Gransnet forums

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.

yeragain65 Sat 13-Apr-19 12:54:16

oh yes, that rings a bell about moving the chairs.
at one oncology appointment I was told to "sit there" right by the door away from my husband.
I don't know where it came from, but I moved my chair closer to my husband and it felt better.

having said that, I am 73, stage 4 cancer. the last oncology appointment was a farce.

the ctscan report was there.

the oncologist barely looked up from the computer.
said it had grown a little.

I asked how much.
he said, no eye contact again,...that's what all my patients ask me...replied his didn't know.

then i received a letter for a ct scan on my neck, which i knew wasn't true.
i rang the cancer nurse, she confirmed it was a typing error,
huh...who cares....

Charleygirl5 Sun 07-Apr-19 12:27:46

Merlot I also would rearrange the chairs next Tuesday and even move yours and your daughter's chair closer to the consultant's desk "because of your hearing problems!"

grumppa Sun 07-Apr-19 11:43:33

Just to redress the balance a little, I should report that on Friday I accompanied a close relative to their first appointment with an oncologist, having been passed on from another department.

We fully expected the worst, but in fact the news was very good, and, understandably, was given us by a junior doctor. She then insisted that we wait to see the consultant, who, we were told, made a point of seeing all the patients. The consultant had nothing to add, but it was reassuring to hear the good news from the top, as it were, that my relative was cancer-free and would have six-monthly check-ups to keep it that way.

MegrannyW1 Sun 07-Apr-19 10:35:35

How awful for you all, I agree with other comments that these consultants need to learn to be sensitive, your daughter is a person not another number

sparkynan Sun 07-Apr-19 06:55:05

Hi Merlotgran, I don't often post, but felt I had to. From my experience try and keep a journal of your feelings and what treatment your daughter has. It will help if she wants to complain and it may help you long term.
It is so hard being Mother to an adult going through illness, you can only offer your support and love, where as inside your crying and want to make every better and take their pain away.
It sounds like she wants you to go to the clinic with her, if your not happy with the chair layout, tell the consultant you are moving a chair to be next to your daughter as she was so upset at the last appointment. Make the consultant feel a bit of guilt! (Maybe ask your daughter if she minds you doing this before you go in.)
Try and support your daughter and make the most of every good day. I know it's hard and may get harder for all of you and I truly empathise.
Try and persuade your daughter to talk to the MacMillan team, as a previous poster said, they offer support, advice and help to people at all stages, just because your meeting with them now it doesn't mean your giving up.

Juliepuk Sat 06-Apr-19 23:37:40

I'm sorry for you and your Daughter. What an awful experience. I think that some consultants find it difficult to constantly deliver bad news and use this harsh form of delivery to protect themselves but receiving that prognosis is certainly worse for the patient and their feelings should be a priority. Good luck to you and your family. X

Mycatisahacker Sat 06-Apr-19 22:21:31

Praying and thinking of you and your precious dd for Tuesday xxxxx

glammagran Sat 06-Apr-19 21:07:42

My heart goes out to you and your daughter. I wish you both very best wishes for the future flowers

Bathsheba Sat 06-Apr-19 20:58:21

I will be thinking of you on Tuesday Merlot, sending you and your DD positive vibes xx

debohunXL5 Sat 06-Apr-19 15:33:59

Oh Merlot I so do feel for you and your DD. We also met with insensitivity from not only her Oncologist but also two Oncology nurses. The first one blabbed about my DD's condition to parents at the school gates and the second one I referred to as Miss doom and gloom as the only time we saw her was to give us bad news. The Oncologist visited my DD in hospital when she was admitted with one of her infections and approached her about a DNACPR. This was devastating for my daughter and she absolutely refused at the time as she wanted to be resuscitated. It was as if they had given up on her, They had stopped her Chemo. Despite my DD's prognosis she was determined to prove to the Oncologist that she was wrong. She had two little DC and was not going to give up without a fight. and my golly she did fight right to the end. I could not be more proud of her. Please tell your DD not to give up I know you will be supportive as I was to my DD. It will be the second anniversary of her death on the 14th of this month. She only had 7 months from diagnosis to her passing and was ill for most of the time. I sometimes thought that she would have had more quality of life without the chemo but my daughter thought it was the way to go to having any chance of survival. She wouldn't even try alternatives because the Oncologist said not to take anything else whilst on Chemo. I am sending you and your DD all the love in the world and try to keep positive. Positivity is key. flowers

Mamie Sat 06-Apr-19 13:01:53

So sorry to hear this Merlot. I don't spend much time on Gransnet these days, but sending love.

CazB Sat 06-Apr-19 12:20:32

I am so very sorry for you and your DD Merlotgran. I can understand how awful you must feel, as my mother was given a terminal diagnosis in a very similar fashion and wish I had complained at the time. Thinking of you and send my love.

Gonegirl Sat 06-Apr-19 12:17:09

Will be thinking of you both on Tuesday merlot.

Try to get some enjoyment out of weekend even you are the work horse. grin

merlotgran Sat 06-Apr-19 11:24:26

Thanks, everyone. I am up to my neck in visitors at the moment which is lovely for DD but a bit like juggling the D Day campaign with Glastonbury where meals, beds and comings and goings are concerned!

I might not be on much but just wanted to say your kind comments are much appreciated. We'll be more informed on Tuesday so fingers crossed things will move forward in a positive way.

Thanks again.

mtp123 Sat 06-Apr-19 11:15:59

So saddened to read your post merlot. It can only have made a bad situation worse! I will be thinking of you all.

Menopaws Sat 06-Apr-19 08:11:29

I'm so sorry Merlot. It really is luck of the draw. My husband's treatment has been truly marvellous yet his cousin got short shrift but so much hangs on those meetings and it is very sad you had a bad one.

Marylou1977 Sat 06-Apr-19 04:50:31

I am so sorry your daughter is going through this with such a brusque doctor. Are there any support groups around? I am part of Facebooks support group for ovarian cancer and it helps. My oncologist lost his first wife to cancer, and is very kind and compassionate. He even gave me his personal cell phone number! All doctors should be as kind as he is.

Lorelei Sat 06-Apr-19 03:31:55

merlotgran, it is difficult to know what to say when you have had such a rotten day. Whilst I wouldn't expect doctors to be overly fluffy or to offer false hope, the consultant could have delivered bad news/prognosis in a more sensitive manner and spared a few minutes to answer any questions you and/or your daughter may have had. As your daughter's consultant is lacking in the social skills and communication departments I just hope she is a good oncologist and gives the best treatment possible for your daughter.

I do hope that, with your support, your daughter will learn to deal with her depression; it is horrible that she is now scared and I hope she can find some coping mechanisms to quell some of her fears. Do you have any clinical nurse specialists, cancer nurses, or any other healthcare support staff involved? If so, maybe they could be helpful. If you can find time and can bear to do it, it might be worth considering making a complaint so that your daughter is not subjected to a repeat of this rather brutal insensitivity and that others will not be future victims of such callousness. A little kindness can go a long way, especially when dealing with patients who have complex needs, nasty diagnosis, poor prognosis, chronic and/or life-threatening conditions, terminal illnesses etc. It costs nothing to be courteous and to at least make patients feel as though you listened to and heard their concerns then addressed any issues with professionalism and sensitivity.

I wish you and your daughter well and hope she is as comfortable and pain-free as possible - she is lucky to have a loving caring mum. You don't say how old her son is, but I hope he is coping OK too - it must be hard on all of you. flowers for you and flowers for your daughter. I hope that tomorrow will be a better day.

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

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

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.

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.

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

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

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.