to be upset at NHS for cancer operation waiting time

[melika]

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.

Have they given a reason for the delay and is it part of some sort of treatment plan?

Mum was given a very precise time frame of what would happen and when it would happen and why it was done that way.

They may be doing pre op treatment to the Tumor first? Chemotherapy or radiotherapy?

YANBU to be upset, but we need more information. Delays like that are usually for a reason. Some cancers need to be treated first with radiotherapy or chemotherapy. Has your sister not been told the reason for the wait? Or has she been told, but is perhaps keeping the reason to herself rather than sharing it with you?

My own cancer treatment was delayed so I could have fertility preservation treatment first. I didn't broadcast that about, so it's perfectly possibly some of my own family think the delay in treatment was unreasonable.l

There were a few hold ups and communication between two hospitals didn't help. She had a procedure which was half incomplete at the first and then the second hospital put it right. She was discharged earlier this month and has been told pre op is at end of June and op nearly mid july.

She was told cancer was quite large and had only 1 in 4 chance of surviving it. I thought once diagnosed she would be whisked in and job done but it seems like forever to me.

Do you know what form of BC it is because with inflammatory BC they do all the chemo before surgery to increase the success rate then they follow on with radiotherapy after mastectomy.

No pre treatment whatsoever and the family know all the ins and outs of it.

It may also depend on how aggressive the tumour is. It may well be that a few weeks makes little difference to the outcome. There are normally protocols defined for treatment with specific time targets.

Its not breast cancer, it is pancreatic cancer.

Doh, teach me for not reading properly

I would contact her named nurse and ask whats happening and ask why is there such a long delay. We found the nurse far easier to contact and much more approachable.

I wouldnt be happy sat around waiting if its for no reason.

In that case, I think you should be talking to Macmillan to get some advice and to PALS at the hospital. I'm sorry that your family are going through this; it's hard enough when you know the reasons for things but when you're in the dark and no-one is explaining, it's not fair.

Apparently, my neices have done all that, PALS and MacMillan, it's a matter of waiting. It's not fair that my Dsis is going off her food again, is weak and in pain and she has to wait all this time. I think all that can be done, has. It makes me so angry.

I am really sorry. I don't know much about hospitals and waiting times, but I just wanted to say that I have a friend whose sister died from pancreatic cancer and I know something of how upsetting, and sudden, it can all be.

It is totally understandable that you feel helpless about it and shocked by it. And you deserve an explanation of how long it has taken them to treat her.

Very best wishes to you and your sis xxxx

Are you able to talk to her consultant (oncologist)

if so can you ask them to speak with you, honestly, about what more can be done - sometimes it is more appropriate to look at palliative treatment and making her as comfortable as possible, rather than more waiting and intervention etc.

Macmillan are good with this sort of thing, and so are Hospice - your local one will be able to advise you, they can do outreach as well as caring for inpatients. Just call them and ask for advice.

Thanks RoooneyMara just hoping for the best.

She should not be in pain. They are supposed to have teams of pain specialists to make sure that it doesnt happen.

You need to contact the hospital again and make sure they are aware of whats happening and put it in writing as well as phoning them. This is not good NHS care.

She needs to be pain free and receiving advice on her diet if she is struggling to eat or just gone off food.

Yes I really hope she pulls through xxxx

She just take paracetamol because anything stronger gives her constipation. They do not work that well and she is really fed up.

Its all such a terrible experience. I really hope your Dsis pulls through.

Mum was given a 20% survival rate and is still here 3 years later but we all live under the cloud of cancer and its changed us forever

x

Thanks squeelybean I'm hoping for a few more years for her, don't think she realises what is happening to her. I lost my Mom four years ago, my brother only two years ago, I am devastated with this, don't want to lose another sibling.

OP I'm so dreadfully sorry.

I think the worst thing is knowing that there is nothing to do but wait. The HCPs organising this probably wish it was much quicker too. But they can't magic up resources, and then since you only see them for very brief, often tense consultations, they don't have much time to express that regret and sympathy to you, and then you feel like you're trapped in an uncaring bureaucracy where time is running out but no one is bothered.

It is rubbish. And look, just concentrate for now on the 1 in 1 in 4 - there is time to grieve later, but you have to trust the worst may not happen.

Ok, I remember that with the paracetamol being the only thing that didn't make my friend feel worse.

She started taking something called LDN (low dose naltrexone) and that really helped and had no side effects. Not sure where you can get it from. I think some people with chronic long term pain take it (MS etc)

We lost MIL to this, a year after losing FIL to a cancer of the ducts in the liver. The waits seem so interminable, and the treatment pathways not so clear cut. I remember waiting ages for a meeting to take place amongst the various health professionals in the team, before she could have her official diagnosis appointment (she knew what it was). If she had had an op (she chose not to) then there would have been more delay while they did biopsies.
The named nurse at the hospital was good for explaining what they were waiting for. Macmillan were disappointingly not much use (and the same the year before with FIL) but the District Nurses were brilliant for getting things in place at home and other things like medication too, eg mattresses to prevent sores, things to prop you up - it is less painful sleeping propped up. We bought MIL had a sheepskin to sit on which she loved.

Eating - little and often is recommended, rather than trying to eat whole meals, eg a plate with some cubes of cheese, peices of apple, a couple of nuts, square of chocolate to pick at, a drink with a little cake etc, egg and soldiers. You can get fortified milk shake type things which taste yukky but can help (things tend to taste less pleasant anyway). Sometimes you can be prescribed enzymes to help digest your food.

As revoltingpeasant says, there is hope in 1 in 4. Do whatever you can to keep her comfy whilst she waits. Hope it goes well.

Well, she had the operation two weeks ago and they discovered another lump behind the pancreas which is inoperable. They are hoping to shrink it with chemo. She came out of hospital Tuesday and she still hasn't seen a district nurse although promised one all day yesterday.

I am so disappointed with the care, no matter what we do or say, it's not great. I think they have written her off. I can't bear to think she won't be here in a years time, she has lost so much weight.

That's awful, and unacceptable. What does her Macmillan nurse say? I would consider emailing the director of the Cancer Network you're in to highlight the awful community care and see can they sort out better palliative treatment. Copy in her consultant too. Thinking of you x