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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

to be upset at NHS for cancer operation waiting time

45 replies

melika · 19/06/2013 14:00

My older DSis was diagnosed with a particularly nasty cancer in mid May, she has had several appointments at two hospitals and her big operation is July 11th. Am I being unreasonably upset at this waiting time? I feel like they have written her off already, I am worried.

OP posts:

lljkk · 16/08/2013 09:12

Sorry it's not going well. :-(
Cancer is a bitch.

I wouldn't see it as writing her off. They're trying to weigh up risks & benefits. Medical interventions all carry their own risks. One of the worst outcomes would be lots of unpleasant treatment that doesn't achieve much (increase in length or quality of life) for her. How is she spending her time until the chemo starts?

Ilovegeorgeclooney · 16/08/2013 09:14

I am so sorry, it is so hard to deal with without dealing with difficulties over care. Have you spoken to Marie Cure to see if one of their nurses can help? What is her GP like? They might be able to put a rocket up someone.

Take care and I hope the care standards improve.

Rooners · 16/08/2013 09:25

Hi Melika. I'm so, so sorry to hear this.

I hope your sister is as comfy as she can be. All I really know about pancreatic cancer is that it's one of the ones that can go very quickly...you probably already know this, but that doesn't make it any easier to cope with.

You are quite within your rights to feel appalled at the way she is being treated. If they are going to send a nurse, then they should send a nurse.

Thinking of you x

fromparistoberlin · 16/08/2013 09:27

I am so sorry so, cancer is the biggest heartbreaking fucker. and we can never predict it. I wish you well, you have hard road ahead and I am wishing her the best xxxx

MTBMummy · 16/08/2013 09:42

Be grateful that's all your wait is, we waited 6 months for my mum to start treatment, by which time it was too late and had spread even more.

We lost her last year after a 2 year fight

Hope your friend has better luck

yetanotherworry · 16/08/2013 09:50

melika, I know you're feeling angry with the system now but pancreatic cancer is one of the cancers that doesn't get detected until its too late to do much about it. Frequently, by the time it is detected, then care is more about making the patient comfortable rather than trying to cure. My granddad died from it several years ago so I know how painful it is to watch and how helpless you feel when nothing can be done. Please use this precious time you have with your sister to make memories.

Bluesparks · 16/08/2013 10:18

MTBmummy I'm very sorry for your loss but with the greatest respect and kindness, it's not very fair to tell the OP, who has just been told her sister has an inoperable cancer, to "be grateful."

Tiredtrout · 16/08/2013 11:16

Hi Melika, I'm sorry you're going through this with your sister, we've been going through the same with my mum for the past couple of months. It's incredibly hard and pancreatic cancer just seems so cruel. I hope your sister is getting the help she needs now.

There's been issues with mums treatment, she was inoperable at stage 4 when diagnosed and the delays for each treatment and appointment are very distressinf

chocoluvva · 16/08/2013 11:24

Delays do seem to be the norm

fromparistoberlin · 16/08/2013 13:32

my best friend has just texted to say her treatment is not working,and has to have chemo for the third time. great.

she is just not getting any better

I cant help wonder how much longer she can go on like this, so ill

so fucking sad life

Original poster

melika · 16/08/2013 17:18

Have just met up with her with my other sis and niece at a garden centre to get together. I just look at her, she is a shadow of her former self and I think she has had a really shit life, widowed at 19 with two DC, had several horrible relationships and finally gave up on men. She just got the house she always wanted and now this comes to take her away. Every step of the way in her treatment has been shoddy, I think how lucky Prince Philip has been with his treatment and he is 92. My sis is 56, too young to go.

OP posts:

Original poster

melika · 16/08/2013 17:20

Thank you all for your kind thoughts, it is appreciated.

OP posts:

Lilyloo · 16/08/2013 17:28

I am so desperately sorry to hear about your sister life is just very cruel.
I was naive when my mum was diagnosed with a brain tumour thinking they would quickly act on it , it was a grade 4 so I stupidly thought they would act quicker due to the severity. However my mum spent the last few months of her life being very let down and as you said being left to deal with it.
She even spent time in hospital , which should have been precious family time , hoping it would speed up her treatment.
I honestly feel like she was given up on , when she was diagnosed , but we weren't told and were left in this state of limbo waiting for someone to help us.
I am still so angry now that I lost my mum when she was 45 and her penultimate months of life were not spent how they should have been.
I sincerely hope they haven't written your sister off but I agree with those who have said spend as much quality time as you can with her now.

Rooners · 16/08/2013 17:30

That's not fair...poor girl.

Salmotrutta · 16/08/2013 17:31

I'm sorry your sister is going through this melika.

Unfortunately pancreatic cancer is one of the most difficult to diagnose and treat. I hope she is now getting better support from nurses etc.

You sound like a lovely caring sister and I'm sure she appreciates having you there at her side

mignonette · 16/08/2013 17:40

Melika - I am so deeply sorry to read this. I work as a nurse and i feel very ashamed when I hear of miss communication and lack of communication. There really is no need.

Please ask her care team to refer her to the Pain specialist team at her hospital. This may or may not be attached to the Hospice which is there to manage symptoms not just terminal care so try not to panic if you hear the word Hospice. Insist upon this. She may get too tired to be insistent so this is something you can do, advocacy I mean.
The multidisciplinary nature of pain specialist teams means she can be given advice and support for all stages of her illness , managing the break through pain that can happen at times such as after eating, when she is very active, after any procedures....They can ensure that she has a myriad of pain and symptom control measures at her disposal so she can minimise the impact this disease has upon her every day life. really the goal should be to make her need the service as little as possible because she is comfortable and fully informed.

I hope this little will help. May you have good times amidst all of this xxx

Fluffyears · 16/08/2013 18:51

So sorry to hear this. I lost my father in law on Monday to cancer and he had lost so much weight he was literally just bone (4 1/2 stone). The hospice were amazing and so helpful, they take patients in just for respite and management as well as end of life care so it is worth speaking to a local one. I wish you the best, cancer is awful and I hope never to have to watch someone die of it again xx

Original poster

melika · 17/08/2013 08:59

Thank you for your advice and I will pass it on to her daughters who are doing all they can.

But can this be right? She was told she had a mass, mid may and she didn't get operation until 2 Aug.

If you had diagnosis of cancer, wouldn't you expect an operation sooner?

OP posts:

mignonette · 17/08/2013 09:13

The same happened with my Father Melika and no it is not right unless your sister has been having treatment to shrink the tumour prior to surgery. He was Dx in late January but it was the first week of March that his surgery date was. Then he had to wait another three weeks before starting chemo because he had liver mets and they had changed their mind about surgery by then. The oncologist had gone on holiday and not delegated. The chemo was started too late.

I wanted to complain but he was anti that. I should have ignored him. The hospital was one that was named and shamed a month ago.

auntmargaret · 17/08/2013 10:35

I'm so sorry to hear about your sister,Melika. All you can do is spend as much time with her as possible. Take photos and film, record her voice. When my sister was diagnosed, our GP told us that the NHS would spring into action, and that it really came into its own at times like this. I never saw any evidence of that. There were delays every step of the way, no urgency whatsoever. They ignored her symptoms, I had to kick up such a fuss to get them to take her seriously. It was horrible and they let her down badly. Towards the end, all they wanted was to put her in a hospice and when I refused to do that, we were just left to it. Eventually the district nurses got involved (thanks to our great GP) and after a slow start, she got good care from them. But it was a slog, I felt ignored and judged every step of the way, but I couldn't care less. She was my precious sister and it didnt matter if they hated me, so long as they were nice to her. Macmillan were useless for us. If you didn't need benefits or want hospice care, they offer very little. Marie Curie were great though. Use your GP, ours was great at getting things moving. Thoughts and prayers to you and your sister.

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