Kidney cancer

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

What do I do? Long read sorry

buttercup01
Posted by

Do join the Family and friends group. Sorry if I've said this already. Been awake too long n v tired.

Do what u can with your mum now n say what u want to say to her  U cannot tell how much time u have with her. The doctors cannot  tell u that either. Nobody can tbh.

I believe giving somebody an " end date", as it were, can b self- fulfilling. That's why I've never asked. But that's my personal take on cancer.

Some of your questions are best put to the helpline ( ask a nurse) rather than this group. When do you next go the Christie with your mum? The questions want asking of the docs there, who said those things to u while your mum wasn't there. Meantime the helpline may well put your mind at ease or at least calm the whirlwind down a bit. It's exhausting just reading your post so I can't really imagine how u feel !

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 ,

It is several hours since you posted so hopefully you have got some answers and maybe a bit more rest.

I'm afraid I can't answer a lot of your questions and you really need to push to get a person you can consult with at the hospital as they will have access to the file and hopefully some knowledge and understanding of the discussions.

If they cannot find the primary and have not taken a biopsy I am not clear how they know it is kidney cancer.  However, presuming that they are correct in that it is kidney cancer but they have not got a biopsy then they are unlikely to know which type of kidney cancer.  Most kidney cancers are Renal Clear Cell Carcinoma (RCC) but about 20 to 25% are different types.  Treatments can vary depending upon which type of kidney cancer it is.

Having had RT on her spine I can imagine that she will be very sore for a while but I don't know why she might not be well enough for a biopsy.  You would need the doctors to clarify this.

It is impossible for anyone to say how long your mum might have as there are always so many factors involved..  There are people all over this site who have been given weeks to live and are still here years later, my mum was in hospital but doing quite well and at her insistence we went on our holiday only for her to die on the night we got back two weeks later.  Anything the doctors say about a prognosis is just a best guess based on their personal experience.

It is a very difficult time and I know that you want facts and things to be definite but unfortunately few things are certain at the start of this process.  As you said in your post even the doctors are not yet in full agreement about what the situation is and what needs to be done.  Write your questions down so that you don't forget them but don't keep going in circles trying to remember them, find someone that you can talk to on your mum's team and make sure your mum is happy for you to talk to them and for them to talk to you.  Let them know your concerns and your questions.

Again I would suggest you contact either the Macmillan helpline or the Maggie's centre for some support and they may be able to offer you some additional advice.

How is your mum doing in all of this?

All the best,

Gragon x

Gillianh85
Posted by

Thank you for all your replies.

Yesterday nothing happened they tried to fit mum with a brace, they did this in the laying position so it really hurt her they was meant to be doing an x-ray with it on but couldn't.

Salford hospital spine unit have now said she is not a spine patient with them now because there is nothing that can be done for the spine so mum will be going to a Christie unit either Oldham or Manchester hopefully this might be a step closure to home.

I haven't thought any more about time and yesterday we really tried to stay positive and didn't have any upsetting talk mum needs us strong.

We still haven't spoke with a cancer specialist because she is not on there ward it's really annoying but understandable.

We were told yesterday the paraylised legs even after rt won't get better so how we have my mum is what we have.

Gragon
Posted by

Good Morning ,

I'm pleased to hear that you are starting to find out a bit more about the plans for your mum as any knowledge helps you to cope.

If an oncologist has been appointed to your mum's case then although you have not seen her yet you may now be able to arrange to do so.  You should be able to get a phone number for her secretary and ring up and ask when you will be able to meet her with your mum to discuss what is going on.

I hope that you get to know a bit more about what is going on soon.

love and hugs,

Gragon x

Jo300
Posted by

Hi

My heart goes out to you all with so much uncertainty. It sounds like being moved back to Christie is a positive step as far as the cancer is concerned and finding out what the next steps are to be.

In the past I came out of an appointment and realised immediately that I hadn't asked pertinent questions. We have a Macmillan unit at out hospital and I went straight there - they called my consultant and he made time to see me again quickly. Just enough for me to ask what I needed to ask and that helped enormously.

I think once you're in oncology it's much easier to navigate your questions. I have two specialist nurses who I can call or e-mail at any point in time and they'll always respond. They are my go to people for information and they'll get me in front of my oncologist (metaphorically speaking) immediately if they feel it is necessary. I've had a couple of scans / xrays done purely as a result of e-mails and attached photos without even having to have an interim oncology appointment.

As Gragon says - write down everything that you think of as you think of it and take the list with you to the next appointment - and go through it with them methodically - and write down the answers too.

If your Mum is coming home, get social services involved asap to make modifications to the house so that it is accessible to her. 

I really hope you get a clearer picture very soon.

Jo
x
Gillianh85
Posted by

It's been a few days since I've been intouch what has happened... well I'll try and explain

Mum is still waiting to be transferred to a new hospital for over a week it's not happening as yet not sure why.

We needed answers and the Macmillan team have helped.

Palliative care has come in firstly told my mum that it isn't curible I think we already guessed this

................... yesterday they told mum to start making plans

Today 26th July we finally meet with a cancer doctor to find out what is going on.. will they be giving any form of treatment. The pain is better managed at the moment.

I feel broken... Mum and Dad have no savings and don't own their own home they work full time although not now. We have been advised they are not available to have benefits so I don't know what we can do.

We just want to bring mum home and no-one is mentioning it .... will they make this happen

buttercup01
Posted by

Think u need to ring the Helpline 0808 808 0000  to get more info, especially  re benefits/ finances.  Can't believe they're not eligible for some sort of benefit!

Thanks for updating us xx

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

Btw, don't forget as ppl said earlier to write down your questions

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

Btw, don't forget as ppl said earlier to write down your questions

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

Your Mum and Dad mightn’t be allowed means tested benefits but I think there’s a good chance your Mum could get some sort of disability benefit. Macmillan have financial advisors. 

buttercup01
Posted by

Re benefits,just  spotted this on the Maggie's centres website -

community.maggiescentres.org/.../What-benefits-apply-after-a-cancer-diagnosis-60

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

I am so sorry that you are going through this, it's a horrific situation to be in.

I don't know who gave you the advice re benefits but it sounds very very wrong. Definitely get in touch with Macmillan to talk about the financial side, it is a total minefield.

This will sound so awful,  you mentioned that your mum has been told to make plans, so please forgive any assumption, but once you life expectancy is 12 months then the financials change so information you were already given me be different now based purely on that.

Your Mum is almost certainly entitled to PIP - Personal independence payment (not means tested). I don't know if you live in a tax credits of Universal credit area - but at the very least she should be entitled to New Style ESA if not UC, which isn't affected by your Dad's income - I've found this is something that Macmillan are less familiar with so a call to the National Insurance helpline might be useful.

I know it's probably the last thing that you want to have to be thinking of at the moment and I really hope that you can get something in place to ease the worry xx

Jo
x
Gillianh85
Posted by

Ok..... mum was moved to Fairfield hospital in Bury on Wednesday at 4pm.. They did not read her notes and didn't even provide an air mattress and then she didn't get any pain relief until we complained at 10pm because a doctor had not seen her yet shocking in my opinion and she was placed on a medical acute ward until she went to her new one at 7.30pm last night.

So what has been happening not at alot. We were told to make plans, then told unless she gets home and shows she is independent then no treatment gets offered. Then the next day they said she might have two cancers kidney and bone they could take biopsy take kidney out and treat her... but then yesterday we were handed a ds1500 form.

However there is a possibility she will be coming home bit of good news right?

buttercup01
Posted by

Did she only go to the Christie as an outpatient then?

What's a ds 1500 form? (Pardon my ignorance)

It's shocking the way she's been treated. Hope she can go home as it does sound better than being in Bury hospital....

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gillianh85
Posted by

Christie was just one time to try and help reduce the pressure on the spine with the help of steroids the steriods are nearly finished now and the little movement she had has gone. 

The ds1500 is a form given by the professionals to help with benefit or to make it quicker, think I read somewhere that is it for people who expect to live within 6months although people do exceed that. It was 3 weeks ago today that every thing happened.

We have now issued a letter of complaint to GP and Rochdale infirmary for sending her home with constipation.

I feel I'm being robbed of time. Appartently there was a meeting help yesterday to say whether they think mum will be well enough for any further treatment we get told today. Please cross everything for me