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I'm so sorry Ste, I lost my mum 12 days ago and it's her funeral tomorrow. I know everyone's journey at the end is different but I think we all have the same feelings when it comes to losing our mums. My thoughts are with you, let's all try and give each other strength in the next few weeks/months.
Take care, Lorna xxx
I do hope I go as quickly as your Mum. About 3 years ago I had a bowel cancer removed and my surgeon told me that I was then cancer-free. No suggestion of follow-up treatment or anything.
It was a shock when my GP, after looking at my latest CT scan, looked very grave and told me that my cancer had metastasised to the liver and was now inoperable.
I think he was shocked when I laughed and said that I'd never wanted to live to a ripe old age (currently 72).
I'm now in the final stages of my first chemo cycle. It's been tough and I wanted to throw in the sponge when I kept getting unknown infections and sky-high temperatures but my onchologist persuaded me to persevere.
The chemo has shrunk the tumours a little and there's a possibility that they may be operable at the end of it.
Although the doctors are not pulling any punches - had I not had the chemo I'd have died within 3 months, this will give me about 3 more years - I really want the chemo to be over so I can hopefully have a few years (months?) of quality life. My husband is a wonderful support and I've grown closer to my children and their children. It seems strange that my mother will be celebrating her 100th birthday next week.
Best wishes to everyone who suffers on their own behalf or on behalf of their parents.
I am so sorry since from my experience if they get early in the bowel that it can stop there. Once it spreads to the liver there is really nothing that they can do but slow it down. Dont make the mistake that my mum made were she wasted the time the medician gave her by counting down to the next treatment. After she started the treatment she counted down to events that were coming up like christmas, wedding but when she missed an event it was a real set back. Make the most of your live as unlike others you know that there is an end in sight but dont over focus as anyone could die at any time. Your grandchildren are the greatest gift that you will leave behind which was something my dad realised and my mum missed out on. My dad passed away 1 1/2 years before my dad and yet my 6 yrs son still talks alot more about him than his grandmother. The memories that he created with my oldest will always stay with him like a piece of my dad goes on. I am not sure about the information that you have been given but with my mum at the time the facts stated that no one survives after two years so my mum bet that but that is all she did. Please do me one big favour tell your children to get tested from about 45 years of age onwards as they say it shows signs 20 years before you show any signs. I got my first test down last month and i now have to go back every 3 yrs for repeat test and i am only 34 years last week which the gift of knowledge that my mum gave me might safe my live for a future with my two boys. Good luck with you future and please make the full most of it
Firstly sorry to all those people who have lost a loved one and seen them go through this horrendous ordeal and gone through it with them.I havent been on here for a very long time,but lost my Mum to secondary liver cancer in 2010.Its a long old journey trying to make sense of losing your Mum and Im still well and truly on it. Think I always will be.
Just wanted to say to Mavarest dont give up hope .Ive seen threads on here about people who have survived for a few years with chemo on the secondaries.If they get small enough go for the surgery push for it.Its the only way to get rid of it.There was a lady on this site whose Dad had loads of tumours on his liver and had them removed and was still going strong for a few years after and he was in his 70's.The thing is sometimes you have to make sure you are getting the best treatment,sometimes investigating options the docs havent looked at.
If you were fairly fit before the cancer came back and you can withstand the chemo you must investigate all the possibilities.My Mum was 81 when diagnosed although it had been growing for a few years .She was amazing for her age and withstood loads of treatments and two massive ops.I so wish we had been more proactive once we got the liver diagnosis when the docs wrote her off.They saw her age, not her as an individual.
Anyway keep going and best of luck to you all.
I just wanted to thank you for your very brave post from 2009. My mum died 2 weeks ago at the age of 69 from primary gallbladder and secondary liver cancer. I read your post back in January this year when we were told there was nothing else they could do. It was a very tough read I have to say and I was in tears as I read it, but your frank account and very practical advice really helped me prepare for this very traumatic time. Because time is so precious and everything moves so fast it was so useful just to have everything very bluntly written down, it also made it slightly less scary to have that knowledge. I insisted on a bed with cots sides and I made sure the syringe driver was signed off as we approached the weekend, I bought everything on your list, although my mum refused to drink out of a baby beaker but more out of pride than anything else I think. We had brilliant nursing support but I felt much better equipped with your knowledge.
I wanted to add a few things to the list:
- tongue scraper (the mouth becomes very dry and uncomfortable close to the end)
- saliva spray (provided by nurses)
- very soft toothbrush for brushing away excess goo around the teeth
- Lemon Barley (my mum couldn't get enough of this, it seemed to work with her condition, maybe the acid in it, worth a try)
Some other bits of advice -
- One thing I hadn't really expected was that Mum quite soon lost the power of speech and the ability to write. So say everything that needs to be said early on while you have the chance, don't hide away from it. My mum wanted to write some notes to people but I left it a few days because I couldn't admit to myself that she was going to die so by the time I got around to it, she couldn't write and she had to dictate them to me.
- Yes, I agree about hearing, Mum could definitely hear me right up until the end, she was so weak that she could not squeeze my hand to respond but she could very slightly move her eyebrow when I asked her if she could hear me. So advice for anyone else reading this, keep telling them you love them right up until the end and that you are with them all the way and not to be scared because they can hear you.
- When preparing a room for your loved one, try and put it close to the heart of the home. We cleared the dining room downstairs next to the kitchen and living room so there were always people close by, at first we were thinking of preparing the spare room upstairs which was hidden away, we asked mum what she wanted and she made it clear she wanted to be near people. Also, don't underestimate the stress of moving into that prepared room and the connotations that it carries with it. Mum was scared to move into it, even though we'd made it really comfy, she knew that she would die in that room and it took a couple of days for her to do it, so don't rush them. If you are the primary carer, consider a blowup bed so you can sleep next to your loved one.
Thank you again and I hope I haven't upset you by bringing back memories. A big hug to anyone reading this post that is going through the same thing.
Reading through this page has brought on a lot of tears but feel it has given me more of an idea of what to expect and what to look out for, thank you everyone who shares their story. I was told my dad had liver cancer nearly three weeks ago now and no treatment or full results since then. I am getting very angry with the lack of help we have only been told it is liver cancer and it is a very large growth which will continue to grow and has taken over most of his liver.
My dad is 61 and hadn't been himself for the past few months was constantly tired and lost a lot of weight very quickly (and he doesnt exercise) so he was referred to the hospital and after 4 weeks they told him it was cancer and now we're waiting by the phone for further results
I am just wondering if anyone can be honest with me as I want to be prepared? Is liver cancer always going to have a quick downfall? Is it inevitable? My dad was doing well when he found out and was told he could come home while waiting for results but in the last week he has completely changed. He doesnt eat (all he had today was half a cup of soup) he stays in bed most of the day and when he is awake he is constantly angry and horrible to me and my mum but was never like that he worships me and for him to shout at me is unusual. He also used to shower twice a day now he barely gets up to shower. His face has changed he doesnt look like my dad anymore. Ive noticed a yellowing in his eyes but nothing extreme.
Can anyone offer any advice of is this nearing the end or do we have a hope in hell? I just think how is he ever going to battle chemo (the doctor has mentioned this will be the option) if he doesnt eat.
Thank you for taking the time to reply to me what you meant really helped when I was at one of my lowest points. My dad was taking into hospital the morning after I sent this post, he just was losing his mind and the breaking point for my mum is when he admitted he was frightened and asked if if was in his brain as he knew he was losing it. It was a lot down to medication for his diabetes he was told to come off but they gave us no explanation why or side effects, he has just been very poorly cared for by the doctors and there is only so much we can do i guess!!
He's in the best place now (well maybe) so fingers crossed
Hi everyone, I have just joined this group and have read a lot of the posts on here and my heart goes out to you all. The reason I am on here is that currently I have an older brother who is terminally ill with unknown primary which has spread to his lung and bones. However, the main reason I am posting is because my best friends Husband was diagnosed in Feb this year (2013) with unknown primary which has spread to his liver and his lungs. Reading other posts, I am astounded to read that they had tests, went for the results, told they had secondary cancer of the liver and offered palative care because there was nothing else that could be done, and some cases were given weeks to live or months to a couple of years at most. My friends Husband first went to his GP last Sept (2012) with pains in his abdomen, cancer was not suspected as GP did not refer for any tests. Feb this year went to GP again with a lump in his abdomen, loss of appetite and considerable weight loss, GP suspected a hernia and referred him to hospital for the hernia. While waiting for an appointment, stomach got bigger and bigger, went back to GP and was told hernia had grown. Various tests carried out and in March (2013) friend was told, not a hernia but cancer, massive tumor in stomach, unknown primary which has spread to liver and lungs. No discussion took place, for example we cannot cure you, or you do not have very long to live etc nothing, the only thing they discussed was we do not know where the primary is, so further tests undergone. These tests took another 2 weeks or so. During the 2 week wait, my friend started to fill up with fluid and was told to keep his feet high when sat down and in bed. When they went back to the consultant for test results, all they said was that they could not find the primary but in the 2 weeks between the CT scans, tumor had progressed by quite a rate and was now causing the fluid build up. Once more no discussion of treatment, no mention of terminal, no mention of the cancer full stop. What they did was to tell him they were keeping him in and were going to drain the fluid and take a liver biopsy. What they actually did, was take him in, leave him for 5 days and then started to drain the fluid which currently stands at over 20 liters drained from him and still going. He has now been in hospital 10 days and they said they would do the biopsy tomorrow (Mon 20th May 2013) Once they have done the biopsy, he can go home as the results take 3 to 5 days to come back. When he goes back, they can discuss treatment etc. Over the weekend his wife has noticed that the whites of his eyes are now yellow and his skin looks yellow and feels clammy. Nobody, not anyone has given them a prognosis, but while reading most of the previous posts on here, the fact that he is now jaundice does not give a good prognosis. He is 61, is he going to die in the next couple of weeks. I appreciate that everyone is different, but his cancer has gone untreated since Sept last year and currently still not being treated. My friend is beside herself with worry because she keeps saying, every week they don't start the treatment, the cancer is growing and getting worse. My gut feeling is that the hospital probably know the outcome, is this why they are in no rush to even discuss treatment. OMG my friend has got the biggest shock in the world coming her way and she is not even aware of it. I have no intention of informing her of what I have read today because that is the job of the doctors, but I do need to be there to support her when the penny does drop. Any ideas/thoughts anyone please.
hi, oh my its alfull and so sad.
i am at the point with my love, he is yellow, and now sleeping so much, and geting forgetfull, its so sad, we were geting marriesdin june, alas i dont think that will ever happen now....he lives in kent i in sussex, both single parents...i have used all my hoilday for this year, and now will take unpaid leave, which is frightening,,as bills can build up so fast.
i just dont want him to suffer or be in pain, he isnt at the moment, and i hope he will never be.
i know he is scared of dying, and i am for him, what can you say to them, is alfull xxxx
I feel so sad for you two. The only thing I can suggest is to LOVE him all you can, and spend as much time as you can together. There may not be much longer you can be together.
My dearest husband of 2 years, died last week 5 days after the doctor told him he may have 6 weeks! He just went to sleep but moved enough for me to hold his hand literally just before he died. The morphine makes sure they are not in any pain. I am still in shock. The Marie Curie nurses came for the last 2 nights, and were a great support. See if you can get their help via the District Nurses.
Make each day the best you can, my heart goes out to you both.
It is so very hard and my heart goes out to you. Take Helen's advice and just love him as much as you can. Taking unpaid leave is hard but you won't regret doing it to be with him and help him (I took unpaid leave to care for my dad). The Macmillan nurses and local hospice, as well as district nurses were great, so get all the help you can and don't be afraid to ask for it. They will all understand what you are going through. And remember that you're not alone in this... we'll all be thinking of you and your loved one.
So very very sorry to hear your sad news and just wish to give you both much love and I agree you are not alone. It is a long hard battle to stay strong I know.
My mum is at the same stage now, she is very jaundice, sleeping a lot and becoming more confused by the day. She was saying tonight she just felt rotten but is not in any pain. She is eating very little apart from the odd ensure.
It is all so stressful, you just dont want your loved one to suffer, but I have found this thread so helpful. We have the palliative care nurses involved as well as the district nurses and are getting carers next week. They have all been brilliant.
Sue, my heart goes out to you, hope you are coping OK xx
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