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AIBU

To think DD's oncologist was insensitive?

(169 Posts)
merlotgran Wed 03-Apr-19 20:07:09

As many of you already know, DD has been diagnosed with a rare gall bladder cancer and sadly the prognosis is poor. Up until now she has been under the excellent care of the Hepatobillary and Gastrointestinal team but is now in the hands of Oncology. Her first appointment to discuss chemo was yesterday afternoon. Oncology outpatients was very very busy and we were relieved not to be kept waiting as DD has to use a wheelchair and the waiting room was packed.

The oncologist swept into the consulting room and with the briefest of introductions launched straight into the bleakness of the case, using words like 'terminal', 'slim' and 'palliative' before we hardly had a chance to sit down. In short, they will attempt chemo in two weeks time but she was almost certain that DD would not be able to tolerate it due to her poor liver function in which case they would stop!! Any questions were answered by being handed a leaflet to read at home. DD was then instructed to get measured and weighed on the way out.

The HGB team had been encouraging using words like, 'hope' and 'positive'. When on the ward DD was treated with kindness and compassion. This encouraged her to do things like get her hair done, go out for lunch with us last Friday and even make a short trip to Tesco with her son. Now she's at rock bottom, deeply depressed and scared. It's been an awful day.

I know the NHS is stretched to the limits and an oncologist is not responsible for emotional support but I drove home fighting my anger at the damage done to DD's emotions.

Maybe I'm just oversensitive. We're all scared.

willa45 Fri 05-Apr-19 16:20:45

Merlot, I am so sorry you had to endure such appalling insensitivity. Just remember that as long as there is life, there is hope.

A dear friend of ours was given six months. She endured the treatments and that bought her enough time for a newer drug to come out. Five years later, she's still a survivor.

One boorish oncologist doesn't know everything, so don't let his blind stupidity color your outlook. In the meantime, you can write a letter to the hospital and talk to her other doctors about support groups, new research and new treatments. Find out also if there are any promising clinical trials she could be eligible for.

Please know that you are all in my prayers with very special ones for your daughter (((hugs)))

knickas63 Fri 05-Apr-19 16:26:59

I am so sorry for your worries and treatment received. Please complain to PALS at your hospital! I have worked in complaints, and they need to hear these things so that they don't happen again. The Oncologist needs a bit of Communication training. Sending you much love and healing.

EmilyHarburn Fri 05-Apr-19 16:30:42

I am so sorry that you and your DD had this dreadful experience. The oncology service will have a social worker of a psychologist or a therapist attached. I suggest you find out what they have and get a session booked. It is important to keep positive during cancer treatment.

Do hope you get some emotional help.

Barmeyoldbat Fri 05-Apr-19 16:36:58

I am so sorry to hear what has happened but somehow not surprised. My mother has exactly the same, a rare cancer in the gall bladder. After all the tests she went into a room with her consultant and us her family, and was simply told what it was and that there was no treatment they could do. That was was it and we were all in shock. Myself and a sister have both had our gall bladders removed because o problems we were having which makes us feel a bit safer. But I still think about how we were told and the shock. Good luck with it all, at least she is having chemo and that could well help.

NanaPlenty Fri 05-Apr-19 17:13:04

How dreadful - I would definitely put in a for,al complaint. Nobody should ever be treated like that. So sorry you are going through this and that your unpleasant experience has made it all the more difficult to cope with. Sending much love, kind thoughts and healing wishes.

grandtanteJE65 Fri 05-Apr-19 17:30:08

I am so sorry that you and your poor daughter are having to deal with this kind of insensitive doctor.

I don't suppose you can deal with any more than you are having to right now, so that neither you nor your daughter could contemplate complaining about this crass oncologist.

Perhaps you could keep a short diary, writing down as you have done here, exactly what was said and how, so that later if you or indeed your daughter feel up to complaining you have a record of what actually occurred.

Much the same thing happened to my sister, who was suffering from brain cancer. A young surgeon told her bluntly that she had at the most two years to live. He hadn't bothered to ask in advance whether she wanted to know the prognosis or not. She didn't, I may say; and it took a long time for her to see that while there is life there is hope.

Is there any chance that your daughter could see another consultant next time? If not, please do encourage her to speak to the nurses and technicians giving the chemo. IMO they are often much more aware of the emotional chaos the patient is dealing with and very much more encouraging.

I hope that the doctor's prognosis will be proved wrong - they are after all human, although it is difficult to believe your daughter's oncologist is actually human, and being human - fallible.

Do please let off steam here, whenever you need, or discuss the fears you obviously don't want to talk to your daughter about, unless she herself brings them up.

My deepest sympathy for all you both are going through.

Milo27 Fri 05-Apr-19 17:46:40

They need to be told! This is unacceptable in any walk of life. Patient care , particularly in these circumstances is paramount. Grrrrrrr sad

OldGeezer Fri 05-Apr-19 17:54:09

As a retired veterinary surgeon - if an employee of mine had dealt with the owner ( and/or their family/friends ) of a patient of my practice in such a callous and insensitive manner, and such behaviour came to my notice, they would receive the bollocking of their life, be handed a written warning, and if there was a repeat of such behaviour be looking for a new job with no further notice.
As NHS patients we have been paying these clinicians' salaries since the day we received our first pay cheque. Your DD has prepaid her diagnosis and treatment her entire working life. Someone needs to remind him or her that clinical excellence is no excuse for bad manners and an uncaring attitude.
Write to the GP who referred you, they will definitely be grateful for your feedback, the head of the oncology dept., the hospital manager, the head honcho of the clinical commissioning group and your m.p. and anyone else you can think of - the local press love a story like this.
Make a fuss - I have done so on a couple of occasions, you invariably get positive results.
Finally, anybody managing any business - and a hospital is a business too - needs to know if someone is letting the side down - and will usually take appropriate steps to remedy the situation.

Caro57 Fri 05-Apr-19 17:54:36

Dreadful. Focus on the HPB nurses, have you a Maggie’s Centre nearby? Your local Macmillan Cancer
Support team could provide psychological support for you all - you can self-refer.

I wish you all well

Shizam Fri 05-Apr-19 17:59:32

How awful when you’re both in such a vulnerable state. Most doctors are lovely. Some are arrogant egotists. I’m sorry you came across the latter. I would put in a complaint when you feel up to it. All best wishes to you and your family.

HurdyGurdy Fri 05-Apr-19 18:07:48

I am horrified at the insensitivity shown by the oncologist. You would hope that as they deal with frightened and sick people all the time, they would have developed a better sense of dealing with them. You must all be in such shock.

I would agree with the other posters who have said to make a complaint. It won't help with your dreadful experience, but it might prevent someone else from being subjected to it.

I hope you can continue to be positive and encouraging, as you have been up until now.

Sandigold Fri 05-Apr-19 18:35:03

I am sorry you have to face such a difficult challenge as a family. I would say, based on my own hospital experience, you can't count on the NHS for emotional support or ant real assistance on dealing with the psychological impact of an illness. It may happen, as your daughter experienced previously, but it's not a "given". If you are willing, there are other options for the kind of support your family needs.

Selsey99 Fri 05-Apr-19 18:57:23

I would send a letter of complaint and report the insensitive so and so these consultants are not God. I wud not let this go no way. If u write and complain they have to respond and he will b in trouble. I know because I have had to do it. I know u r all in a bad place at the moment but try and do it if nothing else he might treat the next person with care and respect. Sending big hugs to u xx

Selsey99 Fri 05-Apr-19 19:03:45

I agree write to PALS daughter not well enough to do it

Charleygirl5 Fri 05-Apr-19 19:05:45

merlot I would suggest that your DD requests a change of consultant because that was totally unacceptable.

How to impart bad news was never part of their medical training but she should have had some thought of what she was telling your daughter and showed some compassion if she is familiar with that word. She should not have been sitting at the other end of the room.

maddyone Fri 05-Apr-19 19:17:55

Merlot, I didn’t know about your daughter’s illness and have only just found this thread. I am so very sorry that you and your family are in this difficult situation, which has only been made worse by the total lack of sensitivity shown by your daughter’s consultant. I can’t give any advice, I can only send my sympathy.
I do hope your daughter finds the team far more kind and sensitive when she next attends the hospital.
Thinking of you and your family flowers

Sulis Fri 05-Apr-19 19:34:44

How absolutely terrible to see your daughter treated like this. I am so VERY sorry. Sending you all much love and lots of hugs. Xxxx

Lizzies Fri 05-Apr-19 19:44:29

I am so sorry you had a bad consultant. Thankfully all the people involved in my husband’s treatment have been amazing. Get in touch with the Macmillan nurses and your local Macmillan team,they have been incredibly helpful to us.

vigdis Fri 05-Apr-19 20:31:23

Oh, that is such an awful experience for your DD - I feel much sympathy for you. The one thing you need more than anything is just a little encouragement and hope, and this individual has snatched it away with such an atrocious manner.
My own oncologist was a bit like the one you saw. He was known by his staff as "Dr Doom", and I was told that it is not uncommon for some oncologists to be rather forthright and clinical.
I actually discussed this with another oncologist who said she thought some of them were like this because they were so busy and rushed off their feet that they couldn't spend any quality time with their patients. She herself was a lovely kind person - she seemed to manage it.
I know the outlook seems bleak, but no-one knows how she will react to chemo - she may well tolerate it better than anticipated. Perhaps it might be an idea to contact a Macmillan nurse who can talk you through the procedures, and give you some much needed encouragement, they have had a profound effect on a friend of mine going through chemo.

vigdis Fri 05-Apr-19 20:41:19

...PS... do you have a "Maggie's" centre near you? They will give you some much needed support, and kindness. They also operate online - just reading the blogs and conversations will give you some comfort. You are not alone. flowers

sluttygran Fri 05-Apr-19 21:29:22

So sad that you’ve had this distressing experience. Bad news has to be accepted, but it’s so much more bearable when some empathy is shown.
I do hope that despite the grim prognosis, your daughter gets well again and has many more years of happy life.
Such poor prayers as I can offer are with you and yours xxx

Sleepygran Fri 05-Apr-19 22:11:24

My heart goes out to you and your family.you are not being over sensitive,and may you keep your strength to help your daughter and her family and yourself too.
Sadly my mum and a friend both had this sort of that net from their oncologist.Very clever people but awful people skills and no compassion.
I would write it down for now so you remember and complain if and when you feel strong enough.

NannyEm Fri 05-Apr-19 23:29:14

It looks like this is a common situation with "specialists". What a horrible experience for you and your daughter. There must be a middle line between a doctor becoming too involved, and being completely devoid of compassion. Sending you love and best wishes from Adelaide, South Australia.

Houndi Fri 05-Apr-19 23:49:58

I worked with a oncologist consult who informed me that patient get in the away of the disease.He was in fact a brilliant surgeon but bedside manner nil

Rene72 Sat 06-Apr-19 00:33:15

I really feel for you and your DD, some people need to get some compassion and manners. When my mum was dying in hospital a nurse walked in and said ‘Oh Mrs C are you still here? I thought you’d have gone by now’ I was absolutely fuming. I reported her and was told it wasn’t the first time she’d been told off. And, when my husband was ill in hospital a Dr attending him asked him ‘ have you thought about being revived if your heart fails?’ He wasn’t in for his heart, he was in for dehydration because of a gastric problem! Needless to say Dr was told off by the ward sister for being too blunt and rude!
I’m sending hugs, hope and best wishes to you, your DD and Family xx