Df newly diagnosed with stage 4 cancer and I don't know what to do about work.

[Totallybannanas]

He was diagnosed 5 weeks ago with stage 4 oesophageal cancer, he was admitted to hospital twice during this time as he couldn't eat or drink and had to have a stent fitted. As you can imagine it was a very stressful and frightening time, and lots of things to process. My dad was very malnourished when he left the hospital and very frail. I have been off work sick for 3 weeks to care for him, as he lives alone, I've nursed him better ensuring he was eating the right meals and taking medication, as well as offering emotional support. It's been really tough for us both and although he is physically better he struggling mentally and emotionally. He seems confused and anxious, and seems to have caught up with his 80 years of age. My sick note runs out this week and I'm anxious about going back, anxious about leaving him and not being available. We don't know his prognosis yet, but we have another oncology appointment in 2 weeks. The nurse did tell me it was an aggressive cancers, and normally we are looking at months with type of cancer. I can't decide whether to go back to work or not? He definitely isn't in deaths door yet, but I know this cancer can change quickly and I'm worried about going back to work then having to take time off again. Equally I'm worried about taking time off, especially as he is in a better place right now and still mobile, and I know things will get worse. Can anyone help to advise? I work in a school, so I have 7 week term to get through before the holidays.

I wouldn’t usually advocate sick leave but you won’t get this time off. A sick note that takes you to the end of term will allow the school to bring in a substitute?
I think your alternative is going to the doctor to say he can’t be cared for at home and arrangements need to be urgently made for long term hospice care? If his prognosis is very poor that can sometimes be facilitated.

Or there’s dependents/carers leave which would be unpaid? Could you cope financially?

At the minute he is mobile, eating and he can do things, he just gets tired. He was obviously, very poorly the last week's but I'm trying to withdraw a little and give him confidence that he can do things himself still, and he has to keep on living. Part of me doesn't want to go back so I can spend time with him, if I knew we were looking at 3 months say then I wouldn't go back this side of term. But it's the unknown, and not knowing how much quality time we will have, as well as the worry of him being in his own. If I knew the prognosis I could plan better. Although I've been off for 3 weeks to care for him, I also need time to recharge myself and to process everything.

It's so difficult when you don't know the prognosis. As you say, you literally don't know what time you have. Can you perhaps apply for unpaid leave to take you through to the holidays? Are there no other family members that could do anything at all to help? Might be worth speaking to the GP to see what help might be available.

I'm sure it must be very overwhelming.

I'm sorry you're dealing with this.

What I would say about prognosis is that it is an educated guessing game, so I would be hesitant to delay quality time even if they did commit to an estimated time frame. With my mum she initially seemed like she might have a decent amount of time left, and then within weeks she had significantly deteriorated and had died not long after.

Financially, can you afford to stay off? We all need to pay the bills but your family is more important than work. Personally I am happy to "advocate" for sick leave in situations such as this.

I wouldn't go back until you've had the next appointment. Would you even be able to concentrate? You need to look after yourself as well here.

If you can afford to stay off financially then I’d stay off and spend this precious time with him, reassess the situation in the summer break. I also make the time to look after yourself so you don’t burn out.

Are you getting support from macmillan/ your local hospice? They can help advise and support in many ways.

My dad was given months and lasted three weeks. He had lung cancer.

Screw work. Spend the time with him. You'll never regret it. You'll never get this time back.

I was in a very stressful situation (teacher). My doctor signed me off sick with stress each fortnight until the last week of summer term which took me nearly to the six months full sick pay limit.

I then was 'signed fit for gradual re-integration' for the last week of term, which ended up being three non-consecutive days. This took me off 'sick leave' and as a result I was paid full wages until September, when I was signed off again - with six months of full salary ahead of me.

Sometimes you simply have to do what is best for you and your family. xx

Hello,

I am sorry to hear about your father’s diagnosis.

My dad (62) was diagnosed with oesophageal cancer in February after losing a lot of weight in a short time due to not being able to swallow. He had a stent fitted and luckily his body did not reject it. He was given 6 months to live at this time. He will receive no chemo or radiotherapy due to the risk of reducing his quality of life.

Due to other issues with my dad he is unable to live on his own so is currently living in the hospital until the council awards him funding to move into a care home.

Until such time I have taken time off my work as he is a flight risk from the hospital. I work in a dangerous environment and the stress of leaving my dad behind for weeks at a time has made me medically unfit for work.

Thankfully, dad bounced back after his stent and is currently living a healthy and happy life. This has probably helped with having me around everyday from morning to evening time. There are no other family members to assist with care for my dad.

The situation isn’t ideal but dad needs me. My only hope is that we can get him a move to somewhere a bit more comfortable before he goes downhill.

My only comment would be is to do what is right for you and your dad.

Thank you everyone, I've taken some more time off sick. However, dad is struggling mentally and is very emotionally dependent on me. He's not living, he is just waiting to die. I feel he can do more then he chooses, and this is becoming frustrating for me personally. It's also very soul destroying, as I know he will not get better but he is better then he was and has more life in him yet. If I didn't go down daily, he wouldn't care for himself. He would cook or leave the house. He is still mobile and can drive, so he can do it. He's just in this dark place right now and it's dragging me down with him 😔

My Mum was told she had about 3-4 months left. She died 5 1/2 weeks later. She deteriorated very rapidly in the last 2 weeks. I'd say book compassionate leave and stay home and share time together. You'll never get this time again. You won't be able to concentrate at work anyway. Put things on credit card if need be. Pay it off after he's died.

I think this too, if you can afford it. Could you ask for extended leave?

If he’s mobile, get a social care assessment and go back to work. You can still visit. Are you nearby? Have you got children of your own to look after? It’s too much for you to carry alone.

He could live for a few more months like this. You’ll know when you need to be off work again.

I'm 10 mins away. I have older children who work and have college. I have a carer come in in the morning, but they stay 10 mins if that. What will happen if I do a social care assessment? Dad has expressed he doesn't want to go in a home but on the hand he says he wants to be somewhere, where they look after him and cook his meals. He wants to go the hospice and feel sorry for himself, I think. But he's not there yet.

Can the hospice offer other support while he’s at home? Many offer therapies/ griups etc.

He might be able to get more visits a day to help him with meals and what ever else he needs. Takes some weight off you. He won’t be self funding if he’s got less than £23000 in the bank. Ring your local adult care team and ask them about it all.

My mum had terminal cancer. I spoke with HR who allowed 'flexibility'. As long as I let them know in the morning I could stay with mum, do half days or work a full day. At the very end when she was in a hospice I was given this time off no questions asked and no sick note needed.
My personal advice...... don't worry about work. Your dad is more important. Also, a prognosis can be shorter or longer. Mum loved longer than expected but a work mates husband was given months and didn't make the weekend.

Take the time off you need. If your dad wants to go in tge hospice perhaps you go and visit to talk with somebody there. They are wonderful places, even if he just goes for a few weeks for respite.

My advice would be to work out what it is you want to do, then find a way to make it work. I know it's an impossibly hideous situation, I was there this time last year, when my mum was diagnosed with an untreatable brain tumour, straight to palliative care, at home.
I moved in to care for her and support dad, working from their home in my fully remote role (this did make it much easier to manage, I understand it's not that easy for many people.) Hospice places are so in demand, if we hadn't kept mum at home, the only other alternative would've been a hospital, and neither she not us wanted that. She was with us for 6 weeks after diagnosis.
We had support from local hospice, nursing teams, Macmillan and, crucially, Marie Curie who did overnight care so we could sleep.
Hope you find a way through - get support, make a plan, and try to look after yourself too. Sending best wishes.

You cannot do this all by yourself whether you’re working or not so I would have him assessed for carers to come in daily to support him. You could then spend time with him as a visitor and overseeing his care rather than being bogged down with it.