Don't know if my dad has got long to live?

Diane 5 years ago

5 replies

My dad was diagnosed with terminal head and neck cancer last September and given less than six months to live. The community hospice nurse told us he had weeks to live in January. My amazing cancer fighting dad is still with us . He wants to stay at home and the wonderful Marie curie nurses are helping with his care. My problem is that I cannot now believe anyone who estimates how long he has. He is very frail now. My sister asked the hospice nurse last week how long and she said that he had weeks.I refuse to believe it as every thing that has previously been said has been wrong.

Support 5 years ago

Hi Diane,

I am sorry to read about your Dad’s prognosis; however it is great to read about the amazing care he is receiving. It can be very difficult for health care professionals to estimate how long somebody has left to live as their condition can change hourly or daily. We have some information on the website which looks at changes people may experience towards the end of the life. You may find it helpful to read through this information. Many people tell us that it helps to talk about their emotions and if you would like to contact us at the Support Line you are very welcome to do that.

 If you would like to talk about things in more detail please call our Free phone Support Line on 0800 090 2309, or drop us a line via Web Chat:https://www.mariecurie.org.uk/help

Best Wishes

Brigette

Marie Curie Support Line

Emma83 5 years ago

Hi Diane I am very sorry to hear about your Dad.  

I can totally relate to what you're going through as I lost my dear Dad a week last Saturday to terminal colon cancer that had spread to the liver.  

We only found out he had cancer about six week before he died as he hid all of his symptoms.    First of all, his life expectancy was positive (18 months), then it went down to six, then three, then finally about six weeks.  

The Tuesday before he passed, the GP came out and said my Dad had 'days' which was a shock as I had thought he had at least another 3 weeks.  The main signs I saw were that he became more jaundice, and his appetite completely went - even though this had been reduced for months he had always managed small meals but all of a sudden he could barely manage a spoon full of cereal.  He also became so weak that he didn't leave his bed and slept most of the time.   He was always mentally sharp, but in the last few days he became a bit confused.   A lot of weight dropped off him in a week so he we was basically skeletal.  One big thing I noticed six days before he passed was that his pulse became very strong and noticeable on both his wrist and neck - apparently this is normal as the heart has to work harder .  He also complained of a 'burning' sensation on his legs and the Marie Curie nurse said that this part of the process of his body shutting down.  

However long your Dad has left, I would try to take each day as it comes.  Unfortunately, everything becomes literally completely taken out of your control and you literally just have to learn to live with the unexpected.   I know how hard it is but try to keep a bit of normality in your life as otherwise you could burn yourself out.   Try make the most of every minute and count every day with your Dad as a bonus.  He could surprise you and go on longer, or it could happen suddenly.  

I wasn't prepared for how much the actual dying process would upset/distress me so much.  I naively thought he would just 'pop off' but watching him on the end of life meds was very hard - make sure you have plenty of support if you are going to stay with him, and take regular breaks to help you stay strong.  

Even though my Dad was virtually completely unreactive to anything, I do strongly believe he could hear what we were saying as he would occasionally life an eye brow so make sure you keep talking to him.  

Big hugs and love to you and all your family.  

xxxx

Diane 5 years ago

Thank you for responding. My dad is still managing to eat soft food and still has an appetite. I think he is still fighting this awful disease. We have District nurses coming in every day to change his dressings. He has a hole in his hip bedsores on his sacrum and feet plus two of his toes have went black. I know he is not going to get better but every day is a bonus. I am very scared regarding the end of his life but thankfully he is not there yet x

Headcorn61 5 years ago

I so understand how you feel , i am going though just the same as we speak , my dad is terminal with head & neck cancer , its so destressing to watch , my dad has massive hole in side of his face , he has lost his nose right at start 1yr ago , eating is soft food but many liquids through a straw but as hole is right through his cheek and large everything comes back out causing prolems with ruining his dressing , we go to hospice dr on tues not sure if tube feed may be needed soon , im with him alday everyday its tearing me up and so scared of next coming weeks . My thoughts are with you .

Diane 5 years ago

Edited by Diane 5 years ago

My dad passed away on Wednesday evening..head and neck cancer has got to be the cruellest form of this disease. My poor dad had a massive bleed from his tumour on Monday morning which he never really recovered from.By the Wednesday he could not take any oral fluids at all as his mouth lips and tongue were so swollen. The hospice nurse told us that my dad possibly only had a couple of days but we didn't get that long.Thankfully he passed away very peacefully at home. I cannot thank Marie curie enough. The support the night time sitters gave was invaluable.RIP my amazing cancer fighting dad x

My thoughts are with you and your dad x