My Mum has been admitted with a bowel blockage, 2nd time in 8 days. She was an emergency admission to her local hosp.
She was managed well over weekend. Yesterday am a bowel surgeon came to examine her, the dr on call for that team. I get a call from Mum after that in tears saying she was devastated and that he had blasted her with info and she heard chance of colostomy, chance of NGT for life and hospice. I rang the ward and asked the nurses to plse go and look after her as she was distraught. I am fuming. I rang her oncologist who sent a gynae nurse up to prescribe steroids and told me to stop googling hospices and that she would ring Mums gynae oncologist who did the initial debulking a year ago and that she would speak to the surgeon. I had no calls returned by him, but his house officer rang and i explained my fury, not his fault but i asked to pass on my rage and arranged a meeting with consultant this am.
The dr was the most negative man i have ever met, very frank, very doom amd gloom. Leaving M amd I shell shocked. I asked had he spoken to her surgeon to which he said he hadnt. I insisted he rang her there and then. She put him right, explained that Mum needs this disease removed and that she has examined scans and it is not a massive operation. To cut a long story short she has told him what to do, he changed his tune and is operating tomorrow. I tried to get her transferred to where she was operated on a year ago but with covid its not possible and the risk of perforation and covid is bigger than the cancer
I am sooo angry. I cannot believe he saw a woman with OC and a bowel blockage, wirh up til 2 weeks ago an amazing quality of life for past 10 months, and just thought that was it. He hadnt liaised with her team and i am still so angry about what he put Mum through, scared, sick, vulnerable and alone as I wasnt there. He took every bit of hope away. I spent 7 hours calling her team, liaisng, reassuring Mum, speaking to nurses today and left her happy, reassured and we feel happy that he is abreast with situation.
My shock was the ignorance and lack of understanding he had for secondary bowel disease caused by a gynae cancer. How would a patiwnt without an advocate navigate this scary cancer journey i... I am beyond angry and want to get Mum through this asap. I cannot let it drop though and think i will write to him. Her oncologist and gynae surgeon saved us today, thanks to me being like a bull dog and chasing, chasing, chasing. Every time i think of her little frightened, worried face i cry and want this man to think about his behaviour. What he needs to get is what Mum heard and her upset and shock at his approach. I will wait til she is through this as dont want ro antagonise him.. But cannot let it drop and need him to know.
I didnt question how my Dad was treated by his surgeon and regret never querying his behaviour.. Cannot make the same mistake twice, he can never make someone again feel like my Mum, and I did yesterday
Rant over, any pearls of wisdom?
Thank you for reading this x
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Sazzaroon
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All I can say, is thank heavens your mum had you to fight her corner. I have had experience of an arrogant approachable surgeon and know how upsetting and traumatic that can be.
I hope your mum recovers well from her op then you can let him know just how poor his people skills are.
Hi, I read your post and this made me so angry on behalf of your mum, you and your family. I have had similar situation when my mum was ill and then myself. i wont go into detail now as this is about yr mum (you can pm me if you want details) suffice to say you dont have to put up with this, dont want a repeat of this! Contact PALS at the hospital . I did and one consultant is no longer allowed to even speak to me again. Its so not acceptable. I hope everything goes well. Bug hugs to you both xx
Thank you. Im lying here waitmg for news as he didnt even commit to whether it would be today. I am still so angry and hurt. How dare someone who doesnt know us eliminate all hope in a 5 minute chat. She is so brave and so full of hope, as am I and i am eaten up with anger for this man. When she is out i will follow it up. Meanwhile i just want her out and safe... Hopefully we are allowed visit now which is great... Thank you. May message you in future x
I know exactly how angry and upset you are feeling at the moment. What Ive learnt from experience is that Drs and nurses whilst doing an amazing job arent gods, they do a job and in doing that job patients should be treated with respect. Dont be afraid to stand up for your mum, it wont impact on future treatment xx
Only amusing thing was that I made him ring her gynae oncology surgeon in front of us. Suddenly he changed... Offering surgery, apologising and then he said "well, I can see you are not ready to hand in the towel and maybe we should try surgery..." Mum and I did giggle about it later. Why should i have to liaise with a team behind a patient, point out she does not have bowel cancer, she has OC with malignant nodules on the wall of her bowel post debulking.
I am taking this so much further... Ovarian cancer seems so poorly understood. Thanks to my calling we had a macmillan nurse with us during chat yesterday... Why couldnt he have done this instead of barging in unprepared.
Rant over but let this be a warning to all you brave ladies out there... Make sure anyone new is aware of your past history.
Thank you. Im off to write to PALS... And maybe the papers... (joke!!)
I am sorry that you and your Mum had to go through this. Sadly I think that it is more common for this to happen in these days of Covid than before when teams were more consistent.
I certainly had a number of doom and gloom conversations with doctors who I discovered later had no real experience of my cancer whilst in hospital. You don’t always know who is turning up at your bedside: they might be an inexperienced registrar or someone drafted in who is a specialist in something else entirely.
Luckily my oncology team were up beat and consistent, so eventually I did get the right treatment.
My tips would be: ask each doctor to say who they are and what their role is. Latch on to those specialists who are positive and keep repeating ‘ this is the advice I have had about treatment, this is what I want to happen’.
You and your Mum can argue back... I refused to agree to a DNR order and that meant they had to come and justify their recommendations to me. I know you should feel cared for in hospital but as you have discovered, you do need to be prepared to fight your corner. xx
Im so glad that you managed to get the right treatment. I just think that what a dr says and what a patient hears are not always the same thing, esp when the word hospice is thrown in... Im sure hes a nice man but sometimes these surgeons need an idea of what its like to be in the bed or beside the person in the bed. He could have waited for the chat... I had a meeting yesterday so face to face meetings are allowed... I think visiting will be allowed soon🤞
Your post has brought tears to my eyes, what a terrible wally of a doctor. Your Mum needs emergency surgery and it might be worth asking her team if there are any other options for the surgery under the circumstances. It might be that once that Doctors mouth is shut he's actually pretty good, I do hope so because he's not inspiring confidence. Good luck and I really hope everything will be okay for your Mum, she's lucky she's got you. Sue xx
I had an ‘experience’ with an oncologist too. She was rude, horrible, blunt and said ‘well, if it’s on your liver’.......
I did tackle her, but left the room in the end and stormed out. Never seen people move so quickly to catch up with me, calm me down and talk to me! The following day I had a call from one of her colleagues apologising for her behaviour and he then became my ‘much loved’ oncologist, so she clearly had form and they knew it!!
I would go to PALS as well, I’ve always said that they are doing their jobs and doing it well but need to also think about what we hear!
I hope you and mum are both ok.
Oh, and the ‘it’s on your liver’ turned out to be a vein she had seen on it!! xx
No pearls of wisdom I’m afraid, the NHS is, on the whole, so very good in cancer and gynae treatments, but it only takes one with little or no empathy to bring things tumbling down. It’s dreadful that you had to do what you did, but what an amazing job you did, and how proud your mother ( and thankful) is of you.
It’s true, though, nobody should suffer this way again by a medic who might be perfectly adequate, but not trained to see any person as someone to treat with understanding and compassion. That needs sorting now before anyone else suffers.
Well done you. I am afraid some surgeons do barge in without knowing all the facts. In my experience they are not always the most empathetic of individuals. You must be a force to be reckoned with to get your team on side so quickly. Your experience makes me so grateful for my own oncologist. She stepped up when everyone else said we didn't need to continue with investigations as nothing had changed significantly. How wrong they were. She was the only one who really listened to me. It was still a difficult time but she got investigations moving again and it was discovered that the recurrance of disease was extensive. I was just so glad someone had finally listened to me. She was so patient and positive as we explored every avenue of treatment. It's so sad that we sometimes have to fight so hard to be listened to and shown a little respect. My respect to you and your mum and I hope all goes really well with surgery. 🤗 Jackie
Thank you to all of you. I have ranted this am and feel better. I have drafted a letter to PALS but i have also drafted one for him. He needs to inform himself, judge his audience and understand that not everyone has an ally who is strong enough, nearby and able to do all the chasing I have had to do. I never ever want him to make another family feel like we did. I have seen first hand the physical battles this disease requires from all of you guys and some arrogant man should not add to that emotional one.
He took her down 2 hrs ago to theatre. We had no choice in end... Bowel perforation risk greater than cancer. But not until her gynae surgeon rang him. Mum said his tail was jammed between his legs and he took my no to call me when there's news. She was in great spirits... Relieved she is doing something and we were informed
I am so proud of your support for your mum and I don’t know you.
I would so take this further to stop this happening to anyone else.
Medical staff are amazing, but, they don’t always have bedside manners or the ability to treat people respectfully and not just a number.
I went through the trauma of this when my mum was close to passing and I can’t tell you how unpleasant things became and I didn’t get the outcome that you seem to have achieved.
Well done you! I wish you and mum the best possible outcome and many more quality of life years together.
Just get mum safely on the right path, document everything that has happened and put forward an adjudged case above his head, not to him, since in my opinion he had his chance,
Oh my goodness what an awful experience and a exact copycat of what I experienced during a very similar hospital admission in February.
I was an emergency admission and ended up under the care of a General Surgeon who admitted he knew nothing about cancer.
However this did not preclude him turning up at my bedside one morning telling me if the blockage did not release then I could not survive because it was inoperable and then breezed out of my room.
Like your poor mum I was just devastated. General surgeon or not such a cavalier approach to breaking bad news is never acceptable. It’s insensitivity and cruelty is indescribable.
I suspect given that bowel disease is a common clinical feature of OC that this scenario is not uncommon and as you said how destructive must it be for those ladies who are unable to advocate for themselves or have someone to advocate for them.
I wonder whether Ovacome or anyone else has looked at this?
Hi Sazzaroon, just caught up on your post and the treatment of your mum. Well done for making a stand and being a wonderful advocate for your mum. How is she now as I think you said she was going to theatre a few days ago?
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