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I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..

Friday, 30 September 2011

Bone Scan update........Friday PM.....

As you know from the post below I got my CT scan results via email yesterday.

Since then a few emails have gone backwards and forwards to my nice colorectal nurse, L....

I mentioned to her that I'd appreciate them (colorectal dept) contacting my GP to advise on the bone/bone scan issue as he was waiting to hear from them and wanted advice on referring me first. I also mentioned to L that my Osteopath is now sure it's bone related and most definitely NOT muscle issues.

L emailed me back this morning and said GP could refer without their say so but if I wanted her to then she would ask the CT Radiographer to review my recent CT scan as sometimes bone changes do show up on CT'. She mentioned that although they'd not commented on anything they were concentrating on the left lung area - so she could ask them to review the scan just in-case.
So I decided that yes, I did want her to.
I also said that if the Radiographer was sure and the CT showed nothing untoward then I'd put the idea of a bone scan on the back burner for now and concentrate on my Osteopathy for a while. I said I didn't want any unnecessary scans but that I did really need definite answers - so if I could get this from the CT then this would obviously same time (and money)

Fast forward to this afternoon and L again emailed me and said Radiographer had got back to her after fully checking the CT and has seen nothing to raise concern HOWEVER he has stated he would fully support the decision to refer me for a bone scan so.... 'would you like me to go ahead and organise this for you Carole'........

Now, let me think about that for a minute.....Ummmm, YES! Yes, I think I would :)

Sorted :)

Yay to my Radiographer and also to L, my Colorectal nurse - and to Martin the Osteopath for confirming it's not muscle pain - and big Yay to me for continuing to be a persistent nuisance - lol :-))


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15 comments:

  1. ALIAS30 September 2011 at 22:02

    My faith in the health system has been somewhat restored!!!

    Being persistent pays off once in a while :-)

    'Fast forward to this afternoon and L again emailed me and said Radiographer had got back to her after fully checking the CT and has seen nothing to raise concern'

    Good news Good news Good news!!!!!!!!!!

    xxxxxxxxx

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  2. Carole30 September 2011 at 22:17

    Being persistent is the only way to get things done...problem is that sometimes you get sick of it all and want a day/week/month where you don't need to even think about it, never mind keep chasing things up.

    Anyway, I AM persistent, I AM an Official Nuisance and as long as I'm around, I don't plan on changing! :)

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  3. shents1 October 2011 at 08:47

    I wish you didn't have to be a world class nuisance to get this world class service....

    ...but I'm glad you are!

    This is all very positive Carole :-)

    Much love xxx

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  4. Author Doctor1 October 2011 at 09:33

    It's so sad that one DOES have to be so persistent and a "nuisance" as you put it.

    Quality of communication between health professionals is very variable. Since the GP is often the lynch pin it does make her/his job more difficult if not kept in the picture.

    I have seen very sick people and their families just not knowing what is going on or what is planned for them, and that makes an often frightening experience even worse. Quite understandably and reasonably the GP is then called to sort everything out, which many will do heroically. But it can take hours! - time than could have been better used if the mess up hadn't happened in the first place.

    All best wishes for what lies ahead for you. And strength to you and your family.

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  5. Dr Henry Tegner1 October 2011 at 10:03

    The pity is that you have to be persistent and an "official nuisance" as you put it.

    Good communication between the various sections of health service staff is essential if care is to be delivered smoothly, effectively and safely.

    It must be very difficult for patients and their families when communication lapses occur and this is so often when the GP is called "to sort things out". Many GPs will endeavour to do this heroically, but it can be frustrating and time consuming, especially when you are confronted with a response such as "well it's very difficult to arrange these services on a Friday afternoon" as I was recently!

    But illness and complications don't, unfortunately, confine themselves to convenient working hours.

    My best wishes to you and to your family in all that lies ahead of you. May you find strength.

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  6. Carol1 October 2011 at 10:18

    Yay!
    Good for you Carole!
    I am really pleased that there is nothing for concern to be seen.....good for you being persistent.
    Hope that you get your scan soon, and QUICK results!
    Great news!
    Hugs
    Carol

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  7. Medical Shaman2 October 2011 at 00:19

    i agree with your comment, Carole.

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  8. Carole2 October 2011 at 15:23

    Hi Author Doc & welcome :)

    It IS a shame when GP's find themselves taking over the care of a patient with limited information to work on.
    In a previous post I discussed how what he *had* been sent was factually incorrect and I question how he can then be expected to provide me with proper care when important facts are completely missing or wrong.

    As you say good communication is necessary between departments - HOWEVER I do believe that as individuals we must each take responsibility for our care, question, inform and then question again if necessary.
    Gone are the days that people should take something without even knowing what it is just because 'the doctor said I should'....

    I'm happy with my official nuisance role - I don't intend on resigning any time in the near future and a bit like *'Bob Crow' they'll just have to put up with me for now :)

    * Bob Crow is a Union guy, the thorn in the side of transport bosses (for those outside the UK thinking 'Who the hell is Bob Crow?'..) :)

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  9. Tony Songhurst2 October 2011 at 20:47

    An official nuisance gets things done...I am sure we have a better chance of cure if we are well informed and know what is and may happen to our bodies against letting things happen to you and being a victim....In recent months I have spoken to several people at my 'specialist' cancer hospital and they have no idea or yearning to what treatment they are having or what may be available. I am absolutely sure that had I not had two second opinions which both noted Avastin, I would not be in the position I am today.

    Keep doing what you are doing.

    Much Love Dear Friend

    T xxx

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  10. Carole2 October 2011 at 22:03

    Hi T,
    It always surprises me when people choose to be 'detached' from their treatment plan...mainly because I simply couldn't visualise myself just going along with things without questioning along the way.

    I'm also of the opinion that had you not done your research, your plan could be going in a completely different direction by now.

    You also keep doing what you're doing T xxx

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  11. Fiona3 October 2011 at 15:34

    I’m being thick Carole:
    The osteopath is sure your pain is bone related. The CT radiographer said the CT showed nothing to raise concern, but yes you should have a bone scan? Does that mean the radiographer couldnt see any bone issues but couldnt rule it out either, and a Dexa scan will confirm things one way or t’other?
    Does the ‘nothing to raise concern’ relate just to the bone issue not being visible on the CT, or does it include the left lung area that there were earlier concerns over. Is the radiographer saying that although there is something there that may now be slightly more prominent’, it’s not obvious what it is so no need to flag it up as a concern?

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  12. Carole3 October 2011 at 21:45

    Hi Fiona,

    You're not being thick - it gets confusing once they all start getting involved :)

    The lung area is still a question mark as they've said 'something' is there but it's too small to be diagnosed.
    This scan (12 wks after last one) shows it IS still there and may possibly be slightly more prominent.
    Lung team have now reviewed and also said 'too small to diagnose at the moment so rescan in 3 months'...So in short, the lung is definitely still a question mark.

    CT Radiographer said he couldn't see anything obvious however he'd support the decision to bone scan me as the pain is being caused by something..
    CT can pick up changes but is not as reliable for bones as the actual bone scan apparently. So, yes - although nothing obvious is jumping out at him he's unable to rule things out

    xx

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  13. nancyspoint4 October 2011 at 22:39

    Hi Carole, You go right on being persistent. I find I don't really care if I'm a nuisance anymore if and when I find it necessary to be exactly that! We wouldn't be if we didn't have to be, right? My best.

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  14. Carole5 October 2011 at 17:57

    Hi Nancy,

    Happy Pinktober - LOL! (I'm just teasing you of course)...:) xx

    I also have no qualms about being referred to as a pest! If I'm a pest then they won't forget about me and also it reminds them that WE have a say in everything to do with our treatment and our care.

    I've been interested in your views on the 'Pink month' on your blog...for anyone else interested, do go check out nancy's blog - click on her name above and it'll take you there.

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  15. nurse7 October 2011 at 13:19

    Good for you! Keep advocating for yourself.

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