Unsuccessful treatment!

Hi All

I was hoping to be one of the lucky ones, to post that I had beaten this, but it looks as if that will not be the case.  Had all the chemoradiation , was admitted twice during this period and have now been left with severe neuropathy in my bowel, legs and feet.  Had my post treatment MRI and although I knew the tumour had shrunk, it was 7.3 cm x 3.6 cm, things still do not appear normal, in additional I have a swollen central abdomen lymph node , so that are thinking that it has spread.  Have a PET scan tomorrow to confirm and I guess to see if there is any small cell development any way else.  I kind of knew that all was not well, as I have had pain on the right side around my liver area for the last three weeks.  Worried about more chemo and radiation as they can give me more as it won't be in the pelvic region, has anyone else gone through this, it seems that lots recover from stage 2b , but my journey is not over.  Just want to know how to fight this , without losing my sanity.

Oh Zippy

I am heartbroken to read this. I always have such high hopes that we will all beat this, that none of us will slip through the net. I feel almost guilty about the fact that I appear to be recovering successfully from 2b, but there are plenty of other women here who will be able to offer you advice about where they found their inner strength when the going got even tougher.

Please tell us what your PET scan shows, though I have no doubt that you will.

Huge hugs and lots and lots of love

(((((HUG)))))

xxxxx

Tivoli

Hi Zippy

I am so sorry to hear that you are still having to fight this horrid disease.  I thought my fight was over following a clear scan but then the little floaters took residence in my lungs and I have to say I was quite offended and decided to evict them as soon as possible!

Jocking aside, I was devastated when I got the reoccurence news.  The fear was overwhelming, how was I going to cope?  So I decided to leave the treatment of my body to the Dr's but I wanted to take control of the treatment for my mind and soul.  I booked into see a councillor and I can honestly say its helped save my life.  She pracices something called Mindfullness and she taught me some good techniques to keep the 'fear' under control.  She said the following and it really struck a cord with me:

The Future is fantasy, the past is memory and we just need to concentrate on where we are in the moment.  Ground yourself.  When the fear starts to overwhelm you, look around you.  Feel yourself sitting on the sofa, what does the fabric feel like?  Who are you with?  Feel the love they provide, get a hug!  

It sounds simple but by concentrating in the moment and just breathing through the fear and the discomfort my body was in, I was able to move forward.

They got rid of the cancer in my lungs through chemo, not radiation.  Dont loose hope as there are still treatment options and they DO work.  Be kind to yourself and take it one step at a time and know we are all here to support you.

Much love

Anna xx

Thank you all, it's amazing that a few words from those in the thick of it can make us help better. No news from the scan, only that the report was not completed in time to be discussed at the MDT, so I will have the joy of waiting until next Friday.  The pain in the right side is getting worse, and I have had to up the MST morphine.  I received a letter today from the consultant putting things into black and white, they are hopeful things can be managed , a change from the first letter which was hopeful of a cure! 

So my life is on hold for the foreseeable future.  Weekend ahead of me , DIY to keep my mind busy.

 

Hi Zippy,

Keep strong honey(((HUG))) It was harder for me the second time,

and like Anna said getting your mind straight is the way forward.

I have a fantastic therapist and I would have been lost without her.

You will have bad days like all of us,but keep in touch and we'll help

as much as poss.Everything crossed for you X

All the very best.

Take care

Becky xx

Hi Zippydoda,

Sending you a great big hug x x x

A hug from me too, Zippydoda! Hope the DIY goes well and gives your mind a rest. :)

xx

Hi Zippydoda

So sorry to hear what you are going through.  I really hope you turn the corner soon and things start to improve for you.

Sending you big hugs, strength and courage - we are all here for you.

Cheryl,xx

Hi Hun, sending you ((((hugs)))), keep us updated. All my love lea xxx

Hi ladies

Well the weekend brought the news that we all dread, in our mind we think that we have our way of dealing with it , and it never seems to be the same hearing those words.

It is confirmed that despite the treatment , mine has spread to my para-aortic lymph nodes.  Still unsure of the state of my cervix so they want to do EUA and biopsy.  My family have been told, however I don't think they realise the seriousness of that phone call.  It is hard to get my head around, part of me is angry and another is really scared.  

My daughter (22) is not dealing with things well, and I don't know how to help without making her feel worse.  

Tomorrow I see the consultant, have my questions ready, and tissues.

 

Hi Zippydoda, so sorry to hear your news and also your daughter is finding things hard - it's a horrible time for you all.

Write down your questions so you don't forget any. Do you have a MacMillan nurse at all?

I hope you get all your answers at your appointment tomorrow. Keep us updated and we're all rooting for you.

Lucy x

Hi Zippy,

I hope things went well with the consultant today and that you are developing a coping strategy. You have always come across as level-headed and I feel sure that you will find a way to manage on your new path.

Sending you lots and lots of love

Tivoli

xxxxx

Big hugs Zippydoda

Sending you all my love for this next stage in your journey 

Xxx

Hi Zippydoda

So sorry to read of the latest development.  Keeping everything crossed for you that the consultant can give you something positive to go on.

We'll all be here for you supporting you in whatever comes your way.

Big hugs

Cheryl,xx

Hi

Saw the consultant , who appears to be fighting my corner, he said options did include doing nothing curative, but he is not ready to throw in the towel in would seem.

Thursdsy they are doing EUA, to see the extent of damage to cervix and uterus, biopsies will confirm extent of active cells, will then be reassessed next week.  More waiting but in some ways I feel a relief at this point as at least for a week or so I can try to go on as normal.

my partner has been a rock, had some opportunity today to cry a little, I am glad he also has the support of the CNS and consultant.  Thank you for the opportunity to just write down what I feel with some sense that you all know how I might be feeling.

Still lots of options there, but a clear picture that this may be a bigger fight.

Thanks for the hugs and prayers