Father heading towards end of a long journey

Firstly I want to say how great it is to have this. Wish it had been about around 10 years ago when it all started.

We’ve had various diagnosis along the way from prostate to lung, various new sites and finally at Christmas bowel cancer.

Throughout it all my Dad has been so brave and I’m so proud of him. There is so much of him in me - stubborn and putting on a brave face. Although he’s from the older generation of getting on with it and not bothering anyone. Whereas I’m definitely emotional like my Mum.

He proved that you need to live your life to the full and enjoy opportunities while you can. I’ve certainly done that but I’m back as I always planned to be to help out.

The deteriation in one year has been varying from sudden with recovery to sudden and gradually more.

We’re in the last stages and information has been a real help to me. Not from anywhere as that can become scary but from a few reputable sites.

I’ve found hospitals Drs to be informative but also as so many unknowns have been involved quite vague. I know life isn’t always straightforward but guidance helps. One nurse was great “step by step”.

Today I spoke to the doctor frankly, don’t know if it was because I was on the phone but it felt easier to talk openly and fairly bluntly.

We’re in the final stages maybe weeks but who knows what our maker has in plan.

I know that I’ve helped and supported him along the way. I know my Mum couldn’t do anymore either.

Last year I volunteered at an open evening with some learners and looked around. I talked openly about it, that is where I want him to go when it gets to much at home. That is up to him and the care we have in place. We have fab Sue Ryder nurses who visit at home, Macmillan nurses and a private carer plus family.

I now feel informed and that makes me calm but it took a lot of enquires to get here.

Good luck to everyone!

Hi H,

Thank you so much for your post.

This must be an incredibly difficult time for you, I’m so pleased you’ve found our Online Community and have shared your story with us, thank you.

I completely understand that the unknowns can be frustrating and difficult, being as informed as you can be can definitely help, like you say. It sounds like you’ve been an incredible support to your father, and I’m also glad that you also have the support of nurses and your dad’s carer.

You might like to have a look around the community and read some of the stories of others who are faced with losing a parent and understand what you are going through.

You might be interested in reading this conversation for example: https://support.sueryder.org/community/dealing-diagnosis/mum-diagnosed-terminal-cancer

Keep in touch, we’re thinking of you and your family.

Kate

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Hi H
Its good that you feel able to share your feelings, it is incredibly difficult and this is a great place to get support. My dad died primarily from Prostate cancer, but had bowel, bone, skin cancers as well (not to mention being deaf, arthritic, partially blind and generally cantankerous!!!)Sue Ryder helped him at one of their hospices until having to move back to hospital for blood transfusions and the like. He died peacefully. I am proud to say that my very active sons run half marathons, do tough mudder challenges and the like for Prostate cancer. Keep looking at this site as people will always be there for you, take care of yourself, be kind to yourself. Take today as it is because there is always tomorrow.

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Hi Kate, the first day I found the site I had a good look around. I’m sure I’ll find more interesting and useful stuff.

This week has been a hard one, started off well and deteriorated on Wednesday night. He was so ill and frail. Although he doesn’t remember much, which is good for him!

I called everyone I could think of on Thursday morning. I feel more supported again. I got the Macmillan nurse out and she was so helpful looking through his drugs and I know she has spoken to the Dr. I felt I had to have words with the Dr about it all and on Thursday I was so tired I probably didn’t explain it fully but by Friday it was heard loud and clear and as a result he has gone and educated himself. I’m hoping that the delay in paperwork hasn’t affected my Dad too much.

We had a Marie Curie nurse one night after a really bad night. She was reassuring before we went to sleep and showed us how to help Dad. The next day I went and spoke to her about things and she listened and gave me clear help. Fantastic!

Most of the time Mum and Dad have sorted the cancer treatment and help all themselves but age and worry gets in the way now. They taught me to be inquisitive and ask questions so I do. I have now started to pick up the phone to ask for help.

My work have been fantastic in my brief moments of letting go with my boss, the support they have put in place and time to be with my family.

My folks wanted me to have a break away so I did for a week with my husband and I’m so glad I did. It has helped me to focus on what is important and to address important things.

Our journey’s destination is closer maybe weeks but who knows I feel maybe more like a week and a bit. The human body is amazing and sometimes cruel. We wouldn’t put our animals through this!

I think if someone asked where to start I would say Macmillan and your Dr. Although it does depend on your relationship with your Dr. I wish I had contacted Macmillan before but then again I didn’t think I needed them so much when we had support but sometimes it is reassurance.

Pineapple has been a favourite food and watered down for a drink.

H

Thank you Jeannie!

Sorry to hear of your loss and great to hear your sons do so much.

Looks like we are heading to the hospice one day soon.

It’s a place I visited when I was younger and loved. I visited last year and volunteered for an evening and thought this is where I would love to take my Dad. Fingers crossed.

We do all support each other by being open and honest. We are not alone on our journeys even though each one is different.

Hi H,

I’m so sorry that this week has been hard for you. It’s very important like you say to reach out and get the support you need.

Looking after yourself as much as you can is very necessary at these times. I’m pleased that you are making sure you do so and also that your work has been understanding.

Thank you so much for sharing your advice with the community here. We’re all thinking of you.

Please keep in touch.

Kate

He passed away on 23rd April. He came back briefly and communicated he was uncomfortable and I got a nurse to help him with some drugs - I called them rainbows and butterflies!

It’s weird he’s gone. Feels like he is just somewhere waiting to come back. Logically I know he isn’t and we’ve started sorting things.

Today we planned the funeral with the vicar, it brought it back.

Hi H,

I’m so sorry to hear that your father passed away on the 23 April. It’s natural for things to feel strange as this is so recent. Planning the funeral must be hard, as yes it can bring things back for you. Are you getting help with this?

Keep looking after yourself. We’re here for you so please keep using this site if it helps.

Kate

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