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sandraW
Posts: 1008
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Mon Aug 29, 2016 2:23 pm

Hi W&M
Thanks for that, that's a really lovely welocome back.
I had a lovely much needed break thank you very much. Its 16 months since I lost Trevor now, I went to Mexico last year with my elder son and his wife and two children for 10 days but the loss of Trevor was still very raw, even so we did have a lovely time. This year I went to Morocco with our younger son and his family, they have a 11 week old baby baoy and an 8year old daughter. We went for 3 weeks, 2 weeks at their appartment and a week at at beach resort, I made the descision not to use my phone or the internet for the whole holiday as I felt I needed a complete break.
I also read the book Patrick Swayze's wife Lisa, wrote about his 21 month battle with the disease and how she too had to fight for treatment for him, even though they had private insurance and money. She explained how she felt keeping on top of all the meds and making sure the drs knew all the facts when he was admitted ect, how wearing it all was and how at the end of it how worn out she was. And, how even though she had done everything she could she still felt that she had failed him, a feeling I know I still have and have read others have too.
She said how the doctors wrote him off immediately telling him he had only weeks to live, yet he lived for another 21 months and made a TV series, The Beast, doing some of his own stunts, wrote a book and recorded the audio book too, as well as riding his horses on his ranch. In some weird way it put things into perspective for me that even though you throw all you can, money, expertise, all the chemo treatments available, he had Folfox, Gemcap, Gemcitabine, Abraxane, and Oxilaplatin as well as numerous surgeries for stents and bypasses the disease will always win in the end, no matter how brave the fight.
I realised again just how lucky my Trevor was, as he stayed remarkably well throughout and managed to live his life well through his 21 months of treatment, his decline being sudden and I am now sure due to an infection not the actual disease itself, dying the way he would have wanted quickly and with his pain under control, even though he was determind to beat the disease right to the end.
Somehow, I just feel more at peace, well for this week at least lol.Thanks again love sandrax xx

Wife&Mum
Posts: 393
Joined: Thu Dec 03, 2015 3:12 pm

Re: Trevor's Story

Postby Wife&Mum » Mon Aug 29, 2016 3:40 pm

So pleased you had a good break. No phone & Internet seems like a very sensible but very hard feat to achieve. You must have an iron will!

Thanks for sharing about the Lisa Swayze book. I wonder if that heart-rending feeling, that one could have done more, is an inevitable part of caring/grieving for someone with such a tough disease. I hope that you find it becomes less and less intrusive and that today's peaceful feeling becomes a more frequent companion.

I would just like to say that for some PC patients I don't think the disease will necessarily win in the end. Let's keep our fingers and toes crossed, anyway. Hope is massively important and there may be a wonderful treatment breakthrough around the corner.

W&M xx

sandraW
Posts: 1008
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Mon Aug 29, 2016 6:13 pm

W&M I hope and pray that there will soon be a massive break through every day, if it could be diagnosed earlier, so surgery is still an option then the patient can win, I hope the young american teenager Jack Andraka can get his test passed soon, as that sounds promising, cheap early detection is deffinitely the way to go, if its cheap then it can be used if the doctors think there is a chance of the symptoms being PC, lets hope there is some good news soon, sandrax xx

Dandygal76
Posts: 728
Joined: Sat Mar 12, 2016 9:49 am

Re: Trevor's Story

Postby Dandygal76 » Tue Aug 30, 2016 6:43 pm

Sandra, it sounds like you had a lovely time in Morocco and I think stepping away from the internet does not hurt at all. We cannot allow this disease to define the rest of our lives, we have to push to move beyond it although I am always grateful of your support. W&M is right that in the forum quiet moments you can be quite stoic and a firm support and I have appreciated every one of your posts to me.

I am glad the book helped you.. we truly are between the devil and the deep blue sea on these decisions and we all have to remember that the alternative decision would be unlikely to make that difference. The odds are truly stacked against us.

Trevor was lucky... not to get this disease and not just because he made it 21 months. He was lucky to have such a caring and lovely woman in his life to carry him though all he went through. x

Marmalade

Re: Trevor's Story

Postby Marmalade » Fri Sep 02, 2016 11:59 am

Lovely to hear from you Sandra and I've ordered the book! Much love M xx

Proud Wife
Posts: 720
Joined: Sun Jan 17, 2016 9:28 am

Re: Trevor's Story

Postby Proud Wife » Thu Sep 29, 2016 8:07 pm

Sandra, you are always so lovely, caring and kind to all of us, I often wonder how YOU are coping as it's what, getting on for a year and a half now since you lost Trevor? Just checking in that you are okay and wondering if it is true and it does get a little easier with time?

lots of love
PW xx

sandraW
Posts: 1008
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Sat Dec 23, 2017 1:42 pm

I just had to use my 1000 post to post on my beloved Trevor's thread who I still miss dreadfully, especially at this time of year.
I also want to wish all forum members past and present, and the others who although they don't post, read the forum and hopefully get help from it, the best Christmas they can have and also
the very best wishes for 2018,
To all my forum friends, our wonderful nurses here and to everyone touched by this insidious disease may the New Year bring peace and joy love sandrax xx

Veema
Posts: 404
Joined: Mon Feb 02, 2015 5:35 pm

Re: Trevor's Story

Postby Veema » Sat Dec 23, 2017 11:27 pm

Lovely post Sandra...I hope your Christmas is also the best it can be. I'm finding this second Christmas much harder than the first, but have to get on with it for the child's sake.

Much love,

Vx

Justamo
Posts: 435
Joined: Sun Sep 04, 2016 9:38 pm

Re: Trevor's Story

Postby Justamo » Sat Dec 23, 2017 11:44 pm

Sandra, it's people like you who make dealing with this just a tiny bit more bearable for people like me.
With love, Mo