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How best to support my parents

robbo1908
Posted by

Hi,  my dad was recently diagnosed with stage 4. bowel cancer that has spread to his liver.  Found out last week that there is no treatment available so only palliative care.  Its going to take a couple of weeks for the Macmillan nurse to be  in touch.  In the meantime has anyone any advice on how best to support my parents process this news - I’m afraid to go to their home due to the risk of Coronavirus.  Thanks so much x

Thehighlander
Posted by

Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your dad's diagnosis.

A cancer diagnosis like this can bring a lot of confusion, stress and many questions but I found talking with people who were on the same type of journey helped a lot so can I direct you to our supportive Carers only and Supporting someone with incurable cancer groups as you will connect with others supporting family through their cancer journey.

Posting in this group will give you the opportunity to talk with people who know exactly what you are all dealing with at the moment. 

Follow the links I've created, join the groups, then hit ‘start a discussion’ and you are ready to go.

You could then copy and paste the information from this first post into your new discussion or you can just join in with existing ‘Discussions’ by clicking on 'reply'.

Can I also highlight our various Macmillan Support Line Services on 0808 808 00 00. This service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link but you may find the service very busy at the moment.

All the very best.

Click to see how to add some details to your profile

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

robbo1908
Posted by

Thank you so much. Feeling rather overwhelmed st the minute so I really appreciate your reply.

Tinky28
Posted by

I’m in the same situation as you so my heart goes out to you , my dad has bowel cancer that has spread to his liver. They discharged him from hospital on a fastrack because his wishes are to be at home.

weve had a difficult today today dad hallucinating , very confused and disorientated. Seeing things that aren’t there talking about people from years ago. The doctor thinks it’s a medication he started the other day. He was searching the bed earlier, I asked him what he was looking for and he said a sausage!? 
is your dad on any medication ?

robbo1908
Posted by

Sounds like you have had a tough day - although I’m sure  the sausage comment raised a smile!  

No, my dad is not on any medication yet.  He only heard last Thursday from the hospital that there is no treatment available.  He was in reasonable form until Monday when he heard mum talking to the GP.  The GP made a comment that there  are many forms of bowel cancer and in some cases life expectancy is 4-6 months.  He picked up on this - even though she wasn’t referring specifically to him as she had not received any details from the hospital.  Still waiting for the MacMillan nurse to get in touch so they are very much adrift at the minute and I don’t know how best to help them. 

Hope they are able to adjust your dad’s medication.   

Tinky28
Posted by

We waited ages for the Macmillan team to contact us. Hospital didn’t refer until dad was coming home on a fastrack.my dad had a really bad night, hallucinating really agitated quite nasty. Had to call out the district nurses , I’ve been up all night with no sleep. He doesn’t remember anything about it which is good. He was kicking and pushing me it was horrible, I’m hoping it was a reaction to some medication and not a rapid deteriation. 

robbo1908
Posted by

It sounds as if your dad is further along on this awful journey than mine is.  My dad has a long-standing neurological condition and he has a lot of pain from this so I don’t know how much extra if any at the minute is down to the cancer.  Am hoping the Macmillan nurse will be able to help with the emotional side of things. He has been fighting the other condition for so long I fear that this might just make him give  up altogether.  

Thank you so much for offering to talk more I’ll try to find you on fb although it doesn’t always behave well on my phone!  Hope you get some rest and your dad settles x 

Tinky28
Posted by

Yeh he is. He only found out on the 9th April, so it’s all been a bit of a blur to be honest. He spent two weeks in Doncaster hospital. He’s on antibiotics for suspected water infection which would have been causing all the hallucinations etc. xxx

robbo1908
Posted by

Hope your dad is more settled and you are getting some rest.  Mine is getting much more back pain - don’t know if this is due to his original condition or the cancer.  He is a bit brighter at the minute though which is good.  He has only been to hospital for ct scan and then for a biopsy so it seems to be down to his gp to sort out medication at the minute.  Typical it happens on a bank holiday weekend.

Tinky28
Posted by

Hope your dad gets his pain sorted. Dad could never have a biopsy they deemed him not strong enough. Originally the plan was a biopsy and possible stoma operation.  Maybe ring the gp first thing tomorrow when they open. You can always request a home visit too. Let me know how you get on xx

robbo1908
Posted by

Our out of hours service isn’t great so probably be Tuesday when our regular gp opens.  Nothing is ever straightforward  Dad never got any treatment options just palliative care - even though that hasn’t actually begun yet.  Hoping it all starts to get moving this coming week x

Tinky28
Posted by

Whereabouts are you based? Dad didn’t once he was in hospital they just kept telling him there’s nothing they can do, he’s too weak and the cancer is too advanced. They basically sent him home on a fastrack as that’s his wishes as if he went into a nursing home or hospice we wouldn’t be able to visit. Keep pushing, our palliative care nurse hasn’t been great she didn’t even want to visit although she is doing now.
lone thing I’ve learnt since this all started in April is you have to keep on at people and really take charge of things. I write down whenever someone rings or comes out, I have a folder full but it helps me as my mind would never remember all the people I’ve spoke to.xx

robbo1908
Posted by

Hi, we’re in N Ireland.  Thanks for the advice,  If there is no progress tomorrow will have to start pushing. Up til now we’ve been relying on ‘the system’ but as you say there isn’t time for that x