My husband is currently having chemo for secondary liver cancer. We have been told its terminal, how on earth do people cope with that diagnosis its like sitting on a time bomb waiting to go off. I am constantly looking at him to see if any changes are happening, what do we do, live life day by day or take a risk and really go for it with what time we have left. I know there are no real answers but some thoughts from anyone would be good.
FormerMember
I have been diagnosed with secondaries in liver and lungs, and I am awaiting chemotherapy, probably to begin next week. I have not been told it is "terminal", just that I will never get better - not sure if that's the same thing! I am grateful for the chance to "put my affairs in order", and believe me, I have a lot of affairs to put in order! I can't really do anything special like they do in the movies when given a short time to live, as we don't have the money for it and are tied to the house by our animals, But I am trying to "live life to the full" in terms of enjoying each day, going on favourite walks, catching up with old friends as well as sorting out my "stuff"!
Like you, I am keeping an eye on my body for signs of deterioration - every "twinge" suddenly takes on a new significance! I am trying to do as much as I can for as long as I can, and eating well for when I no longer can.
I think if I could afford it and didn't have the animals as a tie, I would splash out on one great holiday with my partner and daughter, Actually we have never had one together, but living here is very much like one long holiday in the warm idyllic summers. I guess I would just like to give them a few more happy memories of me, plus like to see a wee bit more of the world! But as that is not possible, I'm just going to try and make the most of each day as it comes.
Sorry, this is not at all constructive, is it?! You said some thoughts from anyone would be good, so here are a few garbled thoughts from me!! All I would add is that I want to talk about my cancer, and life after I'm gone. Everyone is different, and I guess some people wouldn't want even to mention it between them, but I have always been honest and open and cannot change now. I realise it is probably harder for carers than cancer sufferers themselves - you have to return to "normality" after the loved one has passed on. But it is helpful to know that you will be okay!
My partner was with me when I was told that I had just "3-4 months" left to live. We left in a state of shock, as this had come out of the blue, after a misdiagnosis where I'd been told I had quite a good chance (which was enough of a shock). My partner took the next day off work and we caught a bus into Derbyshire and sat by a river, feeling that any minute we might wake up and find it had all been a nightmare. What do you do when you have only 12-16 weeks left? I hadn't got a passport, so we didn't go off and book a holiday - and I didn't belong to this site then, so had no idea that there ARE insurance companies who will give us holiday insurance. Friends took me out. They planted a memorial tree for me at work and then gave me the sack. I gave all my family photos and genealogical research to my brother. I made a new will and paid for my funeral. Umm, what now? ......... Well, nearly 18 months on I am still very much here, so anything the doctors have said about timescales....
I know exactly what you are going through, and this is not easy, but somehow, at some point, one comes to terms with this, re-maps the scheme by which we live our life and does manage to have a lot of lovely things still happen. I do take 2mg Lorazepam each night, as it means I get undisturbed sleep. I also take whatever painkillers I need, and simply try to get on and do the things I really want to do. It's not all roses (as some people still at work seem to think) but it's not all thorns either (which is what it must seem like to you at the moment).
Right, that's enough gabbling on from me for the moment. Just wishing you both the very very best, sending hugs, and looking forward to hearing from you with an update on the chemo progress. xxxxxx Penny
I have been led to believe by kind doctors that my outlook was reasonably good but that has been snatched away from me today as a result of an ultrasound that shows that there are secondaries in the lymph nodes outside the liver so the procedure they were planning to remove the secondaries from the liver cannot now be done.
So sitting here tonight I joined thhis community and read the two brave letters on terminal illness
it all depends how well you are and if you can get about. if you are well enough fill your boots and do all the things you wanted to do but never got round to, there will be enough time later for living day to day.
as for living with the knowledge termonal cancer as a sufferer i don't know, but as a carer i only think about tomorrow or next week and do the best i can to support the sufferer
Thank you so much for your reply. Thought I would fill you in on the whole picture. My husband had cancer on the base of his tongue 4 years ago. He had a radical neck disscetion because it had gone to the lymph nodes in the neck. He then had radiotherapy and chemo. This left him with no saliva at all so he hasn't been able to eat solid food for 4 years. We manage with a liquid diet and do still go on holiday abroad. We just have to post all his food out before we go.
We thought we were doing really well, 4 years down the line. He was feeling really tired and lethargic with no energy back in the early part of this year but we just put it down to the stress of his job. I eventually managed to persuade him to go to the doctor as he kept getting constipation and bloating. Anyway the result was the cancer had spread to his liver.
The outcome was that they couldn't operate and that he would have chemo. We were told that if he didn't have the treatment he would have 2 months, and even with it 6-12 months. He had his first session back in July and reacted so badly to it that he was in hospital for 6 weeks. It was decided that for the second session that they would change the chemo from Cysplatin which he had for his original tongue cancer to Carboplatin. This is along with 5FU.
He had a CT and MRI on Thursday and we are waiting for the results. My obvious concern is that we are now 4 months down the line. He gets the odd twinge but certainly no paid to speak of, although I have heard it said that the liver puts up with a lot before it compains. The next chemo session is due to start on the 24th.
He is trying to get all his papers in order and we have managed to sort out bank accounts etc. I think if we can get as much done as soon as possible, we will have more time at a later stage to perhaps do the things we want to. I still work as we do need the money, my husband hasn't worked now since July and this makes things difficult as I feel I need to spend every moment with him, but I do not at the moment this is not possible.
I am glad to hear that you are still here after 18 months. It does just show that they don't always get things spot on. One oncologist told us that they were taught to treat the patient not the scan. In other words if the patient looks and is well things could be much better that the scan is showing.
I am sorry to have gone on so much, but I do feel it helps me to blurt this all out to someone. I do try and be strong for my husband's sake but it is not always easy and I spend many a time in tears.
