxichloriquine. The two mixed together caused my kidneys to dehydrate and 4 days in hospital on infusion antibiotics. I found this out a few months later from Rheumatology. )
So after the initial 7 days of having the drain, the 500ml bottle was full, pulling painfully, heavy and should have come out at that appointment, but I believe the nurse mistook a little backflow of fluid as still discharging, so i went home with an empty bottle and it was still empty after 3 days more. At some point during this time, I got an infection from the plastic or tube. The breastcare surgeon did ask for a biopsy equivalent on the fluid. When I asked him later on the outcome, he just dismissed the situation.
I will be sure to bring up this incident in the meeting. See if I can get some answers.
Thanks Tili for your kind words and support. Having Lupus and menopause, my memory fog has double over the past few months, its very frustrating. I have made a list and will quickly write down anything else before I forget.
Hi Concerned, I too have lupus and after surgery and radiotherapy for breast cancer I am now on Letrozole. I too take hydroxychloroquine and nobody so far has mentioned it or that I have SLE. I have an appointment with my rheumatologist next month and will speak to him about it, thank you for bringing this problem to my notice. I hope the hospital take your issues seriously and as you say nothing can be done about what has happened but you certainly don’t want it to happen again. Hope all goes well for you xx
It’s always a good idea to go over with your Drs. what you’re on . I have had a retinal vein occlusion which has affected the sight in my left eye permanently and at one one point I was prescribed Tamoxifen which carries a 1 in 10 risk of ocular side effects and I decided not to take it for that reason. I just did a quick drug check for interactions between Hydroxy chloroquine and Letrozole and couldn’t find any but it’s still worth mentioning as they are the experts and the checker I used may not be quite up to date . Xx
Excellent news Concerned 75, so many lovely ladies with great comments, I don’t know what we do without each other sometimes and families are great, but they don’t always understand.
Please post again let us know how you’re sdoing. Thinking of you and good luck.
Hi Joanne and anyone else who has read my last post, I’m sorry if there’s a bit of confusion on medication, that was my fault. In the hospital, I was given amoxcillin antibiotics for the drain infection( think that’s the correct name) but with hydroxichloriquine. If you mix the two, this can give serious side effects. Which was why my kidneys dehydrated. Luckily by chance, I had an ‘out of the blue’ appointment with Rheumatology 2 days later and they jumped into action when my blood pressure stayed at 75 over something. A scary time.
Just to add PALS (patients support service) will be at this meeting, so as the medications was given whilst I was on the ward, this is something they should be aware of.
It’s good that you’re ok . I would imagine that your Rheumatology team will have raised this but it certainly needs looking into . Well done for having the courage to take it forward and I’m sure it must have been frightening but I’m so glad that you were able to get help and to recover . Xx
right back to you too