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anne.brook

The journey has now begun

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Hi Anne,

I am afraid I can not add to what has been already said and I feel I should not air my views about Victoria's husband. Please know that I am still praying for you, Victoria and her family and I will continue to do so for as long as it takes.

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Hi friends

Victoria has had another not bad day. Things are still not going quite to plan, but she is trying to remain upbeat.

It looks as though she will have another transfusion tonight, and there are worries about her oxygen levels, but she is still much better than she was a week ago in that she has no pain.

She was laughing today, telling me that her toes were itching, and it was good to be laughing with her again. We also had her dughter with us, so we had a good girlie laugh.

Even when the doctor was trying to find a vein for the canula, we were kidding him that she was deliberately hiding her veins so that she could hold his hand. However, in truth, after 46 operations her veins are saying "no more".

Although we are a little sad that after such a good initial rally, she has slipped back a little, we are genuinly happy that at least she isn't suffering the pain she has for last 4 years.

Tomorrow the pain team are coming down to see her to start a program to wean her off the morphine. I imagine 600mg a day will take some weaning off.

But all in all we're happy.

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Hi Anne,

Thank you for giving us an update, you will be so drained. But you seem to be very strong.

Laughter is also very good. I found after my amputation i was happy, i thought i was supposed to be sad but for me being happy helped me recover quicker i feel. The many puns we would say without knowing, till the other person would say "YVONNE" but then we would all start laughing. Such as "When i get back on my feet", "Just do one step at a time", "I want to get so legless when i get out". At first my dad would tell me off for laughing. But then soon realised that i was not being sick or thoughtless, and it was my way of accepting what had happened.

Victoria sounds like a gem, tell her we think of her lots

Love Yvonne

xx :blink:

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Guest bearlover

:) Lafter is good! I remeber I also had a little dog visit my room it made me so happy. I was able to pet and hold the pooch. He visited all the patients. This is also good medicine I do love dogs, so this was, a added suprise for me.Victoria continues to be in my prayers. Hope you remeber to take care of yourself too Ann! ;) ;)

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Guest SuzyQ
Hi friends

Victoria has had another not bad day. Things are still not going quite to plan, but she is trying to remain upbeat.

It looks as though she will have another transfusion tonight, and there are worries about her oxygen levels, but she is still much better than she was a week ago in that she has no pain.

She was laughing today, telling me that her toes were itching, and it was good to be laughing with her again. We also had her dughter with us, so we had a good girlie laugh.

Even when the doctor was trying to find a vein for the canula, we were kidding him that she was deliberately hiding her veins so that she could hold his hand. However, in truth, after 46 operations her veins are saying "no more".

Although we are a little sad that after such a good initial rally, she has slipped back a little, we are genuinly happy that at least she isn't suffering the pain she has for last 4 years.

Tomorrow the pain team are coming down to see her to start a program to wean her off the morphine. I imagine 600mg a day will take some weaning off.

But all in all we're happy.

Anne,

I am quite new to this forum myself. I am a volunteer AKA for my left leg on 6/7/06. I fell in the 60's and tore it up and in the 70's they removed the cartiledge. In the 90's osteoarthritus set in and they did several surgeries, injections, PT, braces to try to help it. Finally in 2003, they said they had to replace my left knee. I was 45 @ the time. I was allergic to the metal they put in my knee. During the next 18 months I went through so much pain and suffering. I found a revision specialist who said I had the worst metal allergy he had ever seen and offered to amputate it in 2004 when I had just turned 47. I wanted to try 1 more knee so we tried the ceramic knee, but my metal allergy was so bad and I scarred so bad that it failed. I was living on pain killers and was dragging a dead leg around. They told me I had about a year left to walk. I was already hitting days I could not walk. It was causing other problems with 2 discs disintegrating, bursitus in the left hip and inflamation in the right foot.

So after 9 surgeries, I opted to amputate the leg above the knee @ age 48 (49 in August). My goal is to reduce the pain and pain meds. So far I still take more meds than before, but we have a plan to reduce and we have gradually been doing just that! :D I plan to walk again! I am having problems post op with infection, swelling, pain redness and heat coming off of the stump (I call my stump Abby (abbreviated leg) as I didn't like calling it stump or stumpy so my friends came up with the name). I have home nursing coming in with PT and OT to help me @ home. I have so many friends from the church and my artist group who take care of me every day as my husband had to go back to work. My family that lives here can't help. My dad and step mother don't know how to deal with this so they try to ignore it and visit rarely. My son is a nurse and sees me when he can, but works 2 jobs. His kids come about once a week to see me.

It was a hard decision to decide to amputate, but it has been the best decision I could make for myself. It was truly my best hope for the future. If it doesn't work out, then at least I tried. I will accept the wheel chair if that happens, but I had to try everything possible to get out of pain and to walk again. I appauld your daughter for taking those courageous steps as well. And you for standing by her even though you were scared. I am sorry she is having so many complications. I will pray that the Dr.'s can work through those and get her to where she can start moving forward again. I am glad you are both hanging tough and smiling and laughing at times as it will really make a difference. They say laughter is the best medicine and I whole heartedly agree!

As for her husband, I am sorry to hear he can't deal with it. My husband had a hard time during the decision making process. He supported me, but he was aggitated. When we finally got to get it all out on the table, he admitted that he just wanted to fix it and make it go away and that he was having a hard time seeing me in pain. I told him it was my journey to take and I had to take it, but that he could hold my hand on my journey and help me. We cried together a lot that night, but we are stronger for it now.

I started going to an amputee support group prior to the surgery and they told me that each person would react differently to me and that I would need to not take it personally. Some would be supportive and others wouldn't and still others would disappear. But it was their problems and not mine. I needed to concentrate on my recovery.

So I have tried to be optomistic about this. I think the leg looked ugly when I first saw it too, but it is what it is and it is my new chance to walk again and I all it Abby. Don't get me wrong, I have cried lots during this last month, but then I pick myself up again and look to the future. I think about where I will be a year from now and what I will be doing then and that helps a lot. I wish everyone could be onboard to support me through this, but I will accept what I have and work hard on my recovery and continue to pray a lot! Prayer has been a major factor in my decision making process and my recovery. I have been blessed by many people who have come beside me to support me and love me through the process. I have friends who can't deal who have disappeared like my parents, but hopefully in time they will come around and be okay with this. It would be much tougher if it was my husband. If that were the case, I might consider counseling when I was well enough for both of us to go to. Last note - When I asked for my church to pray for me, I asked them to pray for my husband too as this was just as hard on him in different ways.

Anyway, I am rambling now. Mostly I wanted to tell you I had read all of your postings, I think I understand, and my heart and prayers really goes out to you and your daughter and her family. I pray that all will get better and that in time she will be out of pain and that she too will walk again.

Louise :wub:

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Hi Louise

Thank you for sharing your story with me. You, like my darling daughter have had a horrible uphill battle, but you sound to me like a tough cookie. And I am really happy for you that you had the support of a loving husband.

Today's journey has been a little better for Victoria, as the bleeding has slowed a little, and it now looks as though she might not need to return to theatre for more surgery.

She has also today begun her morphine reduction, and so far, so good. They have reduced her morphine by 100mg per dose. The intention is to reduce it another 100mg next week, and a further 50mg the week after. The hope is that she will be totally off of the morphine by the time she comes home in six weeks or so.

She remains very happy, and optimistic about her future, but, I think is trying to proceed to far, too quickly. I know that as her mom, I want to do everything for her, but I just worry that she could fall and hurt herself, thus delaying her recovery.

It doesn't seem possible that only a week ago, I was still hoping that Victoria would change her mind and not go ahead with the surgery. But I have to say that she was so right and I was so wrong. I have honestly got my fun loving, wonderful daughter back, the one I lost four years ago on that road.

I will pray for you whilst praying for Victoria, for a successful outcome from all you suffering.

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Guest bearlover

Happy she will not need more surgery! :) Also to hear that you fell that you have your Daughter back!! Great news. She continues to be in my thoughts and prayers..Best of everything to you and your family. :)

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Anne, I'm also glad to hear that further surgery may be avoided! It sounds like they also have a good plan in place for Vicki's pain management, and I hope that continues to go well.

I do want to make a comment about doing "too much, too fast," if I may. When you've spent a long time in great pain, and that pain goes away, you cannot believe just how incredibly GOOD and ENERGETIC you feel! Instantly. Literally, I was sitting up and doing exercises in my hospital bed by the morning after my amputation... by that afternoon, I was up and "hopping" with the support of a frame-walker... compared to the pain I'd been in, the post-op pain was NOTHING, and I felt I was ready to conquer the world.

All that new-found energy has to go somewhere, or you just make yourself crazy trying to "ride it out." What I'm getting at is, it's a GOOD thing that Victoria wants to be active. I know how strong the temptation is to jump in there and "help," but the more she can learn to do for herself, the better she is going to feel about her decision and the quicker her return to a full and active life.

I'm NOT talking about silly risk-taking here. If she announces that she's going to use an IV pole for support and hop on one foot down to the coffee shop, by all means, STOP HER. But if she wants to sit up, dress herself, shower, transfer from bed to wheelchair on her own, that sort of thing... give her your emotional support, cheer her on, watch her carefully, but LET HER DO IT. I know that transfers can look scary to an able-bodied person, but they are VERY important for a new amputee to master. Ditto for most other "normal" life-skills. And the only way to learn them is to DO them.

I actually had an advantage on that front, in a way... I had no-one with me in the hospital or in rehab. My closest family lives over 400 miles away, and my friends have jobs. So there was no-one to fuss and worry as I went about leaning "how to amp." It was lonely at times... but it guaranteed that I would learn to live a completely independent life. In that respect, it was a great gift.

I'm glad that Vicki has you with her, and I'm sure you'll both be learning a lot about this new life of hers! Just keep in mind that it is "her" life, and athe more she can do with it, the better!

take care... cherylm

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Anne, I'm also glad to hear that further surgery may be avoided! It sounds like they also have a good plan in place for Vicki's pain management, and I hope that continues to go well.

I do want to make a comment about doing "too much, too fast," if I may. When you've spent a long time in great pain, and that pain goes away, you cannot believe just how incredibly GOOD and ENERGETIC you feel! Instantly. Literally, I was sitting up and doing exercises in my hospital bed by the morning after my amputation... by that afternoon, I was up and "hopping" with the support of a frame-walker... compared to the pain I'd been in, the post-op pain was NOTHING, and I felt I was ready to conquer the world.

All that new-found energy has to go somewhere, or you just make yourself crazy trying to "ride it out." What I'm getting at is, it's a GOOD thing that Victoria wants to be active. I know how strong the temptation is to jump in there and "help," but the more she can learn to do for herself, the better she is going to feel about her decision and the quicker her return to a full and active life.

I'm NOT talking about silly risk-taking here. If she announces that she's going to use an IV pole for support and hop on one foot down to the coffee shop, by all means, STOP HER. But if she wants to sit up, dress herself, shower, transfer from bed to wheelchair on her own, that sort of thing... give her your emotional support, cheer her on, watch her carefully, but LET HER DO IT. I know that transfers can look scary to an able-bodied person, but they are VERY important for a new amputee to master. Ditto for most other "normal" life-skills. And the only way to learn them is to DO them.

I actually had an advantage on that front, in a way... I had no-one with me in the hospital or in rehab. My closest family lives over 400 miles away, and my friends have jobs. So there was no-one to fuss and worry as I went about leaning "how to amp." It was lonely at times... but it guaranteed that I would learn to live a completely independent life. In that respect, it was a great gift.

I'm glad that Vicki has you with her, and I'm sure you'll both be learning a lot about this new life of hers! Just keep in mind that it is "her" life, and athe more she can do with it, the better!

take care... cherylm

I agree 100%. I too, live alone.Beginning to do things on your own is SO important. The hardest thing for Anne is going to be waiting to be asked to help Vicki. I have a very dear friend who has a hard time reaizing that just because I lost a leg I am not an invalid. We have had several heated discussions on this topic. She seems to think that because I lost a leg that I shouldn't pick anything up, get the wheelchair out of the cars on days that I need it or pick up my cane if I drop it. It doesn't matter if her arthritis is killing her or that she just had surgery on her hand. She has a heart of gold and I wouldn't hurt her feelings for the world. She just seems to be unable to deal with that reality. Any suggetion s? Thanks gang.

JudyH

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Guest SuzyQ
Hi Louise

Thank you for sharing your story with me. You, like my darling daughter have had a horrible uphill battle, but you sound to me like a tough cookie. And I am really happy for you that you had the support of a loving husband.

Today's journey has been a little better for Victoria, as the bleeding has slowed a little, and it now looks as though she might not need to return to theatre for more surgery.

She has also today begun her morphine reduction, and so far, so good. They have reduced her morphine by 100mg per dose. The intention is to reduce it another 100mg next week, and a further 50mg the week after. The hope is that she will be totally off of the morphine by the time she comes home in six weeks or so.

She remains very happy, and optimistic about her future, but, I think is trying to proceed to far, too quickly. I know that as her mom, I want to do everything for her, but I just worry that she could fall and hurt herself, thus delaying her recovery.

It doesn't seem possible that only a week ago, I was still hoping that Victoria would change her mind and not go ahead with the surgery. But I have to say that she was so right and I was so wrong. I have honestly got my fun loving, wonderful daughter back, the one I lost four years ago on that road.

I will pray for you whilst praying for Victoria, for a successful outcome from all you suffering.

Anne,

Your daughter made a decision to live her life to the fullest and she is doing it. I am so glad she had a better day and surgery does not seem to be part of the next steps. We have started backing down my medication and it is hard, but we are doing it slowly and hopefully we will get rid of most if not all the pain meds. Not sure about the nerve medications, but if the pain meds would go away, that would be a huge step in the right direction.

After writing to you earlier I did pray ernestly for you and your daughter and her family and it sounds like God responded pretty quick. I will continue to pray for all of you. She will be successful in this, it just takes time. Patience is not my strong suit but I am trying to work with the program to get better and she will too.

Take care!

Louise

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Hi

I consider myself told off. You are all right and I know that I must allow Victoria more space to find her own limitations, but boy it's hard.

I, too, am quite badly arthritic, and use sticks to walk, but I am able to push Victoria in her wheelchair, using it as a type of zimmer frame.

Thank you, all of you for being honest with me. I do take what you say on board, as I am on a learning curve, just as Victoria is. Please keep on telling me when I am doing it wrong.

The OT people are coming out today to see what modifications are required in Victoria's house, so for today I won't be there to shower her.

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Anne, please know that all of us are "lecturing" you with love! We're telling you the things we either told -- or WISH we'd told -- our own family and friends. I'm not a parent myself, so I can't begin to imagine how hard it can be to watch a child struggle... but I was a caregiver, as I mentioned before, and I DO know how much better both my parents' moods and functioning levels were when we encouraged them to "do it yourself" instead of jumping in and "doing for them." The very, very best support you can give Vicki now is "emotional." She needs a cheerleader, someone who's behind her 100%, giving her the encouragement to keep moving forward. Give her THAT, and you're giving her back the world!

I'm glad to hear that an OT is coming... mine his/her brain for every single BIT of information you can! Until my amputation, I really didn't understand how useful a good OT could be... the services just didn't seem all that "important" to my previous condition. But my OT sessions in rehab, and my home evaluations, were worth their weight in gold! They know the "tricks" and the "gear" that can make achieving her goals that much easier for Vicki... they're an amazing resource.

You and your family remain in my thoughts..........

take care... cherylm

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Guest bearlover

Ann, Your a mom and your daughter wil always be your "child" no matter how old or grown up she is. Right now she needs you in the one of the most difficults times of her life. She is blessed to have you. I'm sure you wil know when the time comes to let go. Your a wonderful person. Doing a wonderful job I'm sure. Take care of yourself too. I'm not blessed to be a mom But know a mother's love. :)

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Anne

I could not agree with Cherylm more. I took control and my recovery time quickened. I needed my family for moral support not physical. I am a very straight talking person and needed them to talk to me. Go yuck when the bandages came off.

Ask the stupid questions I was too scared to ask myself. For instance my daughter asked one of the OT's when my scarring would look better. I would not have asked as I knew she was an OT not a nurse/doctor. And because she was neither of these she told her in human terms not medical!

Can I also add that while you do what you do for your daughter there may be a slight chance that her hubby feels left out/unneeded. My husband refused to let my mother stay at the hospital. Not because he hates her far from it. He knew that she would control and DO for me and I would not cope with that.

Good luck

Rachel

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Hi Folks

Sorry I did not post yesterday, but it was a bad day for many reasons. Victoria is still bleeding profusely from her hip wound, and is down about it, as she can't get on with her physio. Also she was going to be allowed to come home at weekends from now on, but the doctors can't allow it.

I know that you are all right about me allowing Victoria to do more for herself, and am going to try and draw back. I do thank you for your advice, you have all been there, I haven't,

We did manage to laugh about one thing though. Victoria had insisted on being weighed before going for surgery, and again after surgery. She was most upset to find that even after amputation and the removal of all the metalwork from her, she had not lost an ounce. Both I and the nurses told her that amputation was a bit drastic as a dieting tool. At least she still has her sense of humour.

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Anne, I'm so very sorry to hear that Vicki's still having problems with the bleeding! I hope they come up with a solution for her soon... I know from experience how frustrating and demoralizing it can be to have your recovery plans hit a snag.

She's in a place where she can get all the care she needs, any time she needs it, and that's a good spot for her, right now... but I'll be hoping and praying that she's soon able to start "weekends home."

take care... cherylm

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Hi Folks

Sorry I did not post yesterday, but it was a bad day for many reasons. Victoria is still bleeding profusely from her hip wound, and is down about it, as she can't get on with her physio. Also she was going to be allowed to come home at weekends from now on, but the doctors can't allow it.

I know that you are all right about me allowing Victoria to do more for herself, and am going to try and draw back. I do thank you for your advice, you have all been there, I haven't,

We did manage to laugh about one thing though. Victoria had insisted on being weighed before going for surgery, and again after surgery. She was most upset to find that even after amputation and the removal of all the metalwork from her, she had not lost an ounce. Both I and the nurses told her that amputation was a bit drastic as a dieting tool. At least she still has her sense of humour.

Anne,

I am so sorry to hear of Vicki'setback. I know how frustrating it is when you are anxious to get home - even just for a visit. I will continue to pray for Vicki's speedy recovery. Remember to take care of yourself or you won't be able to help your daughter.

JudyH

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Hi Folks

Sorry I did not post yesterday, but it was a bad day for many reasons. Victoria is still bleeding profusely from her hip wound, and is down about it, as she can't get on with her physio. Also she was going to be allowed to come home at weekends from now on, but the doctors can't allow it.

I know that you are all right about me allowing Victoria to do more for herself, and am going to try and draw back. I do thank you for your advice, you have all been there, I haven't,

We did manage to laugh about one thing though. Victoria had insisted on being weighed before going for surgery, and again after surgery. She was most upset to find that even after amputation and the removal of all the metalwork from her, she had not lost an ounce. Both I and the nurses told her that amputation was a bit drastic as a dieting tool. At least she still has her sense of humour.

Hi Anne,

Sorry to hear about the setback with the bleeding. I am still remembering you and Victoria in my prayers and you don't need to apologise for missing a day with the progress reports, you must be worn out with it all and the heat we are having at the moment must be making things more difficult. As for he weight loss humour I have a friend who took that even further as he got weighed before and after having a kidney removed after they found something from an ultrasound scan.

Please tell Victoria we are all praying for her and her recovery and please take care yourself.

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Anne, I'll be praying that the bleeding subsides and quickly! Do the doctors have any timeline? Are they confident?

It is not unusual for delays/complications after amputation -- for many reasons. After it is all over, it will seem like it went quickly even though, at the time, it seemed to last forever.

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Guest bearlover

Sorry to hear of the little set back. I do pray that Victoria will gets better soon. She has sure had her share. :(

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Bear, your hubby does sound like an angel; I'm glad you have him in your life!

And Anne, I do hope that things will go well with Vicki... both with her husband and with the medical setback. I'd lost blood and was severely anemic prior to my amputation, and they managed to get me back up where I belonged and to keep me there long enough for my body to heal and be able to take it all over on its own... It's amazing what the doctors can do that way, and I hope their plans for Vicki will set her back on track for a full recovery quickly!

I'm going to share something about my mom and dad, just in case it might be similar to what Vicki and her husband are going through. When Mom was in her early 80s, she developed a large, benign brain tumor which required a surgical removal. A strange side-effect of the surgery was that Mom forgot how to chew and swallow food. While she was having therapy to relearn those skills, a feeding tube was inserted directly into her stomach, through the wall of her abdomen. This tube had to be cleaned regularly... the site of the incision where it was inserted needed daily cleaning and dressing... and six times a day, a liquid meal-replacement solution had to be poured down the feeding tube. Because Mom was weak and did not see well, all the rest of the family was trained to do these various activities between doctor visits.

Dad did NOT want to have anything to do with this... but he HAD to, as my sister and I lived five miles away and worked full-time. We simply could not manage to be there every time some "chore" with the feeding tube needed to be done. Although Dad "did it," his reluctance showed clearly, and it hurt Mom deeply... she thought that he found her "repulsive" and began to think of herself that way.

One day, I got Dad cornered in the car and got him talking about how his attitude about the feeding tube was hurting Mom. After a while, the truth came out:

"Will I kill her if I do something wrong? I couldn't bear to hurt her!"

He'd been so very nervous and upset during the training sessions that he wasn't sure he knew what to do... so he tried to do as little as possible! And the results were upsetting to everyone involved. Eventually, Mom got her swallowing reflexes back, the tube came out, and life returned to "normal."

It could be that Vicki's husband (especially if he feels some responsibility for the accident) is so terrified of doing anything else "wrong" that he's pulling away from doing anything at all. It might be his feelings about himself -- NOT about what's happened with Vicki -- at the base of the problem.

Worth thinking about, perhaps...

Whatever happens in the near future, I have a feeling that your family will find a way to pull together to get Vicki through this. Thank you for sharing her journey with us all!

take care... cherylm

HI Ann

I am very happy to hear that all has gone well for you guys. Tey first days are the hardest and get better as they go. Its great to hear that she is ready to move on so quickly and happy about gettin up and kicken butt so to speak. Please say hi to her and tell her she will be just fine.

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Today has been a better day, and although the bleeding hasn't stopped, Victoria only needs dressings changed once a day. She even managed some light excercise in the gym today.

If the bleeding recedes more by tomorrow, she will be allowed home for a few hours, so we are keeping our fingers crossed.

On an exceptionally good note, Victoria has no adverse effects from the reduction in her morphine, and looks forward to a further reduction next week.

One good thing that came out of yesterday's home visit was that after telling the OT's about this forum, they decided to look at it last night. They were so impressed that they are going to advise all amputees with access to a computer to look with a view to joining. They also intend to reccommend that physios also look in. Both Victoria and I said how we had had immense benefits from communicating with people in our own situation.

It is so good to see her looking so bright and pain free.

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Hi all

I am pleased to say that physically Victoria has had another good day, with much less bleeding, thus she has been allowed home for the weekend.

I can't go into too much detail here, but she has had to come and stay with me for the time being as her husband has left her. You will now realise why I couldn't respond to your much appreciated advice on how to help her husband.

Needless to say Victoria is devastated, but all I can do is be there for her.

She is a strong lady, and with the Lord's help, she will pull through

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Anne

Please tell vicky that I am so glad she is feeling better. I also send her my best wishes at the horrible time. I am so sorry that she has to go through yet more emotional termoil. Please let her know i am thinking of her.

Rachel

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