Tired of battling with the health system...

Oh Cecile . I think you are so right . It’s such a big system to navigate . Mum has been very fortunate to have an oncologist who runs a tight ship but could see how easily you could fall between the cracks and it’s enough already to go through treatment and uncertainty without that on top of it .

Hope you have a good weekend despite this . If it’s a comfort although I recognise it’s cold comfort there was a two month gap waiting for lung surgery for my mum . The oncologist did explain it all before hand though which helps considerably. What I would say be prepared for the system to suddenly spark into life . Any of the specialists my mum dealt with things seemed to be slow or maybe not even happening then suddenly she was in hospital within the week .

Take care ,

Court 

Hi Cecile,

I do understand your frustration since I was diagnosed last year it’s been exactly the same journey something in a Ct scan they decided not to tell me about. Saying they would organise appointments which they never did I had to follow everything up myself. They were certainly not over the detail. 

Hope you have a lovely weekend. ️

Hi Cecile what a terrible time you are having.

It really sounds as though you need to be chasing up treatments when really you should have that sorted by your team allowing you to gain strength after your chemo

You rant away. I’d be livid. 

At my yearly scan my bowel surgeon called me back for another check on some nodules which I had November

28 th  December a lung function and consult. January a consult with surgeon who offered me three treatments. I decided surgery so Feb a pet scan to check it was just in lung. 7th March a lobectomy and segment. 

So why aren’t you having the same. 

It’s really not good for your stress levels. 

I hope that you have some coherent treatment soon they need to talk to each other 

Sending you a hug 

Hi Cecile maybe we can become rant buddies! Since having access to my medical records, I have found that my secondary bowel spread to my liver was missed. Took them 18 months before I was diagnosed. Had a liver resection last September and was told no chemotherapy was necessary. My first 6 month check up scans showed further spread into my liver. Finally getting an appointment to discuss my options with an oncologist. I’m sad, angry and disappointed. Like you I have chased appointments and results every time. I know the system is overloaded, but it doesn’t help. Fingers crossed that we can both post more positive news soon.

So sorry that you have been missed. It’s sounds like a post code lottery with health care. 
You rant away. 

I feel like I’m the same - I’m constantly chasing up and doing all the phoning to get new answers or where we’re at with decisions/meetings etc, it’s been stressful so I understand how you feel. I complained to PALS because I felt like I was being let down by QMC . Still heard nothing back. 

That’s such a shame Indomitus .

I think oncology is a specialty where trust in the process is a must !

It must be so difficult navigating this . 
We have less population so that maybe helps .

Take care and I hope it improves .

Court 

Thanks Artsie. I have days where I can understand how difficult things are for the medical staff. They’re human beings first and foremost. Other days I’m not so forgiving! 

Hope you get some answers soon Jools63 . The system seems More difficult these days but that’s tough on patients too !

Hope you are having a nice weekend.

Court 

Jools63

I really think you have the right to be frustrated and fed up with your treatment 

I have had amazing treatment since I was diagnosed and put in the hands of a thorough team 

I wasn’t as lucky before this was diagnosed. I had terrible treatment in A&E ending in me walking out and going home. The doctor eventually phoned me laughing with his understudy. 

Not for very long once I said exactly how I had been treated and waiting three hours whilst they were at lunch was completely out of order. 

If you have an issue I think you should say. They need to pull their socks up and sort themselves out. If they’re short staffed they should apologise to you 

Sorry now I’m on my high horse.

I had a flash back of critical care in March and the critical care nurse using my hand cream and taking my iphone charger. She thought I was asleep

I was out of it and she had taken out things and put them in a table I could not reach  

Now I wish I had complained, I was too ill and just wanted out! 

Hope you have a good weekend