Stage 4 large b cell lymphoma metastasis to liver?

My name is Dave I'm 46 and I had stage 4 large b cell lymphoma and after 6 rounds of chemo which didn't work I had my spleen removed,  I was always tired after the operation but was told my fatigue would go away which it hasn't. All the blood results were looking good and I had been clear for almost a year.  Then I started to get a sore right shoulder and a pain under the ribs and my stomach sticks out at the top so I went to the doctor's where I discovered I had lost 2 kgs in 6 weeks I currently weigh 56 kg.  She sent me for a scan on my back that came back negative but the pain never went away and now Im just a little bit yellow so I went back.  The look on my doctors face said more than she did. She wouldnt look me in the eye. Now I'm just waiting to see the Oncologist to confirm what I suspect and that is my cancer is back and its my liver.  I dont know what to do. I'm either shouting at my son or in my room crying why me.  The last 3 years have been so hard on me going through the chemo treatment by myself (I wouldnt let my son come) and now the thought of having to do it all again is daunting. I'm scared at the moment so alone and in a world of pain. Scared I wont beat this it feels worse than before and I dont have any reserves left I can feel every bone in my body.  I just need words of support from people who have been there and beaten it cause at the moment I feel its fatal and no one will tell me otherwise

Parents
  • Hello Dave, welcome to the forum.  I am so sorry for what you are going through at the moment, we all know exactly how you feel.  Some have been through a lot more than others, which is why I was pleased to see that you have found Max56's thread.  Max is a marvel, I call her Wonderwoman.  I am sure there will be others who will come forward soon to offer you comfort and hope, please don't give up!  

    I am currently having a second round of chemo after a second op for recurrent ovarian cancer - first op and chemo was 2012.  I also had breast cancer about 19 years ago, had op plus chemo and radiotherapy, so I can appreciate how you feel about starting it all again, it's a daunting thought. 

    I wish you all the luck in the world for your meeting with your oncologist, Dave, and hope that your pain, mental and physical, will soon be relieved. 

    God bless.

    Hazel x

     

     

  • Hi Hazel

    Thank you.

    I am going through a hard time.  Putting my feelings on paper and then reading other peoples stories gave me hope and a kick in the ***. no matter how bad you think you have it somebody has had it worse. So it kind of put it into perspective for me. 

    I had spent the day fighting Centrelink (sorry I'm an Aussie) for some help only to be told to go somewhere else. I thought I was losing it.  But I found this forum and well it gave me hope, Faith? to go on to fight the disease and fight Centrelink.

    Thankfully somebody at Centrelink had a heart and a brain and pressed the button which processes the 6 weeks of backpay that I was waiting for.  What a relief that was.

    So I have been on a roller coaster the last couple of weeks. The ride has been frightening but I realise that I am not alone there are people that still care which has helped. alot

    Thanks Hazel and thanks to everybody who has written about their cancer your story has helped.

    mental physical pain have you been watching my youtube channel :)

     

    Thanks Today I have cried tears of joy the first time in so many years

     

    Thank You

    Dave 

     

  • G'day, Dave!  (Sorry, couldn't resist!)

    So glad you got your back pay, must be a great relief and one worry off your shoulders.  

    I am so pleased that my good forum buddy Diane has replied here, I hope her story will bring you some comfort and above all, hope.

    Keep us posted, good luck and take care!

    Hazel x

     

     

  • G'day Ladies

    Thank you.  Knowing that I'm not alone and that there is hope is one of the things i have discovered since coming to these forums.  I wont give up my faith wont allow it. Its just hard to do it by myself and at the same time try and hide it from my son.  But I'm getting there.

    Last week it was all pain and sorrow and I sought help from the Government and was told go away so I reached out to everybody and I was truly humbled by how people have responded.  (My Prime Minister's office contacted Centrelink on my behalf and asked them WTF was going on) The out pouring of support has been truly uplifting.

    This week is sunshine and heat (currently 39 degree's) I have accepted I have cancer and no more why me, just a strange calmness 

    I was losing my faith which was more scary than cancer

    But is has been renewed by God and by good people.

    So from Down Under

    Thank You

    Dave

  • Morning from the UK, Dave!  (Stop boasting about the weather, please, it's blooming freezing here, although bright and sunny!)

    I'm so pleased that you are feeling calmer now, and have had some good support - even   from your PM's office, wow!  What did I tell you about Max, eh, and Diane?  Both a great  inspiration to take each day as it comes in a similar situation to yours.  

    I read your response on Max's thread and thank you for thanking me, we are always here to listen - whinge all you want, mate, I think we are entitled to do that sometimes! 

    Thinking of you, good luck!

    Hazel x

     

     

     

     

     

     

     

     

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  • Morning from the UK, Dave!  (Stop boasting about the weather, please, it's blooming freezing here, although bright and sunny!)

    I'm so pleased that you are feeling calmer now, and have had some good support - even   from your PM's office, wow!  What did I tell you about Max, eh, and Diane?  Both a great  inspiration to take each day as it comes in a similar situation to yours.  

    I read your response on Max's thread and thank you for thanking me, we are always here to listen - whinge all you want, mate, I think we are entitled to do that sometimes! 

    Thinking of you, good luck!

    Hazel x

     

     

     

     

     

     

     

     

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  • Hi Hazel

    Thanks for your words of support it has given me strength.  Strong enough to post about my journey which helps.  I didn't realise that you also have cancer and have suffered also. Sorry. 

    Strange how you find help in the most unusual places from people whom you are never going to meet.  Yet somehow feel you know them. (when I picture you I see a bird a willie wag tail I think they are called singing away merrily). Yes I'm a strange little man and you wont be the first to say that. lol

    It's 7am here and a cool change has come in it's currently15 degree's and will only get up to 33. haha.

    I really should go to bed as I've been up since yesterday.  But I'm not tired. 

    Thanks for your support it really is appreciated

    Dave

     

  • Hello, Dave, hope you won't feel too cold in that 15/33 degrees!

    I'm really chuffed (hope that's not a rude word in Oz, it means 'pleased' here!) that you imagine me as a 'willie wagtail', we have wagtails round here and seeing them bobbing up and down and rushing about always makes me smile. Probably not the same type as yours but must be similar.  I think I might change my avatar if I can find a picture of one! 

    Please try to get some sleep, and do take care.

    Hazel x

     

     

     

     

     

  • Hi, Dave, have just read your other thread, what a dreadful time you've had, I'm so sorry!  When do you see your oncologist again, you can't be left to go on like this for much longer, surely?  I feel so angry on your behalf.  If you are able, please keep posting, we are all here for you.  

    God bless. 

    Hazel x

    PS I hope my new wagtail avatar cheers you up just a little bit.

     

  • Thanks Hazel

    Cheer me up? It made my day. There is nothing you could possibly say to me that would offend me.:). I was worried I offended you. People dont like it when you tell them you picture them as ?  

    I get to see the oncologist next Wednesday.  Not looking forward to it but the waiting is worse.  

    On a side note I received a phone call from Centrelink on Friday apperantly the person didn't appreciate the compliant I made about him.  So he cut off my son's payment and phoned me up to say. 

    Who do you think you are? Complaining to the minister. You are not special there are other families that have to wait what makes you think you can just jump to the front of the queue. Then he told me I have to have proof of my cancer to get a disabilty support payment which I have.nt even lodge yet, just saying I have cancer is not good enough. My doctor, oncologist and the hospital must all be lieing to me and all the paperwork I have submitted over the past couple of years must be fake.

    Lucky for him at the time I was gob smacked I had only just gone to sleep and I honestly thought I was dreaming surely nobody is that stupid.

    Well if he was upset before he is going to be really mad this time.  I wrote so many complaints about the phone call and the way I was spoken to, to so many different Minister's and organisation's this bloke's head will be spinning by now.

    Whinging to you when you have your own problem's is a little embaressing and selfish.

    So young lady how are you today?  How is your treatment going? Good I hope.  Cold over there is it?:)  Well today it's going to be 25 bright and sunny brrrr might need a jumper.  Where I used to live it would get over 40.c in the middle of summer, once we had a week of over 50.c. Just heard 40.c next Monday so our cold spell is almost over.

    Thanks Hazel you are an inspiration to me.

    I put up a pic that best describes me.. I should of called it,  me in Centrelink 

    I will be including you in my prayer's tonight.

    Thank you for your support

  • Hi, Dave,

    Well, I guess it depends on what you picture someone as, maybe a Centrelink clerk wouldn't have gone down quite so well!  What a nasty person, I hope he gets a good going over as a result of all your complaints.  You should make that fierce looking little koala your letterhead, and your avatar - you go, mate!  You just don't need all that hassle when you're so ill, why can they not see that?

    I'm so pleased that you have your appt with the oncologist at last, is that tomorrow 17th or next week 24th?  As you say, not the best of days out and the waiting is awful, but at least you may get some answers and new treatment at last - please God.  

    It's 11 days since my last chemo and I have just come out of the nausea phase into the tired phase, one day I can get loads done then the next I'm too lazy to do anything, but unlike you and many others I am not in any pain any more, for which I'm thankful.  Next one is on 4th March, my final one, I hope!  

    Don't worry about whinging, in fact you cheer me up, especially when you call me 'young lady' -  if only! 

    Yes it is bl...y cold here still, snow forecast but haven't seen any yet, London gets off lightly compared to some parts of the U.K., but will prob need 3 jumpers plus coat, hat and scarf.  Bet that's made you jealous!

    Thanks for your prayers, Dave, am thinking of you too.

    Take care, Hazel x

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

  • Hi Dave hope you doing a bit better. What a nasty vicious person. People just can't act like an adult can they? those kind of people don't deserve respect in my books. Thats great you have an appointment for the oncologist finally must be glad after the waiting and being very anxious I'm guessing?. All the best -Diane x

  • Hi Hazel

    My appointment is next Wednesday the 24th the waiting is eating at me but it's only one more week.  

    I haven't heard anything from centrelink yet they are either getting a please explain from the bloke or they are ignoring my complaint which I doubt.  

    I took it really hard the doctor prescibed me serapax like I'm not on enough tablets as it is. But that is one tablet I will not take (I took half didn't like the feeling and gave the rest back).

    Enough of my whinging.  

    So young Lady feeling tired hey? I wish I was close as I would come around and give you a leg up.  Try to repay some of that goodwill you have shown me. I will pray that the next one is your last. Who know's he may answer me again. I really hope the best for you. I really do. You are my little ray of sunshine. :)

    3 jumpers coat and scarf? I'm starting to sweat just thinking about it. Shorts and a t-shirt weather here. lol. 

    I glad you liked the picture of the drop-bear.

    Look after yourself, take care and may

    God Bless you Hazel 

     

    Your Aussie mate

    Dave

  • Hi Diane

    I'm getting there.little by little.  I have chosen to not let this person get me down (I was in a really dark place last week) and well after seeing the doc and being prescribed more pills I'm starting to realise it's upto me what happens next.  Good or bad the decision's I make will be mine.  

    I think the bloke was on a power trip playing God with people's live's.  The way he treated me the first tme was bad but the phone call it was down right cowardly.  He should consider himself lucky I have cancer.  I'm only a little bloke and I have a terrible case of small man disease. Otherwise it could of ended really badly for him.

    But you meet nasty people everywhere.

    My son is 6 foot 4 120kgs and plays union he was at the local shops and was told I cant use the language here but he was called a muslim and told to go back to his own country (he's irish on myside and a kiwi on his mum's) well after he stopped laughing at the bloke he picked him up and put him in the bin. Taking out the trash as he put it.  I am so proud of him. 

    He is one of the reason's I still put up a fight.    

    thanks for your words of support and I am truly sorry about your situation.

    Be good Be happy as my daughter always says

    Dave

  • That's good your getting there little by little just take small steps and you will be fine in no time i bet. Good don't let this Horrible man put you down. If i was you i probably would of went and verbally abused the man but thats me ha ha. It takes a lot to make me angry but when i do it's like WW3 my kids say but thats when i pushed to my limit as you will well know as im sure you have been pushed to your limit as well. Your right the man is a coward. If the man had a problem he should of said it to your face (Sorry my motherly instincts are taking over with if you have a problem speak face to face) I'm just glad I'm not a bitter 73 year old woman as many of my friends are must come with the age ha ha. knowing me i would go on and on about how you should express your feeling instead of hurting others with them. Me to I'm happy your son did that. Can't believe what todays society is turning into well i hope it's just him and not others at least your finding your strength from some where. No problem if you need to talk I'm here -Diane x

  • Hello, Dave, how's things?  I've felt a bit better today and just got back from a nice long walk in the COLD!  I lied, though, it's only two jumpers, not three. 

    You mustn't let that nasty b (expletive deleted) at Centrelink get to you, he's not worth it, Dave, and certainly not worth making yourself more ill over.  (Just a thought, why not send your son round there, he could dump another one in the trash bin, haha)

    While I'm mentioning your son, may I ask why you are trying to hide how ill you feel from him?  Tell me if I'm being too nosey, but if he's keeping an eye on you I'm sure he knows anyway, and it might help to share your worries with him. But I guess you know him best and what his reaction might be, so forgive me if I'm intruding.  (Also, although I don't have any children, I do know from this forum how parents try to shield their children from worry.)

    When you dream of your lovely mum, I think she knows what you are going through and just wants to give you a hug and comfort you like she used to when you were a kid.  

    Take care, my Aussie mate, thinking of you as ever!

    Hazel x