Its been hard lately

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Where does one begin at the start..

End of November 23 as nice had brought in  new guide lines,, for   lung,  cancer patients had to have a  Brain mri scan, no problem thinks i.. 

Went for the results and i had what they called a blip, they did not know what it was, told maybe a stroke, a small bleed or cancer. and was referred to a big hospital in London.

I see a Nero surgeon, who ordered a special scan, this blip still there and had not grown, after another scan went back, told i had a new primary brain tumour.

I was  knocked sick.

Then another scan and the results where, no it is cancer come from the lungs, this was the 7th June.

I was informed how they would go ahead, 4 hour operation, and what problems, it may or could cause.

I was devasted to say the least, but an MDT meeting was taking place, 17th June, and i would get a call that day, i waited 12 hours no call.

I phoned to speak to the sectary she does  not work on a Tuesday, ok will call Wednesday.

I  had my 3 monthly review on the Wednesday with my Oncologist, i told her what had been going on, she was dumb founded, and told me, my review was still stable.  for my lungs.

All the letters i had from the big hospital , saying what was going on, she did not have any of them. Glad i took all mine, and she photo copied them to put in my files

I phoned the sectary when i got home, she informed me a letter us being sent, which i got today.

Another scan in August and seen the  surgeon in September.

The letter reads, had the MDT meeting, and the Radiologist, now do not think its a tumour, or come from the lungs.

Catch 22 situation, not a nice place to be, though onwards and upwards, got to pull my self together.

It has been a hard time, mentally, lost my sparkle and mo jo.

Though come Tuesday  am getting my cataract done  

  • Uncertainty and confusion is so hard to deal with on top of everything else. I hope you get clarity, and some sparkle, soon. 

  • Oh, Ellie, I really feel for you!

    The lack of direct communication between all the specialists leads to this kind of confusion....do they not realise what an effect it must have on the patient? I am glad your son went with you to the review, so you had some family support.

    At least you can gather your inner strength and prepare for August's scan. Maybe they will all be in agreement by then!

    And, after your cataract operation,  you will be able to see much better, which will make your life easier, and more interesting, if you can read more easily again. Try to put your energies into that for the next few weeks. There's only so much one person can stress about at one time!

    We will all be supporting you, and here for you if you need a good rant.

    Thank you for letting us know what has been going on for you.

    Hugs

    Kate

  • Hi  I knew you were due results, but didn’t like to pester you and ask, I knew you would up date us when you were ready. 
    Like you, not really sure what to make of all that! So maybe surgery not needed after all ?? 
    it certainly feels like you have been pushed from pillar to post since the initial brain scan. Makes you wonder if the NICE guidelines are correct, or whether to wait for symptoms because all the worry it has brought you and your family, it makes you wonder if it was worth it?

    It makes me sad to read you have lost your sparkle, but you will always be bright and sparkly to us! I really do hope that the August scan brings better news. Let’s celebrate that the lung scan is stable! That is really great news, and a shame for it to get missed amongst all the other worry you have. 

    Good luck with the cataract op, you will definitely feel better once that is done. Thinking of you x 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

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  • So sorry to hear your news thanks for updating us I know how exactly you feel I babysitter  lost count how many times I have been miss informed and communication between hospitals and the gp not having the correct information between them the stress and anxiety is hell to go through when you are dealing with so many issues going on with one self I really hope you get sorted soon and in time you will get back to your sparkle and mo jo back we will all be rooting for you here as you always support everyone on here I hope your cataract op goes well for you sending you huge hugs and love xxxxxxxxx

    Flippen
  • H Ellie no wonder you've lost your mo Jo and sparkle, having been through what you have over the last 6 months. I can remember our chats last year when you were waiting for your first scan  by the scanner with the name we couldn't remember, and wondering what they were looking for, and now all this  time later not only do you not have a diagnosis, it seems you are further away from one, and  through all this you have carried on supporting others offering a shoulder to cry on and advice to others like only you can. Ellie i  know your going to say your not but to do what you do  for others while dealing with your own problems shows what a wonderful kind and brave lady you are, and  i for one am grateful  for all  the support you have given me, and hopefully for a long time yet. Big girls knickers time Ellie, and thank you for sharing and best wishes with the eye surgery.

    Eddie xx 

  • Hi  

    I'm very sorry to read of all the carry on and confusion you've had to deal with. It must have been devastating to be told that news, which in the end, thankfully, wasn't the case. It's understandable that you've lost your mojo at the moment. You take it easy and do things you like to do. I hope your cataract op is straightforward and your recovery is speedy. Take care Ellie, you'll be back on form soon.

    A x

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