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Wife diagnosed with liver cancer. Some advice please.

Posted , 15 users are following.

Alan9999
Alan9999

My wife has recently bee diagnosed with liver cancer and has a probable life expectancy of 6 months - 5 years (they couldn't be any more specific).

Currently we are in massive shock. She is only 59 and I am 42, and to be honest I'm having trouble staying strong for her. I just feel so sorry for her - she is terrified of dying and keeps saying that she just wants to stay with me and not leave me - and when I think that I could potentially have decades without her, it doesn't bear thinking about. I honestly can't imagine living the rest of my life without her.

I wonder if other people on here have lost loved ones early in life and if they would mind telling me their stories.

It's all about her now, and I want to do all I can to ensure she has an amazing life, but just feel I need to speak to someone myself in order to stay sane. Thank you.

3 likes, 38 replies

38 Replies

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  • jackie04837
    jackie04837 Alan9999

    Posted

    Hi Alan, so sorry to hear about your wife it must have come as quite a shock for you. I'm afraid that I can't make any of this go away-I only wish I could. My husband and I are kind of in a simular situation (although I am 49 and he is 29-shock eh?) Love at first sight and married after 6 months ha ha. I'm ill myself with several things, tumor in my back, neck etc and thankfully they are benign and slow growing but along with osteoarthritis my husband wii face the same future as you at some point. I'm fairly strong about and sure your wife will probably be too once the news has sunk in..I know my situation is nowhere near the same as yours but I just felt the need to write to you.

    Take care and best wishes

     

    • Alan9999
      Alan9999 jackie04837

      Posted

      Thanks Jackie,

      There is a similar age gap there. I was 29 when we got married after just a month of knowing eachother.

      It's nice to know I'm not alone, although I wouldn't wish such an illness on anyone.

      She is having chemo in a few weeks and an experimental drug, then they will be able to tell us more - but they can only hope to control it rather than cure it.

      I hope the doctors are treating you well and thank you so much for replying. Regards to your partner as well.

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi there-well I thought we had a whirlwind romance.

      I can only wish your good lady all the luck in the world and as you say hope they control it so your wife has a good quality to her life. That way she can enjoy the time she has with you, the drugs they have are fantastic now and seem to be improving every day.You are fortunate to have each other and I think that's what is important now. You will probably have many people writing and giving you advice-I don't as I'm not in your situation but I'm hear to listen if you need to talk and vent.

      Take care and best wishes to you and your wife.

  • jackie04837
    jackie04837 Alan9999

    Posted

    Hi Alan,

    Just thought that I would check and see how you are? It's been about three weeks since I last wrote to you (sorry so long) and I wanted to ask how you and your wife are managing at this time? I wonder if your good lady has started her chemo and if so how are you both finding that? I don't mean to pry but to offer you support.

    Don't feel you have to reply I just wanted you to know I was thinking of you both.

    Best wishes,

    Jackie

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie.

      Not much to report I'm afraid. She is having her first chemo treatment on 21st September. We are staying positive and getting support from the Ellenor charity, who are amazing.

      How are you doing?

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi there smile

      Well glad to hear that you are both staying positive..is ife any easier for you? You sound so much stronger in yourself and its great that you're getting such good help from the Ellenor Charity-I'm so glad that you are both able to be a bit more positive I think that's half the battle.

      All here is good thanks, our life is not too bad at the moment as we have decided to adopt a dog from the RSPCA once they have been to do a home check!

      Take care

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie.

      Some bad news I'm afraid. The cancer has spread to her lungs and they are now giving her Radiotherapy. She is taking part in a trial which includes a new drug so hopefully this will help. She is starting the drug tomorrow and having the radiotherapy on 21st.

      Glad you are both doing well and hope you enjoy the new dog. We have a cat (Willow).

      Will post again when anything happens.

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hey Alan, sorry to hear about the spread to the lungs...how are you both dealing with this information? Such a hard thing to hear I imagine- terrible from both of your points of view. How have you been since you found this out or are you a bit numb? I don't know much about all the new trials but we all know they are coming on in leaps and bounds every day. I hope the tablet suits your wife and knocks those cancer cells for six!

      Appologies for late reply, husband has had a friend to stay for a couple of days.

      Are your friends and family close so you can both talk with them? I don't know how you do a private message but I'm happy to give you my phone number and or email and we can talk more openly. If your wife wants to chat I'm happy talk with her too if you think she would like although I imagine she talks to her friends or people from the Ellenor Charity.

      Anytime you need to chat I'm here-I will check in everyday and try to work out how to send private message ha ha.

      Bet willow is getting lots of cuddles. We are having RSPCA check tomorrow then all systems go for dog.

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie.

      Yes it was a shock. They have gone back to chemo now though, hoping that if the primary cancer is treated this will help with the lung tumours, which are very small at the moment.

      She is still not feeling any ill effects and is positive in herself, which is a good thing. She is still scheduled for next Monday for chemo.

      We have family around to help thanks - but just out of interest, are you in the South East? She hasn't actually talked to anyone who also has cancer, but this may change when she does more things at Ellenor.

      Alan.

       

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi Alan,

      Bet it was but hope all goes well on Monday, the doctors must have weighed everything up and decided that this is the best course of action to help with both liver and lung tomours.

      I'm glad she is feeling no ill effects at the moment-how relieved you must be for her.

      I wasn't trying to pry about private things ie friends and family to help but am happy you have their support-they can be helpful at times ha ha. We do live in the South East, don't find it a bad place to live overall.

      Take care talk soon

      Jackie

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi Alan, just wanted to send best wishes to you and your good lady after her first chemo last week. I hope it all went well and you are both feeling possitive. I was thinking of your wife-and how you must have felt last week but didn't want to message you then as too soon.

      Anyway I hope emotionally things are not too difficult for you-hang in there!

      Take care and best wishes

      Jackie

    • Alan9999
      Alan9999 jackie04837

      Posted

      Thanks Jackie. Yes it went well thanks. She doesn't seem to  have any bad side effects yet, although she did catch a water infection and had to go into A&E on Thursday last week. Currently she is fine, but tired.

      How are you doing?

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi there-I'm so pleased to hear that it went well on the whole and your good lady is doing well. I hope you are managing too? What happens next in regard to treatment-is it monthly?

      All is fine in my world..the RSPCA called on Tues to ask if we woud take a neglected dog-she arrived the next day smile Funny thing is she's called Josie which was my mam's name (she died 6yrs ago this month) strange eh? She's a very underweight, small, patially blind-due to infection staffy-but we think she's perfect!

      Take care of you and your wife, so glad things ok, talk soon,

      best wishes

      Jackie

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie.

      I hope you are enoying the dog? It's been a bit hectic here. My wife is now on Sorafenib but it's making her very confused and forgetful, so we are just trying to make sure she eats and takes her medication correctly.

      Which is tough when I work full time.

      Hopefully the side-effects will only be temporary but I'm walking around with a permanent knot in my stomach at the moment.

      She has suffered from confusion in the past and it's like she becomes a different person. Not nice.

      On the up side I have contacted Kings and they are hopefully going to deal with it soon. I'm trying to avoid giving up work and claiming Carer's Allowance, as this would severely dent our income.

      Will post again soon with hopefully some good news.

       

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi Alan-I'm sure it has been hectic there with all the changes happening. I have read up on Sorafenib and with all medications you obviously get good and not so good effects. I hope she she can maintain her diet and medication..I'm sure with your help she will.

      I know it's tough when you work full time, you said before that you had family and friends that were close by; perhaps they could help out a little if they knew you needed a helping hand during work times. That knot in your stomach may loosen a little?

      You say that she has suffered from confusion before..you just have to remember that there's nothing she can do and it sounds like you need a bit of support too.

      Glad to hear that Kings are going to sort things out as soon as they can, hopefully won't be too long.

      I understand what you are saying about the work side of things re income etc, perhaps you could have a chat with your GP or the McMillan nurses about other things that may be available to you alongside the Carers Allowance.

      Best wishes to you-remember to take care of you as well as your wife, take care and speak soon,

      Jackie

      ps our dog is great!

    • Alan9999
      Alan9999 jackie04837

      Posted

      Managed to get a month off work on full pay, so am able to be at home looking after my wife.
    • jackie04837
      jackie04837 Alan9999

      Posted

      Hey Alan,

      Was so pleased to read about you being to get a month pff work..it seems like your employers are being understanding towards both of you. This must really have put you at ease for the short term at least...and means you are able to be there. I just can't get over how your employer has come through for you!

      When you last got in touch, you said that your good lady had suffered from confusion in the past-have you spoke to friends and family with the idea of a helping hand so you can have a break occasionally?

      I sure you must both be feeling better knowing you will be there to spend the time together and not have to worry about money? Hope it's not too long until you hear from King's and that Mrs Alan is getting used to her medication ok?

      Really good to hear from you-let me know how you're doing in yourself with all these changes..but you sound to have got things sorted fairly well smile

      take care of you, take care and I know I've asked a lot (sorry my hubby says that's what I do!)

      talk soon, Jackie

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi Alan just checking in to see how things are with you and your good lady as it's been over a week since I last wrote to you. I hope you are doing well and you are managing everything.

      Let me know how you are when you get a minute and of course how your wife is

      Jackie

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie.

      We are doing ok thanks, She's been in hospital a couple of time but has been quite well for the past week. Her scan is on Monday, so we will find out then how successful the chemo has been.

      My employer is not that sympathetic to be honest. It's a local authority but by law I am able to be signed off on full pay for a while (until this government change it, which I'm sure they will).

      So it's a waiting game at the moment.

      How are you doing? Are you enjoying the dog?

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi Alan, so glad to hear from you and that you're both doing ok..guess it must have been fairly stressful for you with Mrs Alan having to go into hospital a couple of times? It's great that the scan is on Monday-but I guess added stress for you? I will be thinking of you both and wish you get the results you hope for and expect.

      Sadly employers don't always turn out to be as sympathetic as we would be ourselves..they don't often have much humanity when it comes down to it do they? At least you are on full pay-not much comfort I know but at least it helps!

      Life with us is ok-ish, some of my meds are being changed so watch this space and my hubby isn't well at mo (told him this is not right as he's looking after me not the other way round lol)

      The dog is fab, she's so loving towards everyone and has put weight on now as was only half what she should be due to neglect when we got her...she is just beautiful!

      Take care of you and I will speak to you soon-let me know how the scan goes ok?

      Jackie

       

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie.

      Just wondered how you were getting on with your meds change?

      How is your husband?

      Alan.

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi Alan,

      Nice to hear from you..I haven't wanted to intrude but have thought about you and your good lady. How are you both and were the scan results as you had hoped for? Is your employer showing any more empathy now or are they still being bags? Sorry there I go again with all the questions-I can't help that! Have you had any word from King's yet?

      As for me I'm doing ok with meds change but it will take another few weeks but feel fine at moment. My husband has problems with his joints and is waiting to see a rheumatologist...he's tired and sore but doesn't like to admit it.

      Be good to know how you both are and talk soon

      best wishes

      Jackie

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie.

      My wife is due for more chemo on the 30th. The liver tumour has shrunk but not gone completely. The lung tumours have almost gone.

      Unfortunately we have another problem now though. She has been suffering bouts of confusion for a while now and they are getting worse. Doc has sent her for a dementia test. She has had so many health problems over the past 8 years that I'm not surprised if it has affected her mind, but it's hard to deal with.

      Sorry, sounds like I'm just listing problems.

      My sister has similar problems with her joints and she's only in her mid- forties. Lost count of the number of tests she's had. Hope things improve for him. They have good treatment for that type of thing these days.

      Bye for now.

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi Alan, just put computer on and read your message-what great news about the tumours eh? The fact that they are responding to the treatment must be a real boost for you both I imagine? I know it's still a long road ahead for you both but it appears steps are in the right direction. I couldn't be happier for you you. I hope the next round of chemo goes well.

      You said before about the confussion and how hard it was to deal with, but I'm pleased that she is having a dementia test. Until you get the result you don't know for sure and it may/may not be. You will be taught some ways to cope and your wife wil too if it turns out to be dementia.

      Sorry to hear about your sister and her problems..you do have a lot on your mind don't you? Hope she manages ok and my husband will be fine thanks-this cold doesn't help any of us with joint problems though.

      Please take care of you, and I will speak to you soon.I'm hear if/when you want to chat.

      Jackie

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie.

      Will post again after next treatment, but I have read about 'Chemo-Brain', which causes the same systems. I don't know if this would still be happening 2 months after her first chemo though.

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi Alan, hope all goes well for the next treatment. It's true that 'chemo- brain can cause the same or similar symptoms I think and as far as I'm aware the effects can carry on for quite a long time after first (and I think) final treatment. You will probably know more when you've been for the next round of tests-at least you can talk to the Dr about both things.

      Take care of you and your good lady

      Jackie

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie. Chemo has knocked her for six this time. Very sick, tired, and confused (encephalopathy). They are hoping for an improvement in 24-48 hours. Currently they are trying to flush her liver through.
    • jackie04837
      jackie04837 Alan9999

      Posted

      Alan, I'm really sorry to hear about what the chemo has done to Mrs Alan this time-just what she didn't need eh? It sounds as if she is really going through the mill with all of the treatment, i hope she is ok? (stupid question I know sorry)  I'm also hoping you are too as I know it can be so hard to watch someone you love in feeling that way. Sorry about the encephalopathy too-what a stressful thime you are going through.Fingers crossed that flushing her liver through has the desired effect.

      I've wanted to get in touch to see how you both are but also know you need time to yourself to deal with all that's going on in your life. I've wondered if your employer has still been been paying you properly?

      I will be thinking of you the next few days and let me know if flushing her liver through worked.

      take care of you both

      Jackie

    • jackie04837
      jackie04837

      Posted

      Hi Alan,

      wanted to see if you were ok and if it worked when they flushed your wife's liver? Know it must be a real hard time for you-just wanted to say I'm thinking of you both and obviously realise it must be extreemly difficult for you.

      Talk to you when you feel up to it, take care of you both

      Jackie

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie.

      My wife came home on the 24th. She was very weak but the confusion had cleared up. She's been ok since but still needs to get stronger. The oncologist is worried about giving her more chemo because of the effect it had, which is a worry. She is having a scan on 10th Feb so it's a waiting game at the moment.

      How are you doing?

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi Alan, good to hear from you. I'm glad your wife got home without the confusion as that's been such a worry for you both. I imagine that she is weak at the moment -she has been through a great deal in the past months. It's back to being a waiting game I expect and trying to build her up as much as possible in anticipation of the next scan.

      How are you managing at home (emotionally and pyhsically?) I'm sure you remain her rock.

      Things with me are fine thanks-my hubby seems a bit better too which is always good!

      Take care of you and Mrs Alan, speak soon

      Jackie

    • jackie04837
      jackie04837

      Posted

      Hi Alan, how are things with you and your good lady-I hope the confusion remains at bay and she is gaining strength? Are you managing everything ok? I'm more then happy to give my private email address through private message if you would like smile

      Things here are fine, i'm off to visit my son and family for few days and also my best friend in Feb. Hubby staying to look after dog and read.

      Anyway take care and talk soon

       

    • Alan9999
      Alan9999 jackie04837

      Posted

      Hi Jackie.

      She is back at Kings on Monday to see the oncologist, but once again has a persistent water infection, so I will be taking her to the local A&E today if I can get her out of bed. She is very confused and not at all cooperative.

       

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • jackie04837
      jackie04837 Alan9999

      Posted

      Hi Alan,thanks for reply. What a worry for you and all of the family to be going through-I have no idea what the oncologist will say today but hope it's news you want to hear.
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