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Geri is the thyroid cancer specialist nurse on the Macmillan Support Line.
She checks this group and responds to medical or factual questions where members could benefit from an expert answer. You can also post questions specifically for her - she'll aim to reply within three working days.
Okay, so an update on whats been happening..
I went back to the UCH and told PALS that I had slept on it and definitely decided that a transfer to the Marsden was what I wanted to do, he told me that if I stayed at the UCH the op could be done in exactly 2 weeks (heard ducks quack before) with the new consultant, and the Marsden would be a much longer wait. I said Id waited long enough, I can wait some more for the peace of mind of being away from that hospital. He said there is a problem. As the first consultant had emailed the second to refer me (internally in the UCH) as he was on leave, however, the second consultant was unable to refer me because he hadnt seen me in person! He was not able to see me in person for the next couple of weeks (so does he operate first, see later?! Or does he operate with his eyes closed.. hmm). I said that its 2012, I am sure Mughal (1st consultant) has a mobile phone, and I am sure that someone in the hospital has the number, please just call him and tell him to refer me via email, as he had done the previous Friday when he referred me to the 2nd consultant at the UCH. The PALS officer said its not a good idea to do that as it may make him angry and he could "dig his heals in" and not refer me at all!!! I said I would take my chances with it because by the way things are going Im not getting referred anyway.. He went off and came back telling me that the Mughal's secretary was "scared" to phone him and disturb him with this on his annual leave!! He did tell me though, that he had spoken to the 2nd consultants secretary, and booked me in for the following morning (weds) clinic with a junior who was under the 2nd consultants team.. He said that he may not be able to refer me as he wouldnt know who to refer me to. SO.. I agreed to that (it was something) and the PALS guy said he would ring the Marsden and find out how long they think the wait would be for surgery there so at least I can make a decision based on that. Also, he told me that the secretary had said that these are the two best surgeons in the country and I would be silly to move away from them!!
I walk out of the UCH and head to my mums with my son and boyfriend.. And my mobile goes.. its the PALS officer at the Royal Marsden. She said the PALS officer at the UCH had just phoned her, and she asked for my number so she could give me the information she had given him, as this is my treatment, my body and my information, and she wanted to make sure I had all the info myself! She said the wait for surgery would be "up to" two weeks, that the consultant is happy to take me on, she told me to write down his name and gave me the fax number that the referral needs to be sent to so that I can personally give them to the consultant if he says he doesnt know who to refer to or where to send the referral!
The following day I meet the PALS officer at the UCH at 11am and wait an hour and a half to see the juniour- but it was the 2nd consultant that I saw. I sat in the chair, he didnt want me to speak (nor the pals guy), went behind me, spent 10 minutes squeezing my neck in various places, puts his hands on my shoulders for a moment before sitting back down and telling me I have cancer. And unfortunately its spread to my lymph nodes.. And I am going to have to have surgery.. At which point I interrupted him and said could he please refer me to the Marsden. I very briefly explained why, he got annoyed at the PALS officer and said why did he book me into his very busy clinic when all he needed to do was make a phone call (then didnt let the PALS officer explain why) and then told me to go back to my GPand get him to do it!
I said that my GP said he cannot refer me, he was the first one I asked. I said both he and the Marsden hospital have said my consultant needs to refer me with my notes. So refer me. He said what do you want me to do? I said I have the fax number and the name of the person you need to refer me to, all you need to do is write the referral. He said he would not write a referral he would dictate it <what an arse> I said thank you very much, and I would appreciate if you did it today, and left.
Of course he didnt, but the PALS officer chased him up and phoned me this morning to tell me that the referral had been made..
So after this nightmare I hope the Marsden is good!! Oh, and also.. with regards to the 31/62 day thing, the uch said that my GP didnt do an urgent cancer referral so thats why its 62 days not 31.. Now, I know initially when my GP referred me for the ultrasound for the lump on my neck, he DIDNT do an urgent referral, but when the radiologist phoned him the following morning to tell him I had cancer, he called me in and that day said he was referring me to a consultant and putting it as urgent (and he was kicking himself he didnt do the ultrasound referral as urgent as I waited a month for it..). Anyway - the explanation from the UCH still doesnt make sense as as far as I am concerned, I saw Mughal on 7th December to agree on a treatment plan - so I should have 31 days from there regardless of whether my GP referred as urgent or not!! Plus the Marsden PALS woman asked me lots of questions about when the GP referred me and when I saw the consultant and she came to the conclusion of 31 days..
So glad you finally got something sorted, why do we have to put up with so much Ch*t from our surgeons we are human not animals.
Sorry scrap that if i were an animal i would have been treated better.
Wow flaurenoko, you've really been through the mill with this carry on. I'm glad I didn't have all that to deal with on top of a cancer diagnosis - I know I wouldn't have coped very well (probably would have just put up with the first lot and had a good old moan at home).
All the very best with your new consultant.
Flaurenoko - I AM IN AWE
You rock girl. FANTASTIC
Well, I certainly had a bug up my arse when I went down there..
I just felt I needed to do something - its probably not rational considering I was to be operated on by a different consultant anyway - but then emotions arent rational.
I was feeling helpless about my father - so this was a way to feel in control of something I suppose..
I am usually very laid back and relaxed!! Honest :)
So.. An update to to what has now happened (by the way, I find this hilarious..)
I get a phone call from the Marsden, the consultants secretary, said shes spoken to the consultant and he wants to know why I am coming to the Marsden..
She said, yes, but is it for a second opinion?
I didnt really understand the question, so went through the whole saga with her..
She was really shocked - she read the "referral" letter over the phone to me - and at no point, did the consultant actually refer me! He just sent a letter saying that I have cancer!! She also said that no pathology or imaging or notes at all have been sent through. She told me to phone my GP and get a basic referral from him (meanwhile the marsden have booked me in anyway for Friday to meet the consultant).. To get on to the UCH to get my notes sent through..
My GP was shocked. He got onto the UCH to get them to send him my notes so he could fax them to the Marsden. He is going to speak to the other doctors in the practice as he wants to put a formal complaint into the UCH for whats happened..
The PALS officer at the UCH said his heart sank when he got my message - he said to me himself that I should make a complaint alongside the GP..
The consultants secretary at the Marsden said that its all very bad, and the consultant wants to get things moving as quickly as possible.. A possible date for surgery is the 27th - which is my 30th Birthday!!
Communication between doctors sucks.
When I see my oncologist he has almost never got the info he needs from the surgeon. And they both work (at least part of the time) for the same hospital.
Bearing in mind they did extra tests on you, not sending anything through is just pissy. Sounds like your surgeon isn't giving the new guy any clues about what's already been found.
Did you ever get your bone scan results?
Your early experiences with The Marsden are sounding very similar to mine. I hope they continue that way. Get the op done if that is the date and postpone your birthday, you should be well enough to have a good time about 2-3 weeks after surgery (depending on what your idea of good fun is).
Oh, I dont mind having surgery on my Birthday at all!
Think its quite a funny answer when people ask "what did you do for your 30th!"
From the good experience I had(by and large) the communication between different depts should be excellent, but surely depends on the hospital, NHS/NHS private or independent private. All I can say is my lot at St Marys Paddington all had Monday meeting(ward round) and I never experienced disjointed healthcare. But I do see this varies hugely. Didn't UCL have a dodgy surgeon who managed to slip the net to continue botched ops up north(Ruth Picardie one 'victim').
St Mary's now trialing a robot in vascular ops.
I reckon from Kazzy's accounts Marsden will do right by you.
I just read Ruth Picardie's book and I don't think she had a botched op - she had a botched diagnosis. They told her the lump was benign and 2 years later when they realised it wasn't, it had gone too far.
Yes you are correct Barbara - you jogged my poor memory. So maybe an onco rather than surgeon. Apologies for specifics.
Apologies right back at you Oliver - we're both sort of right. She didn't botch Ruth's op but she did botch a load of other people's.
Here's the article I found:
Apologies to anyone wondering how we ended up writing about breast cancer deaths in the middle of the TC forum. As an explanation, I have been hitting the cancer bookshelves pretty heavy the last few months. Strange as it might sound, I find great comfort in being reminded how lucky I am and how many much worst cancers there are out there. I guess it's like people reading those 'my crap childhood' memoirs in order to feel better about their own lives.
I do this too Barbara :-)
I read and still read lots of cancer experience books of other people's accounts of their journey. It is comforting to be reminded how lucky we are and it's also a way of connecting with other people who have an understanding of what we've been through ourselves.
Thanks Karenjane - it's good to know I'm not the only one doing that.
I have to confess to also reading lots of other personal accounts of triumph over adversity. When you sit down and read about someone hiding from the Rwandan genocide with a dozen other people squeezed into a bathroom hidden behind a cupboard in the dark you think 'Hey, life really could be an awful lot worse'
My good news of the day - a nice low Thyroglobulin result on my latest test (0.1). That's three in a row of good ones since I had my weirdly elevated one at the time of my body scan. I'm now starting to believe it really might have been an error.
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