1

(3 replies, posted in General Discussion)

Hi Kris,

I am so happy that you are still fighting and being positive I will make a point of checking on you.

We have all moved away from England and are living in sunny Dubai. We had the chance to do it last year but didn't go due to the circumstances. My children are enjoying it and have settled in to their new school very well. My sisters children are coming out for Christmas so I can't wait to see them. We will have a completely different Christmas this year so to try and ease the pain of not having my sister with us. Perhaps some camel rides for the kids can be organised.

Please keep me posted on how you are doing you were inspiration to me so I keep my fingers very firmly crossed for you.

With Love

Janexx

Hi Kristi,

I lost my sister this year she was only 43, she left two children 6 and 12. The pain is unbearable I think you feel much worse when they are no longer there. At least when they are with you although very ill you can still talk and  love them. When they go the pain of them not there is just so like  I never knew. Sometimes I cry to a song in the car or anything which reminds me of this unfair situation. I was cross at first when she died. I wanted something from her a letter or anything I could hang on to.

make the most of every moment I have so much guilt I wish I'd done more. Try and share a joke and laugh no matter how hard i hope this helps good luck to you all

Jane

3

(3 replies, posted in General Discussion)

Hi all

It's been a while since I posted any message on this site. I think I lost so much faith when my sister died. I miss her so much and cannot begin to understand why she had to die. Then I thought about the people on his site and hoped they were doing well. Kris how are you I hope you are well. It would be good to hear from you and I will attempt to help anybody I can.

sorry for staying away so long

Jane

4

(30 replies, posted in General Discussion)

Hi Gavin,

I am so sorry to hear about your Dad's illness. We too live in the UK and I have a connection with Scotland as all my family are Scottish. My sister was diagnosed with cc back in 2007. Unfortunately we lost her on the 5th April this year.

I did used to think that she accepted everything that was put to her from her oncologist and we all wanted her to get a second opinion. She always felt that she was being a nuisance. So please don't ever feel like that, your Dad has a right to treatment and you can request a 2nd opinion.

My sister and her husband's experience with MacMillian nurses was not great so I am please you find your nurse helpful.

It sounds to me like you are doing are great job and I'm sure they both appreciate you. We too had fall outs and at times it could be very difficult in all ways.

take care and remember to look after yourself too!

Jane

Teresa,

I feel that nobody truely understand what I feel and I cry as I write this to you. I feel so many emotions mainly anger because it has taken my sister away and I have nobody to turn to for advice or help anymore. She was sensible and I was not bit silly really but I was so proud of her she was clever and achieved so much in her life.

She knew I was there in her last moments and even when she was so weak she tried to wipe my tears even then she wanted to make me feel better. I miss her so much and don't know if I will ever stop feeling like this thank you for speaking with me it does help and I hope you can feel better as I hope I will one day but I know my life will never be the samex

Kris,

I read your thoughts and it breaks my heart, I wish I could take this disease from you and throw it where it where it will never come back. My 6 year old girl has associated death with being old and can't understand why her Auntie died when she was just a Mummy, she asks why God would do that and I say I don't know.

Caroline never visited this website I don't know why, she knew I did and always said if it helps you then that's ok with me. I think she knew what her fate was.  I wish she had pushed her oncologist more but she excepted everything he said. He was nice but she was young like you and you deserve to live. Please Kris keep fighting you are a wonderful person because one thing this horrible disease has taught me is that nobody bad ever suffers from this.

I won't pray because i did that and it didn't work so I hope and dream that you get your chance to have a great life please please get well. that is my wish x

Thank you to you all for your kind replies, I do take comfort from your messages and know that you all understand the devastation that this disease causes.

I will continue to visit this site in the hope that I can be of some help to others, I know that I have always valued the responses that I used to get.

thank you all again

with love

Jane

It is a while since I posted anything on the site, I think we as a family got so desperate to try and see some improvement in my sister's health. Sadly it was not meant to be and Caroline lost her fight with this dreadful illness two weeks ago. She battled it and her own doctor was amazed at her strength. She lasted 18 months following diagnosis and it was thought she would only last 6.

Although I would like to say she is now at peace I don't feel that way, she was not ready to go, she wanted so much to see her children grow up and I can't accept that this has happened.

We all miss her so much just not being able to pick up the phone and speak with her is so hard. To see what this disease did to such a healthy young woman was heartbreaking and she did not deserve it. Caroline had a great job, healthy lifestyle didn't smoke very rarely drank and just doted on her kids.     

I wish everybody on this site luck, because sometimes luck is what you need most.  If nothing else I realise how precious life is and no one knows what cards we will be dealt, so make the most of life and love those who are precious to you.

Jane

THANK YOU X

Jeff, you are a complete inspiration to me, you are so thoughful for everyone else, so glad that you are having some positive results, keep on going your great!!

Nothing from anyboy yet I have spent the weekend with my sister she is so thin and frail I hate this disease. She needs to gain weight will the shunt help? The oncologist thinks this is better than draining but the procedure obviously is surgical and hence her reluctance at this time. The shunt would involve a drain with a mechanical pump, which when activated by her manually would pump the fluid back into her body. Somebody must have some knowlege on this please hekp if you can

thanks Jane

hi all recently posted a question reference shunt implant to help with ascites,Patty thanks for your response so very appreciated. Has anyone else had this procedures and did it help? Any respnse is really welcomed, I know it is so hard for everyone and so I really apreciate any opinion.

thanks again wishing good luck to everybody on this site

My sister is suffering really badly with ascites, she is having the fluid drained and this gives her some relief, yet it builds up again so quickly afterwards. They have suggested a shunt, but she is not keen on this idea. She has lost more weight and is so tried from the drugs and everything.
Has anybody got any positive suggestions on how to deal with this.
thanks Jane

14

(15 replies, posted in Pain Management)

Thanks to eveyone for your suggestions. Her pain however is still not improving she has been back to her consultant who continues to try her on different drugs. The problem all seems to be associated with eating, she is hungry and wants to eat but the pain she suffers a few hours later makes her so sore. Her tummy seems to bloat up so much and you can physically see this. She is not gaining any weight either which means she has very little energy also. Has anybody suffered from this any suggestions would be appreciated,

thanks again

15

(2 replies, posted in Chemotherapy)

Thanks Jeff

that is really helpful she is having a CT but say this is better to look at what is going on in the body and MRI better for assessing the liver, she confident they know what they are doing. But the pain she is describing sounds very similar to yours her stomach, side and back.  Hopefully they will find something that they can do something about.

thank you again

Jane UK

16

(2 replies, posted in Chemotherapy)

My sister finished her six month stint on Gem Cis last month. She had her scan and all looked good no evidence of spreading. Since the end of chemo she, me and friends have done a charity run for cancer she did great and ran all the way. She has now taken a turn for the worse her pain has inceased and they have given her mophine. I can't understand after having such great results with the scan why things appear to have got worse so quickly. Does anyone have any ideas what her pain might be?

Jane UK

Hi Sue,

I live in North Yorkshire so not too far away from you. My sister was diagnosed with cc last November she is 42 and lives in Cheshire and is receiving treatment at Christies in Manchester. She is now 2/3rds of the way through her chemo regime and results so far have been promising. Unlike your husband she was suffering pain which lead to the diagnosis and the cancer had spread outside the liver.  We are all "her family" hoping the chemo stops the spread and contains the cancer. 

What hospital is your husband under? 

Good luck to you both it really is a very hard struggle, keep positive and don't loose your sense of humor somebody told me that so that's what I try to do.

Jane UK

Kris,

I follow you with complete admiration. You are a truely fantastic person I love the way you care and I love your sense of humour you so deserve this geat news enjoy it and continue to be the naughty sis just like me

Jane xxx

Kris,

What fantastic news I am so happy for you enjoy every moment you deserve it. You are a truely warm and loving person keep going you are beating this don't stop xx

20

(10 replies, posted in Good News / What's Working)

Hi Kris, Caroline me and some close friends are doing the race for life in Tatton Park Cheshire on the 22 June. Caroline has bought a running machine and has started training she is still on chemo but determined as ever. I can't believe my sponsors so far, down to my husband really he works abroad and nearly all are from his contacts. I can't believe how many caring people there are it certainly restores faith.

Link is: www.raceforlifesponsorme.org/janewebster1

I hope all money raised helps us all in some way xx

21

(10 replies, posted in Good News / What's Working)

Thanks Jeff, I will. Caroline is full of high spirits at the moment we are doing the race for life in June this year, her idea. It is for cancer research uk. Caroline works for cancer research so she knows how important it is to research in to the more uncommon cancers like this, as they don't get the research they should.

We have to beat this cancer and all cancers, I know we will and I can't give up

Jane x

22

(10 replies, posted in Good News / What's Working)

Thanks Jillie thanks Kris, I appreciate your posts. I hate that your are both suffering. Yet in all of this you take the time to consider feelings and pain of others you are truely fantastic people.

I have never been one to pray but the other night I taught my 5 year old daughter,  Lara a prayer that I knew as a child. She repeated it after me and especially blessed her Auntie Caroline, she will bless you both too I promise!

23

(10 replies, posted in Good News / What's Working)

Thank you for your messages it is funny in a way but I get some sort of relief from response to my posts. Sometimes I feel my sister doesn't tell me the whole truth and I feel that is her right but in a way that makes me worry all the more. From the moment she was diagnosed I would do anything to change it. I have three young children who quite obviously don't know their Auntie is ill and they all love her so much and as childen are think she will be here for ever.

I don't feel I am the carer I should be, we live quite far away from each other and this prevents me seeing her and helping her as frequently as I would like. My children go to school, I go to work every day yet I know she is suffering and I should be there. What is the answer? I dont know, I continue to do the things with my children like I always have yet things are not the same as they once where. We have all changed , we of course have had fantastic news and I so want this to be the start of things to come.

My sister: although we fought as children has been the one that will support, advise me (she is so more educated than me) I was always the naughty one or at least the one that always got caught!  She looked out for me at school and made sure I was ok and I was so proud she was my big sis.

I take her advice on work issues and all other matters and although I don't always agree deep down I know she is wise and I'm a bit of a fool, (I've never admitted that!)

I just want her to be ok and I now want to look after her!

24

(10 replies, posted in Good News / What's Working)

We have just had the first result back of the scan following 3 months of chemo on Gem Cis. My sisters lymph glands look to have reduced in size. This has given us tremendous hope as the oncologist did not anticipte this. We all just want the chemo to go on doing it's job and hope that all her hard work and the pain she is going through will keep her well in the end.

Keep your fingers crossed for us!

Robyn, I am so sorry for you and Rick it's so unfair and cruel why does this happen to you and all these kind good people. I can only imagine the pain you have been through I don't know whether this is the right site but I can't pray and believe in God, I'm past that, nobody good and kind would put good people through this.

I've seached for positive news for weeks and it hasn't come. I'm fnding it hard, very hard, your pain must have been so unbelievable and I don't know how you cope with that.

I don't even know how to end this post so I'll just go take care of yourself please you deserve that x