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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..

Tuesday 10 August 2010

It's official, I'm an inconvenience!

Update re: my appointments today.

Had my MRI at 7.00am this morning - 1st there so easy peasy, in and out in half an hour. Then went on to have the CT Scan, delays there as they were short staffed this morning (as the nurse kept saying to everyone, over and over again). My appointment was 7.50am and finally got out at 9.30am - but all done now.
No results until the 25th August though.

Then after coming home for a quick breakfast went to the GP to sort out my 2nd opinion and other bits. Saw a GP I'm not familiar with and didn't exactly get the response I was hoping for to be honest.

I explained that I wanted a 2nd opinion because the operation is so drastic and can't be reversed afterwards, therefore to set my mind at rest I have to be sure it's the right thing for me and really the only option available.
He looked puzzled (irritated puzzled actually - that sort of 'you shouldn't need to question' look) and asked why I didn't just talk to my surgical team at Kings because they could arrange for me to have a 2nd opinion there.
I explained that I wanted an independent 2nd opinion - separate from where I've had any treatment so far and I didn't feel that seeing another member of the same team was the right way to go for me.

He then said 'They are the best in London, you should be able to accept what they tell you. You can see someone else in the same team who can reassure you that it's the right thing to do'

I stood my ground and said 'No, I actually do want to be seen elsewhere by someone who has had no input whatsoever into my diagnosis or treatment plan'.
I went on to explain that the decision to go for the APR (complete removal of rectum/anus) was made prior to my MRI results being available and prior to me receiving any Radiotherapy to reduce the tumour and because of that I want to see someone else just to clarify that I have no alternative less drastic options.

Lots of deep sighing, irritated expressions from the GP and then he said 'It's inconvenient to start the process all over again when you could just see someone from the team that's been dealing with you'

I looked him in the eye and said 'Inconvenient? For YOU? What about me, my care, my health and well being? This is not something they can put back once it's removed and it's my RIGHT to have a 2nd opinion so that's what I want'. He then turned back to the computer and said you can go to one of these choices then - so I chose one that I've not been involved with so far.
I mentioned the dodgy ache and he checked the scan results and said there was nothing there in April so it's unlikely there's anything there now - I couldn't be bothered to push it by this point.

I wanted to talk to the GP about other things too but to be honest by the time we'd got this far I was too stressed to want to say anything else to him, so I left.

So I think it's now official, I'm an inconvenience and a nuisance !!! Oh well, I can live with that :-)

10 comments:

  1. He sounded like my GP until I fired him for being incompetent. He kept telling me the lump on my side and swelling in my arm was just a "thing" women had to put up with. The lump on my side turned out to be cancer the tumour 6.3 cms. The swollen arm lymphodema not from twisting it by accident.
    I was diagnosed with Stage3 Grade3 Breast Cancer. Had one breast tremoved a year ago April then second one a month ago.
    It is not you who is the inconvenience or nuisance it is your GP for treating you as if you are not supposed to ask questions. We have to be our own advocates!! Do what you feel is best for you....

    Alli XOXO

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  2. Some GP's have the most horrendous manner and attitude, and I think you were very brave, strong and correct to stand your ground.
    No-one should be made to feel 'inconvenient' like that.
    Maybe it's time to find a GP who isn't full of self-importance, and can give you the support you need.
    Personally, I think you're the nicest, loveliest, kindest inconvenient nuisance that ever lived, and you should be proud of yourself for walking out of that appointment with your head held high.
    Make another appointment today, with a GP who has some social skills. You deserve better, Carole - much, much better.
    Much love
    Shents xxxxxxx

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  3. Alli, you received such awful 'care' from your GP I'm not surprised you fired him!

    Your blog is excellent and I'm recommending that anyone and everyone read it when they get a chance (Life in Transition - on my blog list above)....

    Stay strong Alli xx

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  5. Shents,
    Thank you for the truly lovely comments. I admit to a 'small' cry when I got home from the GP simply because he made me so stressed. I'd wrongly thought that the GP would be the 'easy' bit.

    Still, am OK today - onwards and upwards eh - and I got what I wanted, an independent 2nd opinion, so in the end it's all good :-))

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  6. But don't forget to book another appointment with a different doctor regarding the other bits. I went to the doctor once and had three very quick things to discuss with her, when I got to the third, she looked at her watch and said "oh, I'm sorry you'll have to make another appointment, you have had your seven minutes already"! Glad you're feeling less stressed today, but don't let that bully put you off as your other doctors sound ok. xxx

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  7. So true Sis, mustn't take longer than the allocated time eh!

    Have to admit the previous GP I saw was excellent and I spent at least 30 minutes with her, she was so VERY kind to me....then Mr. Miserable yesterday - no point in comparing them though, some are brilliant and some are similar to the title of my blog :-)))

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  8. Grrrr...

    Like I said on CC, give me his name and I'll pay him a little visit :-)

    Seriously though, some doctors clearly have a superiority complex that although they might be doing great work, we as patients are not allowed to question them...it is they who should question us!

    Whatever decision you make, it will be bloody well informed I have no doubt...

    You are a strong person and will stay strong...keep this positiveness (is that a word) going and whilst it may wobble a bit, you will get back to it...

    Tough times ahead dear friend and we will be with you on this journey...you have come through the sunburn bum challenge(the funny title does not explain the real pain, probably nuked bum challenge would be better)with flying colours and you will pass every challenge before you...whenever I had pain I prayed and strangely heard the rocky theme in my head...I sometimes thought I was going crazy but it helped as I loved the films and knew the parts when he was up against it and powered through...

    http://www.youtube.com/watch?v=aJmr5CKY73M&feature=related

    One thing though is trust your own body and thoughts...I was told by a doctor in the hospital that I probably had a urinary infection when I had the worst pain ever experienced and thought my kidneys were going to explode - I endured it for 7 hrs and was given morphine and oramorph to dull the pain...eventually the nurse listed to me and tried to flush my catheter tube only to find it was blocked, something I had been telling them for 6 of the 7 hrs...the doctor did apologise and said maybe she should listen to the patients more....know your mind and know your body...however the secret is knowing when to trust the doctors too :-)

    There you really will think I am a nutter...

    Much Love

    T xx

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  9. Tony, I'm hearing time and time again about 'trusting your own body' and I'm in total agreement with this.
    Point being that none of us are 'text book' cases, people react differently to meds and procedures all the time but they insist on going for a one size fits all approach.

    I've learned since my diagnosis, hear out what they have to say, go home and research, research and then do more research, question and BE a nuisance (seems I've finally perfected that now) because I'm not a one size fits all and I want to be treated as an individual not a case study.

    However, common sense will prevail and I will listen to good advice, as soon as I'm sure it is good advice.

    As an Oncologist said to me at one point during treatment... 'I don't always get it right, I don't always know what will work on who, I just hope to God that it does, more often than not'
    Sobering thought eh...

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  10. Don't know about sobering thought...I think that just turned me to drink!

    Spoken with Dr K yesterday, amazing, she told me about the lady I think you may have spoken to in the week? Her results are looking good!

    Integrative is the key and your outlook as well as mine and a few of the crew on here should start something in order to get the train of thought and our experiences out to the masses.

    We will not be telling people 'not' to listen to the oncologists and surgeons only to take all angles into account and be an official nuisance!

    Much Love

    T xx

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