Palliative and general care

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Hi all. I've not been on here for a while.

Two weeks ago I was hospitalised due to seizures and my entire family was told I was a gonna. 10 mins later I was not. I stayed in for a few days and have now been diagnosed with an additional brain met on top of the two already known about and I was also waiting for pet scan which I had on Monday for Sus liver mets.

Anyway the entire experience has made me think about how little consistent support there has been for me and my family since the words terminal and palliative care only were written on my ds5100.

I have no one port of call. I am sick of contacting the primary bcns and the reply is always "I don't know I will find out". I was told I would have a secondary BCN but no one has contacted me since April. I was told the gp would co - ordinated a plan. Nothing. They have not even contacted me since hospital.

I only saw the chemo nurse and acute oncologist nurse for 5 minutes in the hospital. Since arriving home Ive heard little from anyone other than appoints I have attended that were pre booked with ENT a neuro pharmastist and neuro surgeon. I've been told I'm on epilepsy pills for the foreseeable and that I have to attend the Marsden in January for follow up head MRI.

I just feel like there is no continuity of care and that I spend all my time on calls trying to co-ordinate everything myself. My partner has gone back to work and honestly I am really frustrated with the contact.

I wonder if anyone can tell me the sort of palliative care and contacts coordination they are recieving. Is this just where I live? Is it busy everywhere? Are some areas just more attentive than others. I hear cancer centre etc. We don't have one here. I go to four different hospitals in four different towns for different treatment. I was told I would get councilling and this has not happened.

My childhood friend died of bowel cancer last Friday too.

Rrrrrr I will have a merry Xmas despite no results from my pet scan.

Sorry to rant and I sincerely hope everyone is getting all they need and had the best Xmas possible.

BoobyCancer over 1 year ago

Hi Cheesewell,

So sorry to hear about your situation. I don't have any experience to contribute, but have you considered getting your GP to refer you for a Macmillan palliative care nurse? https://www.macmillan.org.uk/cancer-information-and-support/get-help/macmillan-nurses

Veronique M over 1 year ago

This sounds awful! So sorry you cannot get more help. You mentioned the Marsden. Do ask there: I've found doctors and nurses there friendly and caring. Sending strength and warm wishes.

Lark77 over 1 year ago

(short story - serious lack of coordination if you'd like to skip reading a bit of a rant!)

Thanks for sharing this cheesewell. Unfortunately, it sounds quite familiar. After the first few months (Feb-May 2022) of constantly having to repeat myself and coordinate communication between oncologists/palliative/OT/coucillor/district nurse about recent communications with all others...Where I am it feels like there is a fairly well coordinated palliative care team that can help with painkillers (as long as you can wait with everyone else in the phone q at 8am for the GPs). No doubt they are amazing with people at the end of their lives. But it often feels like there is no time/inclination/budget to deal with the side effects which then have a real impact on quality of life. As you try to keep family/job/health needs together. I am absolutely convinced that many of my symptoms are are result of the side effects of cancer care, understandably, and I am more that willing to try and address these through forms other than taking narcotics.In addition to taking narcotics where absolutely unavoidable.

Further complications here that there's a long running recruitment issue for Secondary BC consultants. So although there's a major hospital a couple of miles away, anyone here has to make a return trip of a couple of hours to a different town to see their Oncologist. Not ideal when recovering from a fractured vertebra and extensive bone mets,

Apologies I did not expect this to sound so negative, but I am gobsmacked by how much determination (and help from friends/family/neighbours) is required to keep going. And what happens to people who don't have those others around them!? or those with less sympathetic employers or fewer work rights. Even my designated go-to bcn nurse is obviously overworked..Discussing and confirming (during meeting with oncologist) referrals for certain services and access to medical records isn't enough to ensure it happens. Anyway, I should stop now!

Vey sorry to hear you are going through a tough time. If you do come across a system that is coordinating this I would be really grateful to hear more.

Best wishes

cheesewell over 1 year ago in reply to Lark77

Hi and thank you. It's become a mine field now. So sorry you have it too. I have resorted to letter to my MP. He now has access to all my records and is taking on my case. I am hoping it will have some positive outcomes for my area. They have just employed another oncologist who I have an appointment with on march 23rd. I feel sorry for her. She has a huge backlog.

I will keep you posted of outcomes.

Again so sorry you are here too. Thank you for replying.

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