I'm not really sure where to start. My mum was waiting to start caelyx for a 2nd recurrence after only finishing carbo and taxol at the end of march. She started getting ascites again and when she saw her consultant 3 weeks ago he asked for an urgent drain and ct. She was supposed to go back to see him on the 6th aug and thats the date she got for her drain.
Anyway over the last few weeks she had just got worse and worse with the ascites and we called for an ambulance early Monday morning. She spent the night in an assessment suite where I got a phone call from a Doctor saying that they had put a DNR in place and that basically that was it for my mum.
She then got transferred to a ward where she gets her cancer treatment. Since then things have got worse. We noticed she started sounding really weird and was really confused and said she had seen us when she hadn't etc. We spoke to a nurse and they said they thought it was the antibiotics she was on as she had an infection (still don't know where or what) and that the doctors weren't concerned. Well things have got worse and I've now spoken to a doctor and they've sedated my mum as they need to give her a blood transfusion (she's anemic) and that she was becoming more confused. They have also said they might change the antibiotics as it could be those. We can't seem to get any answers and we can't speak to her consultant. The nurse said they would run more tests and then take the next step if necessary?!?
I know you can't really help me I think I just needed to rant to people that actually know what I'm talking about.
Stupid covid means we can't even go to see her.
Sorry for the long winded rant.
Take care
Sarah xx
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sjg81
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Hi Sarah Having nursed my mum at home I can totally empathise with how you are feeling right now - having said that on the other hand I can't because you can't be with your mum because of Covid. I wish I could give you a big hug. What I can tell you is that the hospital wont let your mum be in discomfort. I feel for you, I really do. Others will empathise too. That's probably little comfort because you just want to be with you mum. I think I'm rambling because I'm trying to find the right words to comfort you. Rant away, we are all behind you xx Kathy xx
Thank you so much for replying to me. Its just so frustrating because its always someone different that you speak to. I may have been in a little bit of denial because after I got over the shock of what the first doctor said over phone, I did think that he did say he wasn't a specialist cancer doctor so maybe it would be different when she spoke to her oncologist (she knows shes incurable) and at this point I was clutching at anything. I also feel guilty because I think I should have made her go to hospital sooner but we really did just think it was her ascites as that is how she was firstly diagnosed and that was her main symptom of her recurrence.
Thank you for your kind words and support and I'm so pleased to see you're still here on the site ❤
Hindsight is a wonderful thing because I felt the same, wishing Id made my mum go earlier. You will have done what you can and your Mum will know that xx
Rant away. You are doing everything you can. Don't give up - make a nuisance of yourself until you get a proper response. I know from bitter experience how Covid is making things even more difficult, especially getting a response from the oncology team but I did eventually get some action. Speaking as a mum, my daughters have been amazing (they really went to bat for me when I was so I'll after surgery) and I'm sure your mum knows that you are too and doing everything you possibly can. Thinking of you and sending lots of hugs.
Hi Sarah, I'm very sorry your Mum is so poorly. Reading between the lines it sounds like the Hospital haven't got to the bottom of what is wrong with your Mum and it might be it just needs a bit of time for the antibiotics to work. Don't blame yourself for anything, firstly your Mum probably doesn't want to be in Hospital and secondly we are not Doctors so it's difficult to know when she needs more help. She's getting the help now so please God she'll be better soon. Take care Sue xx
My thoughts and prayers are with u and your mum ......hopefully they will get some clarity on the problem soon and make thing easier for her ....I was in hospital early covid and having no visitors was so awful... sending a hug xxxx
So sorry for you and your mum. Just wanted to say that if you are having difficulties speaking to the right people at the hospital, try enlisting the help of PALS. It's their role to help patients and families. Thinking of you.
I am sorry to hear this news. It is a bit of a nightmare currently, trying to speak to an oncology team- no one seems to be where they usually are pre Covid, even the secretaries aren't in the office a lot of the time, although an email to your mum's oncology secretary should get a response early next week. Otherwise, ring the Macmillan/CNS nurse at the hospital and put your questions to her - they are there to facilitate communication with the oncology team as well as other things, and should at least be able to get them to contact you, or might even be able to tell you which antibiotic she's on and what for, or even exactly what's going on. Unfortunately, its Saturday, so you will have to wait till Monday to do that now, but that does give you time to have a think and make a list of what questions you want answered.
Your situation is hard enough without the added stress of not being able to talk to the right people and getting accurate information; I am sorry you and your mum are in this very difficult situation, which would be hard enough under normal circumstances, but of course, the presence of Covid makes it so much worse, particularly not being able to visit your mum. If your mum is very confused, I wonder if she is being given morphine as well, because that can cause confusion, but perhaps she has a kidney or urinary tract infection, both of which can do the same.
I hope you are able to speak with someone and get some sensible information soon.
Two things it may be useful to know: a DNR doesn’t mean no treatment it just means that if a ventilator or crash team is needed they will opt not to resuscitate.
Secondly... is your Mum being cared for by a consultant oncologist? If it’s a general ward they may not know enough about cancer to treat her... make sure you speak to oncology. I hope you and she are able to weather this storm xx
Hi. It sounds scary and frustrating not to be able to get answers. From other people I have seen on this site it seems like getting back on chemo would be best if ascites is a big problem. But I would fight hard to speak to the oncologist Monday. Xx
HI Sarah, I'm so sorry to hear you are going through this, Reading your post is like looking into a mirror for me, I'm going through exactly the same, my mum had a reoccurance and has gone rapidly downhill, I completely understand how you feel with the hospital, some nurses are great and some are so unhelpful, same to be said for doctors, our mums are at their mercy, to give you some hope we had a ward doctor basically say the same, there is nothing to be done apart from palliative care et, thankfully my mums oncologist had a different view, my mum ended up in the original hospital that did her operation 7 years ago, not local to us, the doctors were brilliant, they threw everything they had at my mum, different drugs, different antibiotics anti sickness etc, I know how frustrating it is when we can't visit and see for ourselves how they look or help them, try and get the name of the ward sister and explain your concerns and how worried you are about lack of communication, my mum was sent home after 12 days and unfortunately is very ill at home now, she is refusing hospital treatment and we are caring for her at home, don't give up hope, people can have complete turn arounds, I wish you all thr best and I really do feel your heartache, my mum is 61 years old, I hate using the word unfair but it really is xx
I'm so sorry i haven't replied to you all individually and I just want to say thank you from the bottom of my heart for replying but my mum passed away last night. Totally devastated 💔
I am so sorry to hear that your Mum passed. OC is so devastating. My heart and prayers are with you and your family. My her memories of all the good times envelope you and bring you some comfort. We all need to fight for a cure and a proper accurate test to diagnose this heinous disease early. Holding you in my prayers.
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