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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..

Monday, 3 May 2010

Choosing the moment

This post is about choosing the right time to tell people about what is happening to me.

I discussed the results with my husband, Rab, once I'd got my youngest son settled into bed on the evening of the 28th. He was very calm, quiet and practical. I explained about the diagnosis, surgery, follow- up treatment and how I felt about the colostomy bag, wondering how it would affect our relationship, and then cried some more.
He said "it won't change anything, I'm not going anywhere and I know two people who have these bags -they're not huge, no-one will know unless you decide you want them to know and your option is to have the bag or just give up and die"...

When you look at it like that it makes you realise you really don't have a choice - well actually you do - either get your head round having a colostomy bag and give yourself a good chance of recovering from this OR just give up and wait to die !!!

As stated in the previous post I have not yet told my mum and dad or my sister - although I've wanted to. My reasons for this are right in my mind and I don't regret the decision to wait and nothing they say once they find out will make me think I was wrong (I've always been stubborn, as I'm sure my mum would confirm :-)...)

In October 2009 my lovely sister, Sarah, moved to Greece to start a new life over there. She came home to the UK for a two week visit in February and I already knew I was unwell by then, but didn't know it was Cancer, I still thought it was the beginning of a Lupus flare at this point.
My mum and dad had a holiday planned for Sunday, 2nd May to go and stay with Sarah for a week - my decision not to tell them what was happening was based on this.
I figure that this is going to cause enough worry and upset once everyone knows, so there's no harm in them getting to enjoy their week in Greece with my sister first. It was important to me that they get this time with her, and also important to me that Sarah was the priority for this week.

Also, knowing my sister the way I do, had I told her in advance what was happening she would have booked a flight and came straight over therefore the holiday with my mum and dad would have literally been ruined and I just didn't want that to happen.

I will fill them in when they come back, hopefully having had a lovely relaxed, stress free time. At least I know they'll be refreshed for what is ahead :-)

Spoke to my friend Louise after the initial appointment with the Surgeon on the 14th. As always she was supportive and made me think only of positive things. I've not filled her in on the full picture as yet because she was going off on holiday to Cornwall with her mum on Friday 30th April and it can wait til she gets back.
Nothing much will change in the next week and at least she can enjoy her break first that way. Have no doubt we'll shed some tears next week and also share some laughs about it along the way as we always do.

Filled in my work mates on 29th when I dropped my certificates off. Got outside and didn't feel I could go in, so text Hazel and she came out to me.
Gave me a huge hug and said we'd go in the back way, said she'd make sure no-one stopped me and we'd hide away in a back room to talk. Christine made us a lovely coffee (after she'd finished knocking over the first one - made me laugh and feel that at least something was normal for a while) and I talked to Hazel about everything that was happening to me.
She was extremely supportive and talked alot of sense in a calm and controlled way - it was exactly what I needed to hear as well.
She's right, I will get through this, I will fight and I have so many people around me that will help. I can't imagine going through this without support, it's hard enough WITH it. Hazel has alot of problems of her own to deal with and I felt guilty putting even more onto her but she assured me that she would have been hurt if I hadn't told her the full story and would do anything she could to help me, all I have to do is say the word.
I'm so lucky that so many people have said 'Let me help, what can I do, what would make things easier'....

I first spoke with my eldest son, James, after the initial meeting with the Surgeon on the 15th April. I then met up with him on the 29th and gave him the full story as we know it so far.
Obviously he was upset but he's tough like me on the outside and simply wanted to know exactly what he can do to help me through this.
I know that when he went home he may well have had a long cry (can relate to that, I've done plenty of crying lately) but like me, he'll get past that and start to think practically.
The support from him and from his gorgeous wife, Leanne, will help me through this. They are both fantastic people and if I get myself in a mess they'll drag me back up again to face the next day.

I've also filled in two of my youngest sons best-friends parents (Carrie and Nayla) as they will be supportive in helping out with his care after school if necessary.

My youngest son, Djamel, is only 10 years old so I needed to get my head round things properly before I spoke to him. I finally tackled this on Saturday, 1st May.
As I expected he cried - but not in a hysterical way, more silent tears streaming down his face.
Then we discussed how he felt about it all. He said he didn't know how he was supposed to feel but said " I feel sad, confused, angry, happy, worried and I HATE Cancer". I assured him that everything he was feeling was completely normal and he should just tackle each one as they appear and discuss with me anything he wanted to and ask as many or as few questions as he felt he needed to.

He said he was worried that if things changed and I WAS going to die that I would lie to him and say "it's going to be alright".
I promised him that if my diagnosis changed at any time in the future I would be honest and inform him so we could plan a brilliant holiday as a family and do stuff while I had time and energy. He seemed happier after this, but I expect him to really go through the mill over the next few months.

Got together with my brother, Eddie, on Saturday evening (1st May). He was shocked but supportive and we had a little cry together (I shall have no liquid left in my body at this rate) but then moved onto what he could do that would help in anyway - whether taking Djamel at weekends or simply talking to Rab whilst I was in hospital and making sure he was coping ok - or whatever I needed him to do.

Finally, Jacqui.......I want everyone who cares about me to know exactly what Jacqui has done for me these last few weeks. She's been a close friend for years now but when I say I couldn't have got through this last few weeks without her help, I mean that 100% sincerely.
From my first conversation with her some months back (my bum's sore, maybe I've got piles - and her telling me YOU need to go to the GP and then reminding me again and again until I finally did) right through to my meeting with the surgeon on the 28th, she has been a complete rock. Attending appointments sometimes sitting there for hours on end with me, running me backwards and forwards with her lovely husband, Pat, to hospital appointments, offering continual support, letting me cry, crying with me, finding things to laugh about, buying me two lovely bunches of spring tulips, texting me every day and also offering practical support with shopping, washing, looking after Djamel or just being there for for him if he starts to feel swamped by it all.

She understood completely my reasons for not wanting to let my mum, dad and Sarah know until I had full results and stepped in to support me in exactly the same way that they would have done. Thank you Jac x

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