Why does life have to feel like wading through fucking treacle

[bloodywhitecat]

Last year, after a long drawn out battle to get him diagnosed DP was told he has bile duct cancer and had six months. The whole sorry saga was full of battles right from getting him seen by the GP, (I know people say the NHS wasn't 'closed' but that was not our experience), to him being turned away from A&E, dayglo yellow, to botched biopsies and delayed appointments and scans.

He is now under a new hospital for chemo, they assured us it would be different. It isn't. Today he was supposed to have been called by his oncologist (after they rearranged his appointment 3 times). The call never came. DP tried to call to find out what was happening, no answer just an answerphone so he left a message. His specialist nurse never calls back. I am so fucking done. There is no support. Macmillan have been fucking useless. We have no Maggie's. I don't know what else to do.

Oh this sounds horrendous Where I work, I often find that patients who use the PALS hospital complaints service often get a result. I am so sorry you have been going through this, it isn't good enough - your poor DH.

OP I'm so sorry. The lack of joined-up care can't be helping at all. I have no real advice but didn't want to read and run.

Thank you.

I have emailed PALS tonight.

I'm so sorry to hear this @bloodywhitecat - I read your first thread about your DH and you recently kindly commented on mine (my DP is being investigated for bladder cancer). It must be just so painfully frustrating to have to go through this . I hope PALS gets results for you.

I'm so sorry to read this, OP - what an absolute nightmare for both of you :-( I hope PALS will do something to help you. There's no excuse of this kind of treatment. It's particularly grating when everywhere we look we see people who won't hear a word said against the NHS. It doesn't always work as it should, and sometimes it's simply a disaster.

Hi OP - just wanted to say I’m really sorry to hear this. We had similar when my DF was diagnosed with pancreatic cancer. Everyone kept mentioning MacMillan but they really were of no help at all. I can still remember the frustration and tbh shock at how difficult it all was and how little help there was as well.

I really hope PALS helps you. I know it sounds a trite thing to say but I hope you can get some support too.

I’m so sorry to hear that op, it sounds incredibly tough.

This is not the same thing at all - please don’t think I am in any way comparing our situations - but I have had really bad experiences with my GP and various ‘specialists’ during lockdown too.

Things like the GP refusing to see my son in person (even after four telephone appointments spanning several weeks) and his skin getting so infected that we wound up in A&E.

We eventually got referred to the right department after me making dozens of phone calls and sending various emails and no one calling me back.

And even after he saw the specialist and she said she wanted to see him again as a matter of priority in four weeks, her secretary then called the next day cancelling the next appointment and offering us one in four months time! Then she ignored every single one of my phone calls and emails again.

It’s so frustrating and upsetting and exhausting having to constantly battle to get the correct care isn’t it.

I really hope you manage to get the care and help and support you and your DP need through PALS

It does help to hear that others are struggling too although I am sorry we are all having to experience this.

We have called PALS, the specialist nurse, the oncologist's secretary and so far nada. nothing, zilch.

I'm so, so sorry you're going through this.

After many, many phone calls to my DF's GP and eventually managing to speak to a Dr, I had to point out that the "care" so far was worthy of a complaint to the GMC and I was seriously thinking of doing it.

They then put us with the local Hospice who were brilliant.

Going through something similar at the moment. It seems to me that if its not Covid, they don’t give a fuck.

Massive hugs to everyone struggling

@Darnley

Going through something similar at the moment. It seems to me that if its not Covid, they don’t give a fuck.

I wholly heartedly agree. It is sad that there are so many others experiencing this but if you try to suggest it you get roundly shouted down.

I’m so sorry this is happening to you and your family, I hope PALS gets back to you ASAP.

I know this isn’t to do with your OP but have you considered getting married? It may make things easier in the future.

Have you considered contacting your GP to ask them to help with chasing the hospital up? Might be helpful....

Sorry you’re going through this

@Tippexy

I know this isn’t to do with your OP but have you considered getting married? It may make things easier in the future.

Yes marriage is on the cards, we are hoping for lockdown to ease a little so we can celebrate with close friends and family though.