Dan's thread

I’m doing alright. Seeing consultant for discussion about lung surgery on monday. Spending time with my youngest 4 year old son this weekend. We have been playing Scakextric cars and remote control cars outside.

He’s not so into music just yet. Just chilling out today with the two of us.

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Bless ya mate. What a great way to spend an afternoon. My 17 old son is doing he all he can to get a car as he’s just started learning to drive! So it all begins!

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How is he getting on with learning to drive?

He’s driving me up the wall :joy::joy:

He’s doing great…albeit no car at mo. He wasn’t fussed about learning to drive so we didn’t rush into getting a “run around”. Then he says four weeks ago he wanted to learn…caught us on the hop.

We’re in the middle of sorting something for him…but…Lordy…insurance…ching ching!!

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I trust you were both making all the requisite noises.

“Brrrreeeeeaaaaawwww”
“Eeeeeeeeeee”
“Bccccsssshhh” etc?

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If not they weren’t really playing with cars.
Sounds like you had a great day Dan.

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Sounds awesome for you and your son

Best wishes

Ian

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@Dan_M how did you meeting go with your consultant?

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I was in there 5 minutes. They haven’t got scan results. They are trying to expediate things and move lung resection op to be done in next 3 to 4 weeks. I will continue to chase up my oncology department as things have taken too much time.

The NHS in UK is I would say is slow and could be called broken. I should have been operated on already.

Given that my lesions have likely to have increased in size further. And my fear is things could have spread.

Very stressful time !

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Gee that’s disappointing hope they sort it out quickly.

People here complain about our Medicare but I think they’ve been fantastic. Apart from the month and a bit wait to see my specialist initially everything been like clockwork.

Stay strong I’m sure that 500 keeps you busy.

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My chemo finished in May and here we are in September.

The ops were meant to be done straight afterwards.

I am disappointed, dismayed and angry with the situation!

It has potentially given the lesions time to grow and get to the point where things are inoperable.

These are my fears. They have taken too long and I still don’t have a clear plan confirmed!

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Very important. Be visible to them and don’t stop contacting them. Sometimes in life this is needed. I’ve lost a very empathetic auntie last year who was very understanding with the hospital but the result was that she was forgotten and she did not make it. Having said that, one other aunt and a colleague organist are still with us and I think it was besides luck that they were very engaged and open about it.

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My chemo finished in late July however I’m about to hammered starting today by 5 days straight then a 2 day rest before I get my stem cells back.

I’m missing them pour level 1 at our place today, I was looking forward to seeing in person.

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Take care, my man.

DG…

I am really sad to be saying this as an NHS consultant but you just have to make a nuisance of yourself. Keep phoning the consultant’s secretary or, even more effective, send a complaint in to the PALS department at your hospital

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Sorry to hear this Dan. In addition to crispyduck’s suggestion, if you have a named Macmillan Nurse also contact them, they often know the best person to talk to about sorting out delays.

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Twenty percent of chemotherapy done, today it will be 40% done and then tomorrow you will be over halfway thru it

Sorry you missed the grand pour, do you have it on video ?

Best wishes

Ian

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I’m using your logic to count the days down, but the percentages are unfortunately wrong. They increase the chemo towards the end.

Haven’t got any videos but lots of photos, if posted them in the cafe.

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Hi Dan

I can fully understand your frustration.

It only seemed like yesterday you were describing the chemo so I was surprised it actually ended in May.

When were your latest scans done, I got the impression the favourable ones were post-chemo raising the possibility of surgery? Are the unreported ones more recent?

Were these scans done at the specialist regional cancer centre or maybe at a district general hospital?

Either way I’d write a polite letter (or email) of complaint to the relevant site as it’s a problem with the system not individuals or teams. Raising the priority by raising a concern should not be necessary but it should help expedite things as much if not more than communications from the oncologist.

This link may help:

https://www.england.nhs.uk/contact-us/feedback-and-complaints/complaint/

Best wishes

AC

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Apologies for some of the questions above, not trying to stick my nose in, just that there will be channels to raise concerns if you wanted to informally or formally, though naturally you might not want to do this at all.

Hopefully the results needed will be available quite soon.

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