Monday, 16th - Dj saved a life :-)

Djamel wants me to share this with you all -he's a 'life saver'....

Around lunch time today he came to the kitchen and asked what Dizzie the cat was doing in my room banging around and scratching everywhere (Dj's not allowed in my bedroom at the moment as it's almost his birthday and sometimes things are in there that he's not allowed to see, so initially I thought he was just finding a way to try to get inside)

I told him that Dizzie wasn't doing anything in my room because Dizzie wasn't inside, he was out in the garden. At this point he looks genuinely scared and says 'Well what exactly is making that strange noise inside your room then?'

We go together - me expecting to hear nothing but he's right....a really strange banging/scratching noise is coming from inside the fireplace!
Blast! must be a bird that's fallen down the chimney...but then I get this other mad idea that maybe it's a rat or something dodgy....the scratching really doesn't sound like a bird at all.

So together we move furniture and peek inside the vent with a torch to see.... a young starling that's fallen down inside.

I ring Rab and he says he'll be about half an hour (he's the one that deals with things like stray birds in fireplaces - I don't 'do' things like that because I'm too scared of hurting them/damaging wings etc when I get them out).

Djamel being his normal (impatient) helpful self decides to unscrew the vent so when Dad gets home there's less for him to do. I tell him to only take 2 screws (so of course he takes 3!)....



Two minutes after Rab gets home the bird pecks at the vent determined to try and escape and it comes flying off and the starling is then frantically flying around our bedroom like a crazed thing bumping into everything and pecking whatever he lands on in his blind panic.

Rab's running from one side of the room to the other attempting to catch him, Djamel is shrieking and saying 'No daddy, this way - oops, no actually 'this' way now, over here, look over there, now he's gone this way' and Rab says 'Look, I'll catch him but you need to just shhhhh! for a minute' (in other words, just BE QUIET for one minute) LOL.

Eventually after about 10 minutes, I say let's just open the window and see if he'll go out himself - so the daft bird then crashes into the closed window and stuns himself - Rab grabs him quickly....much to Djamel's delight.
Rab calms the bird down, who then repays him by pecking him really hard on the finger - at this point Rab decides time for him to go and releases him out of the window to freedom.



Djamel says 'I saved his life' ....

Just another normal day then :-)

Disappointed ...to say the least

I'm really unable to talk about the effect this has had on me emotionally at the moment but yesterday I had my appointment at an alternative hospital for a 2nd opinion.

I saw a very nice, very kind consultant Mr K who explained in his opinion that there was NO alternative for me. The tumour is sited too low to even attempt any alternative treatment so it has to be removal of the whole area and this of course means a permanent colostomy bag and stoma.
He said it was a very 'unfortunate' cancer (which basically means hard to treat, hard to stop reoccurance, hard on me)...
He went on to say that even if the tumour appears to have died, I should still have the op incase it comes back again - however........we'll cross that bridge if we ever get to it.

Emotionally I'm wrecked, this was the 'last chance saloon' really and now I have to face facts.
Hard, so hard and I've cried so much now in the past 24 hours that I find myself thinking I must be all cried out now -then I cry some more. I guess I have to do this until I am all cried out - then move on.

It's not just the bag, although that's a HUGE part of it all, it's the idea of my intestines poking through my stomach for the rest of my life (however long that may or may not be), it's the thought of the pain involved in this operation - I was informed right at the start this is an extremely painful procedure and one that takes months to start to recover from, it's also about other damage they can cause whilst carrying out this op, it's also the psycological side of things, the way I now feel about myself and I don't feel I can, or want to, cope with this at all.

Enough for now - thanks everyone for the support. I'll be back when I've regained some control over my emotional state.
Much luv xx

Update re: 2nd opinion

YAY! Got a telephone call today from the hospital GP has referred me.

I have an appointment with Mr K tomorrow at 11.00am. Yippee! That didn't take long! I was truly expecting to have to go back to the GP next week and ask for it to be chased up.

The hospital is further away than I thought but that makes it all the better as far as I'm concerned. That way I'm unlikely to come across the 'same' team of consultants as the previous ones.

So fingers crossed please, candles lit, positive thoughts and prayers all welcomed. Thanks for the ongoing support everyone, so appreciated.

I'm now scared but happy - does that make sense?

I do know that if the prognosis is exactly the same as before I WILL be having the operation.
I know there's been some concern that I may not make the right decision but I promise I'll do the thing that is best for me, gives me the longest chance of survival and the best quality of life available.

Update as and when I know more.
Much luv to all xxx

It's official, I'm an inconvenience!

Update re: my appointments today.

Had my MRI at 7.00am this morning - 1st there so easy peasy, in and out in half an hour. Then went on to have the CT Scan, delays there as they were short staffed this morning (as the nurse kept saying to everyone, over and over again). My appointment was 7.50am and finally got out at 9.30am - but all done now.
No results until the 25th August though.

Then after coming home for a quick breakfast went to the GP to sort out my 2nd opinion and other bits. Saw a GP I'm not familiar with and didn't exactly get the response I was hoping for to be honest.

I explained that I wanted a 2nd opinion because the operation is so drastic and can't be reversed afterwards, therefore to set my mind at rest I have to be sure it's the right thing for me and really the only option available.
He looked puzzled (irritated puzzled actually - that sort of 'you shouldn't need to question' look) and asked why I didn't just talk to my surgical team at Kings because they could arrange for me to have a 2nd opinion there.
I explained that I wanted an independent 2nd opinion - separate from where I've had any treatment so far and I didn't feel that seeing another member of the same team was the right way to go for me.

He then said 'They are the best in London, you should be able to accept what they tell you. You can see someone else in the same team who can reassure you that it's the right thing to do'

I stood my ground and said 'No, I actually do want to be seen elsewhere by someone who has had no input whatsoever into my diagnosis or treatment plan'.
I went on to explain that the decision to go for the APR (complete removal of rectum/anus) was made prior to my MRI results being available and prior to me receiving any Radiotherapy to reduce the tumour and because of that I want to see someone else just to clarify that I have no alternative less drastic options.

Lots of deep sighing, irritated expressions from the GP and then he said 'It's inconvenient to start the process all over again when you could just see someone from the team that's been dealing with you'

I looked him in the eye and said 'Inconvenient? For YOU? What about me, my care, my health and well being? This is not something they can put back once it's removed and it's my RIGHT to have a 2nd opinion so that's what I want'. He then turned back to the computer and said you can go to one of these choices then - so I chose one that I've not been involved with so far.
I mentioned the dodgy ache and he checked the scan results and said there was nothing there in April so it's unlikely there's anything there now - I couldn't be bothered to push it by this point.

I wanted to talk to the GP about other things too but to be honest by the time we'd got this far I was too stressed to want to say anything else to him, so I left.

So I think it's now official, I'm an inconvenience and a nuisance !!! Oh well, I can live with that :-)

My Sister Went Home :-(

As you know my lovely sister, Sarah, was here for the past two and a half weeks. It was really lovely to see her and be able to spend some proper time discussing various things.
Phone calls aren't the same, neither is Skype..... (my Skype has a rubbish connection and kept jamming but will be having another go now we've got the replacement router) so spending proper time with her was a real treat :-)
Thanks Sis - for everything xxxx

So now for an update I suppose - I'm still feeling well in myself. No pain to talk about in the tumour site, just the weird dodgy ache on the left side of my chest area. Today it's moved round to the back just under the shoulder blades which makes me think it can't be anything too much to worry about if it's moving around.
I have made an appointment with the GP for after the scans on Tuesday and I'll mention it then and see what they think. Ideally I'd like to be rescanned in that area - just in-case!
I am also discussing with my GP my options with regard to arranging a 2nd opinion - at a hospital not connected to either of the ones I've been under so far.

On Tuesday morning I have my CT scan @ 7.15am and MRI scan @ 8.00am - these will be used to decide on surgery options. I won't get any idea of results until the 25th August so am just keeping my fingers crossed that there's been a huge improvement in tumour size since April - because that means I've then got some extra time on my side.

Rab is of the opinion that we must question everything they say, we must explore all options and not allow myself to be pushed into any decision that doesn't feel right.... Initially I was worried about discussing my concerns with him incase he felt that I was saying 'I give up, I don't want surgery therefore I just give up' - which of course is NOT the case. I haven't given up in any way, shape or form but I have to know the extensive surgery is absolutely right, for me.
He is 100% behind me and is of the opinion that all options must be looked into before any decisions are set in stone.

I had a phone chat on Sunday with a lady in London that I was put into touch with by Dr K. She also has rectal cancer and gave me some really good tips, both about health and also about options.
It helps to talk to someone who's on the same page as me ideas wise and also who is ahead of me treatment wise. I'm looking forward to being able to meet up with her in the near future.

Went off with Dj today and picked up the last bits for his school uniform - PE kit & bag, more trousers - another £45 lighter after those few bits. Mostly done now though apart from his maths set and sorting out his pens/pencils etc. He has sooo much stationary here that he could probably fill pencil cases for every kid in his class!!

Shoes and trainers will be sorted a bit nearer the time, I'm always reluctant to buy them too far ahead because sometimes feet seem to grow an inch during the last week of the holidays.
I'll get Dj to pose for a picture in his new school uniform soon and add it onto the blog. He looks really grown up and I wonder exactly where the last (almost) 11 years have gone.

Anyway, off to do bits and pieces now and try not to think about scans tomorrow :-) Thanks to everyone for the good wishes and for keeping fingers, toes and everything else crossed for me. As I've said often enough, so much now depends on tomorrow! x

New Thoughts from Dj......:-)

At bedtime the other night Dj started talking about Radiotherapy again - he asked if I would ever have the treatment again if they said it was absolutely necessary.

I agreed that, despite the fact I now know how uncomfortable it is, yes if absolutely necessary I'd have more sessions...he looked at me thoughtfully and said 'Sometimes Radiotherapy can do more harm than you realise, you might turn into a radioactive mutant or something'....:-)))

Now there's a reassuring thought eh...mutant mummy.


On Saturday I asked Dj if he fancied going for a walk over on the Common because part of my daily health routine is getting some decent vitamin D from sunshine/natural light.
He said that would be good - then turned and said 'Are you going to walk barefoot in the grass and reconnect with the natural forces of nature?'....I looked at him (in shocked amazement really) and said
'Well noooo, I was just planning on going for a walk really'
'Good' he says, 'I don't want people taking the pee when we're out. If you're getting into barefoot grass walking you'll have to walk ahead of me and I'll just pretend I don't know you, and I'm not helping if you end up with dog poo on your feet either'

I remind him at this point that he was the one reading the 'Healing Book' and chanting his mantra to cure his eczema meanwhile I've not even had a chance to pick it up for a read yet...
He replies 'That's because you're too busy reading about wheatgrass - just stay off the grass ok'!...


Actually wheatgrass is fantastic....from this.....


to this in just FIVE days. Amazing little seeds :-) I shall be juicing my own crop shortly (Dj won't be having any)

1st Wedding Anniversary

Many congratulations to my gorgeous James and his lovely wife Leanne for their 1st Wedding Anniversary today.

I couldn't ask for a better son and daughter in law - you're both simply perfect.

It really doesn't feel like a year ago - time flies eh :-)