Hi, new here

Kris · Posted: Tue Oct 03, 2006 3:16 pm Post subject: steroid

Dear Sammict,

I join the others prior to me saying hello to you, but what a pity you have to be here... I hope you'll find some help by reading our posts, I'm literally "relieved" by sharing this monsterous experience with all my friends here.

When my Mum was diagnosed with her inoperable GBM (right lobe) on 20 July, I felt completely lost and could not stop crying hard for several days without a break... now I'm still crying a lot, but at least not feeling totally alone in the world with this terrible sorrow.

As I said to Chain, bc, vintage, cgForrest, Michele and Jen before, my Mum's tumor was so much advanced already growing into the corpus callosum tending towards the left hemisphere that we had no surgery as option, but radio and chemo could also not have brought too much of hope - we wanted her in the best quality of life as long as possible so we opted for palliative care. (Her doctors gave her only weeks, or a few months left...)

Now it's for 2.5 months that she's been on steroids and fentanyl patch only. After several trials to titrate the steroid dose that would avoid her having headaches (as bc said before, swelling around the tumor can be reduced by steroids), they decided to put her on 3X daily i.m. steroid.
Then they started to reduce the dose to 2X daily, then now she's only on 1X i.m. injection in the evening.

Her face became "round" due to steroids and her left ankle is extremely swollen with bad circulation.

She slowly started to lose her physical strength, started to move very slowly and now, today, she's practically not capable of making even two steps - she falls like a doll who has no life in the legs... above this, she started to lose her short-term memory, though her long-term memory is still sharp and intact.
But when the steroid dose was reduced to 1X, she started to have headaches again and that is terrible for her, for us to see...so, they doubled the dose of her fentanyl patch (Durogesic 100 microgram per hour) against the pain.

She also lost her control over her bladder, I could rather say she became completely incontinent.

She's also not feeling when ashes burn her skin when smoking, as trembling hand and weak concentration leads to cigarette falling out of her hands - she almost burnt a pillow in her wheelchair so now there's always someone carefully watching her when she's smoking.

She needs 24-hour assistance, so we have 2 Hospice nurses taking care of her, one for the day, for for the night. As I live far from her - I'm living in Geneva and she's living in Hungary, I try to fly there every 2nd week-end, but it's extremely hard as I have to manage my life here- 2 kids and husband, work - but my heart and soul are constantly over there with Mum. Fortunately all the other family members are there with her.

This is a mixture-reply to several of your posts, I'd also like to address the terrible feeling of not knowing how long will this still go on, how long she'll still live...just after the diagnosis, they gave her weeks or max. few months...now seeing her deterioration so quickly, I'd prefer that this should not take long. I know you'll all understand what I mean...

What I'm scared of the most - what if I can't be there in her last moments due to the distance that separates us...

As I have no hope left, the only thing that I can go on doing is embracing her with my love, embracing her and caring for her as if she was my little baby - some years ago she was caring for me and changing my nappies, and now the roles are the opposite....I love her so much, so strong, so eternally.

You're in my prayers all.

Kris

Chain · Posted: Sat Oct 07, 2006 3:16 am Post subject: Re: Hi, new here

well, I have gotten a bit slack.
I have been looking in, but not posting. Sometimes this place just depresses me too much.
Things are going OK, my girls sight is poor, she is slightly wonky on her feet, and had more good days than bad days. Shes on 4 dex a day.
We have reading at nights , where we take turns in reading the newspaper for her as she can no longer do it herself.
Im getting over worked and underpayed and dont get enough sleep, and when I feel Im getting to agro, I have a big sleep and it tends to chill me out. Music sometimes makes me cry, the last song that did that was dobie gray, drift away.
her spirits are good and she is no longer terrified of death. she has once again found her beautiful smile and sence of grace irrespective of the irregular headaches and tiredness.
She has had one cycle of intravenous chemo sinse I was last here, but the day she was meant to have it a couple of weeks ago, was delayed, due to her being too sick to handle it, but aftwer being admitted on the day, and spending 3 days in hospital, she had the chemo and took it well. Her next scan is onthe 9th, and her next chemo at this stage is on the 16th.

She is also *(sounds terrible calling her she all the time) recieving palliative care when we need it, a nurse is on call 24/7 to come to our place and deal with things that we might otherwise have to take her to hospital for.

OK thats all for me now.

Joy I hope all is as well as can be expected for you guys, and I think of you often,.

all my love, Chain.

cg2forrest · Regular Joined: 11 Jul 2006 Posts: 34

Hi All,

Forrest is now on Hospice care. I thank God we got Hospice, for he has gone down hill extremely fast the last 48 hours. I am so scared ...

God bless,
Joy

Chain · Posted: Tue Oct 10, 2006 1:40 am Post subject: Re: Hi, new here

hi Joy,

Im going to go out on a limb here and try with all my heart not to sound too hard, but darlin....

In your situation, the way I would handle it is, just be there for him, hold his hand, kiss his face, give him hugs. Im sure you already do. Your going to worry yourself into an unhealthy situation. I know its easier said than done, and easy for someone else to say, but if... thats IF, your husband is approaching the end of his journey, then, I think the best you can do is just help him be as dignified and as comfortable as possible. The last thing he needs right now is to see you panicky, or afraid. YOu will cause him to feel the same. Remember, he is in his own personal hell. When the time comes its going to be a relief for him, and you. I have begun to look at things this way myself. My girl is growing weaker by the day, and eventually, sooner than later, her personal hell will end and she will be at peace. and that will be a huge relief for her and me.
Keep your chin up Joy, and be strong. Darlin, you of all people have to dig deep now and show him that he doesnt have to worry about his girl.

Chain.

Kris · Posted: Tue Oct 10, 2006 3:54 am Post subject: Journey close to its end

Dear friends, Joy and Chain

Since the past week-end Mum was not even able to move her arms and legs, she's lying in her hospital bed on perfusions and steroids, and she's on 3-4X morphine a day. On Monday morning we talked to the medical staff and asked them not to prolong this final-stage period with perfusions and to give her nothing else than painkiller morpine to avoid her having any pain. It was a very hard decision but it will be better for her, for us.
It has been so hard to endure seeing her deteriorating and going weaker and weaker, that I believe that knowing her being in peace will be a relief. Especially for her.

In my head, I'd love to have her staying with me anyhow, but my heart has let her go: I want her to be in peace.

I'm with you in thoughts and prayers and would like to send you a piece of my peaceful soul to strengthen you in this stage with your beloved ones.

Kris

Sammict · Posted: Tue Oct 10, 2006 10:17 pm Post subject: Re: Hi, new here

Hi Everyone,

Thanks for your replies, it certainly does help to know you're not the only one going through this.

I'm now back in Australia and exhausted, it has been a very hard week trying to sort everything in the UK, and here and jetlag, not to mention coping with Dad.

They have increased his steroids to triple the original amount, but I'm afraid it doesn't seem to be helping. He is still very confused and is now losing bladder control on a regular basis. His appetite is very poor and the weight is just falling off him, he is becoming very frail and tired. He needs to be watched 24/7 and we have now moved him downstairs to sleep in the hospital bed, as the risk of him falling down the stairs is too high.

On Monday he had a seizure which resulted in loss of bowel control and was very distressing for us all. This is the first time he has had a seizure since he was first admitted to hospital in June. We took him for his MRI scan on Tuesday and have to go back for the results on Friday, which I'm very scared about, in my heart I know it's not going to be good news.

I'm feeling very stressed at the moment as I am supposed to be doing my job from home for 6 hours each day (I'm employed by a UK company who very kindly arranged for me to do this), yet Dad needs so much assistance and someone with him all the time that I find myself either looking after him while mum does other things that need to be done or vice versa, and by the time I get to work I'm already 8hrs into my day and too exhausted to do anything! I had also planned to get my own flat while I'm here so that I mantain my independence and space and give mum & dad theirs, but also because I'm worried that mum will get used to having me here and that after dad passes away, it will be even harder for her when I leave...does that make sense? But now, I'm not sure I can move out as I don't think mum can cope on her own, it's too much for one person to cope with....aarrgghh...I just don't know what to do. I guess I just need to wait for these results and then make my decision, maybe I'm worrying unecessarily...

Sorry for ranting.

Thinking of you all and hope you're OK.

Sam.x

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

Hi Sam~ Sorry things are getting harder. Do you have hospice care available there? Or anykind of in home aid? Maybe check on that. At the
stage he's at now, it is only going to get harder. I don't say that to be cruel, just want you to try and prepare.
Keep me posted.....I'll be praying for you.
Kevan

Chain · Posted: Sat Oct 14, 2006 2:07 am Post subject: Re: Hi, new here

Now that my thread has been well and truly hijacked, I think I shall go elsewhere.

All the best.

brainman · Posted: Sat Oct 14, 2006 9:58 pm Post subject: Let's start new threads

This topic (thread) is soooo long that it is hard to follow the flow of the dialogue. Let me suggest that if you wish to continue, start a new thread with YOUR own story. I will lock this thread. Very Happy

Thank you for your cooperation and participation Wink

_________________
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
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