jules

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

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

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

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

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!!!

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