Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Stage 4 and no plan for my mum yet

buttercup01
Posted by

Hi , sorry to be so late replying.

Personally Id've thought it was the oncologist who was responsible for the meds n not the GP, but I don't know what the " etiquette" is.

Your mum needs to know so she's well enough for the appointment on 2 Jan tho.

Can she or your dad ring her cancer nurse about it?

As u say, the GP n oncologist need to liaise with each other.

Extra sorry to answer this just before the weekend. Been v busy today.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hi All,

I think it is a bit complicated.  When my oedema was discovered when scanning my cancer the report indicated it was of unknown origin, ie not definitely related to my cancer, so the oncologist referred it back to my GP.  I consulted my GP who said he would write to my consultant as the protocol is usually that if you find it you investigate it.  It is now wait and watch with the oedema.

However, I was also prescribed some painkillers by my oncologist for tumour pain but was advised I would need to consult with my GP and ask him to write a repeat prescription for them to be renewed.  My cancer meds are handed to me by my Oncologist but this may be because I am on a trial.

I do agree that the the oncologist records his notes immediately after my consultation but they will then go to admin after his clinic ends (which will be after admin has left).  They will then have to type up all the notes and send them to the GP.  I don't know if this is done electronically but suspect that it takes a week or so however it occurs.  The GP will therefore not have seen your mum's notes and you should definitely fight your corner until they have at least received the notes.

It does get very confusing and having an expert such as a cancer nurse specialist or a Macmillan on your side makes things so much easier.

I hope that things are going well.

Gragon xx

buttercup01
Posted by

Well said

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hi ,

I was just wondering how you and your family and especially your mum have been over Xmas and the New Year.  I know that your mum has another appointment scheduled for the 3rd of January and hope that she is well enough to cope with that this time.

If it is not inappropriate I would like to wish you all the best for this year.

love and hugs,

Gragon xx

scotabroad
Posted by

Hi Gragon

Thanks for getting in touch it means a lot

I arrived back in UK on 27th and have been trying to help my parents with practicality of it all - Walk in shower, Medicine docket, comfy chair and also solicitor to set up my dad as power of attorney as he does not have a bank account -all through my mums.

Also read the full report from hospital which was hard to read - 8 tumors spread across both hemispheres with the largest 4x3 and 10x10 on 1 kidney and 4x3 on the other.

Her balance and mobility have went down hill fast and she was experiencing double vision yesterday which I got my dad to inform the Cancer nurse about.

Also hospital have phoned and postponed her appointment until the 9th now which I am not happy about and 2 days ago she fell off the toilet at home and had to lay their for an hour until my dad came back from work and phoned me to help get her up but we were unable to so had to phone an ambulance. They came quickly and took her in for an assessment but released her 5 hours later.

I am hoping they will start some radiotherapy soon after consultation for the Brain Tumours to help alleviate the symptoms from them, or at least try to see if it helps.

Yesterday was a good day as she was talking although slurred and had her family around her.

Starting to get our head around the fragmented way the NHS works with Dr/District Nurse, Oncologist team, macmillans for practical help and home care, occupational health.

Thank agian for getting in touch and wish you all the best for 202 as well

Scotabroad xx

buttercup01
Posted by

Hi

Sorry to hear your mum's getting more side effects from her brain tumour and that she fell off the toilet recently. What a shame they've postponed her appointment. Can u contact her CNS and tell them about the fall, in case they can keep to the original date?

Everyone should b back to work tomorrow, so that'll make it easier to contact ppl.

Good luck with it all,

Sue x

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
scotabroad
Posted by

Hi Sue

Yes its breaking our hearts to see her like this. Yes we contacted the CNS regarding the fall and thats when they changed it to the 9th as they had postponed it further.

Yes hoping that triggers something tomorrow as it as been a bad time to come across and help with the holidays but I can stay until 6th to help out with our things and my mums sisters will be here for her appointment to help my parents with questions at the consultation.

My mum had knocked back the home care coming in due to the costs (Peanuts) but with the fall we are bypassing her wishes as my dad needs the help - 

Thanks again Sue for listening as well

Regards

scotabroad
Posted by

Hi All

Unfortunately we had to ask for help yesterday and my mum has been admitted into a hospice in Aberdeen.

Been a horrendous week where she has went downhill rapidly and she fell twice - more slid off the toilet and chair as she has no physical strength left and we had to phone an ambulance to help get her off the floor as she overweight and even with 3 of us we could not lift her.

She wanted to speak to the practice nurse before she would go into care  as she wanted to complain about the oncologists cancelling all her appointments without even a word from them and the nurse and staff at hospice agreed at their cowardice of giving my mum false hope and getting other staff to pass on the bad news - this has lead to a decline in her mental health and I also feel they should have been completely honest from the start.

On a plus though she is having a better day with the trained professional care around her and my dad is now able to drop his shoulders and be a husband rather than a carer again so I am grateful for that.

I have to depart back to Norway this evening for a short period but even so I think my mum and myself said goodbye to each other and have been in the Airport toilets in bits and need the love of my family for a period of time to get my strength back to help support my dad and family again.

So sad to see my loving, independent, crazy full of life and stubborn mother slip away like this where her body is stopping but her mind is still very sharp.

buttercup01
Posted by

Dear , I hope your journey back home goes OK. How sad to be leaving your mum in a hospice, tho she will get better care there n as u say your dad can go back to being a husband rather than a carer 

Bless u all xx 

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hi ,

I'm really sorry to hear about your mum.  It is a horrible situation to be in and especially when you are not able to be there as much as you would like to be, for your mum or your dad.

It sounds like the hospice is exactly the right place for your mum at this time and she will get the care and pain relief that she deserves.

Hopefully you are now back in Norway with your family around you and can take some time for yourself.  Relax and take care of yourself.

love and hugs,

Gragon xx

Jo300
Posted by

Hi Scotabroad

So sorry to read your latest updates. Hope you’re home now getting the support and comfort you need. 

Take care. 

Jo
x