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[Menomale]

Hi Lynne,

Just read it, you're a damn good writer (as I already suspected). I couldn't access the comments though, so I just want to say that to have no faith in people's words and to be angry would be my reactions too. As babyjane has pointed out, I'm not in a position to offer advice, but I'm here to read, listen, chat, take your hand (virtually, unfortunately), send a big hug, whenever you ask.

[ancient runner]

Nice read Lynne!

[Evelyn63]

Oh Lynne, my heart goes out to you, what a carry on, its So unfair, you did everything right at your end, but sadly the outcome is not the one you were told to expect !  You are really gifted at writing, its like you are speaking personally to your readers and Im sure your honesty, bravery and humour will help many others facing similar diagnosis and subsequent treatment.

I wish you well with all my heart and hope your results are the best that can be hoped for

[Lynne888]

You're all too kind.. I write like a child.  This is a better link if you do want to leave a comment and I'd love it if you did!

http://whencancercomescalling.blogspot.co.uk/

I Did speak to the cancer nurse after I had spoken with the consultant and she filled me in on the bits I'd missed! 

Thank you all for your continued love, hugs and kindness... you're SO lovely!  xxx

[coldethyl]

well done for writing it down. It can help. I can understand your frustrations and my own diagnosis wasn't that straight forward as my link nurse misread my report and told my husband that it wasn't good news that my womb cancer had spread- it hadn't - I had two primaries, one of which was the on my ovary and that had shown  biopsy mets on other ovary. They are no infallible and no test is either- my ct scan showed no signs of anything other than mass on ovary but they do only show tumours bigger than a cm generally, my surgical reg said there were clear spaces between my ovary and bowel and I'd not need bowel prep or to worry about surgery- I ended up unprepped and needing emergency bowel surgery as tumour fused to bowel wall!! It is easy to feel bitter and angry towards them- it is a normal reaction and I know I have taken an almost irrational dislike to my link nurse and my surgical team. You need something to focus all that hurt on so why not? All I can say is that the oncology lot have been better.
Keep writing. xx

[Hurdity]

Hi Lynne - I did comment on your other thread but somewhat belatedly also doing so here - just to say again so sorry to hear about your diagnosis, and wishing you well in your treatment - and hoping that news re the biopsy will be positive ie the cancer is limited to the polyp alone.

Take care 

Hurdity xx

[marras]

Hi Lynne, first of all I'm so sorry to hear all you have been through and the delays in getting the diagnosis. As has already been said, CT scans only show anything that is over one and a half centimetres and I had an all clear CT scan but they found secondary cancer on my rectum when they opened me up. Also, I had a very painful colonoscopy as well and yet there are loads of people who just sail through it. Although my cancer is appendix adenocarcinoma, because it is so rare, there isn't a chemo specifically for it, therefore I'm having chemo for colon cancer. I've already had extensive surgery where they removed all the cancer and I'm now having belt and braces chemo. What I can tell you is that it isn't as bad as you think and you will get through it. It isn't as harsh as chemo for breast cancer.  They give you drugs to deal with side effects and look after you really well in the oncology unit. If your cancer is contained, however, you may very well not need chemo and they may just remove part of your bowel which sounds horrific but actually isn't as I've had two large bits of mine removed and here I am six months later eating everything and having better bowel movements than I've ever had! Sorry if TMI! The waiting is the worst of it and once things get underway you'll cope admirably simply because you have to. Take comfort and support from your family and friends, beware of positivity bullies, rant and rave and have a good cry and then take one day at a time. Everyone on here is fabulous and a great support. Big hugs.xx

[coldethyl]

MArras, I love the phrase " positivity bullies." It is up there with the whole "fight" cancer language that deeply offends me. No other illness seems to attract such language - no one told my father in law that he had to fight his altzheimers , yet even my gynae link nurse asked me if I was going to fight it!!!

Lynn, as Marras says, you might just need surgery and nothing else but even if you do need more, you do find the strength to cope - and people surprise you in their support. It doesn't always come from where you expect it either. X

[Menomale]

Excellent post Marras.

[Lynne888]

Brilliant Marras  (sent you a PM).  Agree regarding Positive bullies coldethyl... if only one of my friends would say 'I know you're terrified and I'm damn well terrified for you' it would make all the difference! Im even more bothered now I know that the CT scan won't have picked anything up under 1.5 cm. I'm probably riddled.  It's a week tomorrow since I was told.. still no MRI appointment. I shall ring them tomorrow afternoon if I get noting in the post. 

[coldethyl]

Try not to worry. I think ct scans do pick a lot of small stuff up it is more that they can't properly distinguish what it might be when it is very small. 
I find the whole positivity stuff annoying tbh . I wasn't a positive person before this so why would I be now? I prefer to talk about being realistic and focussing on one day at a time. X

[CLKD]

..... do give them a ring.  Are you able to take a cancellation at short notice?

....... and don't get me started on "Are you going to eat more healthy foods now?" .........  as a recovering anorexic I knew exactly what I put into my gob  and as we are family who have grown own fruit and veg. for over 100 years and counting  ....... that is on both maternal and paternal ......... I had a knowledgeable background of healthy 

[Lynne888]

..and those that  ignore you because they don't know what to say!  Just say *I don't know what to say* and then move on and talk about normal stuff!! I've put this on my blog! I'm going to enjoy that blog! I don't need to have a filter!!!

[coldethyl]

..and those that  ignore you because they don't know what to say!  Just say *I don't know what to say* and then move on and talk about normal stuff!! I've put this on my blog! I'm going to enjoy that blog! I don't need to have a filter!!!

Or people you don't really know that well asking you  " what's your prognosis?"
I've never asked my team as I wanted to get through chemo believing it is going to work as its hard enough to do without thinking what's the point.  I know enough for me , yet a friend told me I owed to my family to find out exactly - you soon learn with cancer there's no exact and your oncologist can only talk in general figures which are by their nature at out of date as survival rates move with new treatments. Reoccurrence is possible at any time and I've met people on unit who have been cancer free for 22 yrs and now are terminal so none of us are guaranteed a cure, just remission. I was so angry as people seem to think that they can say what they like to you - including the " you might get hit by a bus tomorrow ." Yes , I might, but I am not facing that quite as up close as possibly not making it through cancer.

[marras]

Lynne, you should be on the 2-week rule so should be seen within that time otherwise, apparently, the hospital gets fined.