My dad is being so brave...

oreo · New User Joined: 28 Apr 2008 Posts: 3

My mum died from Lung cancer 12 years ago, so unfortunately I'm quite well versed in what to expect. But each cancer is different, as each person involved. And that brings me to my dad.

My dad is a hugely private person. For the last 4 months, my sister and I have known he's got Pancreatic cancer and has been having chemo but because he's chosen not to disclose his illness to us, we've had to play dumb.

As far as I know, he developed Jaundice at the beginning of the year, and a 'blockage' (his words, not mine) was discovered and a stent was inserted. At the same time, he was diagnosed with Pancreatic Cancer and has since had 2 courses of chemo via a drip, although he told us he was going for a course of intravenous vitamins.

He's been slowly deteriorating and last week, he suffered a series of strokes, and is now in hospital in the stroke ward recovering. He's paralysed on the right side of his body, can hardly speak and has no control of his internal muscles or those of his extremities (his lips being most affected.)

Thankfully, because of this, his Oncolgist has confirmed that while the chemo has stopped his initial tumour from growing, it has spread to his liver and it's stage 4.

In it's own way, I'm thankful that it's all out in the open and I've been able to make my amends with him (we fell out hideously last year) but I'm worried that the stroke he's suffered will hinder his battle with cancer and he will die sooner. He's going to be in hospital for at least 3 weeks and to the best of my knowledge, no more chemo is planned.

I guess I just wanted to know if anyone else has been in this situation where their loved one ho is battling cancer has suffered a stroke, and how did it effect their survival.

I know that every day is precious and I need to spend as much time with my dad and let him know how much I love him, something I didn't do enough when my mum was dying because I just didn't think she'd die so quickly (she died 6 months after her diagnosis.)
But part of me isn't happy that his quality of life is now so poor. This is my worst case scenario. I wanted my dad to die with some dignity (which is why I think he didn't want us knowing he had cancer, he didn't want us worrying and he's very proud and will not ask us for help) but now, I can see that he's just so frustrated by this and part of me worries that he's just going to give up rather than fighting it as he's been doing these last few months.

I'm so very proud of him for being so brave in all this, for the first time in my life I can honestly say just how much I admire him.
It's strange because when I knew my mum was dying, I cried all the time because the thought of losing her was something I never thought I'd cope with (I was 21 at the time.) But with my dad, it's very different. Maybe it's because we've not been close, I'm not sure, but I'm resigned to him dying and in it's own way, he's been so miserable, unhappy and bitter since mum died that I think it's what he wants. What I'm more upset about is the effect the stroke has had on him and how he's struggling to perform even the most basic of tasks, such as taking a sip of water. And this makes me feel like a terrible person. Or maybe I'm just in shock about this, and although I know he has cancer and will die, it just hasn't hit me fully yet. I just don't know but I'm beginning to wonder if I'm so removed from this somehow because if anything, I feel happier than I have in a while. Or maybe it's relief that my dad's getting the care he needs...

So, as I said, I'm not quite sure what I want to know, but it's nice to be able to post this stuff. I post on another message board but although everyone knows me really well, I just don't feel right talking about this on there, so thank you so very much for being here so I can say all this x

ksplat · Posted: Wed Apr 30, 2008 7:04 pm Post subject: Re: My dad is being so brave...

Dear Oreo

Thankyou for sharing your story here. I am glad you found this forum, we are a fantastic community offering, support, advice, comfort & love & it's a good place to come & just "spill your guts"!
My Dad had a very severe stroke when he was 56 yrs young & I travelled over 4,000 km home to say my goodbyes. He lived another 16yrs after this stroke & was so committed to his rehab he eventually walked & talked again (he was given NO hope).

Remember, there is no such thing as FALSE HOPE there is only HOPE & where there's life there is always HOPE.

My prayers & thoughts are with you. From reading yr post you seem to me to be a very positive person & having now reconciled with your Father I can see you being a very positve force in his life & especially whilst he is being rehabilitated & treated for cancer.

Please keep us informed of his progress & I pray for a very positive result for your Father.

God bless you. All the best, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

corrdal · Regular Joined: 13 May 2008 Posts: 14

Hello Oreo

I just read your post and feel so much sadness at your story but also so much happiness that your differences with your dad have now been set aside in his moment of need. Keep strong for him.

I am new to this forum and wish i had joined a long time ago but i am fighting for my dad at the mo and my mum is not well through all the stress of what is going on.

I also lost my husband christmas eve 2005 to suicide so my sense of loss is overwhelming as im sure yours is at losing your mother so young.

My dad is the same he has so much pride and loves my mum and our family so much that he keeps things from us to try and protect us from hurt.

I sincerely hope your dad pulls through, i wish i could give you some advise on your situation but infortunately every scenario is different.

Keep your chin up you are very strong.

Corrina

oreo · New User Joined: 28 Apr 2008 Posts: 3

Hi,

I'd thought I'd drop by to say thank you for the kind words and support, it's very humbling. And Corrina, that's so sad about your husband, it really is and I understand your overwhelming sense of loss as well as how difficult you must find Christmas x

Anyway,

On a good note, my dad got discharged from hospital a few weeks ago. Being the fighter he is, he's not letting a little thing like a stroke get in his way and I'm pleased to say that although he still has very little control over his right side, he can now stand-up making it easier for us to put him into his wheelchair. And he can now talk a little bit, although mostly it's swear words (he's horribly aggressive), says no far too much and is incredibly good at letting us know what food he fancies eating!! Although 'slippers' seems to be his favourite word and this can mean anything from the electricity bill to chicken soup to wheelchair to pillow. So it can be a question of trial and mostly error in figuring out just what's he's after!!

However, since he has come home it's not been going too well. We take him out once a week so he can go to the supermarket/bank etc etc but that takes an enormous amount of energy so he spends most of the time in bed. He's been in a lot of pain recently and is finding it difficult to sleep for more than a few hours during the night. He has 2 carers who come ot help him as well as the district nurse who visits daily. My sister is also there for him every night and I go one afternoon/night during the week and spend all weekend there, but it's difficult for me to help him as he dismisses me the minute I go to try and help him. When I'm there, all I seem to do is the laundry and cooking, which is fine but I want to help [i]him[/i].

He's confused a lot of the time and spends most of the day drifting in and out of sleep.
This weekend as his pain is particularly bad, and due to his problems with mobility, he finds it difficult to move position during the night, and the last few days, he's had troubling swallowing food/water and he's start to turn the awful yellowy brown that can only mean that he's getting jaundice again.
We called his GP today so he could prescribe some pain medication but my dad refused to acknowledge that he is in pain. And even though my sister asked him to prescribe something, he refused because my dad is adamant that he's not in pain, and all he would say was 'No pain, no hospital'. And that is difficult because when my dad cries out in pain at 3am it's my sister who has to deal with him and not the doctor.
(Having written the above I'm beginning to wonder if my dad equates admitting to him in pain means that he'll be taken to hospital? I know he wants to die at home.)

My dad's approach to his illness has been very different to my mums, namely in the fact that my mum took every kind of pain medication that the doctors would give her. However, they both became very aggressive and potty-mouthed as the cancer progressed. And I guess this weekend, the way my dad is reacting, his constant asking for my mum, and his proclamation that he's dying (this is the first time he's said it,) coupled with his deterioration/return of jaundice makes me wonder if he's losing his battle.

Part of me hopes it won't be much longer because I hate to see him so unhappy and in pain and not having much quality of life but the selfish part of me wants him to keep going for longer so he won't dismiss me every time I'm there so we can have a chat and make our peace with each other but I have resigned myself the fact that this probably won't happen and all I can do is comfort myself with is that every time I leave him, I always go and tell him that I love him. And that's the most important thing I guess, his knowing I love him and not the other way round.

The hardest thing to come to terms with is that once he dies, it's just me and my 2 sisters left as we have no grandparents, aunts, uncles, nieces or nephews.
Last Thursday was my 33rd birthday and I found it difficult to celebrate because all I could think about was that this was the last birthday I'd have as somebodies daughter, with any semblance of a 'proper' family unit.

I don't know, I just feel really impotent at the moment. I'd like to do more but feel that time is running out, especially as one of his doctors told us that it could just be a matter of weeks..
And now I'm anxious and worrying about how he will die as I don't want him to be in any more pain than he is now, and I don't want him to be frightened, as that's the thing that's most apparent at present, just how frightened he is.

corrdal · Regular Joined: 13 May 2008 Posts: 14

Hi Oreo

sorry to hear your dad is in pain, maybe talk privately to your dads doctor about his pain denial and fear of hospital they may be able to reassure him that his pain could be controlled at home!!!

Have you tried reading and posting at the John Hopkins message board you will find a lot of help and info there as it is more active.

I hope this helps. It is helping me with researching for my dad.

Good Luck Keep Strong

Corrina x

Queensland Girl · Regular Joined: 17 Oct 2007 Posts: 48 Location: Australia

Hi Oreo,

I have read your posts and they seem to be echoes of my own losses. My Dad passed away in January this year. He also had difficulty swallowing towards the end and when I spoke to the doctor she said that it could be a manifestation of the cancer. My Dad too was adamant about not being in hospital, however he started to get confused and dehydrated, so he was admitted.

As suggested, your Dad might be really anxious about going to hospital. Is it possible to have the doctor do a house call?

When I spoke with the palliative care people here, they wanted to do an "assessment" of my Dad at home, evaluate his medications, his general condition and his wishes. The idea was for the nurses to work in consultation with Dad and his doctor to give him the most comfortable outcome.

Unfortunately Dad's rapid deterioration didn't allow us this chance.

We sisters did however tell our Dad we loved him, and I personally think our relationship was okay at the end.

I feel for you, and hope that your Dad's doctor can help with his pain and thus with his stress and anxiety.

When my Mum was dying, I wanted her to stay alive even though she was unconscious. As long as she was breathing she was here - she was my best friend. On the other hand I wanted her to be at peace as she suffered so much pain.

With my Dad, it was different. We were not as close but I tried to do what he wanted and tried to make his last weeks as easy as possible. When it was his time to go, I knew he would be with my Mum so that was okay.

Please also think about yourself, and look after your self too, and don't feel guilty about how you feel about your Dad.

My heart goes out to you.
_________________
Regards,

Queensland Girl

Mum diagnosed June 1993, surgery and chemo died August 1993 (Pancreatic Cancer)
Dad diagnosed July 2007, chemo only died January 2008 (Pancreatic Cancer)

oreo · New User Joined: 28 Apr 2008 Posts: 3

Gosh, it's only been a month since I was last here, it seems like an eternity ago.

After my last post, my dad seemed quite stable, although he was jaundiced again. Indeed, his oncologist was incredibly happy with how well he was doing and felt he was strong enough to have an operation to replace his stent.

Sadly, a few days later (Friday 20th), my sister found him semi-comatose and she called an ambulance. The ER doctor we had was amazing although he feared that dad might not make through the day. But somehow, my dad managed to find all his strength to pull through and by Sunday was taken off the critical list, although he was told to stay in hospital because he was an antibiotic drip due to a few infections he was fighting. And the wanted to do some blood cultures.

On Tuesday 24th, the doctors came to see us with the result of his scans he'd had done the week previously and unfortunately, we were told that the cancer had spread to his lungs, brain and bones, and his blood cultures revealed that he had strep pneumonia which was causing his kidneys to fail. The doctor said there was nothing more he could do. At that point, my sister and I decided not to tell my dad and our only aim was to get him home as soon as possible.

So on early on Friday morning, we brought him home to the house he loved so very much. Although he was drifting in and out of consciousness, I'm sure that her knew where he was and we made sure that he wasn't left alone for a single moment.
We had some incredibly lovely moments with him over the Friday and Saturday although it was terrifying at the same time because he was finding it so difficult to breathe, and we had many a heart stopping moment where he'd stop breathing, only to start again a few seconds later. The rapidness of how quickly his body started to swell with fluids took us by surprise and we had to cut him out of his pj's and his poor arms resembled a cricket bat.

But my dad battled on and we noticed a change in him, he seemed a lot more peaceful as the weekend progresses and he started to look a lot more like himself again. Although by now, he was not conscious very much, his eyes weren't focusing, he was no longer squeezing our hands when we squeezed his and his feet had already started to turn blue.
Early on Sunday morning, we noticed that Dad's smell had changed, and his breathing almost sound normal again (that horrible rattle had stopped) and at 8.51am, he died.
I was holding his hand at the time and he took 3 deep breaths. The 4th one never came. It was very peaceful and when it happened, it seemed like the most natural thing in the world, unlike all the other times, this time, I didn't panic at all.

We had his funeral yesterday (we're Jewish so these things are done within 48 hours if possible) and he's been laid to rest next to my mum. After 12 and a 1/2 years apart, they're now together. And that's the only real consolation I can draw from this.

I'm not sure what else to say other than my dad was so very brave and dignified. His courage knew no bounds and I admire and respect him more than I can express.
It transpired that he didn't tell a single person he was ill. It came to a huge shock to all his friends and business acquaintances that he was ill. I guess my dad didn't want to worry anyone and I think that because all he did was think about it, he just didn't want to talk about it. As it wouldn't have changed anything.
My dad was always a hugely private person. After mum died, he completely withdrew into himself because he was so unhappy, I remember for the 1st 2 years after he death, he used to go to bed at 5pm in afternoon. He didn't like to talk about stuff, he just got on with it all to the best of his abilities, and that's very much how he tackled his illness. He did his very best, and I think he's a truly remarkable man who battled on and only lost because his body couldn't keep up with him.

I feel very privilleged to have had him for my father. And it seems very appropriate that his Hebrew name translates as 'Giver of Live.'

Although the outcome of his illness was always inevitiable, and it's all just so very very sad, I have some lovely from the last 5 days of his life. And I will always hold them in my heart. Because like my mum, that's where he'll live forever.

He might no longer be with us but he most certainly will not be forgotten.

MW 2-09-40 to 29-06-08

Mrs B. · New User Joined: 11 Mar 2008 Posts: 8

You described the last few days with your father so beautifully...
Thank you for that, it helps me a lot.

I wish you and your family the strength you need in this sad period.

Eve

brainman · Posted: Wed Jul 02, 2008 4:36 pm Post subject: Re: My dad is being so brave...

oreo, as I read the story about your dad's last few days, I find myself crying. I too lost my father to this dreadful disease. He had a form of Leukemia and lived about 1 year after being diagnosed. You write so beautifully about your father. It breaks my heart to hear that he has died Sad

.

You and your family are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

JLC · Regular Joined: 18 May 2008 Posts: 23

Oreo,

I am so sorry. Your post was beautiful. I was also with my mom when she passed June 5, and, like you, I hold those last few days in a special place in my heart. You just don't know until you have been there. I wish you and your family peace and comfort in the time ahead. I will keep you in my thoughts and my heart.

J

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