Dad diagnosed 4 weeks ago

Hello Alice

I am sorry to hear about your dad.  Very frightening for you both.  It is so lovely though  that your dad has picked up and is eating.  The little trips you describe will be what you remember with great happiness in years to come.

your Macmillan Nurse will help you all the way so talk to her.  She can signpost you to all the help out there.  It is lovely of you to move in with your dad and make memories but do not give up your Bristol flat and life . A few short months means that - sadly but this could be your summer of fun - one to remember always.

The success of the stent and absence of infection seems to govern life expectancy. When your dad stops eating at all and/ or gets an infection requiring hospitalisation you will know it is his time after that it is often a rapid decline. A few weeks then. 

on a practical level when my husband had a similar diagnosis to your dad we organised his administrative life and his will and he spoke of his funeral etc.  maybe your dad might not want that but it made things easy for me after his death. Equally talking of hospice care or nursing care at home when the time comes would be useful. Financially your dad can claim full attendance allowance which is about £90 weekly and it is granted instantly via a form his doctor completes. We had a great time spending that on special treats.

For the  moment though just be there and chat and take lots of photos.  My husband greatly enjoyed telling me all about when he was an apprentice when he was a boy and his stories filled his dreams.  

your dad is so lucky to have you there.  Get some support for yourself  Alice to help you through this and the months to come.  

thinking of you and your  dad.  

sending love

Janey

Hello Janey,

Thank you for your message and brilliant advice, it’s so kind of you and has bought me a lot of comfort. Dad’s MacMillan Nurse is back from her holiday this week so I will definitely talk to her about support, and take all of your advice on board. I hope you have good support around you too.

The stent didn’t seem to be working initially, but over the last week especially things have improved a lot which we’re so grateful for and did not expect after weeks of persistent deterioration. We’ve been sorting out his wishes, like a will and funeral plans, I love what you said about this being a summer of fun too. I’m trying to plan different things I know he will enjoy, but will not tire him out too much. It really makes me cherish every minute with him. Like your husband he has been enjoying chatting about when he was a boy.

Thank you again for your kindness. Sending hugs and best wishes. 

Alice

My Mother had cholangiocarcinoma. Your Dad is blessed to have you. Make the most of every day with him. Every day with him is a blessing. Sending love. Thinking of you and your Dad. 

Thank you very much. You’re so right - everyday is such a blessing isn’t it. Trying to make the most out of the time while he feels well enough. Sending love and best wishes to you. 

Hi Alice,

My 80 year old Dad was diagnosed with prostate cancer in January, we were then told he had two nodules in his lungs in March.  Then on 17th June he was admitted to A&E, spent 5 days there, and was diagnosed with bile duct cancer, another primary tumour to match the one in his prostate.  It looks like it may have spread to his stomach but we will find out this Friday (1st July).

I had to reach out to you as I live in Berkshire and have stayed with my parents for the last 2 weeks, so I know how you are feeling.  My Dad is still able to walk so we have been out every day for an hour's walk, plus I've been trying to work as well as support my Mum.  It's been exhausting but I have enjoyed my time with them and wouldn't have it any other way.  I loved the comment about "a summer of fun" and that is how my Dad and I are trying to live each day.  

I really hope that your Dad continues to improve.  Just wanted to send you some love and let you know that you're not alone.

Love Juliet

Hi Juliet,

Thank you for your lovely message and I’m so sorry to hear about your dad. I hope Friday goes ok and the cancer hasn’t spread to his stomach. 

It is exhausting working and trying to manage everything isn’t it. I’m trying not to overthink and to cherish every bit of time we have together. Holding onto the summer of fun thoughts as much as possible. Dad seems so much better than he was. 

How long do you think you’ll stay with your parents for? I wondered whether to go back to Bristol for a few days as dad’s feeling so much better at the moment, but I’m dreading leaving him so I think I’ll see how things go over the next few weeks. 

I wish you all the best for Friday, my thoughts are with you.

Love Alice 

Hi Alice,

I hope that you are coping ok and are still enjoying your summer of fun with your Dad.

We’ve been on a bit of a rollercoaster since I last wrote to you. Dad’s cancer has spread from his bile duct to his duodenum, he had a stent fitted and within a couple of weeks the jaundice had gone and he was eating much better. He started chemotherapy 4 weeks ago and is coping really well with it with no side effects other than feeling really tired. 

I have spent the majority of the last couple of months up North with my parents, working while taking Dad to chemo, and trying to enjoy the time we had together with walks, meals and coffees out, and glasses of wine in the sunshine!

I’m now back home for a few weeks as Dad is doing so well and even back to playing a bit of golf, and I felt that I needed to be back with my husband and children, and to go into the office to see my work colleagues, for my own mental health really. Did you go back to Bristol for a break? I hope that you have had some time to yourself as it really is exhausting, and your own health is important too.

Hoping that you and your Dad are doing ok, and sending big hugs to you.

Love Juliet

Hi Juliet,

It’s great to hear from you and I’m so pleased your dad is coping well with chemo. That’s amazing news that he’s playing golf again and you’re back with your husband and children for a break. So important for your mental health. I managed to get back to Bristol for a week a few months ago when dad was doing particularly well - it was such a nice reset for me.

Unfortunately my lovely dad passed away yesterday which, despite the short prognosis he was given in May, was still a huge shock as he’d been doing so well. It was a rapid decline over 2 days after 4 months of him being pretty much symptom free (mainly tiredness) and us spending as much time together as we could. He had a bit of a bucklist that we worked through every weekend. We also had film nights and some lovely long conversations about his childhood and different memories we shared. 

I’ve been living in Nottingham with him since his diagnosis in May and I feel so lucky that he was able to do so much with me before the cancer really took hold. I’ll always cherish that. Not entirely sure what happened in the final two days as he suddenly had onset of chronic abdominal pain and sickness, then it just overcame him. I’m grateful he wasn’t in pain for too long. Our Macmillan Nurse and everyone involved in his care over the last few days especially has been amazing. 

I’m going to take some compassionate leave next week and sort different things out. I’m devastated but holding it together as there’s so much to do. I think when there isn’t so much to focus on as a distraction it will really hit me.

Sending you and your dad hugs and all the very best. It makes me so happy he’s doing well with chemo. You take care of yourself too and enjoy the time back with your husband and children xx 

Hi Alice,

I am so sorry to hear about your lovely Dad passing yesterday. My heart reallly goes out to you as I feel that our journeys have been so similar, and we both wanted to share the summer with our Dads.

I appreciate that there is a lot to do and that it will be a distraction for you to take your mind off everything. But please do take some time for yourself, to reflect and to think about your Dad and the last few months that you had together. And look after your mental health as it is far too easy to bury your head and then burn yourself out.

Take care of yourself. Sending you a massive hug. Juliet xxx