Dad has decided not to have chemo.

My 80 year old Dad was diagnosed with bowel cancer this time last year. He had surgery to remove the tumour. He had a secondary tumour in his lung which was removed in January 2017. He recovered to some extent but became thin and frail. Unsteady on his feet. He had a scan in August which showed a number of small tumours in his lungs and a new tumour on his adrenal gland. The Oncologist advised that he enjoy the rest of the summer then have a repeat scan in October. The past 2 weeks he lost his appetite and has been vomiting- sometimes massively, undigested food, sometimes just small amounts. He has fallen a number of times. Thankfully not hurt himself yet. My Mum is caring for him as best she can. He got his scan results yesterday. No change in the lungs but the adrenal tumour has grown a bit. He has been offered oral chemo as an outpatient- but my Mum rang earlier to say he’s thought long and hard but decided he doesn’t want the chemo. I have mixed feelings about this. I understand that he’s had enough and is suffering. His quality of life is already poor even before he starts with debilitating chemo side effects. He goes nowhere as he is too frail. But I’m also worried that it’s the wrong decision. I don’t know what to think. I know he is dying but it’s how he will die that is scaring me. I want him to suffer as little as possible. Any kind words/thoughts would be very welcome. My brain is in turmoil.

  • Hi there ... it sounds like your dad has had so much to go through all ready... if he has made his decision  and if he's weighed up the choice in his head, he must want to make the most of his time without going through cemo and those effects again ... I'm not having treatment too ... and my family are supporting my decision, so weather ito long or short I'm making the most of every day ... you still have time to hold his hand through this journey... ask him things about when he was young ... the music he liked .. is there anything he still wants to do ... 

    I lost my mum suddenly to a heart attack... I would give anything for just one more day ... you have that chance ... it's o. K to admit you feel scared .. even a few shared tears ... this disease wants us to feel desolate, to give up, and it has no compassion... so every day you make good memories ... and smile and walk this path together,  you'll be putting your two fingers up cancer... 

    This will be a difficult time and you will feel so many emotions... it's normal ... but jump back on his path and give him loving memories ... no one can take them away ... sending you a big hug .. Chrissie xx

  • Hello IClark7335,

    Thank you for posting on Cancer Chat.  I am very sorry to hear about your dad and I can appreciate your concerns.

    I realise that you think the wrong decision about not having the treatment was made by your dad, especially if he was fully informed of the possible risks and benefits of having it. While chemotherapy might have helped shrink his cancer, unfortunately there is no guarantee that it would have and that he would have felt better for having it. His symptoms can hopefully be managed with other types of treatment.  

    I know that caring for someone you love who is dying can be an uncertain and difficult time.  Nevertheless there is support your dad and mum can have that can make life easier and better.  I am not sure what support (if any) they have at home. I think if your dad has not been referred to the community palliative care team (sometimes also known as Macmillan) this will be of some help.  This specialist nurse team are experts in controlling symptoms and supporting families at home.  They can also refer people to other agencies to ensure someone is safe and comfortable at home.  Your dad’s GP can refer him to this team and/or a community nurse team such as the District Nurses.  We have some information about what support can be offered to people at home with advanced cancer, click here to see it.

    We have information about the symptoms of advanced bowel cancer that you may find useful to read here

    Please do let your dad’s GP know (if he or she doesn’t already) about the symptoms he is having, especially the vomiting and the episodes of falling. As he may need an assessment and a home visit to know what would be best to help alleviate them, and make him feel better. 

    I realise that this is a difficult time for you and your family but I hope this has helped in some way. Please do get back to us if you have any more questions or call us on 0808 800 4040. We are here from Monday to Friday, 9am to 5pm.

    Take care

    Caroline

  • Thank you so much Chrissie for your kind words and encouragement. (And for the virtual hug!) Continue to make the most of each day. I will do as you suggest, keep going and keep making memories. xxx

  • Thank you Caroline for your prompt response and reassurance. It helps to read that there were no guarantees if he had the chemo. Thank you for the great advice. I will make sure they are getting all the support on offer. He has had a bad day today. More vomiting and he says he feels awful. I think he has simply had enough. His GP has prescribed antisickness medication and stopped his anti hypertensive as his BP was plummeting on standing. No wonder he has been falling! Best wishes. 

  • Hi I joined after reading your post.  My father has been battling cancer for two and a half years now.  He began to feel so ill and then caught a chest infection in May this year so took the decision to refuse further treatment.  I have to say that, although now he is sleeping a lot and appears really frail, we have had magical times since May. We have taken him out for day trips and the grandchildren have made an effort to join us on many of those.  I am, like all sons and daughters of cancern patients, grieving and crying most days, however, quality of life for him is important and I have to respect his decisions at all times. It is his body, his illness, his decision.   All I can suggest is that you spend special times together, making happy memories, My Dad is of a generation that does not like to talk of feelings.  However, two weeks ago we took him back to his place of birth by the sea, which he loved and he spent a lot of time reminiscing about things he did as a boy.  Selfishly, I want to keep him alive for ever, however, I can also see what all of this strain and sadness is doing to my mother..

    Friends of ours are medics and they have assured me that my father should not have to put up with any pain nowadays, so at least that is something.  Finally, the Hospice team has given my mother a 24 hour help line and they are brilliant.

    I can empathise with your anguish, Trust in your father's brave decision and make the most of the time you have left.  God bless!

  • Hi hornets ...Just wanted to say, what a wonderful son / daughter you are ... he must feel so proud of you .. to give him the control over what he wants ... my family have done the same for me, and I love them for it ... you will have tears, but oh so many memories too ... I loved an old saying .. don't wait for the storm to pass, learn to dance in the rain ... so many old ens like us are pressured into treatment they don't want but do ...  I'm making the most of every day ... that cancer takes so much from us ... living life and making memories really does kick cancers backside all the way ... so big hug to you too chrisie xx 

  • Hello Hornets, Thank you for your response. It really helps to read the experiences of others. I am so pleased to read that you have had magical times with your Dad. My Dad is now being seen regularly by his GP and the MacMillan nurse visited yesterday. The medication for nausea and bowel problems are helping him- he’s more comfortable this week than he was last. His bed has been brought downstairs as the stairs have become such a struggle. The strength has gone from his legs. Like your Dad he is sleeping a lot. He is frail and thin as he has not been able to eat or drink much recently. However he is still getting up and dressed each day. We are getting a wheelchair do we can take him out for fresh air. I am coming to terms with his decision and understand why he has made it. I think it is the right decision for him. The strain on my poor Mum though is immense. She is providing all his physical care despite her age and is very frightened. God bless you and your family too. xxx