argo

struggling

2010-08-10T07:47:17Z

I don't know where to start but am already crying. Dad had been doing so well considering, until last thursday. The GP has said this *****! disease is spreading rapidly and he only has a month maybe 2. Yesterday I went to see them and he looked totally different - bright, out of pain and eating! I just can't comprehend this and am really struggling.

I know the day is going to come but can't believe it,and whilst life continues whatever I don't know how we will all go on without him there. Can't sleep as I just keep thinking off all the things he used to do and those little things he did for mum, me and my children that he will never do again and i have no idea how we will manage - some of the them i know i simply won't that's why he used to do them!

I'm scared of a world where he isn't here, what am i scared of? the loneliness, the grief, of my whole world tumbling down around me, mum not coping, of never being able to live a "normal" life again - you name it, i'm scared of it!

What makes it worse is that I know the worst is yet to come and when that day arrives I will have to live everyday without him - there is no going back and somehow the finality of that is just too much.

So sorry to anyone daft enough to read this but I need to say these things and the only person who I know personally who understands me is the one person I refuse point blank to cry in front of and as I am now crying buckets talking to him is definately out of the question!

How do i tell them?

2010-07-13T10:19:24Z

My son is starting to really notice how dad is going down hill, 3 weeks ago dad and mum were still picking him up from school, now he spends all day laying down - sometimes asleep sometimes awake. I heard him talking to his little sister last night - he'd been sick the night before and she asked him if she was getting better like guggy "guggy's not getting better" came the reply.

I was so shocked then I just cried - I really am going to have to tell them, I know everyone says be honest and I will be as far as I can but I don't want to frighten them or say something that would stop them wanting to see him.

I suppose the other reason is I'm struggling to come to terms with it myself and still spend random moments crying my eyes out - then there is mum and her grief - just don't want to see any more of it on 2 lovely and very precious children who adore their grandad and should not be loosing him like this!!!!!!!!!

a shattered world!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2010-05-12T11:43:44Z

We have finally arrived at the time that I hoped would never come, on Friday I was told that dad was stopping his treatment as the results of the last scan were bad - 6 months if we are lucky they are now predicting.

I don't know what to say or do and can't stop crying. Every time I look at hime I just cannot comprehend that by the end of this year I will no longer have him!

Nothing seems right, can't work, can't be at home, can't be with mum and dad!!! what the hell am i supposed to do with out him?

Have decided to stop coming here, its breaking just too far. I wish all those still fighting and their famililes all my love, support and luck in the world, For those like me who now have to face the end I again give all my love.

mad but doing it for dad

2010-03-04T13:39:17Z

Have entered the "Race for Life" and providing the metal work holding my spine together is prepared to play the game I'm RUNNING. Most of my family and friends whilst supporting my decision to enter think i am mad to try and run it.

Was at the gym today getting to grips with the treadmill under the supervision of a very scary personal trainer. She only let me jog for about 1 min and although it wasn't as bad as i expected some parts of me could well disagree!!!!!!!!

Still no pain no gain as they say and strange as it sounds in some way it makes me feel better-although not keen on hurting.

Have been looking sutent trials since last week and it would seem that the average life extension is between 6 months and 28 months- does anyone know any different?

finally said it!

2010-02-26T12:10:02Z

Just had mum on the phone to tell me how dad got on today at the hospital. Consultant was very surprised and pleased to see how well he looks on sutent this time, he siad that despite what they say about not being able to go back on this drug once you've been on some of the others he's going to ignore it and keep dad on. That was the good news - why does this always seem to come with a but...............

Although the xrays showed that there has been no change in the size of the tumour, its not shrinking either and he then finally said "you know we can't cure this". The words I knew but never wanted to hear.

Don't know how I feel as I write this, no tears, no anger, just nothing. For weeks I have been going on as normal, as if this just wan't happening.

general update

2010-01-23T12:54:52Z

Dad say consultant yesterday and for once we had "good news". His blood count is holding and he is generally a lot better since being taken off the drug trial and put back on Sutent. Apparently there are 4 still on the drug trial for whom there has been "some" degree of improvement.

Dad is now on sutent full time (no breaks anymore as they think its better) and seems to be coping so much better, not sure if its because he now takes the medication in the morning as apposed to the evening or, if being so so ill on the last one has made his body realise that this isn't so bad.

It's so nice just to see him looking well and to experience his cheeky nature again, something that for the last year has been missing.

He won't see the consultant for another 6 weeks (something he is glad about as he hates these visits). I still wish for that miracle but at least for once its been a positive visit.

off drug trail

2009-12-21T13:32:07Z

dad has ben taken off the drug trail because he was suffering too many side effects, the consultant said that many of his patients on this trial were suffering the same and the benefits did not outway the side effects.

we were originally told if he went on this drug trail there was no going back but evidently something happened because he has started back on sutent today.

Although i am glad he will not suffer so much, this drug was supposed to work where sutent did not so that leaves me feeling very hollow, what next? is there anything else or are we waiting for those words to be uttered again like they were this time last year.

I'm fed up with trying to be strong and look at the positive, sorry i know its christmas and no one wants to be depressed but this all started the day before christmas last year and 1 year on we seem to have only gone in a complete circle!

Here we go again

2009-11-17T10:11:26Z

Its that time of the month again when dad is going for a check up with the consultant. I know that it is necessary as he is on a new drug trial but i hate it, every month i feel scared, hopeless, helpless, hope for a miracle, fear of hearing those fateful words.

Not helping is the fact that its coming up to Christmas, we got told the day before christmas last year that he had cancer and that surgery/chemo/radio were all out. I really used to love christmas but this year would rather forget it completely.

just want the world to slow down

2009-10-29T09:41:26Z

First time I've written one of these, just feel that there is so much i need to get off my chest but have no one to say it too!. This time last year i was looking forward to Christmas oblivious to the fact my world would fall apart the day before Christmas when my dad was told he had advanced kidney cancer and the chances - 1 in 10. SInce then its been a roller coaster of no treatment available, then were lucky enough to get on to sutent, that worked at first but 2 months ago they said it had stopped working and would he like to go on a new drug trial. Been on it for the last month and yet again i am trying to be strong whilst watching him dealing with yet another set of side effects. I just wish I could get a hold of this! I don't have any siblings so feel there is no one to share my fear/anger/frustration etc with and am fed up with not knowing where my head is at!

Guess today is a bad day as don't usually moan like this! sorry folks