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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..

Sunday, 18 July 2010

The path to follow........

Over the past months since being diagnosed I've talked sometimes about the colostomy bag, removal of large parts of my body and how I'm not really dealing with the thought of all that too well :-(
I've tried to put it all to one side but to be quite honest, it's not possible to sideline this....it's always there in the back of my mind and as much as I try to push it back. it just resurfaces again.

I have these continual questions that surface again and again, such as what if they do this huge operation and this damn cancer reappears in my liver or lungs or bones or brain...I'd have had the op for nothing because the battle would start all over again with far less chance of sorting it out...

Other questions such as, in the US I'm finding information about giving 25 sessions of Radiotherapy and combined Chemo to SAVE the rectum/anus and concentrate on removing the much smaller tumour once it's shrunk. Here we're giving this huge amount of Chemo/Radiotherapy in order to then remove the rectum - no intention of saving anything.

I asked this question before my treatment started and the answer truly shocked me....
'Is there any chance that the Chemo and Radiotherapy could shrink this tumour enough to enable the rectum to be saved and just have the tumour removed with a decent safe margin?'
The reply was 'There have been cases where the tumour has virtually disappeared after treatment but it's unlikely that your surgeon would be prepared to take the chance on not removing the rectum just incase a single cell is missed and then the tumour could resurface'
He then went on to explain to me that there have been cases where the whole rectum and anus is removed and NO remaining cancer is found!
I don't know if that information just shocked you, but it definitely shocked me!

That information then gave me something to think about because quite frankly I'm not having a large part of my body removed 'just in-case'..that's like saying 'We'll take your eye in-case you go blind later on'....

I know that some people are going to find this hard to understand but I'm not prepared to have the operation under those circumstances. I've now decided that there are set circumstances that I AM prepared to have this surgery under which is:
  • When I meet with the surgeon and his team on the 25th August and we discuss the latest MRI/CT scan results IF there has been NO reduction whatsoever in the tumour then I accept that I have no choice and have to go ahead with the op early September as planned
  • If the tumour is actually larger than it was in April - no choice other than to go ahead with the op, early September.
BUT if the tumour has reduced in size I want extra time to work on it.

Over the past few weeks I've researched everything I can on Cancer and Diet and there seem to be many connecting factors. Numerous information from different sources out there are continually pointing to the fact that you CAN make a difference by diet. The same food groups and supplements are mentioned again and again and it has to be more than just co-incidence?

I'm not saying I can 'cure' myself of cancer (although maybe I can, other people have done so in the the past) what I am saying is that this is a slow growing cancerous tumour, I've had it for years now and it's not going to kill me overnight - therefore surely I have time on my side to try to get it into remission myself or at least try to get it considerably smaller so that it's not affecting my life drastically or becoming life threatening by growing to a size where it will block the bowel.

So if it's reduced in size I intend on asking them for more time to see if I can make a difference before signing on the dotted line and allowing them to go ahead with the op. I owe it to myself to try IF it's smaller on the MRI scans.
I don't intend to play with my life here, if it's still large or worst case senario 'larger' than before, then I'll be a good patient and do as I'm told.

Maybe you're sitting there thinking now 'She's lost it' 'Gone mad' 'Silly to take a chance like that' but I'm not bothered by that to be honest.....time will tell if I've 'lost it or not'.

For the past few weeks I've put changes into place food wise and over the last week I've now decided which supplements I think I should be taking in order to try to make things better - From two days after starting to take the supplements I've taken no painkillers at all - nothing. Not even a paracetamol because all of a sudden I've not needed them!
Maybe co-incidence who knows, but I've not needed them and that's relevant at the moment considering I've been on painkillers constantly since November 2009.

Today I've had enough energy to go out for lunch with Rab, clean the kitchen from top to bottom, do numerous loads of washing, sort out dinner later on, and I'm still awake now and have energy left over.
Yesterday my gums suddenly stopped bleeding and I'm seeing no blood whatsoever from other areas now.....the area where the tumour is sited is no longer painful to touch, I can suddenly sit in one position without feeling intense pressure on my spine...

If these improvements are real improvements and this is proved on the results of the MRI/CT scans then I shan't be rushing to have the operation.
Instead I shall be looking into seeing a Doctor who has been recommended to me with regard to nutrition and holistic care, sticking on my healthy eating and supplement plan, and asking them to rescan me in December...
So much now depends on those scan results I guess.
Comments anyone? :-))

1 comment:

  1. Sis, I think you are being very sensible asking yourself these questions. The doctors don't always get it right but they also are very experienced and I'm sure someone has asked these questions before without signing on the bottom line. If not, then they need to prepare themselves and you may have to "give them time" to think about your questions and decisions. As we said all along, take day by day and I know you well enough that you will do the right thing as and when.

    My flight is in 14 hours, I'm so looking forward to seeing you all, and we can bounce some more questions off the wall! Was hoping to bring the sun with me but looks like I can't fit it in my suitcase. (although, I haven't even started to pack yet.) see you very very soon, lots of hugs xxx