SCAN RESULTS FOR MY BRAVE DAD

Hi Jo,

I have only just seen this post and wanted to wish you luck for your Dad today. 

BFN

Julie X

Maureen

Hi Jo
I just so hope things are good news and not worse . Best wishes

Thank you all for your good wishes and kind words.  Unfortunately the results were worse than expected and a shock.

I went to pick my dad up this afternoon, he had been sleepy all day and quite breathless. 

The oncologist said that it was not good news that the cancer had continued to spread even through 3 doses of the chemotherapy.  His liver has been more affected and he commented on how my dad did not have a yellow colour to his eyes or skin surprisingly.

The kidney area is being pushed up by the cancer to the prostrate which will cause further issues. 

He did advise he would speak to his colleagues at the Bobby Robson Foundation regarding any trials that may be running, however, if his liver or kidney function were a problem they would not let him take part.  My dad asked to be considered, as he said if it didn't help him it may help others.  He had a blood test to check these functions so we await those results.  They checked his oxygen level and it was 91 they said they preferred it to be 95 or over, so we need to keep an eye.

We were told that it was down to the GP and his Macmillan to care for him.  So I will be contacting both in the morning to ensure he gets everything he needs. 

He is such an amazing man so calm and dignified throughout, I really couldn't be prouder.  The oncologist continues  to say that it is not the treatment that keeps him well but his will and his positivity.

He went to bed when he got in and slept he was so tired which is quite unlike him.  While I went to my best friend's house and broke my heart, as I would never cry in front of him.

We have a follow up appointment to assess things in July but the oncologist said that at this stage he did not want him wasting one of his good days at the clinic or equally going when he is unwell. 

I really wish there was something else we could do, but it would seem unless there is a miracle trial that would be prepared to take him on, this will not be the case.

Thank you again to all you kind and brave people.

Jo x

My heart is breaking for you, your post has stirred so many memories. Mick's lovely daughter Karen sat with us shortly after we had that very same conversation with Mick's oncologist. All the while biting her lip desperate not to break down as she knew how much her Dad hated tears. I am so glad you had a friend close by to comfort you.

Karen went on to be the best ever support for me and her Dad, she spoke to him every single day telling him about how her degree course was going, her work and the hopes she had of getting married. Once her Dad went into hospital/hospice she was here every chance she got to spend time with him and to give me loads of hugs and support.

I know you are that same daughter for your parents and that will mean so much for them.

Your Dad has fortitude and wants to retain has dignity. Macmillan or your local hospice will do all they can to help him when it becomes necessary. Dad's GP will need to refer him. The hospice I work at offers so much support right through palliative care and beyond, the day centre has all sorts of classes and some very lovely treatments too and they are all free. It is also a great place to spend time in the company of others in a similar situation but with marvellous professional palliative care consultants available to help amd provide first class support.

There are so many things they can help with including claiming benefits your family could be entitled to like carers allowance, dealing with insurance companies, getting a blue badge,pain management, future wishes. .to name just a few. This support is also available from other organisations like Maggies.

In the meantime your Dad may still be offered other palliative treatments if they feel his vital organs can cope with them. There are still some options out there that can be tried to extend the time your dad has but balanced with giving him the best possible quality of life.

If I can help with any more detailed information pm me and I will do all that I can.

So many people will be offering words and phrases meant to make you feel better, the stay strong, keep positive, be brave, have courage ones, well I would just say you carry on doing just what you are and that is being a wonderful and loving daughter and all the rest will just happen naturally.

My very best wishes to you all

Xx

Mo

Edited by member 20 May 2015 at 22:30  | Reason: Not specified

I'm so sorry to see this news. To echo what others have said, mobilise the palliative care team and then just continue to be your dad's daughter, it'll be all he wants. You do have a dad in a million, a truly lovely person (we can tell by his daughter), I know for sure that he is immensely proud of you.

Spend as much time as you can doing things you all enjoy, build more happy memories, he will like that every bit as much as you all.

Hugs Jo, it's such a hard time ahead, we are here for you if you need a supportive hand or word.

With love

Allison xxx

Thank you so much to you all for your good wishes and fantastic advice.

Today I telephoned our MacMillan Nurse to update her, we have a meeting on Friday morning this week, my mum and sister will be there also.

I telephoned our G P who kindly got back to me for a telephone consultation.  I bombarded the poor man with questions on how to keep Dad as well as possible and try and prevent anything progressing into an emergency situation.

I spoke to him regarding my dads tiredness and the comment that the disease was pressing up on to dad's kidneys from the prostrate I was concerned this may cause kidney trauma again.  Whilst I was speaking to him he logged on to the hospital website and advised the blood tests taken the day before were back and unbelievably the kidney function was fine and the liver function was a little high but lower than last month and no cause for concern.  Totally bizarre, as other than this awful disease my dad is well.  Even his oncologist has given up on dad's PSA reading as it never shows a true reading and has not been above 4 since September last year so is unreliable in my dads case.

I have asked about oxygen if his breathlessness becomes an issue.  I will be speaking to our Macmillan regarding all of this and continued pain control and regular blood tests to keep an eye on his kidney and liver function.  Our Macmillan has a meeting with our doctors once a month so this should help us not having to attend rounds of doctor and hospital appointments.  I will also be asking about blood transfusions when his HB is low.

We have not had any update on any running clinical trials, although I have of course emailed our oncologist secretary and updated her on my dads health which had improved the following day of his visit and the results of the blood tests.

My sister made him a shake this morning and we will do this every day now to ensure he gets his vitamins.

My gorgeous dad came for a little walk with the dogs and had a trip to the pet shop this afternoon, he is such a trooper, pretty amazing.

Good luck to all others in similar situations.

Jo x

Morning Sweetpea. I expect Fortisip is like Ensure, which is also a milkshake type drink.

They might be handy to have as an emergency and should be available on prescription for your dad. I expect though that making the shakes is your sister's way of showing her love and she would probably be reluctant to stop.

I am so glad everyone on his health team has the time to give. It isn't always the case but it's wonderful when it works out

All the best
Sandra

Hi Jo,

Some one recently said to me in our own situation "One day at a time" and I just wanted to pass this on to you . I think it is pretty apt . 

BFN

Julie X