Organised Chaos

Doesn't Time Fly

2010-10-01T21:01:52Z

Well, it's been 2 months since we got dad's diagnosis and so much has happened in that time.

Things have been incredibly confusing and manic over the last 2 months, Dad's consultant decided it would be worth performing the cystectomy operation as although the cancer would still be in his chest, chemo was slowing the growth down and therefore the op would give him the chance of years rather than months. I had a lot of trouble understanding that, to me if they removed the bladder then it should be gone and it should mean he would be fine, but as my mum pointed out, it's still in his chest and that won't go away. Dad went in for his op on the 13th September and is now at home and recovering well.

2 days before his op, he did me the honour of walking me up the aisle as i married my fabulous other half. It was an intensely emotional day, i cried all the way up the aisle, as we got married and especially during the speeches. Dad got up and thanked everyone for coming and then all he said was how proud he was of me and that was it, i cried again, It makes me want to cry just writing this, i'm so glad we had the wedding then, so he could be there and feel well and really be a part of it.

Things have been mad since then really, when dad went in for his op i took a few days off work to be at the hospital with my mum. I had booked the mon, tues and wed off and was supposed to go back on the Thurs. Dad was doing fine but i was worried about mum, she's always been so independant and on the wed she actually asked if i would take thurs off as she felt she needed me around. I think that was more scary to me than some of the other stuff that has been going on.

We spent a lot of time sat in the hospital cafe talking during those 4 days as they would only let us in during visiting times but mum wanted to be close and one thing she said keeps coming back to me at the moment. She said that recent events have shown her just how strong i am, how much i can cope with but at the moment i don't feel strong. I'm starting to feel a little like i'm going mad, one minute i want to cry, then i'm just angry and then i'm happy. I'm up and down like anything and i wonder if that's because off all the time i've spent trying to be strong for everyone else.

This week has been a nightmare, our cat has been sick which is costing around £700 which was the money we were going to use for a honeymoon, my step kids mum has been in hospital so we have had the kids full time for a week and a half, the washing machine is leaking, my manager is away so it's all falling on me at work, the list does actually go on and on and i'm sorry. i know i'm moaning and there are people worse of than me but i just think it's all finally hitting me so everything just seems so much worse, maybe it's because we had all the wedding stress, then the wedding, then dad in hospital and then straight back to work and then this week as well.

Well i have gone on for long enough, Sorry to ramble on like that and please don't get me wrong, i don't sit around feeling sorry for myself normally, but i can't helo thinking that maybe everyone's entitled to feel a little overwhelmed sometimes and i should give myself a break for once.

What happens next.....

2010-07-31T21:05:05Z

So a lot has happened over the last few weeks, but it's all been overshadowed by the events of last Thursday.

Dad got his results form his scan, they have told him that his cancer is terminal. they are going to do 3 more cycles of chemo as it had a small effect and may help to give him more time but they will never be able to cure it, it's in his bladder, prostrate and chest.

I asked a friend who had gone with him and mum if they had given any idea of how fast it will progress and apparently they say he will prob have a year. It's only an estimate, could be less, could be more.

I just don't understand how things can go this way, 2010 was going to be a good year for us all, after everything that happened last year and yet now look at it. I keep trying to find the words to explain how i feel right now, but keep deleting it as i just don't think there are words right now.

Annoyed, maybe unjustly but still annoyed

2010-07-03T23:07:13Z

Ok, so firstly i apologise because this is just me venting and i'm not sure i really have the right too.........

Yesterday i called my mum to see how everyone was and she sounded really funny on the phone, but i thought she may have been tired or something, well today my brother emailed me to ask if i knew that Dad had stopped taking all his medication...every single bit of it.

I was chatting to mum the other day as this is dad's last 2 days of chemo and he's got a scan after that to find out if it's helped at all. He was given the appt with his consultant to get the results of that and the consultant told them that if it hasn't helped then they will prob offer more chemo but only as a life prolonging measure. It was a small battle to get him to go through with these three rounds and i wanted to make sure mum knew she would probably have a fight on her hands to get him to have any more if there is no chance of it getting rid of the cancer. Now if it was just us older children and mum then like she said maybe she could see his point of view but there's also my little sister to think of and up to today i understood (at least as well as i can) both points of view, why would he put himself through more if it won't work but on the other hand he has a young child to think of.

But after hearing today that he's stopped taking his meds, i'm just annoyed!!! If this was 3 weeks time and he'd been told there was nothing that could be done, then ok, to me it's still not acceptable and i'd still be upset and confused but i don't want him to suffer any more than he has too with this.... However it's not 3 weeks from now, and as far as he knows there is still a small chance. How can he just give up like that?

This is gonna make me sound really awful but i almost feel what right does he have to do this? I know that ultimately it's his life and body and it has to be his choice but he choose to have a family, he made sure that we depended on him, that he was a huge part of our life and we need him around. He prov ed that we could be a family and that family life was something good, to be enjoyed and treasured. I should prob explain a bit more, i read through my last two posts and have never explained our family......you see my dad is technically my stepdad, has been for 14years and i call him dad as he has been more of a father to me than anyone else. When he married my mum, he took on me and my brother and treated us exactly like we were his own kids and then they had my little sister. He has always been there for me, and i did occasionally put them through hell but he never turned his back on me which some would say he had the right to do and for that and many other reasons he will always be my dad. But now i feel that he's being unfair, he promised he would always be there for us, whenever and whatever we needed and yet he can't if he just gives up.My little sister has never known anything different, he's always been there, she needs her dad and she needs to know that he is trying everything to stay with her for as long as he can. How can he just give up when there are so many friends and family that love him and want him around?

I've been reading a few blogs and forums on here recently and one thing that has always struck me is how much people fight, they go through absolute hell but they fight! I don't understand why it seems like he doesn't want to!!

Awake again

2010-06-22T00:36:08Z

Wow...i thought i'd be able to spend more time on here, update this a little more often but things have just been so hectic. My fiance and i pulled our wedding forward to the 11th September due to dad's cancer and it's taking up so much of my time, trying to get the bridesmaids sorted and all the little things that i never thought of as being involved in a wedding...silly things such as tablecloths to fit our colour scheme etc. There doesn't seem to be time to stop and breathe which i suppose is good in some ways, no time to really think.............except of course like now, when it's 1:20am and i'm up again! This has been happening a lot lately, i have my own health problems which are responsible for some of the lack of sleep but i also think it's just because i've got a lot on my mind.

Dad has now had his second doses of chemo and only has one to go before the scan to tell him if they will carry on treatment. He seems to be coping ok, or at least that's what he tells me, he makes me laugh sometimes because i'll ring up and he'll tell me he's fine and then i'll talk to him the next day and he'll say he's fine, having a better day than yesterday. He told me the other day that he prefers things the way they are at the moment, he's 'in limbo' and likes not knowing either way, he almost wishes it could stay like this. I understand the reason why, no-one wants to be told they are going to die, but in some respects i wish we knew now, a part of me wonders if it would be easier to cope with. It was his birthday at the beginning of the month and also fathers day on Sunday and i hated it, it felt different knowing it could be his last. I know i'm supposed to be positive and not think like that but i've learnt that you can't always help it, sometimes those thoughts creep up on you.

Too many words and emotions to choose from

2010-05-29T21:48:47Z

Hi guys,

I'm new to the site and thought that writing the blog may help me to sort out some of the feelings i have these days.....you see my dad has been diagnosed with bladder cancer, it probably sounds strange to people but i can't really remember when it became an official diagnosis, it feels like a lifetime ago when in reality it's only a couple of months, i apologise for the long post but there's a lot of background to this.

He'd been having problems for a long time and unfortunately he left it a long time before he went to get it checked; and then to make it worse they didn't really investigate until it got a lot worse. They eventually sent him for a cystoscopy where they saw the tumour, they then did a biopsy with general aneasthetic. The day after they told him it was definitely cancer and they had to wait for the biopsy results to find out how aggressive it was. The biopsy results came back a week and a half later and it is quite an aggressive form, in fact so aggressive that they said they would have to do a ct scan before any treatment as if it had spread at all then there would be nothing they could do. It took just under 2 weeks to do the ct and get the results, these showed that there is a small tumour in the chest cavity but because they don't know whether it is the same cancer or not, they were willing to try 3 lots of chemo. This will last for 9 weeks and if it shrinks the tumour in his chest, then they will do the bladder removal op, if it doesn't then they say there is nothing else they can do.

Well, it's now 2 weeks into the treatment and it's just so strange, he was having problems before but he never seemed ill, but now after his first lot of treatment, he looks ill and it's scary. My brother and sister still live at home with my parents and they're both really struggling to deal with this all. My sister is only 12 and she's just terrified her dad is going to die, my mum didn't want to tell her much to avoid scaring her but she's very smart and figured out what was happening so we told her everything as she was imagining a lot worse, she's coping well for such a young girl and also now has a counsellor at school that she can talk to which is helping and my brother....well....he's 25 and not coping with this at all, he's just as scared and was coping by drinking, however he had a little meltdown the other day, he cried over us all, told us he didn't want dad to die and couldn't cope with this. We tried to tell him we were all feeling the same and the best thing to do is to be honest with mum and dad, tell them what he's feeling and deal with it together but we don't know if it worked or not, i guess only time will tell.

As for me, despite what i said to my brother, i don't know how i'm feeling, I haven't cried, yelled, done any of the things i would think of as normal in this situation, i've been trying to keep positive and think of all the practical things that need doing and sorting, i feel almost detached from it all. My mum told my brother last week that we'd all had a day like that, where we cried,shouted etc but i haven't. The day he got the ct results my little sister stayed with me as she didn't want to go to school, we spent the day playing games on the wii, cooking cakes, just having fun and that to me seemed almost wrong. My fiance and i have also now pulled our wedding forward as i don't want to risk my dad not being there and i've learnt that life is too short to wait but even planning my wedding seems strange, not quite wrong or sad but odd.

I don't know how to feel, what to do or say and in some ways how to help, all i can see is the devastating effect this is having on my family and i can't do a damn thing to stop it, all we can do is sit and wait for the next ct results and pray that the chemo has shrunk his tumour and they don't give up.