My Beautiful Dad

Sammict · Posted: Sun Nov 05, 2006 8:56 pm Post subject: My Beautiful Dad

Dear Kris, BC and everyone else I have been speaking to on here over the past few weeks,

Just wanted to let you know that my gorgeous Dad passed away on October 27th, aged 58, almost 4 months to the day of original diagnosis. What a horrific disease GBM is. Only two weeks before we had visited the oncologist to get post treatment MRI results and we're told the treatment hadn't worked and that the tumour had tripled in size. They told us he had less than a month.

A week later Pallative care arrived and put Dad on a 24hr morphine pump, but he was still in pain, so my mum, sister and myself had to administer breakthrough shots of morphine every hour or so. He was still talking to us, but slept most of the time and stopped eating and drinking a week before he went into a state of semi-consciousness. He was calm however and apart from one really bad day was comfortable for the most part.

I am thankful that he got to stay at home with us, we read to him, played his music and sat up all night with him on his last night. On the Friday morning he slept until he suddenly opened his eyes and looked at my mum, he then looked at me then back to my mum and then he was gone. It was very peaceful, but so quick. Even though you are prepared for the end result, it is still unbelievable. I still feel numb and can't quite believe that he is gone. Even though I feel some relief that he is no longer suffering, I just wish he was here so we could keep on taking care of him.

I hope that your loved ones are not suffering and that they start their new journey in the universe as peacefully as my dad.

Love & thoughts to you all
Sam

bc · Experienced user Joined: 11 May 2006 Posts: 54

Hello,

I am very sorry that you had to go through this. My dad has been bedridden this past week. Started out sleeping for several days, than this past Wed through today, as been somewhat alert enough to take some food.. even had a few sips of wine! The hospice nurse said it would most likely be another week.

But for us, and I think for the type of tumor my dad has and location, he has very little pain, if any.. Maybe some pressure in the head, but not painful. He is very content, relaxed and can still communicate a little.

It is a long journey, but when the end comes, I think there will be some weight lifted off our shoulders. As he is fine and life does go on.

We don't know if my dad will pass away overnight or with us present. I guess we will see which he prefers, as that is entirely up to my dad.

I am sorry that your father was only 58, as I am sure he had much more life left. My father is 71, lived a wonderful and mostly healthly life and that is something I can be thankful for.

Stay well and please feel free to talk to us, so we can help you through some tough times.

BC

jackiekeefe · Regular Joined: 26 Oct 2006 Posts: 17

i am so very sorry for your loss, my dad is 59. He was just dx in September with GBM and we are finding out today about treatment which is starting this week they did throw Cyberknife out there and we will find out today. If you dont mind can you get me up to speed with what happened with your dad and his dx.

Again my thoughts and prayers are with you and your family.

God BLess,
JAckie

bc · Experienced user Joined: 11 May 2006 Posts: 54

Hello,

I can tell you what has occured with my dad, as he did have the cyberknife.

He had total removal in jan 06 , than 6 weeks IMRT radiation and Temador. After the 6 weeks, he had some new growth, which they said can occur - it was in an inoperable area, so they did 5 days Cyberknife radiation in May. That seemed to slow the growth of the tumor for several months. They said it can work up to a year in slowing the growth, but it doesn't shrink the tumor.

I think my dad being older, tends to lead itself to a quick change, where in sept the MRI was good, than in Oct, it showed rampant growth. That is what this tumor can do, and it can change quickly.

One other treatment to look at is Avastin, where this can shrink the tumor, but does carry some risk in that the tumor can bleed.

I think there are some post in this forum about Avastin, so you might want to inquire about that.

Hope this helps.

BC

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

I am so sorry for your loss. I know exactly what you are saying when you say that "Even though I feel some relief that he is no longer suffering, I just wish he was here so we could keep on taking care of him." I know for me that feeling lasted quite a long time. My dad was 56. Nov 14th will be our 1 year anniversary of his death and some days it is still so fresh. I wish you and your family the best and know that you have people that are praying for you and that know the pain that you are going through.

Michele
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Michele

Sammict · Posted: Tue Nov 07, 2006 7:17 pm Post subject: Re: My Beautiful Dad

Dear Jackie, BC and Michele,

Thank you for your kind words, it really does mean a lot to know there are people who know what I'm going through.

Jackie, you asked me to tell you what happened with my Dad, so here goes:

Dad was 58yrs old, always healthy, apart from the odd cold and migraine every now and again. One morning he was having breakfast and got a cramp in his calf. He walked up and down the house trying to shake it off, but when he came back to the kitchen his shoulder was hunched up under his chin and then he started to twitch. My mum called the hospital who told her to get him down there asap. By the time they arrived 20 mins later my Dad had gone into a full seizure and was thrashing around on the bed. They sent him straight away for a CAT scan and MRI Scan, which is when they found a tumour that spread right across the left and right frontal lobes.

They needed to operate and booked him in for 3 days later. The surgeon came to see us following the op and told us that he thought it was GBM Grade IV and that he had managed to remove 90% of the left lobe tumour but couldn't touch the right side as it would have done more damage than good. A few days later, pathology comfirmed the GBM IV, yet we were nowhere near prepared for the prognosis they delivered which was 6 months.

Dad was then put onto Dilantin, Dexamethasone and Zantac until he could start his combined treatment of Radiotherapy & Chemo 4 weeks later. His treatment lasted 6 weeks, 20 sessions of radio focused on each side of the frontal lobes and then 10 extra sessions on the sides and from above. He had the maximum radio they can give. His chemo was a small dose taken orally every day for 6 weeks. Dad didn't have any side effects from the treatment apart from tiredness, which I am eternally grateful for. He was still "Dad" and seemed to be doing so well, that we had high hopes for the post treatment MRI results.

However in a matter of days of the treatment ending, dad went downhill big time. He was confused, agitated & weak. He would also be so sleepy that he would fall asleep standing up. They had told us to expect the onset of "sleeping syndrome" for upto 6wks after treatment (that it was normal). However, his behaviour wasn't and they decided to triple his steriod intake. This worked for about 24hrs, then he went back to the confusion, he was doing and saying some very bizarre things. So they then gave us Rivotril drops to give him when he was getting agitated, which did seem to help, but they made him even more tired.

3 weeks following treatment Dad had another seizure, the first since being admitted to hospital 3 months before. A few days later we went for the MRI scan. At this stage Dad was still talking to us and eating, but he had lost strength in his legs, so was in a wheelchair. He was also sleeping more and more. The MRI scan showed that the tumour had tripled in size. Unbelievable. The doctor told us Dad had less than a month. Within a week Dad had stopped eating and drinking, and was put on a 24hr Morphine pump. He was no longer taking his medication as he couldn't swallow. A week later Dad stopped talking to us and two days after that he passed away.

Everything happened so quickly. A lot of people think that the treatment didn't work, but I think the treatment acted as a dam of sorts, and once it was taken away the tumour just went crazy.

Jackie, you have to remember that everyone is different and that medications and treatment effect different tumours differently. What has happened to my Dad may not be what happens to your loved one. But I know why you asked me the question, you want to know as much as you possibly can and be prepared somewhat. I was the same. I didn't really want to know the answers but I didn't want to be in the dark either.

The one big thing I have learnt in the past 4 months is that you can't plan anything and that you don't have any control in what someone else's destiny is...it's heartbreaking but true. I also realised that although we know we have "limited time", we still, as humans, take it for granted.

I was lucky in that I got to spend a lot of time with my Dad and said everything I wanted to say to him. I cared for him up until his very last breath, I carried him to his grave. Not many people get that opportunity, so please to anyone reading, if you have something to say to your loved one, say it now, don't put it off for another day.

With love & best wishes
Sam

Sammict · Posted: Tue Nov 07, 2006 7:19 pm Post subject: Re: My Beautiful Dad

BC,

How is your Dad going?

Sam x

bc · Experienced user Joined: 11 May 2006 Posts: 54

hello,

We thought yesterday my dad was going to pass away.. but he is still here.
His breathing has changed... He breaths for 15 secs and stops breathing 45 sec... and that just continues...

I am certain he won't last another day and that is ok. He had no pain from all of this and really not living these last few weeks.

We are lucky as this was so easy for my dad and that he has been quite relaxed and content. We know of many others who have cancer and have quite a bit of pain and discomfort. So we take the positives as we can.

Will keep you updated

BC

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

BC,
Just want you to know that I am thinking of you today. My dad did the same thing in the end. He held on longer than you might think, but finally we told him that he didn't have to keep trying for us, that he could go in peace and within an hour he did. You and your family will be in my prayers.

Michele
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Michele

Sammict · Posted: Thu Nov 09, 2006 7:49 pm Post subject: Re: My Beautiful Dad

BC,
I am thinking of you also. My Dad held on for over 24hrs and like Michele, we all told him it was OK to go, that we would be OK. I also told him that he musn't think he was letting us down in anyway, that he had never let us down and that this wasn't his fault. It wasn't long after that he slipped away.
With love & best wishes
Sam

bc · Experienced user Joined: 11 May 2006 Posts: 54

hello,

I wanted to let all of you know that today my father passed away. He had a wondeful 11 quality months since his diagnosis. When the changes occurred, they came quickly and it truly was a blessing.

I find comfort in writing to you all. It is very hard to see your loved one progress from someone who can walk and be alive to becoming bedridden and not able to take care of themselves.

Thankfully my father was not completely aware of how bad he had progressed. This is something to be thankful for and the fact that he was painfree.

This forum has been great, both for support and advice.

I wanted to send an internet link for those who will need to find answers in hospice care and the ending stages of those battling brain cancer.

This link was so helpful to me!

http://www.brainhospice.com/

BC

Sammict · Posted: Fri Nov 10, 2006 9:45 pm Post subject: Re: My Beautiful Dad

Oh BC,

I'm so sorry to hear about your Dad. Even though we expect it, it is still such a shock and so heartbreaking when it does eventually happen. Thank goodness it was peaceful and that he wasn't suffering.

My thoughts are with you and your family. Let us know if you need to chat at anytime.

The next few weeks will most likely a be a whirlwind for you with all the things that have to be organised. It's when you have to get back to some kind of routine that it starts to sink in. It's only now (2 weeks later) that I'm noticing how tired I am, grumpy, unmotivated and run-down. My mum, sister & I have all come down with a virus in the past week, I think it's due to pure emotional, mental and physical exhaustion. Make sure you take care of yourself BC.

Speak soon
Sam x

vintage · Regular Joined: 12 Jun 2006 Posts: 35 Location: Minnesota

Hello Sam and BC~

I am so sorry to see your Father's have passed away.
I know how hard it is.... The grieving process will continue and things
will get better with time. I am so sorry for your loss.
I will continue to pray for you....
hugs to you both..
Kevan

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

BC,
You continue to be in my thoughts in prayers. Tomorrow is the one year mark since my dad passed away. Still good days and bad days for me. I wanted to thank you for the website you posted. I wish I would have seen that when I was searching for answers. It was right on target with the timeline and we saw many of the symptoms listed in the timeline for passing. Not one of Dad's dr's would just come right out and tell us what we were really looking at time wise. We kept searching for answers and looking for hope and if we would have had the brainhospice.com site we would not have wasted the time or dad's energy but just taken the time we had with a little more peace. All the doctors kind of skipped around the fact that death was imminent and we were still having blood draws and checking levels and having MRIs just a couple of weeks before his passing. In hindsight all of this was so unnecessary and a huge drain on Dad's energy. The site has also been an affirmation to us that we really did all that we could do. Everyone's story is a little different, but in the end we all have basically the same story to tell.

God bless you and offer you comfort in your deepest sorrows.
Michele
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Michele

Kris · Posted: Wed Nov 22, 2006 3:46 pm Post subject: Re: My Beautiful Dad

Dear BC, Sam, Michele, Kevan

I could not connect to the forum for a long time, as I've been back home in Hungary with my Mum.

BC, Sam, I am so saddened to hear about your beloved ones having had passed away.

SAm, the way you described the last weeks and days, is exactly the same way my Mum is going down the slope, same symtoms, same timing... she was diagnosed with GBM on 20 July, she/we opted for only palliative care, no surgery, no radiation, no Temodar; she's in Hospital since 4 October, she's on increasing doses of morphine since 6 Oct, she's not eating/drinking by herself for 2 weeks (she's receiving perfusions), she's not able to speak for 1 week, and she slipped into coma yesterday.

She had more than 2 months of good quality life, but since she's in Hospital, she has been suffering a lot physically and mentally, too. She had head-aches even under the morphine, nausea and vomiting, immobility and she also slowly lost her eye-sight.

Last WE when I was with her, she was already in a very bad condition. She was sleeping most of the time, but her breating was irregular: she took a breath only 4-5 times in a minute. I whispered to her ears "Mum I love you so much", and she was able to respond to me very silently, weakly: "And I love you even more". That was our last chat, as 24 hours later she was not capable to communicate anymore.

Now she can not be awaken, she does not react to pain-tests, but she's showing signs of nausea, so she's still not in complete peace.
The hardest thing for me is that I had to come back to Geneva - I had no choice, I couldn't manage to leave the 2 kids, my husband and myself, too, have work-related duties, as life must go on... my brother is with her constantly, he'll stay beside Mum until the very last moment.

I'm crying almost all the time, my pain is too much the mirror of her pain, and I love her so much that I leave my egoism behind and want her to leave this world for reaching the eternal peace. That will be a relief for her, and a grieve for me.

I'll keep you posted. Thank you for being there.

My prayers are with you all.

Kris

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