To want the hospital to make their bloody mind up?

[CrohnicallyPissedOff]

A relative has cancer. There are two choices for treatment- chemo and operation. Or rather, she will need both, the question is, which one should they do first? The hospital have changed their minds no less than 5 times about which one they will go with. As my relative says 'I don't care what they do any more, just get me some treatment!'

The optimum order of chemo/surgery will depend on the type and spread of the cancer she has, and the skills of the care team (particularly the surgical team).

It's difficult to wait for clinical decisions but patience is required so try to support her through this period of "not knowing". They are trying to maximise your relative's quantity and quality of life. And while it may seem like they are leaving her untreated, a little bit of aforethought may be the best course of action.

I understand that. The hard bit is the way they keep changing their mind- at one point she was booked in for an op but that was cancelled with 5 days notice. Later she was booked in for chemo and that was cancelled with less than 24 hours notice. It's been over a month since her diagnosis- and still no closer to starting treatment, any treatment, she doesn't even have anything for symptomatic relief. Meanwhile she's getting sicker and sicker.

That doesn't sound good. Someone needs to raise merry hell with the hospital. Mum had her chemo cancelled but only because they hadn't done a mammogram. They did it the same day and she started treatment the next day. Someone on her behalf needs to get her consultant on the phone and find out what's going on. It might be worth getting some advice from Macmillian as well from their helpline.

I think part of the difficulty is that she doesn't exactly have a consultant- every time they've changed their mind it's been as a result of getting a different consultant's view. As far as I am aware, she has seen/her case has been reviewed by at least 5 consultants. I don't even know which consultant is in charge of her case any more, and she hasn't gotten in to see Macmillan yet because of all the tests and hospital appointments, arranging child care, and so on. She doesn't went to speak to them on the phone, she has a pre existing anxiety disorder and a lot of her anxiety is focusing on the phone at the moment (due to all the bad news phone calls she's had!)

It's all just such a mess!

My first question is how old is the relative?

I've been attending hospital recently for various things and every time an annoying decision has been made, I've asked, "Is that because of the cost or because of my age?"

She's in her early 30s.

Could someone phone on her behalf? If you don't mind me asking what type of cancer? There are some brilliant helplines, buddies etc. for some types of cancer. OH is a buddy for the lymphoma association so can be paired up with someone who has just been diagnosed and knows what it is like what the chemo was like etc. But this isn't here for all types of cancer especially the rare ones, again it doesn't have to be your relative that phones herself. Could you phone for her or phone MacMillian and get the ball rolling? Sounds like she needs an advocate to help her push for more information.

It's a rarer type of cancer- don't want to say which one exactly. She has a family member who is supposed to be her advocate, but obviously not doing a great job of it! I'm not in a position to be able to.

She contacted Macmillan, only to be told that she had to get referred through her doctors- why the hell wasn't she told this sooner, like when she was first diagnosed? Anyway, she got it sorted and has been told that a Macmillan nurse will come and see her when they've decided what treatment to do. Well, I'm sorry, but we need the support now, while it's so uncertain.

Chronically, it's hard to understand the delay without knowing what type of cancer it is (I'm not asking you to reveal, BTW), but with rare cancers, there is often very little research and even less clinical guidance.

A family member of mine had an extremely rare type of cancer, I'm talking single figure number of patients in the whole of the reported medical literature. The oncologists etc just didnt know what to do. They had the whole range of options in front of them but zero idea what might work. They had three previous reports of treatment plans, all different, sadly none successful.

Can you Google any charity that is involved in the type of cancer, and see if they have any phone numbers/support lines/etc?

Basically, we've been told the cancer is borderline as to whether it can be safely removed without putting too much strain on the body. It's close to vital organs. It's not so much the type of cancer that's so rare, it's the ^positioning'. You know the old saying about when you hear hooves, look for horses? Well, I think we found a wild zebra in England.

So the choices are op first but if they take too much it's risking her life, or chemo first to hopefully shrink it till they know it's safe to operate. The problem is, this has been going on for weeks now and she is noticeably more ill than when she was first diagnosed. They are already repeating tests to make sure it hasn't grown/spread since they were done previously. They'll need to be done a third time soon if they don't do something.

They're fairly confident that chemo will work, btw, as I said there are others with this type of cancer, just not that type in that position. It's a question of whether the potential benefits of the op outweigh the risks.

Oh, and they missed another 'deadline', she was supposed to definitely have a course of treatment sorted but she has to wait again.

Sorry to hear about your family member.

Can she possibly ask to be moved to the care of someone who is willing to make the call?

Without sounding like a dick, is she with a 'good' hospital (major city, high profile, specialist care) or a 'bad' hospital (provincial, more general care)?

Can she (or you? or family advocate?) phone the PALS unit at the hospital? And even the MP for the area?

I don't know- at the moment she is being seen by 3 hospitals in 2 different trusts (all in major cities and I believe pretty good in several fields). The latest delay is because her case is being reviewed by surgeons and specialists in the organ rather than cancer specialists, at a completely different hospital several hours away.

The family advocate has tried to get answers, but the conversation seems to go something like this 'I demand you make a decision and treat her!' 'Well, we'll just do this test/refer to this person and then things will be clearer' 'that's ok then, just so long as we have a decision by x date'. X date comes and 'well, we just need to do one more test/maybe this person will make the call'.

Thanks for taking the time to reply, by the way. I mostly just feel useless because I don't know the answers to a lot of these questions, or all of the medical details, her advocate does yet he doesn't seem to be doing a great job. And I don't want to post the medical details I do know because then google will take her right here! (Don't think she uses MN and I've shared too much private stuff to want her finding me here)

It's more than plausible that consultants etc meet only once a week. So you get surgeon X on a Friday passing on to Consultant Y who receives on Tuesday who meets with colleagues on the next Friday who send along to Surgeon Z on the following Tuesday....Would note that physical distance isn't a barrier to this process - several hours by car is nothing compared to digital transfer.

But that's not really helpful to you, just explaining how I see it working. Has family advocate been onto PALS?

It's tough feeling useless

That's basically how it's been, except throw in a few extra tests and 14646357 false promises- consultant x orders this test that will show whether the op is possible. But it doesn't so he refers to consultant y who wants to see the result of that test and then he'll definitely have some answers. Except that test is inconclusive so he asks consultant Z for his opinion, who will definitely be able to help. And he does- by ordering the op, he just has to redo some tests to make sure the cancer's not spread. And the tests now show the op's not possible, so he refers to hospital 2... and so on.

Definitely get PALS involved, they helped progress my DMs treatment when there was too much toing and froing between consultants who wouldn't/couldn't make a decision.

2 more 'deadlines' have passed and we're still no further on. On Monday we were told we'd have some answers by Friday, on Friday we were told we'd have answers today and the answer is 'one more test and see this new consultant at hospital 4 on weds/thurs'

Can I contact pals on their behalf? My relative won't do it and neither will their advocate.

Seriously, we're all at breaking point. I suffer from depression anyway and I've been wanting to self harm again. I'm seriously worried about everyone else in the family too. Even Macmillan won't offer any advice/support till we know what's going off.

I don't think anyone even really knows exactly the type of cancer she has, we have nothing in writing so everything is word of mouth they've used technical language my relative and advocate doesn't understand and it's like playing Chinese whispers.

Is there a reason why they don't want to involve PALS?
It isn't the same as making a complaint, it is about asking for additional help, support an advice. A simple phone call can start the ball rolling.
www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68

I really don't know- but I advised them to contact PALS and said it was advice service, and they said they would if they didn't get answers today, but now they've said they'll wait and see what happens later in the week.

With my experiences with cancer in the family, operations have been done first, but then waiting for wounds to heal has delayed any chemo starting. Then after various scans etc have been done to check to see how much has been left then the docs can then determine whether it's long or short course of chemo, or radiotherapy to totally eradicate the cancer.
Hope that helps and I hope there's some good news for your relative soon (and the rest of the family who invariably go through hell too).