Dad is terminal with only months left and I'm struggling

Hi all,

Don't really know where to start and it's a bit of a doozy so apologies for the long post.

My dad is suffering from terminal laryngeal cancer above his trachea. Treatment has failed and we've been told he only has months left. This is the third different primary cancer he's had, starting back in 2013. 

He first had cancer and surgery in 2013 in his jaw and upper throat, and got the all clear after a tough 6months recovery and treatment.  Fast forward to 5 years to 2018, shortly after his 'all clear' cancer free 5 year goal we found out it had come back in his tongue. He recovered from that after a shorter treatment period.

Flash forward to April 2023, where he was in hospital for a hernia and following up with trouble breathing. We thought maybe he got covid from the ward but got the news of a growth was back above his trachea.

it was a complete gut punch. He went through 31 rounds of radiation as surgery wasn't possible and he isn't strong enough for chemo. He was given a tracheostomy and Stomach rig right away as his breathing deteriorated and it became impossible to eat.

He completed treatment in July and we felt positive. Doctors said it looked good. But last few clinics have shown not only was it still there, but last visit showed it had grown about 6x in size. It's impossible to operate and if it wasn't for the tracheostomy we have been told he wouldn't be alive right now as its completely blocked his airway (the tumor is above thankfully so the tracheostomy is protected).

They threw around a lot of Bleak words, and the gist of it is we're looking at months. Feels like fighting a huge battle only to come out the loser.

I just don't know how to cope. I've been his primary carer each time he's gone through treatment, and this time it's the same. I've been attending each clinic and just seeing the tumor get worse is horrible. I was hoping he would have managed to fight this a third time, and getting the news we're looking at months feels impossible to compute. We had a holiday planned that was cancelled 3 times and now he (fairly) has no interest in going on. He can't eat or speak. Losing weight consistently and is just a shell of who he was. It feels like this 10 year journey of slowly watching the dad I knew fade away to the point I can't even remember how he was before he got sick, it's just been so constant in our lives.

I'm only 29 and it just feels so unfair that I'm losing my dad. I want to scream and cry but I feel like I have to keep a brave face on.

I have siblings but they've been totally uninvolved throughout. They've mentioned previously they can't handle it but I just want to yell that I can't either but I also can't just leave him and be uninvolved, I know I'm choosing to look after him but it makes me so angry that they're so apathetic to it all.

Friends I've had for years have been out of contact, I feel like I can't talk to them as they don't understand and change subject if I try to talk about it so I just feel very isolated.

Hospice has been wonderful and his care team is very kind but I just don't know how to cope. I just feel completely listless. I just want to sleep and turn off and struggle to feel any motivation, but also feel that I can't shut down as I'm essentially my dads only contact as of now, and deal with all of the doctors and nurses etc. It's just a lot.

Sorry for the ramble but just hoping for some comforting words or any advice. I feel like I'm in a state of grief but he hasn't died yet, if you've gone through similar-how did you cope? I'm so close with my dad and I don't know how I'm going to get through this.

I'm sorry for anyone who has reason to be on this forum and appreciate any kind words of advice.

  • Hello DoodleBug01, 

    I am so sorry to hear about your dad. He has been through a lot and 29 is a very young age to lose your dad. It's a shame your siblings have not been more involved - you must be feeling rather isolated with it all and feeling like you are carrying it all on your shoulders. Sometimes friends don't really know what to say and it must be really hard for you to feel that they don't seem really interested or are trying to avoid the subject. This is why coming to this forum can be helpful - here you will meet others who will be empathetic and who will understand what you are going through because they have experienced a similar situation themselves before. So many members of our community have mentioned being in this state of anticipatory grief and I hope that they will be along to share their experience with you. 

    I thought I would also share with you our information for Family, Friends and Caregivers which will give you tips to help you support your dad during this difficult time without forgetting - which can indeed be easily done - to take care of yourself. 

    Best wishes to you and your dad, 

    Lucie, Cancer Chat Moderator

  • Doodlebug. Iam so very sorry. You are so young to have all of this on your shoulders. Anticipatory grief is, in a way, part of your body's defence system, starting to work out what your life will be like when the person you love is gone and to begin the grieving process.  You sound exhausted, can the carers cover for you so you can get out for a walk or get some sleep? 

  • You have all been through so much and I’m so sorry to hear that the fight your dad has been through feels like you have lost.

    My dad in 2018 found out he had a large neuroendocrine tumour in his lung and went through the treatments causing lots of discomfort, damage to his oesophageal tract. It caused a whole array of emotions and stress, dealing with treatment days and seeing the damage from the treatments even though it’s for good reasons. Luckily for him the treatment was successful.

    However at the very same time a friend I work with in the office was loosing her husband to lung cancer and he fought for 18 months before he passed away. I did let her talk and I listened but She didn’t know we were also fighting cancer and I felt it was difficult to bring it up especially when dad was responding well to treatment and I knew her husband was terminally ill. I just didn’t know how to say it.

    We did start talking about dads cancer while her husband was poorly, someone had mentioned to her about my dad. She asked why I hadn’t mentioned it and I told her I found it difficult but we then helped each other through it. Then her husband passed and she said really I was the only one out of everyone at work who spoke to her about it. It is sad but it’s hard. You do need to talk it’s so important. I would say they don’t want to upset you but it’s good to let it out.

    She was understanding that I felt bad for her but you can’t help what cards you’ve been dealt. There are some success stories, dads cancer story does continue but I wanted to share my experience with you for a different perspective, im sorry if it’s not really what you want to hear though x

  • How are you? 

    just came across your post and wanted to ask how you are

  • Hi Julianne,

    Thanks for checking in. It's been a long week and lots of contact with hospice and palliative care doctors, dad also opted to sign a DNR which was tough, I understand obviously but it makes it so much more imminent if that makes sense. Just trying to waffle along really

  • Hi Cripes, Thanks for your message. Only reading all these now as its been a long week and honestly haven't had much energy to check my emails. I think that is a big part of it- it's been going on so long but we always pulled through so now it feels like we've hit the hurdle we can't pass and it's hitting hard. Dad also chose to sign a DNR and has has some tough conversations with palliative care doctors so just overall been a mentally draining week.

    I'm just not sure how to reconcile what I know is happening with everything if that makes sense. I know it's coming but can't figure out what to even begin to do do about it and process things.

  • Thanks Lucie, it helped to get some things off my chest and just I guess put it into words. I'll have a look at those links, reading other people's journeys helps to feel less like I'm going off the deep end, even though it saddens me to see so many similar stories. 

  • I understand its hard to talk about with some people, and the topic itself is hard enough as is, let alone finding how to bring it up in conversation.  I'm glad your dad is doing well and his treatment was successful and I hope he stays healthy and well 

  • It is a hard conversation, my husband has a RESPECT plan  (not a DNR) but he (or me if he is not well enough) still gets the "DNR" discussion from doctors every time he lands in the hospital. Rember that a DNR does not mean no active treatment, it does not even mean no intensive care, it just means that if his heart stops, they will not attempt artificial resuscitation ( and, despite what you may see on films and TV, resuscitation doesn't always, or indeed usually, work even in patients without a terminal diagnosis.

    And getting your head around it all is so tough x

  • I hope your siblings will be more supportive also. it's tough on everyone.