One Week back at Home........

So today is Friday, 24th February 2012 and I've now been back at home for a week.

It's been a really really tough week :(

On discharge from hospital the damn diarrhoea decided to make a come back - with a vengeance! I've been having to get up out of bed 3 - 5 times a night just to do bag changes, it literally is like having a tap attached to me, it just pours out.
My Palliative care nurse was on leave this week but I spoke to one of her colleagues who faxed a prescription to the GP for me for Buscopan tablets (to stop the continual stomach cramps) and also for Loperimide to stop the diarrhoea (only problem is, it doesn't actually stop it!)

Yesterday I spoke to one of the lovely nurses from Beating Bowel Cancer. They always seem to know when I'm at a really low point and ring me that day....I filled her in and we discussed together how totally shit this whole thing is. She gave me some advice re the diarrhoea tablets and rehydration without going back into hospital....to be honest for the past few days I've felt that I will end up back there sooner rather than later.

Today I feel a little better...had a light diet yesterday as the previous day I'd spent most of the afternoon throwing up in bed and Rab was in and out providing me with a clean bowl, tissues and drinks to keep me going. My husband is an amazing man - I never realised how amazing he was and I never truly appreciated him before all this. I wouldn't be able to do this last bit now without him.
But as I said, today I did feel a little better despite the continuing diarrhoea....I finally realised it's because the Buscopan tablets have stopped the awful painful cramps and this has made me feel that I can cope with the remaining ongoing symptoms for now. I'm determined to get past this bit and find a way to feel 'well' again. I'm determined to prove them wrong with what they now expect for me as a realistic time span. I still have things to do here.

Friday, 24th February was also Rab's birthday. Last night Sarah and Manolis came over along with James and Leanne and we had a lovely Chinese meal. I didn't eat too much but I did have a gorgeous Spring Roll (yummy, my favourite thing to eat ever....I even dreamed about them in hospital) and a small portion of rice with beef & black bean sauce.
Rab had some lovely presents and cards and felt just a little special I think :)  I hadn't managed to organise presents for his birthday from me this year, but Leanne went shopping and chose some things that she knew I'd like, she even wrapped them for me - it's like having my own personal shopper :-)))
Thank you Leanne xxXxx

It's now Saturday and again I don't feel as bad as earlier in the week. The cramps are definitely under control now - the diarrhoea continues unabated, so I continue to eat Loperimide like sweets :) and do bag changes by the hour!
Rab made me a lovely light lunch today of toasted cheese sandwich and tonight he's making numerous tasty side salads (to try to tempt me to eat more) and a mushroom omelette.

It has been a lovely sunny day with blue skies and a totally fresh feel to the day - this makes me feel better in myself in general and although I know I'm not out of the woods yet (by a long shot) I'm still trying to find that exit route - the one that leads me to a longer, painfree life.
I've got it firmly fixed in my head that if I can get to March things WILL get better - obviously not for ever but at least for a while.

Keep that positive stuff heading my way because it's obviously working :)

Back soon xxXxx Much love to all xxXxx

Back home after my NHS trip........

As you all know I was struggling with acute diarrhoea, raised temperature, aches, cramps and pains from 14th January. I kept thinking I could cope at home, I would get back on top of things eventually but then it hit me on the afternoon of 31st January when I looked in the mirror that if I didn't get myself to hospital I'd be found dead on the floor at some point. I then made the decision to get properly sorted out and rang my GP who insisted I go to Accident and Emergency for a full assessment.

I arrived there with Rab around 4pm and from that point on, everyone provided me with exceptional care and compassion.
To be honest initially I thought they'd keep me a day or so, get some fluids into me and send me home as a bit of a time waster with a dodgy upset stomach....however on admission they took bloods from me and it was found that my inflammatory markers were running at over 300. A 'normal' person has inflammatory markers around 0-5, so mine were apparently 'impressive' ....LOL. That's one way of looking at it I suppose.

For the first few days of admission they were completely puzzled with what was going on with my body. The acute diarrhoea, cramps, temperature raises were all pointing to something being very wrong but they couldn't work out 'what' was wrong. I also then started having periods of constipation. It hit me at one point that I had EVERY symptom of bowel cancer - that was almost amusing considering last time around I had virtually no symptoms at all.
I had at least 6 different teams involved in my care from General medical to Oncology and everyone of them tried to go the extra bit to help me. My care was amazing from arrival to discharge. My nurses on the ward were simply brilliant - so caring, compassionate and they made a huge difference to how I coped being in there for so long. Some of them would just come in, sit on the bed and chat. They didn't dress it up as anything except a 'shit situation' - they listened, hugged me and said I was 'amazing, so strong'..it all helped because when you're being bombarded with crap news every day you definitely start to lose the ability to be 'amazing' and 'strong' anymore.

Anyway, numerous x-rays, MRI's, CT scans later I was told that just about everything had changed....firstly T10 in my spine had now completely crumbled and the option of bone cement was off the table. It would now need to be a completely different type of spinal surgery to replace parts of missing spine...

I was also told that new 'masses' had been discovered in the pelvic region (damn, that was fast - nothing was in my pelvic region in December when I had detailed scans)...the new masses are suspected of being a completely NEW primary cancer - possibly Ovarian...another huge blow.

Then it was found that my right kidney had stopped functioning because a 'mass' had decided to grow around the tube between the kidney and the bladder shutting it down completely. They talked about a drain into an external bag and I was so pissed off about this. During the op they managed to get a stent into place to open up the tube without the need for an external drain or external bag - so at last something went right.

Prior to all this new info, the Oncology department had spent time talking me into doing a course or two of Chemo. They assured me that it could be 'tailor made' this time and that they could protect me from the horrendous side effects that I'd suffered last time around. However, without two functioning kidneys no-one was prepared to even think about Chemo - so that was the first thing that needed fixing.
Then of course if the new masses do turn out to be a brand new primary, Chemo is probably off the table completely simply because they can't really whack me with two different chemo's at the same time.
Surgery to remove any new masses also probably wouldn't be an option as it would take me too long to recover.
It felt like I was being continually whacked with bad news for a period of about 8 days in there. Every time a Doctor walked through the door it was to say 'I'm sorry but.........'........

I got to the point where I just couldn't take any more bad news and flipped completely when they tried to send me down for yet another scan. My lovely nurses on the ward and also the Stoma nurse, Anna, tried everything to protect me from any further bad news for the next few days.
Anna arrived by the side of my bed in the middle of my complete mini breakdown and got me through the next hour by simply hugging me and listening.
I told her I KNOW this will kill me now and I'm just not ready to go yet, she agreed that yes, it will kill you Carole - there's no way back from all this crap now and it's not fair but sometimes you've just got to accept that things are bigger than you..........I cried, she wiped her own tears away whilst keeping me on a even keel for a while and left me in a better place than I'd been in when she arrived. Thank you Anna - sincerely...xx.

Since then I've had lots of  mini breakdowns - fairly short lived as I tend to pull myself together afterwards and carry on but they are there in the background. Simple things set me off.
I'm so so angry with this bastard cancer now....I took everything it threw at me, tried to fight back and get back on my feet only to deal with mets a fairly short time later. I never ever had a 'clear' scan - I never ever had a break from it all. THEN it decided to throw a whole new primary cancer at me - as I've said recently....I'm NOT a quitter but I do feel fairly defeated now.

However, I've now been released from hospital and I'm back at home being taken care of by my lovely husband, Rabah. For a while I didn't know if I was going to make it back home again - I really did feel that ill when I was in hospital, but I'm still here. He's determined to get me eating again, he's determined to make me well and get me back on top of this.
I'm determined to try my best - simply because I'm not ready to leave Rab or my boys just yet. I'm not stupid, I know it will end up not being my decision to make, but I can at least try.

You all know by now that I'm not a religious person - but I'll take any prayers you want to send in my direction. I'll take the positive thoughts, candles and vibes and hope that everyone of them helps me in my ongoing struggle to stay here longer.

Thank you all for caring about me and my family - I need you to know how much we appreciate it xxXXxx

Very quick update.....

I have been in hospital since 1st Feb and was finally allowed home yesterday, 17th Feb....Update to follow but will have to be once I have found some energy from somewhere.

For now it's enough to say that the NHS have taken very great care of me over the past two and a half weeks, and right now I'm back at home being taken care of by my lovely Rab.

Thanks for all the messages, I'll get around to responding at some point.

Much luv xxXxx