My Dad and bowel cancer - scared!

My lovely Dad was diagnosed two years ago in April 2015 with stage 4 incurable bowel cancer which has spread to his lungs and liver. Since his diagnosis he's had on/off palliative chemotherapy. My mum said the doctor gave him 2-3 years prognosis, which nobody knew apart from her at the time, I only found out a couple of weeks ago! Then 3 weeks ago we found out the cancer has now spread to his brain! He's been in hospital since, he's had a CT scan, an MRI, a biopsy as they had to perform brain surgery to drain some fluid and he's awaiting a lumbar puncture. He's really deteoriating, he's fragile, pale, weak, he's lost weight, he's tired, he's confused and he keeps saying 'he's dying.' My mum expressed to me this evening that she would be surprised if he lasts until the end of the year! 

I'm so frightened, I'm 28 and my younger brothers only 25. I have an older sister too! And we are so terrified at the thought of losing our dad, we knew we would one day we just hoped it wouldn't be for years. I feel sick, it hurts to bad to know that when it does finally happen I'll never get to see my daddy again. To hear his voice, see him smile and laugh, only in my memories...

  • I can't imagine how tough this must be for you and your siblings at the moment Butterfly89 but I just wanted to let you know that you are not alone. Many members have been in similar positions with their parents and loved ones and I'm sure they will post soon to offer their support and share their experiences with you.

    I know this will be easier said than done but try not to think too far ahead if you can. It's natural to be worried about what may come but for now try to take it a day at a time and spend as much time with your dad as you can. Maybe you could make some home videos to have something to look back on in the future (if your dad is ok to do so)?

    Post as much as you need to Butterfly and remember that we will be here to support you every step of the way.

    Kind Regards, 

    Steph, Cancer Chat Moderator

  • Hi Butterfly89, I am ever so sorry to hear about your dad, my heart goes out to you. I have been in your position but unfortunately only had 8 very difficult weeks between my dads diagnosis of terminal lung cancer and his passing in January-March of this year. I am 29 with 2 older sisters. My dad was just 65 and has sadly left my mum behind after 40 years of marriage. I want you to know that you are certainly not alone in this difficult time, there are many of us behind other closed doors that have felt just as scared as you do. Unless you've experienced it, no-one understands. As much as I'd like to take away your pain and can't, the next best thing is to offer you my experience/advice having dealt with an imminent terminal prognosis and loss of my father. Anticipatory grief is normal and will make every day very difficult for you all. Let yourself feel it. Let yourself feel everything you need to. It is normal to mourn from the terminal diagnosis. Your dad may also now be mourning the loss of his life. Go through this with him and allow him to express his fears. I felt at the time that I did as much as I could to be with my dad and behave with him in the appropriate way for him in the situation - he too was tired, weak, confused and visibly deteriorating. He was sleeping most of the day and upset when awake. I longed to laugh with him as we always had and really wanted to give him as many smiles as possible in the time that we had left, but he was a changed, dying man and we spent our time with him trying to ensure his basic comfort and support him. Spend as much time as you can with your dad. Nothing else matters in the world. I had to manage working (and being pregnant with my first child) so took many days off just to be around whilst he was still with us - having been told he may have 3 months left, or more or less. The unknown timeframe is very hard to deal with but do as much as you can to see him - you will never ever regret this time afterward, however difficult it feels. Even if you are just mostly sitting there whilst he sleeps, to speak with him for 5 minutes. As Steph has said, take each day as it comes. As much as you want to control the situation and know how it may progress, none of us ever know. I constantly looked for a timeframe and you can look for signs of approaching death online to prepare yourself for what may happen, but but you can never know as everyone is different. The here and now is the most important thing. Treat every day as a near last with him and you won't regret anything. Tell him how much you love him. Try to talk about his family history if he is inclined, or his other knowledge, his loves. Talk about your childhood and all the things you are grateful for from him. Don't leave anything unsaid. These days are extremely precious and he will appreciate hearing that his life has been important to you. At the end of life we want to know it has all been for something. I regret not holding my dads hand more, hugging him a few more times. Make sure you do as much as possible to soak up this time - however difficult this seems, you will hold on to these memories forever. It will be hard, you won't feel strong, but push yourself to have this time. I painfully wish I could hug my dad one more time - I should have. We had difficulty managing my dads pain that skyrocketed in the last week of his life as he was under hospice at home, cared for by my mum and us, with support from palliative care. Make sure whether at home or in hospital that you keep one step ahead of his pain with medication. Being new to this we couldn't - we learnt through our experience that they can only up pain relief (morphine) slowly, a certain amount per day. They started him too low and he spent his last week dying in pain - the meds were never enough as each day grew considerably more painful for him than the last, the meds never really kept up. Seeing my amazing dad, actively dying in pain will haunt me for the rest of my life. Do everything you can to ensure high pain relief and relaxants - don't agree to wait for breakthrough pain for a meds increase if the care team suggest this to you. Ask for more. I'm sorry to be frank but as this is in your dads brain now, this may be less relevant. He may slip away quickly due to the location - which is the lesser evil. We all longed for it to be quick for my dad so he didn't suffer. The fact that it wasn't and his pain wasn't managed haunts me. Manage his pain for his sake would be my one main piece of advice. None of this is easy, and none of this is fair. Your hearts will break many times over. But remember that it hurts so much because you have been lucky enough to have to much love together. And for this, you are extremely lucky. Love is what our lives are all for. I really wish you all the strength that you need to get through this. I hope you continue to find comfort in reading forums, I certainly did and continue to when I feel scared and alone, even with a supportive family. Yours, Debbie
  • Yes we are many to here ..thats bearing horible situation...God bless you n your family...

  • My Mom died of Cancer 9 years ago. I now have stage 4 Colon Cancer that has spread to my Liver and was told 1-1/2 years ago I had about 2 years left maybe a bit more. I know what its like to loose a loved one & then experience this myself. If I may give you some advice. Treat your Dad with love, don't dwell on the negative, come to grips with his situation and make peace with him so he knows you are there for him, you love him. Once that's out of the way treat him like you would if he was healthy and don't remind him of his cancer. Cancer is not a nice disease and has no favorites. Spend this time with your Dad in a positive way so when all is done you will remember him and all the positive times you had together. I'm sure he loves you so be strong and make his last days & months happy the best you can. If I may say one last thing is your hurt and negativity about his condition will certainly reflect on him and his feelings. Try to be strong and positive and he in turn will also be strong and positive.