jules

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Viewing 15 posts - 16 through 30 (of 166 total)
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  • in reply to: NEW TO DZ #17381
    jules
    Spectator

    Rick, Stacie & co,

    thankyou for all your hard work on the site, maybe its just me but I found the previous colour scheme clearer to read – I think the text has got a bit smaller too (I have to put my glasses on now). Please let me know if there is anything I can do to help as I do tend to log on every day at the moment.

    Thanksx

    in reply to: intrahepatic vs extrahepatic #17419
    jules
    Spectator

    Lana,

    My dad had intraheptic which was apparently wrapped around the portal vein, he had one aborted resection, when we sought a second opinion we were recommended to consult with Prof Lodge who is well respected in the field of liver surgery who performed a successful resection. The surgery was complex however Peter Lodge is well known for attempting surgery and offering hope with such cases. I would recommend getting a second opinion and be prepared to travel to find the right person.

    I don’t know if anyone from the UK was watching ‘Holby City’ this evening on TV – it showed a similar case of cancer that was resected using a patch on the portal vein. Programmes like this have consultants to advise them regarding medical accuracy, the procedure was groundbreaking and complex however it was achievable. When we spoke to Yuman Fong in SK he admitted that resections are possible with artery involvement – just complex and risky. Half the time I think it is just about finding someone who is prepared to make the effort and isn’t dismissive just because it is cancer and ‘it will probably come back anyway’. Keep going until you find a Dr who is prepared to go the extra mile for you.

    Good luck, Jules

    in reply to: Extreme Depression #17385
    jules
    Spectator

    Dear fairydrop,
    Your post strikes such a chord with me – my dad was diagnosed July 05, at that point he was in liver faliure, bright yellow and very sick, I was with him on the day of his diagnosis, I too was told that he would at best have 7-9 wks without treatment. I lost my dad on this day last month. Over the last 2 and a half years my Dad endured 2 major operations, chemo and commuting every month abroad for immunotherapy treatments. This disease has dominated our lives – the emotional highs and lows included the anguish and pain at bad news, the torment of waiting for results, the hope and joys were always shortlived – this disease is relentless, it just wouldn’t let up – if we tried to go out for a walk in the sunshine my Dad had to suffer the anxiety and humilation of loose and unpredictable bowel movements. How I hated to see my proud dignified father reduced to tears of frustration and so fearful. My Dad did try really hard to live as normal a life as possible, to share good days with us, but there was always this black cloud hanging over us.

    Charlene, I understand your pain, you are trying so hard to keep positive like I did around him, it is just so exhausting physically and emotionally, you also have the pain and memories of having witnessed your dear mother go through a similar journey. All I would say to you now is that when you look back you will be comforted by the fact that you were there for your husband on his darkest days, that you comforted him and did everything that you could possibly have done. That is all that we can do. Don’t leave anything unsaid and hold him close to you, comfort him but also find comfort for you – do you have support? – scream, cry if you need to (I know it is hard to do it around them, I used to do alot of crying on my own).

    Thinking of you, love Julesx

    in reply to: Good News Daughter’s Thyroid non-cancerous #17397
    jules
    Spectator

    Jeff,

    I am SO relieved to hear that. There is nothing like the father/daughter relationship.. it is so special. I remember when my dad was getting over his surgery in hospital the surgeon told me to keep visiting – that I was the best medicine for him..(he would only get up and try to walk/eat/do anything if I was there)

    Julesx

    in reply to: angry stage #17293
    jules
    Spectator

    dear friends,

    thankyou for your replies and sharing your experiences with me, I do not feel so alone when I hear from you, and as Joyce says, grief is a lonely experience. I am now starting to realise that, initially I had hoped that people would be there for me or that I could grieve together with others who cared for my Dad, sadly that is not the case. I just cannot begin to understand some people and unfortuantly events like this can open cracks in relationships and highlight just how cruel some people can be.

    Teresa – why did your sister feel the need to ask something that should be so obvious? – her actions were unbelievable – so cruel. I am so sorry to hear that you are now caring for your husband and having to go through this agony again in such a short space of time. I hope that you have others there for you, Alan’s friends sound like a special group of people, and it so true what you say – you find support in the most unlikely of places. I feel that THE ONLY good thing to come out of all of this are the friendships that I have made through this website. I have met some truly special people. I know that my Dad felt the same way – he always admired the strength and determination of both the patients and carers on this site.

    I keep you all in my thoughts.
    love Julesx

    in reply to: angry stage #17289
    jules
    Spectator

    I have been told that this grief is something that I will ‘learn to live with’ rather then ‘get over’ and that the intensity of emotion will lessen in time. I have also found that my moods are all over the place. I seem to be functioning okay one minute and the next I feel overwhelmed by extreme sadness that seems to paralyse me.

    Of course I know that he didn’t want to die and I do not feel angry at him, I just feel extremely sad for him. He lived life to the full and enjoyed every minute and he has been taken too young. I feel anger at some of the Drs (eg his GP who for 2 years previous to my Dad’s diagnosis told him there was nothing wrong despite the fact that my Dad had worrying symptoms). The anger can become irrational aswell – I know of unpleasant men much older then him living full lives, I think why him and not them? – I know it does not make sense but I can’t help these feelings.

    I am also angry at people who say “just let me know if there is anything I can do?…” what does that mean?! – why not just turn up at my house one evening and offer me company and a chance to talk? – that is what I need – your time – I want to talk and talk, I want to go over and over the events of the last 3 years and try to make sense of it in my head if I can, I want someone to listen who cares. Unfortuantly I don’t have that, as I am sure so many people don’t. That is why venting here is such a release. Being amongst others at this time trying to act carefree just feels like such a burden, has anyone else experienced the ‘trying to outdo you on the grief front’? – you know those people – “I lost my mum, dad and niece all within the space of 6 months”. ALL GRIEF IS VALID – young, old, husband, Dad, grandparent.. it is what that person meant to you, the relationship between the 2 of you that mattered and nobody can make assumptions about that.

    I am sorry Patricia that the pain is feeling worse now. I hope that the counselling may help you now. Betty – thankyou for your posting, I have read a book by kubler ross ‘on grief and grieving’ – it is written with such empathy and understanding, a real comfort and a beautiful book, I would recommend it to anyone in our position.

    Jules

    PS – Jeff I was very concerned to read your posting and I am hoping that your daughter is okay. Take care, love Jules

    jules
    Spectator

    Dear Lisa,

    I am so sorry to hear about your dear father. I understand so well how this feels and I also relate to some of the anger issues that you have been feeling. Trust me – your Dad does know just how much you love him. After all, you are there for him now aren’t you?

    I think that for now you just have to take the lead from your Dad as to how he wants you all to behave around him. My Dad couldn’t cope with my tears, he told me that they didn’t help him, just made things worse. Sometimes it was just impossible to stop the tears from flowing however I tried very hard not to cry anywhere near him. I understand your restlessness, it sounds as though you are not sleeping very well, of course that is understandable. I regulary wake at 5am (it is 5:30am here now) and I don’t think that I have slept properly since my Dad was diagnosed. I am sure that you are cherishing every moment that you have with your Dad and it sounds as though you are fighting hard to be strong for him. It is the most immensly difficult and testing time, I know. If you haven’t been there you just don’t understand.

    You will never lose your Dad’s immense love for you. Even though my Dad is no longer here in person I feel his love surrounding me and I always know at any given situation what he would say and do. He is always there with me. I am half of him and when I look in the mirror his big brown eyes are looking back at me.

    Lisa, I feel for you, this is just so so hard. Give yourself time, do not feel any pressure to behave in any other way then you feel is natural for you. Cry, get angry, depressed, all those emotions are perfectly valid. It sounds as though you have a good relationship with your mother, I hope that you can be there for each other now, to have support must make all the difference.

    We are here for you,
    love Jules

    in reply to: Patty is in the Hospital #16960
    jules
    Spectator

    Dear Ted and Patty,

    I have followed your postings – the loving bond between you is clearly so strong, this relationship will never die, you will live on in each others hearts forever. I am so sorry to hear about Patty, I hope that you are able to share many tender moments together, I feel for you at this immensly testing time.

    With love, Jules

    jules
    Spectator

    Lisa Ann

    It will mean so much to your Dad that you are there for him right now, supporting him in whatever way that you can. I know it is just so hard when they sleep llike this. I remember (and regret) how I kept trying to push food into my Dad when really he didn’t want it and he just wanted to sleep. I now wish I had just accepted the situation and just helped to keep him as comfortable as I could.

    I understand your restlessness regarding the scan result. I remember the anxiety and sheer torture of the days leading up to results day. Looking back, I see now that that was just an extra burden that we had to carry that was so unfair. My Dad’s scan results ALWAYS showed stable disease. I don’t want to sound too gloomy, but I want to prepare you – my Dad lost alot of weight very quickly, stopped eating and drinking and just faded peacefully away.

    I understand that you are trying to stay positive for him and I was always that way with my Dad, I think that if I had taken away the hope then he would have been left with despair and he couldn’t have coped with that. My Dad tried to talk to me and get me to acknowledge that he was leaving me, I think he got quite frustrated and felt alone at times that nobody would accept it, although he seemed to fluctuate – other times he would want to ask me to do this and that for him (eg get him some shopping in, arrange further treatment sessions) that gave me the impression that he still had hope.

    Lisa, this disease is just the pits. It is just so cruel and so so hard on us all. I cried reading your post because I understand so well where you are coming from. I am hoping that the Drs are able to offer your Dad something, we all hope for miracles in this situation, but at the same time just cherish every moment with your dear Dad, I’m sure you are doing that anyway, don’t leave anything unsaid. I will never forget the moment when I leant over my Dad’s bed and I stroked his cheek and I told him that I had always thought the world of him, he replied that he had always thought the world of me too and kissed me on the cheek. That moment comforts me so much now.

    I will be thinking of you, love Jules

    in reply to: CT Scan 3 Month Follow-up #17018
    jules
    Spectator

    Katia,

    I have just only just noticed your question so sorry for the delayed response. My Dad had Dendritic Cell vaccine administered in Germany. We travelled once a month to Germany for the treatment. You will find a discussion thread with all the info in the ‘research’ section of this site. This is an experiemental treatment (but then the same could be said for chemo) – the advantage of DC therapy is that it has no side effects other then fever on the evening of administration. This form of treatment is offered in some clinical trials (eg for pancreatic cancer at John Hopkins). The advantage we found to going to Germany is that Drs there are able to treat patients as individuals and prescribe/treat as they see best for that individual rather than being constrained by red tape and FDA/nice guidelines and lack of statistical data for this ‘rare’ cancer.

    My Dad was diagnosed with a recurrance in April 06 and maintained a good quality of life until about 6 weeks before we lost him (last month).

    take care, Jules

    in reply to: On track for a transplant #17258
    jules
    Spectator

    Kim,

    I am so pleased for you!! It is great to hear some good news!!! I understand exactly how you feel when you describe how this disease can control and produce such strong emotional highs and lows. When Peter Lodge rang me to tell me that he could operate on my dad and remove the tumor I literally jumped for joy.

    FANTASTIC!!!

    in reply to: Shrinkage!!! #15938
    jules
    Spectator

    Caroline,

    I am so pleased that folfox is working for you. I have read your blog – it is truly inspirational, and it comes through your postings that you are a very courageous woman who is determined to live her life to the full in spite of the obstacles that this disease sometimes throws at you. Obviously you draw great strength from your family and friends who surround you with love and support, I admire you all greatly.

    lots of love, Jules

    in reply to: angry stage #17280
    jules
    Spectator

    thankyou Joyce and cdr. I have read your postings Joyce and I really feel for you, your mum was clearly a huge part of your life, your best friend, not just your mother. When we lose somebody so central to our lives the void they leave is just huge. My Dad was my best friend too. We spent alot of time together, every weekend, often saw each other during the week and emailed and spoke on the phone all the time. I am bringing up my daughter alone and he was like a father to her. He was just so special to me and I have never felt so much loved by anyone else in my life.

    I am finding life so hard right now. Life seems unrecognisable to what it was. Today a well meaning friend took me to lunch and I found it a huge strain, if I mentioned my Dad I saw his eyes roll. Driving home I was sobbing “I want my Dad…I want you back, please Dad come back – just give one more day with him, just one more hour…anything” I have never felt so rock bottom in my life. I only wish I had someone who cared to talk to, to support me through this. (I’m sure that is a luxury that few of us have). I have my daughter and I have to keep going for her sake, I honestly don’t know what I would do without her and she seems to be coping well and seems so much more accepting of the situation. (she is 13). Venting on this website is my only release and I honestly don’t know what I would do without it right now. Thanks for listening and for your messages of support.

    Julesx

    in reply to: Jules #17298
    jules
    Spectator

    Dear Charlene,

    I’m glad the info was of help, if you have any further questions please ask away, there are alot of knowledgable people on this board and sharing experiences is very helpful.

    I can understand how you feel about the chemo especially having witnessed your mum’s battle. My Dad did not cope with chemo very well and that is why I searched out an alternative. My dad had immunotherapy (if you want to check this out look under ‘research’ and DC therapy and you will see our posts – my Dad is Geoff).

    Jules

    in reply to: John 1st chemo #17297
    jules
    Spectator

    Charlene,

    I am sorry to hear that John had a bad reaction to the chemo. I wonder if your oncologist would consider using carboplatin instead of cisplatin, as it tends to be better tolerated. The nausea is something that my Dad suffered from alot, we tried different anti emetics until we found one that worked for him. Initially we tried metraclopamide however my Dad found that cyclazine worked better for him.

    Glad to hear that you are able to be there for John, I also took time off with depression during my Dad’s illness, I don’t know how anybody is supposed to cope with going to work in addition to caring for somebody fighting this horrid disease.

    I am thinking of you both and hoping that John’s fatigue and nausea will ease so that you can enjoy some time together without having to deal with these relentless symptoms.

    take care, Jules

Viewing 15 posts - 16 through 30 (of 166 total)