Hi Pepper,

I've just joined the forum as I too am worried about my dad and have also been down the Googling route.

I totally understand fearing the worst but wanting to find a reason to be positive. Like your dad, my dad has no energy at all now and has lost loads of weight. We are still waiting for a diagnosis.

I too am feeling emotionally drained but trying to keep it together for my parents. I'm sorry I dont have any advice or information to offer but just wanted to send you a hug and wish you well x

Susie

Hi Susie,

Thank you for replying and sending a hug, right back to you! Although no advice or information included in our replies I find it comforting to know I'm not alone - is that selfish? I of course don't wish anyone to be in this situation.

Thoughts are with you x

You are so right about the comfort of knowing others are also going through it. I feel less alone somehow but, like you, I wouldnt wish this on anyone x

Hope you're doing ok today? I've been with dad, he's down in the dumps for sure, fed up of being tired and hasn't done well today with eating. He has got a PET scan booked for Friday though, so hoping it won't be too long until a plan is in place x

It sounds as though our dads have very similar struggles.

My dad is so frustrated with himself for feeling constantly exhausted and not being able to do anything. He forces food down but really doesn't feel hungry and I know he's not eating enough.

I'm due to speak with his doctor on Friday to see what his recent ECG and blood tests show, and we are still waiting on a radiology appointment.

I'm very up and down. I have moments where I feel fairly positive as things are moving forward with various tests etc. Then I have moments where I'm almost expecting a call from my mum to tell me he's gone! It's such an emotional rollercoaster.

I hope things go well on Friday and you are looking after yourself as well as your dad x

Hi [@Pepper50]‍ 

I just wondered how things are with you and your dad?

What did his scans show, and do you have a plan in place moving forward? 

Susie

Hi Susie

You're so kind to message me, thank you so much. Dads scans showed that he has cancer basically everywhere (liver, lung, abdomen, bones, eyes, lymph nodes and brain). Incurable and we're not sure how long he has left.

He started radiotherapy 18/08 and by the end of the next day (so after 2 10 min sessions) he was unable to walk. He's now in hospital very confused, sleepy, unable to use his right side. Scans show that it's inflammation of the brain rather than new tumours so that's something but we still don't know how long he has left with/without treatment. He told the oncologist yesterday that he would prefer to go to a hospice than home but I imagine they won't send him there if he has time left, which involves carers/hospital bed at home. My mum works full time.

It's so hard to see my strong, proud father reduced to wearing nappies and mum having to feed him. He's not a bad man, what did he do to deserve this? I'm trying to be positive and strong as I have a 9 month old baby and go back to work in a week and half after 11 months off for maternity but I really feel in a brain fog at the mo and don't know how I will cope.

How are you doing? And your dad?

Thank you so much again for reaching out, I so appreciate it xx

I am so sorry to read this...what a devastating diagnosis. It must be so hard for all of you.

Have you or your mum considered asking your employers' for compassionate leave? I dont think all companies offer it, but some do, and for me it's been such a relief to not have to worry about work as well as everything else. 

I hope you manage to sort out where your dad will stay once he leaves hospital too, and that it's something you are all happy with and he is as comfortable as possible.

Things have been very up and down with my dad.

He was admitted to hospital a few weeks ago due to extreme pain in his side, and breathlessness. They did a number of tests and he was told he has stage 4 lung cancer. It wasn't a complete surprise to be honest, and I found myself preparing for the worst as he wouldn't eat in hospital, and just wanted to sleep. He could just about walk to the toilet but was very weak and unsteady on his feet. His weight plummeted as did his blood pressure and body temperature.

He had cracked ribs and a collapsed lung which was the source of the pain. They drained the lung and pumped him full of morphine so he would at least be comfortable. He then had a bronchoscopy and a stent put in to open up his airway.

When he was discharged, the nurse gave me a bag and said they were his end of life meds. At that point, no-one had really discussed his diagnosis with us so I took him home not knowing what the next few weeks had in store.

He has astounded both my mum and me.

He is eating properly again and has gained half a stone in weight. He has weaned himself off the morphine, choosing just paracetamol for the odd twinge of pain he says he now has.

He is also doing housework and walking to the shops!

He is a completely different man from a month ago.

It's obviously wonderful, but so confusing at the same time as all the staff at the hospital seemed to think he was nearing the end. I've heard of people rallying when death is near, but this seems a bit extreme.

He's been offered chemo but is undecided if he wants to go down that route knowing how sick it could make him. He said he feels perfectly healthy at the moment.

I really don't know how to feel. I'm trying to be positive and supportive for him but also not get my hopes up. I'm just taking it one day at a time x

Wow Susie, what a rollercoaster it's been for you as well! I'm so pleased to hear your dad is doing so well at the moment, I know what you mean about confusing though, we feel like we're grieving twice, once for the man my dad was and once again when he does pass. We felt awful when we learned it was inflammation of the brain cancer rather than new tumours as we thought we'd have to go through this all again. For you, I imagine you were preparing for the worst and then are thinking you'll have to do it all over again. The rallying does seem extreme! It's great that he's so positive and well though!

Re work, my mums employers have been fantastic but she would like to go back to doing at least half days in the next couple of weeks, hopefully dad will be settled somewhere and she can then still continue to visit. I feel like I can't after having been off for so long already, and plus, I'm better when I'm busy. It just means my visits will be reduced as I'm 45 mins from the hospital and you husband works nights so I can't go when I finish work. But again, work are fab and wouldn't mind me ducking out in the day I'm sure as long as I make up the hours which I can do when baby goes to sleep.

Hi, 

I'm sorry to hear about your dad, I get what you're going through. My dad also has stage 4 cancer, he has one of the most aggressive types of cancer you can get and the hospital are giving him chemo and palliative radiotherapy (we've asked for a higher dose of radiotherapy but they're refusing to give anything other than palliative).

There is a medication which could give him much longer but it's not approved on the NHS for his type of cancer so would cost us thousands per week, and his doctor wouldn't prescribe it anyway as she says the risks of it are too high. 
 

I don't think my dad understands how bad it is, he's very positive at the moment and I don't know whether to tell him the reality, because I don't want him to get depressed and give up. 
 

Anyway, I hope you're doing okay and taking care of yourself x