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FormerMember over 16 years ago

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Whether you’re here to talk to others, join a group, ask questions or just listen, everyone is here to offer emotional and practical support to help you with your cancer journey.

We know it can sometimes be confusing when you first arrive, with lots of forums and groups to choose from. So this thread is to welcome you, make friends and help you find your way around the site. Whether you are a patient, family member, friend or a carer, feel free to post any thoughts or questions here and other Share users will be happy to help you navigate around the site and find what you are looking for.

FormerMember over 15 years ago

Penny

I pmd you before I saw this post, as you requested friend. I am sorry you feel you haven't been getting enough responses. I guess it is because it is such a rare cancer. I'm sorry too that your husband is struggling with this. Have you asked him to come on here? If you ask Macmillan can arrange some counselling for both of you; together or separately. Do you have a Macmillan nurse?
I am only on the forum for a few minutes now, but will be on again later around 10.30-11pm if you want to talk by pm.
Love HarryB x x

FormerMember over 15 years ago

Dear pennysz1, hello, i have read your profile, you have been through the mill havent you? im sorry i cant give you any advice about your cancer, but try going to the left hand side of the page, and clicking on cancer tags, it may take you to where others are in a similar position, if not open your own topic on share, and someone will find you, and reply,everyone on here are lovely, they will try to help and support you the best way they can, you will also make very good friends. i am sorry about whats happened to you, as you know everyone here, is either a patient, carer, friend, family all linked with the same thing cancer, your husband is feeling very angry at the moment, as i was, when i first found out about my hubby(he has terminal lung cancer) i was exactly the same, but in time you learn to calm down abit, your concern is for your loved one. he will come round, and hopefully give you the support you need, as for your friends, that is exactly the same thing that happened to us, people are not sure what to say to you, they have passed me by in the street, and still do, i ignore it, it upset me at first, now i cant be bothered with them. you will however find out who your real friends are, you will now have alot of time taken up by appointments at the hospital, just take one step at a time, unite as a family, but remember, all of us here on the mac site will support you and help you, i dont know what i would have done without a few, and im going to name them, wittywoodworker(allyson) jayceeh(judy) henrietta(harry)thankful(christine) without these i dont know where i would be now, and i thank them with all my heart. just keep strong and positive, we will be here for you, and im sorry about you said, you had posted a few times before, without any response, i dont know what happened there, if you create your own topic, it will help, my best wishes to you and your family, jackie xxxxxxxxxxxxxxxxxxxx

FormerMember over 15 years ago

Hi, have not used any chat rooms before. My Dad is quite poorly. He was diagnosed with secondary liver cancer 9 months ago but was ill 2 months before that. He has had effective chemo treatment but has become immune to it. They are now trying a different type of chemo. In 3 weeks there has been a huge deterioation. Is there anyone who can discuss what to expect. His tummy is very distended and discoloured and his legs and feet are now swollen. Sleeping alot and in discomfort. Thank you

FormerMember over 15 years ago

Hello Surfy

Sorry you have had to come on this site, I also only came on yesterday but I saw your post and have just rung my best friend who has sadly just lost her husband to secondry liver cancer so maybe she can help you, she is going to get back to you soon.
Take care Jen x

FormerMember over 15 years ago

HELLO SURFY my best mate jen has just told me about your worries my graham passed 3 weeks ago with secondary liver cancer he was just 71 had been poorly off and on for a long time but was only told mid october that nothing could be done .you dear dad responding to treatment however is a bonus i dont think he should be in any pain or discumfort there is so much out there to help.graham was put on steroids which helped him feel better and stopped the agrivation .the fluid building up in legs and tummy is all part of it he must keep his legs up as much as pos if they get inflamed looking E45 cream helps a lot .sleeping a lot is also part of the problem aparantly the liver demands so much from the other organs if this is correct this causes the tiredness .i think steroids will help boost his apetite our doctors told graham to eat as much as he could especially protein .the doctor can also give your dad energy drinks .my graham ate his roast dinner etc a week before he died .your dad will recharge his batteries when he is asleep has he got age on his side ? i picked up so much help from the internet and knew what to expect .sounds a bit daunting but it helped me and i will help you if i can take care hope i have helped you take care lots of love sue

FormerMember over 15 years ago

Hi Im new to this site.

My Dad has been diagnosed with Prostrate cancer and secondary bone cancer. All the signs were there and he chose to ignore them 5 years ago. It was a constant battle to get him to see a doctor. We are usually a very strong family as we have had our fair share of Tragedy in our lives, but this has news has crippled us.
I live abroad and travelled back to see my dad with has grandson 2 weeks ago. He has been admitted to a Hospice as he was in agony with the pain in his pelvis and legs...I was told he was really bad. I arrived expecting the worse and had to sit outside for 15 mins before i could go in. There he was, alert, and knowing us as soon as we went in and even managed to walk round the gardens, unsteadily and with a stick, but he walked..I came home feeling happier that he would battle this and even spoke about coming to see us in April.

Lat week My dad had his Mri scan and after seeing the extent of the bone cancer in his spine has appeared to given up completely. He has Sam (our macmillian angel) but when she goes he just wont eat or drink....He is now so thin that he is wasting away...My step mother says he wont eat or drink and he has even started hiding food in his bedroom. Why does he do this???? Does he not want to fight???? Does he want to die.?

II feel like i want to scream at him to Fight and Live. I feel angry that he didnt see his doctor sooner. In fact that is how i feel Angry.
Is this normal??? I ask myself "how would you be in the same position?" I try to say this isnt about me its about my dad.
I am realistic to the fact that my dad is going to die but why does he seem to be eager to go.????I love my dad so much but I cant get out of my head that he handed himself a life sentance by trying to ignore symptoms earlier.

FormerMember over 15 years ago

Hi Im new to this site.

My Dad has been diagnosed with Prostrate cancer and secondary bone cancer. All the signs were there and he chose to ignore them 5 years ago. It was a constant battle to get him to see a doctor. We are usually a very strong family as we have had our fair share of Tragedy in our lives, but this has news has crippled us.
I live abroad and travelled back to see my dad with his grandson 2 weeks ago. He had been admitted to a Hospice as he was in agony with the pain in his pelvis and legs...I was told he was really bad. I arrived expecting the worse and had to sit outside for 15 mins before i could go in. There he was, alert, and knowing us as soon as we went in and even managed to walk round the gardens, unsteadily and with a stick, but he walked..I came home feeling happier that he would battle this and even spoke about coming to see us in April.

Lat week My dad had his Mri scan and after seeing the extent of the bone cancer in his spine has appeared to given up completely. He has Sam (our macmillian angel) but when she goes he just wont eat or drink....He is now so thin that he is wasting away...My step mother says he wont eat or drink and he has even started hiding food in his bedroom. Why does he do this???? Does he not want to fight???? Does he want to die.?

I feel like i want to scream at him to Fight and Live. I feel angry that he didnt see his doctor sooner. In fact that is how i feel Angry.
Is this normal??? I ask myself "how would you be in the same position?" I try to say this isnt about me its about my dad.
I am realistic to the fact that my dad is going to die but why does he seem to be eager to go.????I love my dad so much but I cant get out of my head that he handed himself a life sentance by trying to ignore symptoms earlier.

FormerMember over 15 years ago

Dear dingy, im so sorry that you had to come here, but you are in the right place, with the loveliest people ready to help and support you, im so sorry your father has this cancer, first of\all if you go to the left hand side of the page, and click on the cancer tags, this will take you where you want to be, to others in the same situation ie, the same cancer, my hubby has got terminal lung cancer, so its a bit different from your fathers. Or you could create your own topic, which would bring people to you, that might help, i hope you get some good advice from others on here, i send you my very best wishes, jackie. x

FormerMember over 15 years ago

Hi Dingy

Like Jackie, I am sorry of your need to be here, but welcome anyway. I can relate to what you are saying, because my husband also has secondary bone cancer in his legs & pelvic bones. He too was ill for a long time before he went to the doctors, and YES it does make you angry!

I'm sorry that your dad seems to have no fight left in him. It is possibly to do with the drugs he is on for pain, as some of them can take away appetite, but some can also cause psychological changes too. Also, we can't get in the minds of anyone who has been given a terminal diagnosis. We can only imagine how they feel. For some it is a death sentence literally, and they just give up and wait to die. Others may view it that their life is now limited and either fight or make the most of it, but the truth is they have to do it their way, even if its not what we want for them.
I understand the anger you feel. I was angry with my husband for years because he wouldn't go to the docs. When I finally managed to get him there, because he didn't want to know, he told her a garbled tale nothing to do with his symptoms, and pretended he was there for something else entirely. He hadn't even told me all his symptoms,at that point, so I was helpless. Helpless and angry. I became resigned to the fact, thinking you can't make someone do what they dont want to do.
The proverbial, you can take a horse to water, but you can't make it drink!
I am so sorry that you are looking at losing your dad, and so sorry he wont help himself. You have come to the right place for support hough, as we are all dealing with this one way and another, and as Jackie said, everyone on here is very supportive and kind.
So feel free to come on and chat, have a rant a cry or whatever you need.

Love & hugs HarryBarb x

FormerMember over 15 years ago

Thank you Nanijen and Crispy Sue, it was really kind of you and it has helped.

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