My Dad

My Dad has HCC, spread to lungs.

After a week on targeted chemo tablets,  he was taken into hospital with severe dehydration, uncontrollable diarrhoea, etc. He's been taken off these meds now for time being.

IV fluids have helped bring him back to us a bit - he seemed almost completely out of it when he was taken in; he's now drinking but barely eating, won't even drink fortsip.

Although I'm terrified of facing the end, and can't believe I'm asking this, I wondered if anyone recognises a similar scenario with their own loved ones? Are we close to the end?

He doesn't want to know too much but I feel that I now need to know what we're facing/will we get him home.

His symptoms are still being treated but the fact that he's not eating, is getting so weak and hasn't left a bed for over a fortnight hasn't been addressed much. Although the staff have all been lovely, if incredibly busy.

 

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    Hi Debs,

    I am so sorry to hear of the situation you are in with your dad. Sleeping a lot more, along with not eating and drinking can be an indication that you are nearing end of life. Can you make an appointment to see his doctor?  You might find it helpful to go with a list of the questions that you want answers to, as it is all too easy to forget something important in the heat of the moment.

    I do hope that you get some answers soon. Please keep in touch. We are always here for you.

    Kind regards,

    Jolamine xx

  • Thank you for replying:)

    Ssdly, Dads GP hasn't been particularly great to date, but at some point I'm going to try and have a word with his specialist nurse to find out where we are/what happens next.

    Only 3 weeks ago he was still mowing his lawn, going for walks - albeit slowly - and generally doing what he always did.

    Now he can barely walk, won't eat and is a shadow of himself.

    He talks of coming home but to do this I think he would need a care plan in place and I think that would finish him off mentally and emotionally.

    it really is the cruellest @%###** of a disease. 

  • Hi Debs . I'm so sorry to hear of  the situation you are in . My husband has kidney cancer that has spread to his lungs liver and bones . He was on 60mg  cabozantinib and suffered horrendous side effects ,  nothing would stay in his body .His weight loss was drastic so he was admitted to hospital put on fluids and steroids . They stopped his treatment for 2 wks and then put him on a lowe dosage of 20mg and is now doing so well . I do hope your dad will improve and be able to go back on his treatment .

  • Oh thank you so much Sharon, that gives me hope.

    They did say initially that they would eventually put him back on a lower dose but then sidelined the idea because he was so poorly.

    I hope with all my heart after reading your post that they may still do it. Thank you

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    Hi Debs,

    This is such a cruel disease and it is heartbreaking to watch a loved one going through it. If your dad is well enough to come home, the hospital can usually arrange a care plan quite quickly. Many people prefer to be at home with loved ones at the end rather than in hospital.

    It is so hard to see such a sudden deterioration in someone who was so fit just a few weeks ago. I have read Sharon's post and hope that your dad will pick up in a similar way to her husband.

    Remember that we are always here for you.

    Kind regards,

    Jolamine xx

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    Hi Sharon,

    A very warm welcome to our forum.

    I am so sorry to hear about your husband's condition, but I am really glad to hear that he is coping with the lower dosage and doing well on it. My mum had breast cancer which spread to all of her organs latterly and I know just how hard that was.

    My thoughts and prayers are with you both. Please keep in touch and remember that we are always here whenever you need support.

    Kind regards,

    Jolamine xx

  • Hi Jolamine. Thank you for your kind words . I am so sorry to hear of your mum's diagnosis , it's hard for everyone going through this dreadful illness we just enjoy the good days and grateful we still have our loved ones with us . Thinking of you and your family.         Sharon x

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    Hi Sharon, 

    I was diagnosed myself 12 years ago and have had 2 bout of breast cancer since then. At first I was petrified, as it wasn't long after my mum had died. Since then I have decided that life is too short to be miserable and afraid all of the time. I now take each day as it comes and try to make the best of it. Making memories with my family and grandchildren are what keep me going.

    This is such a horrible disease, as it impinges on all of the family. Don't forget that we are always here for you.

    Kind regards,

    Jolamine xx

  • m so sorry for everyone who is going through this.

    I'm going to try and post updates now and again when I'm up to it, in case at some point in the future it may be of use to others.

    Dad is still in hospital. He has lost all strength and has been in bed for a few weeks now. He's so wanting to come home and do all the things he loves doing, but at best I think he'll be sent home with palliative care, and the very mention of the word "palliative" terrifies him, so I don't know how he'll respond when he realises that he's not going to get an awful lot stronger.

    A consultant visited yesterday and said that there may be an infection in his blood, or it could be the cancer - more tests needed.

    Dad is barely eating. He is low because he's bed bound. An occupational therapist saw him today and asked what he could do at home. This without family being present to give any input as to what he might need. I want him home but I want him comfortable there.

    In the past week, I've found myself veering between wanting him to slip away peacefully when he looked so ill and depressed, and wishing with all my might for a miraculous upturn when he's seemed a bit brighter.

    I've really got no words to express how I feel about this disease and the fact that it's still wreaking such pain and havoc for so many people.

    The entire family is exhausted physically and mentally and my lovely Dad is experiencing all the things he dreaded ever happening to him.

    I don't know if he's near the end or if he'll get a little better, and I thought that perhaps if I try to post about what's happening it may help others who feel as lost as I do.

    Best wishes to all x