storm
After some 21 months after her operation for her GBM grade 4 brain tumor Lorraine died on the 1 October 5.43 pm 2012. She had multiple seizures some 8 weeks ago. Hospital for a week and new medicine. She has lost most of her mobility on her right side. Full time nursing wheelchairs, eating and toileting Two weeks before her death she had extreme pain in her bowels/stomach area. Hospital again. Back home after a week now with morphine with increasing levels for pain management She is sleeps/unconscious most of the time The following is extract of a text of a message intended to a soul travelling the same path as us... Lorraine is so close I have been sitting and waiting. Waiting with the dread of when she dies, I walk out of the bedroom when I return looking with anxiety whether she has died. She has been without food and water for 6 Days(?) and the days roll into each other I loose concept of time. She had an extreme pain last night, I got freaked out gave morphine booster she settled after 20-30 minutes, meantime frantically ring for advice/ help. I am scared - her constant "sleep" of 2 weeks since the hospital has been challenged.... next time I face where you are and face the pits of blackness. My anxiety levels are shot. I am so tied sick of the constant grief that engulfs me. her breathing yet changes again f_ck... She died 2 days later semi unconscious/asleep (her consciousness - I do not know I lost communication with her so long ago - her tumor fixed that). This was supposed to be a 'good death' - it was crap I hated it her surviving in this stupor state. Euthanasia is kinder for her (or is it kinder me and both of us?) we had our dog euthanasia last year after he became paralysis-ed from the neck down - stayed for his death - that was harrowing too. So I have no answer there is guilt on both sides But we do prolong our deaths with medicanes. This is not natural and the prolonged makes it more so. And now some 2 weeks on the connect between there and now her physical presence - gone there is no 'psychic" feeling just some patches of memories but more so her death a day or so after the above She wrote what she wanted for her funeral well over a year ago included the Goons "walking back home for Xmass:.... so hard to find how to use it in an eulogy - their irreverent BBC English humor of the 50s. and Beethoven's 9th the Ode to Joy - it now constantly reverberates in my head Edith Piaf & another. I was travelling OK during parts of last week and went back to work 2 days after funeral (got to go to her sister in NZ with part of Lorraine's ashes sister is sick too with just recurred non-Hodgkin lymphoma & 4 weeks in hospital with extreme mouth ulcers & then hospital infection) An issue with work - grief has swung back with a vengeance 3 days recapture of last 21 months - times before Lorraine's son's death, the grief of mime but more so the grief of Lorraine's... that black 2nd year, she a darkened shrunkened spirit in somehow not filling her shell. A close work mate committed suicide while I was nursing Lorraine, he was supposed to look after me as I traveled my path, bastard.... I miss him.
15 Comments
peanutz
Frequent Contributor
I'm sorry for your loss, Geoff. It's not the end result that we want but Lorraine is no longer suffered. Sometimes I wish I had had more time with Dennis but I think it's the best for both of us. I still can't believe how quickly he had gone. One day we were planning to take him home and I was worried that he hardly ate or drank and the next day he's no longer there. I find talking to someone about what happened helps me a lot. I hope my friends don't get sick of hearing my story/frustration as it's my way to get things out of the system. Also, years of practice not getting angry or upset about things that I'm not happy and put it to the back of my mind and forget it has been beneficial to me during this time. Sometimes I wonder why I haven't cried since the funeral. Am I a tough old b!tch or acting like that when I'm around people does make me become one? I don't know the answer. All I know is that Dennis isn't going to be happy to see me being all sad and stop living my life. mmm I don't think I'm doing a good job in helping you during this tough time.
0 Kudos
Jules2
Super Contributor
Geoff I am sorry to hear of your loss. Cancer is such a b of a disease. Then to lose your friend aswell! Such a tough time for you at the moment. hugss Julie
0 Kudos
Rain_76
Occasional Contributor
Hi Geoff I know what you mean about it not being the death/passing you wanted or they deserve Gary had seizures right to the end, and one of the tumours stopped the morphine getting in so he felt every seizure, the kids (29 to 33) said they will never forget or do that for anyone again, I feel cheated as we were told it would be peacefully, I have returned to work and feel lost as 5 months off everything changes I really don't care about it but it makes the days go by, everyone says how are you, I lie and said fine, one time I just said my husband died how the f,,,k do you think I am, then felt awful for saying it. Your mate wasn't being fair to you or his family. I hope you are ok as best as you can, hugs Lorraine
0 Kudos
rarsie
Contributor
Hi Guys, I know how you feel about the quickness as with you peanutz, and the horrible way they are before there last breath. We think we know how its going to end but its such a individual thing with GBM. I know the first words I said after the Doc said he has gone was" Thank God " ( and I am not religious )the hardest for me was to see my beautiful boy not capable to do anything for himself and the pain until they had to Med him till he couldnt respond. How cruel, I feel both your pain peanutz and Geoff. Nothing more I can say Sandra (rasie )
0 Kudos
storm
Contributor
Hi Nat -you tough old bitch its a pleasure to talk with you:)and you say mmm I don't think I'm doing a good job in helping you during this tough time. ha....there is an old saying what you see in another is a reflection of yourself Your just posting is good I have a history with you and the others where we have posted to each other. It reasuring for me I have a deep feelings for all. You are a good woman Nat but really whatever way of dealing with grief works for you is good. Me I talk to each new person who asks and the experience re attacks my grief I let it ride out, observe and it disparates I get sick of it. Its always there under the surface My intense grief is shifting In a lot of ways I envy you Dennis's death I hated Lorraine's it was too drawn out i got drawn out to extremes. But if the reverse had happened I would have again envied you Dennis's death - just different, all is horrid. They leave us. My thought of your Dennis, again your hollowed heart I am trying to piece together fragments of Lorraine Her mask of terror - the radio therapy mask(she had claustrophobia) a Chinese coat that the material is disintegrating, her embroidery scene of her grief after the death of her son, her statue of Quan Yin goddess of mercy that she lent to to help sustain herself. She is gone and its odd ....she should be here so now I try to piece an physical presence its some sort of shrine I suppose. Presently it works for me helps me deal with loss and the empty stage as the my short term memory of her recedes - is not reinforced with her presence and loneliness starts to set its grip. So I build my little shrine like millions of others Hugs Geoff
0 Kudos
storm
Contributor
Hi Lorraine (sh-t same name) I have met another 2 Lorraines over the last 3 months and now you....to its unusual. Not a Scorpio too? Work does make the days go by and its tiring dealing with people's compassion/pity more so my grief as it resurfaces each time especially when a new person asks. So far I think most people have been met so i expect less grief. Weekends tend to be crap & I want to hybernate. The ongoing seizures that Gary experienced sound terrible, they are hard to watch - to be there, well Lorraine's experience of the multiple seizures on that one night was for me. Your kids OK and you? me - I vary from day to day. Thank you its good to "talk" with you Hugs Geoff
0 Kudos
storm
Contributor
Hi Lorraine (sh-t same name) I have met another 2 Lorraines over the last 3 months and now you....to its unusual. Not a Scorpio too? Work does make the days go by and its tiring dealing with people's compassion/pity more so my grief as it resurfaces each time especially when a new person asks. So far I think most people have been met so i expect less grief. Weekends tend to be crap & I want to hibernate. The ongoing seizures that Gary experienced sound terrible, they are hard to watch - to be there, well Lorraine's experience of the multiple seizures on that one night was for me. Your kids OK and you? me - I vary from day to day. Thank you Lorraine its good to "talk" with you Hugs Geoff
0 Kudos
storm
Contributor
hi rasie (Sandra) Lorraine's last 2 weeks were the same - crappy/terrible. Lorraine and you also have the loss of your sons in common, and that is just horrid too. My thoughts and hugs Geoff
0 Kudos
Rain_76
Occasional Contributor
Hi Geoff, I was going to sign my name Rain instead of Lorraine it what my family call me and I am a Aries but us all Lorraine's are good people as you would know with your Lorraine. I don't think the kids are fine but I'm sure we will be one day. It is funny but Gary's cat slyvester doesn't let up in the morning till I get up, like he knows I can't be bothered to get up n go, he never leaves my side, I suppose he feels it to, he is 10, so I have him to look after now. We have all been so full on being carers for so long looking after our love one's then they go, and we are left at a full stop, our life full on looking after them, then nothing, I think that's the problem why we feel lost. I have a daughter here and 3 of my grand kids so that keeps me busy, and I am starting back at bowls, won't be the same without Gazza. I drive past the cemmerty everyday to work n back and hi to him, will be better when his headstone is finished, I organised it 3 weeks after Gazza went, we talked heaps about it all when he was better. I miss him heaps, been married to Gazza since I was 17, 36 years is a long time, I have sad days and little things make me tear up, but you know what we have to take day by day, baby steps, so keep strong, we need to do it because that's how they would want us to do. Hugs Rain.
0 Kudos
peanutz
Frequent Contributor
Hi Geoff, How are you doing? I'm travelling OK, I think. I try to keep myself busy. In the past 3 weeks, I've managed have something on my diary every couple of days so that helps but I can't seem to concentrate on work too much. I guess I kept thinking about what to do next. All I know for now is I'm heading home to see my family in 7 weeks time and I've made a plan to travel for a couple of months next year. I don't know how I'll manage. I've never travelled on my own before. Well, I'll be with tour groups and such but it's still me alone without anyone I know. I hope it'll give me a bit of a break from everything, give myself time to think and be independent again ... away from my comfort zone. Although I've been considering taking Dennis's pillow with me. Would I look weird travelling around with a pillow? Well, I do think I've done well so far. I passed a driving test 3 days after the funeral. As a few months before Dennis was diagnosed I've done a car lease for him as a special treat, I'm stuck with a big Holden Commodore for another year and a half so I'd better know how to drive. I've been driving myself to train station every morning, got a slow leaky tire fixed, got wheels alignment done, changed a toilet seat, relight our hot water system, all the manly stuff that I never bothered in the past hahaha I think I've made Dennis proud. I told him in his final moment while he was still fighting that he can have a rest, I'm a big girl and I can look after myself. 🙂 People asked how I could bounce back so quick. I don't think I am but I just have to live my life and they don't see me when I grief on my own. It's so weird typing all these made me sad and miss Dennis so bad again just like when I spend time with Dennis's kids. Like you said, we have a history and it brings back memory. 😞
0 Kudos
storm
Contributor
Hi Nat Dennis's pillow sounds like a very fine item for you to travel with, totally comforting. Wow you are taking such big strides into the outside world. You sound like you are proud of yourself.... yes I am grieving and I am having my life at the same time and I am doing such things I have never done before.,,,, Wow a slightly dusted off Nat is emerging into the big world, anyway that's my reflection of where you, are you make me smile am glad for you Do you tell those people of what you are experiencing, I reply to general comments that I am up and down at any particular time, that way I mostly can say where I am without having being swamped by my feelings at inappropriate times (ie at work) The writing helps me too, brings my sadness to the surface so that I can air it out yet again. It's Ok, it hurts a bit less each time, brings Lorraine flooding back into my life, i like some of those memories well in my mind for those few moments of reflection, its nice to relate back to her. I picked up her ashes Friday, its odd her sitting there so quietly. I am off to New Zealand to see Lorraine's sister (whom has low grade re-occurred non-Hodgkin's lymphoma disease and very bad mouth ulcers for 3 months) next Sunday. I am still stuck on Lorraine’s non-intentional biggest gift to me Beethoven’s 9th and I read her GBM journey into the music and her death into the finale with the Ode to Joy. I know when my grief is close to the surface - the symphony is reverberating inside my head. Hugs Geoff
0 Kudos
peanutz
Frequent Contributor
Hi Geoff, I wouldn't say I'm proud of myself. I just try to survive by keeping myself busy. I would trade my independence with having Dennis back any time. I find myself missing him more and more each day. Perhaps, I'm not in shock any longer. It is weird. The first 3 weeks I was fine and now this week has been hard. Jim Stynes' book and those songs and series that I used to listen/watch with him do not help either. While travelling to work on the train, I listen to the songs that I like which were introduced to me by Dennis) and remember time when I listened to them with him and it makes me teary. Thinking about him while typing this has made me cry... shit and I'm at work. So a new rule noted, don't open cancerconnection from work. 😞
0 Kudos
storm
Contributor
Nat Special songs and music have a way of reconnecting me as well(Lorraine requested Beethoven's 9th at her funeral I am now very indulgent in it) Well I am proud that I have journeyed this gruesome way with Lorraine and also in some ways not so Ps. You swore! I am impressed and very proud for you:)-. I found that talking with people at work and ended up teary to and opening up cancerconnections site and writing Hugs Geoff
0 Kudos
peanutz
Frequent Contributor
Hi Geoff, don't you worry about me swearing. Dennis taught me all the Aussie slang and swearing words! He's a country boy so he also taught me a few interesting Aussie saying too. I try to be good here; otherwise, the admin may ban me hehehe
0 Kudos
SILLY
Super Contributor
I am sorry that I have not posted a reply to this post as I have not been reading all on this site lately . This must have been an incredibly difficult time for you and now that a half of a year has gone it still must be . I am sorry about your loss and that your friend is gone too .
0 Kudos
Post new blog
Talk to a health professional
Cancer Council support and information 13 11 20Mon - Fri 9am - 5pm
Cancer Information and Support

Online resources and support

Access information about support services, online resources and a range of other materials.

Caring for someone with cancer?

Find out what resources and support services are available to assist you.