Just to let you know I too am thinking about you all and will be hopine and praying that she finds the strength to get through thsi difficult time.
Thinking of you, and Lisa, and Simon, as I do every day. Hope you are able to see the doctor today and discuss your concerns about the medication and feel comfortable with whatever is decided. This must all be so heartbreaking for you Sue. there are not many people who would be holding up as well as you are. You are one amazing woman, and although I am sure you feel really helpless Lisa obviously gains great strength from you. Please keep posting when you are able, with love. Sarah xx
It seems as though Lisa has inherited your strength and courage. It is a good sign that she is still fighting!
Thinking of you and Lisa.
I've followed this thread over the weeks but don't think I've posted. May have done earlier on. It's so sad. My thoughts are with you and Lisa constantly, and I sincerely hope Lisa comes through this bad patch. Thank you so much for keeping us posted. Hope all goes well today with the doc and Lisa's meds are sorted. Give her a big (((hug))) from all of us on here.
You are all so lovely .. thank you so much ... knowing that there are so many people out there willing her on gives us such a boost.
Things are very much up and down just now. Going to see Dr about reducing her morphine because she is hallucination too much now. We need her to be a bit more back with us as she needs to fight. When she is 'with us' she is telling us very normal things but then goes off into a drug haze again. She managed to tell me yesterday that she remembers some of the fighting on Friday night when she was thrashing about and it was because she thought she was going to die and she was fighting it .. hence fighting the sedatives which would have calmed her down.
Anyway about to go and relieve Simon who hasn't had a very good night as Lisa kept waking up and tried to get out of bed a couple of times. Drs don't listen though and tend to stick to their normal procedure which won't always work with someone younger like Lisa. They say they wanted to keep morphine up because of the pain she was getting in her neck and head before Friday. I keep telling them that the pain stopped last Tuesday when she started to feel unwell but they still repeat the same thing when we ask about the medication. Simon and I are going to catch a Dr this morning together. All my older relatives who have died in hospital have wanted to give in .. Lisa wants very much to live.
Love Sue xx
I hope you're getting some rest tonight.
I'm not a religious person but my friends and family have been sending me so many good vibes recently that I will go into the church tomorrow and see if I can send some Lisa's way I promise. Midday tomorrow I will send all I can. Collectively it may help a little I hope.
Love to Lisa and You for all of us in my little family.
You are all so brave. Thinking of you, Lisa and Simon. My thoughts and prayers are with you through this difficult time.
I've been watching this thread even though I haven't posted much recently.
I just wanted to add my wishes and to say my thoughts and prayers are with Lisa and with all of you.
I am still in the have I/haven't I? stage so feel like a bit of an impostor here but feel really compelled to write a message of support. I hope that they have Lisa in a really big room because there are so many people in there with you in spirit that it must be standing room only. I cannot begin to put myself in your shoes but I think that everyone should have a Sue in their lives in times of need. That everyone here can feel bowled over by the strength of your love for Lisa is wonderous and one can only imagine the strength that Lisa draws from it when you are with her. She sounds like a real tough cookie with a huge strength of personality as well as strength of character and I will be thinking of you both often and wishing you the very very best through this difficult time.
Dear Sue,you and Lisa are on my mind constantly and i am sending so many positive thoughts your way.I'm the same age as Lisa and i know that i would not be as strong as her.Very tough girl you've got there! I really hope you are doing ok.You must be exhausted.Get some metatone tonic from a chemist or supermarket for yourself.It's marvellous stuff.I take it all the time if i feel run down or tired.I have a few spoons and the next thing you know,i'm full of energy again.I wish we could all come to the hospital with you,even if it was just to wait outside,just so we could be there for you or give you a huge hug.You should be so proud of yourself and i know you are incredibly proud of Lisa and quite right too.She sounds like such an amazing girl.I really hope and pray that she soon improves.Lots of love to you both x x
like everyone else i read this thread and am sending you and Lisa my prayers...please both try to get some sleep and look after yourself a bit as well.
Just wanted to add my thoughts and prayers are with you and lisa and family at this difficult time.
love jenny xxx
I just wanted to add to all the other posts here, that you and Lisa are in my thoughts everyday. I hope and pray that Lisa's condition improves very soon.
Like Lilacblushes says, you are clearly a devoted and wonderful mother.
Thinking of you both,
Like many others I read the thread about Lisa daily but don't post as often. She sounds like a very strong character and I hope she continues as such and this continues to help her fight her way through whatever has got a hold of her at this time.
You are clearly a devoted mother and she is lucky to have you there at her side supporting her every step of the way, I salute you and am humbled by yours and Lisa's plight.
I will add my good vibes to those who've posted above me and hope that Lisa has improved today.
just wanted to send loving vibes your way ,you will both be in my prayers tonight ,and i will send up healing thoughts for you when i go to my church .take care love lynn x
So glad Sue that you managed to get some sleep last night - am sure that will help you when you are supporting Lisa. You are all under such stress and need to take care of yourselves as well.
So many people are thinking of you all and hoping/praying that Lisa improves soon.
Lots of love (and hugs) Kay x
its so incredible that you are able to post on here we are all praying hoping swearing doing whatever we can nagging whoever will listen just willing Lisa through this really difficult time. Stay strong.
Monday afternoon. Just popped home for a couple of hours .. still doing the shifts with Simon. I got 6 hours sleep last night and feel so much better. Simon manages to sleep in recliner chair by Lisa's bed but i can't do that so once again I am doing evening until about 11 or 12midnight and he will do the night. We can't leave her as she is hallucinating quite badly and gets frightened.
Well she made it to Monday and the Dr is really pleased about that because it means that something is working. As I said they are throwing everything at her in hopes that one of the drugs is the right one. Still no results by the time I had left the hospital this afternoon. They just know that its a brain infection that has attacked some of the nerves but not what caused it at the moment. The cultures I guess are still growing in the microbiology lab in Poole. She has a complete palsy in face, not helped by the strong muscle relaxers she has been on although they have reduced those today and will reduce morphine again tomorrow. She tries to speak but its difficult to understand her with lips and mouth not moving. If we lean close we can understand however and have found that her sense of humour is still there and her brain is till working as normal .. apart from the hallucinating which we have been honest about and keep telling her its the morphine. I have reminded her what her Grandma was like on morphine so she now understands although gets depressed about it as she doesn't know what is real and what isn't. It exhausts her to talk so she tries to just say a few words at a time. We have told her that we won't leave her for one minute and so we will be honest with her all the time. Some of the staff that haven't seen her since Thursday when she was so bright and reasonably normal apart from being in pain have had a shock this morning. One nurse said she even dreamt about her one night. Staff .. Drs nurses, cleaners, receptionists and even the catering lady came straight to Lisa's room this morning to see how she was. They have been wonderful and have all been willing her on. A very popular girl is Lisa and it has been a shock to everyone. She is such a fighter and we hope she keeps on fighting. The Dr said she is so strong willed and its pulling her through so far. Trouble is no cancer treatment going on at the moment which is worrying Lisa and she keeps asking about it. She is too ill to have it. Its at times like this that I have heard people say about the cancer taking over when infection takes hold. The chemo nurse said that the chemo and Avastin will still be working though and not to worry at this point.
Pity its so hot again today because it makes Lisa's temperature go up. The hospital is so hot today. We have a fan in Lisa's room but its not a very good one.
Cautiously optimistic for a day .. but we know we aren't out of the wars yet ... just taking each day as it comes.
Thank you everyone for your comments, prayers and thoughts .. something is spurring her on and its must be all the good vibes from you lovely people on this site. Believe me she is worth it and thats a totally unbiased opinion!! Quite a lot of people's lives will be the poorer without Lisa... not just ours. Such a caring girl always.
Love Sue xx
I can only echo what everyone else has said. I read your thread everyday for news on Lisa, although I dont really post much at the moment.
I do hope you have managed to get some sleep and that Lisa had a better night last night too.
I am hoping that things will turn a corner for you all very soon, you have had so much thrown at you all and poor Lisa, my heart goes out to her, I cannot imagine wot she is (and all of you) are going through.
Sending you lots of love and cuddles
I've always looked in on this thread but haven't wanted to post for a while, although Lisa is frequently in my thoughts. I do hope she had a better night last night, and of course that you did too and managed to get some well needed sleep.
Words seem so inadequate right now, but I want you to know that I am thinking of you all and praying (although I'm not usually religious!) that things improve for you all very soon.
Hope you got some sleep Sue. Just to echo everybody else - words are not enough but you know our thoughts, hopes and love is with you every minute of every day.
Another morning, and I am hoping that you managed a little sleep. Thinking of you with all my heart, and joining the tide of love and positive thoughts coming to you and Lisa from everyone who has been following the ups and downs of the last few months. We are all here for you Sue, as inadequate as that feels. Your heart must feel as though it is breaking - I am so very, very sorry that you are having to go through this terrible time.
Hi Sue, have been watching this thread daily, but didn't really have much to contribute except to say my thoughts and prayers have been with you, Lisa, and your family since your first post. .My post is probably traumatic to you, so don't read any further if you don't want to.My experience with my twin brother, now some 15 years later, has enabled me to come to terms with his illness.
My twin brother got brain cancer, at 49 yrs old , inoperable, all around his head, we believe due to his being the Army's cellular technology expert in Germany some 20 yrs ago - got headhunted by BT Cellnet at 40 yrs old as their Technical Manager.. My scientist husband and b-in-law, who dealt all their lives with radiation, felt cellular technology was to blame, and the jury are still out ...although there was an item on Fox News this week by an Australian oncologist who now believes as we do.
My brother lasted some 11 months after diagnosis...but would never discuss his diagnosis nor prognosis, which I and elder sister found distressing. I spent the last 2 months of his life caring for him, his second wife only caring for her career. My husband, then 73 yrs old, decamped to the Fort where we now live and I stayed in our apt in the Midlands to be available at a moment's notice.
When Bill was terminally ill, the GP came in twice a day, and I gave Bill his morphne to keep him comfortable. The GP wanted to send Bill to a hospice, but he wanted to be at home, and he had his wish. I knew the end was near when I sat holding his hand and he said: "Liz, why are you sitting on a pile of clothes on the other side of the room?" I was just choked, stroked his hand, told him I loved him and he fell back to sleep. Those were his last words, and I was so grateful I was there for him - our parents had long since passed.
He was my twin brother,the most loving and caring person I have ever met, but nothing like having a child with a terminal disease as you are experiencing.
I still have prayers that Lisa can get through her illness...medical science has come a long way since Bill's illness...
With love and prayers for you and Lisa.
Dear Sue,you are doing so well.I hope you get a little comfort from the fact that everyone in here is thinking of you and Lisa.You are a brilliant Mum and i do hope you're managing to get some sleep right now.I will be praying for Lisa,you and your family.Sending so much love to you all.God bless x x
Thank you everyone .. I really appreciate your thoughts, comments and prayers. I am not overly religious but I have been praying a lot lately.
Just left Lisa at 11pm .. Simon taking over for the night. Temperature gone up again tonight which is a worry when she was doing well earlier .. very hot in hospital tonight though. She is not making sense at times and I hope its the morphine.
This has happened so suddenly ... its just so awful... most of my happiness is lying in that bed critically ill and not a damned thing i can do about it.
Off to get some sleep otherwise I won't be any good to anyone.
Love to all Sue x
Just to echo Jacksy's comments, I will continue to pray for Lisa every day and am so grateful that you managed to find the time to let us know how things are, when things are so hectic for you. God Bless you.
Thanks for finding the energy to keep us informed. Hope you manage to sleep deeply tonight. I'll be praying for you all and especially Lisa,
Thinking of all and hoping you find strength from somewhere. Please know that there are many people out here who are hoping for the best for you and who have you in mind.
All the best to you
Oh Sue I am so sorry to hear that Lisa has this to deal with on top of everything else. I also feel for you too - please get rest when you can. Hope Lisa makes a recovery soon.
Love to you both
Haven't been able to write as been at hospital almost solidly since Friday morning. Lisa in bad way .. some type of meningitis infection taken over really suddenly. Whether this was cause of awful pain over last few weeks no one is yet sure. Pain seemed to stop about Weds and then she became ill and generally not well .. vomiting, disorientated etc. Results of a lumbar puncture on Friday inconclusive so they are throwing everything at her antibiotics.. anti viral... anti fungal ( thrush badly in mouth and probably oesphagus) She has been really really bad ... suddenly became really ill Friday teatime and wasn't expected to last Friday night but did ... we were there with her all night while she was in complete delirium and thrashing and clawing about, very high temp etc etc. Worst night of my life ...haven't words to explain .... BUT she did make it through the night .. they were able to completely knock her out by 6am .. she just fought the morphine. She is critical until tomorrow. They lowered morphine today slightly and she can just mumble a few words every now and again but then goes back to sleep. Temperature down to 37.7 today. We are taking in it turns at her bedside 24 hours. Home now for 2 hours and then back for evening shift .. Simon doing the whole night tonight because i have only had five and a half hours sleep since Friday morning in 2 goes.
It was so lovely to hear her speak this morning if only in a mumble .. I managed to wash her and change her nightclothes. She asked what she was doing there and remembers nothing about the pain, going into hospital or anything.
A really scary time but thought you might all wonder why I wasn't posting.
Will give you update when i can.
Love Sue xx
Please says prayers and keep sending those good vibes for Lisa. We need all the help we can get.
Dear Sue,i have just read your posts.I can't imagine how you must be feeling.I really hope that Lisa is getting the help she needs and is hopefully feeling better and more comfortable.I hope someone is looking after you too as i can't imagine the stress you must be under.Sending you and Lisa much love and best wishes xx
Hope Lisa is improving and they are managing to get her medication right and her pain under control.
I have been following this thread and I was wondering how you both are. Hope things are improving. When my friends father was in hospital you could buy a weekly parking ticket from the office, just wondering if that is available where you are.
best wishes to you both
Was just looking for this thread to ask how you both are and like us all on here - thinking about you and hoping Lisa's medication is being sorted out and helping her with the pain.
Love Liz xx
Been following the thread and just wanted to pop in and send you more cyber hugs and say I think you're the most wonderful Mum. It must be so utterly draining for you. i am glad you had some good news last week, and hope they soon sort Lisa out with her other issues so she is more herself and more comfortable.