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Quality of life

Greeneyedman
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Hi

So it's now been 5 months since my wifes diagnosis of metastatic bowel cancer and still finding myself in the same black hole that I found myself in when we were first told the news.

When our oncologist said that the liver contained tumours almost covered half of the liver, it couldn't be operated on and that my wife would be on palliative care which she is now going through chemo for the forseeable. He said at the time that the purpose of palliative care would be to extend survival, promote quality of life etc. I'm sorry if this seems harsh but where exactly is the quality of life in all of this? Things have changed now for the worse as we have two young children also and is the hardest thing when we are extremely limited as to what we do or where we go. My wife on most days has very little energy, can't walk very far without getting tired, won't come out of the car when we go food shopping, sleeps quite a bit and at the moment has been down with a cold for the last 2 weeks as well as going through the chemo also. Surely this is just going to get worse but driving in to work this morning I started measuring it up, quantity over quality or quality over quantity. At the end of the day the chemo will only work for so long and then what? 

God reading it back makes me sound like a horrible, horrible person but I just don't know what to do or say anymore and feel my marriage is now strained due to the pressure of the situation. I can see now why people say it is sometimes harder for those who are the ones looking after someone who has cancer as I can't imagine ever having to deal with something so horrible as this. I was told my wife this week that she would like me to give her some smile, give her hugs and reassure her. I tell you, I'm trying. I really am but what about my reassurance, what about me? I'm in this too as our two beautiful young children?

Sorry rant over. Just wanted to see what others thought about quality of life etc.

Thanks for listening.

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    Hi,

    Let get one thing straight, you are definately not a horrible man for feeling like this. It is a fact that sometimes the treatment causes as many problems as the disease itself. Cancer doesnt just affect the patient, it affect's the whole family. You sound like you are trying to show a brave face to your wife while breaking up inside which is understandble. It's so very hard seeing someone we love suffering from cancer and is made worse by the fact we feel so helpless. All I can suggest is try and explain to your wife how you feel for both of you need each other and need to understand how each other is feeling so you can best support each other.

    Sending best wishes and kind thoughts your way, Brian

  • Offline in reply to woodworm

    Thank you Brian. Starting bottling it all up and glad I found this site as I know many more people have been or are currently going through similar situations as ours and just needed a little bit of a rant.

    Take care.

  • Offline in reply to Greeneyedman

    Hi,

    Well this is just the perfect place to rant, rave and to unload our feelings, Brian

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    Hi, I see you've received some kind words from Brian and he's right, you are not a horrible man. This awful disease puts a strain on all involved. 

    I am responding to your post as I am in a similar situation to your wife in that I have terminal bowel Cancer with liver and lung mets. In the past I have shown an intolerance to chemo but recently, I have been offered a new type of chemo. Weighing up how unwell the last lot made me, I have decided to decline the offer as there are no guarantees I will tolerate this regime nor how much 'extra time' it will give me. I am coping with my fatigue and pain with the support of my gp and pain nurse and touch wood, I'm able to achieve something each day . . . in a nutshell, I've chosen quality over quantity, but I appreciate everyone is different. 

    Brian's advice about talking to each other about how you're both feeling is sound advice. Do you have a Macmillan nurse who could help support you both? 

    Come and offload anytime. Take care, Jo x

  • Offline in reply to Meerkat@65

    Thanks Jo and sorry to hear about your similar situation to my wife. Wishing you all the best x

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    Hi

    As I was, like you, the other half in the equation when my husband was diagosied with incurable cancer, I though I would respond.  You are not at all horrible but under a considerable strain and hurting just as much as your wife on an emotional level, plus you have a young family to consider (our kids had flown the nest). My husband chose to undergo palliative chemo to hopefully buy some time and he only managed half his proposed treatment before his body had a bad reaction. For the next two years (three in total from diagnosis) is was all about coping on a day to day basis and he asked for life to be as normal as possible although to be truly frank here there was no 'personal side' to our marriage from the day of diagnosis (his choice which I honoured). Following the failure of the chemo his palliative care was all about keeping him painfree and this was managed through his consultant/GP and community nurses. The fatigue was a great source of sorrow for us as a family because it really did curtail what he could manage and enjoy. I was privileged to be his wife for 37+ years but watching his journey with cancer was emotionally draining.  Call on all the support you can to help you both through. Jules

      I too joined this great forum and found I could write about my frustrations/worries/fears (list is pretty much endless and to be truthful I felt awful and guilty at the outset),  This forum showed me such support and offered me the 'shelter' I needed to cope. Please rant and offload as often as you need to - bottling it up just makes it worse . Brian and Jo (who I consider firm forum buddies) have given you some good reponses and you can also call the nurses here from a UK landline for free (number at the bottom of the page) mon to fri 9-5 if you want a more personal and medical feedback.

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    Hi I was so sad to read your story. I was in a similar situation. My husband was diagnosed with pancreatic cancer which had spread to the liver just 12 weeks ago. There was no cure for him. Unfortunately he passed away last week. We have 2 teenage sons who are grieving their dad and I am a widow at 36. When my husband was diagnosed we were offered palliative care, we were unsure to begin with so decided to keep him at home however he became poor and wasn't eating or drinking so he was admitted into hospital. He was there for a week and then we got a bed in a hospice for him. After 2 nights in palliative care he perked up and was wanting to go out in the car a run and go to the shops, we were so happy for the palliative care and feel without it he might not have got as long. The room he had was really nice and we got to stay over with him. He then got the chance of chemo but that was just to add a couple of months onto his life. Before he could get chemo he needed to get a stent put in as he had jaundice, he also got a nerve blocker done at the same time. Unfortunately he got an infection and passed away just a week later. I am so grateful for the palliative care and wanted him to have a quality of life and not suffering. it is so hard to go through this when you have a young family and  I had been caring for him but he was suffering, losing weight and in pain. I had never been through anything like this before but it's amazing what you will do for a loved one in this situation. All I could think about at the time was what is going through my husbands head, he used to say to me that all he wants is for me and my boys to be ok. I would say we are all going to be fine although I was breaking inside. Sending love to you and your family . 

  • Offline in reply to jules54

    Hi jules

    Thank you for your kind words and appreciate you sharing your experience with me in which im trully sorry that you had to go through all of that. I will of course seek some advice at some point but for the moment I just dont feel like im ready just yet. Take care.

  • Offline in reply to Lindaboi

    Hi linda

    Thanks for your kind words and cant say how sorry I am for your loss. A real tragedy and something that no person or family shoukd have to deal with, ever. My wife is only 33 and I am 35 and our two children are just 7 and 9 years and cant even bare to think about how we're going to deal with whatever comes next but will battle through each day as it comes along. My family say they cant believe how strong i am dealing with it but dont have a choice really as i have to stay strong for the kids. What they dont know is just how heartbroken i feel inside. All the feelings ive read about are very accurate...angry, frightened, alone etc. Sorry am going on again.

    Take care x

  • Offline

    Hello Greeneyedman,

    Your story is very moving. I am glad you received the warm welcome you deserve on the forum.

    I have just spotted this thread by OMGitsDMC whose wife is 36, a similar age to yours, and has also been offered palliative treatment. I have a feeling you two would have a lot to talk about and it can make you feel better to know that you are not alone. So don't hesitate to say hello on his thread if you wish!

    Best wishes,  

    Lucie, Cancer Chat Moderator

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