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

Thanks for explaining re the Christie n the ds1500 form

Keeping everything crossed for you re results of yesterday's meeting xx

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

HI

Gillian

Forgive me for being so late responding to your post but I have been distracted. It appears that I was overdosing on one of my pain killers. I should have realised from all the fairies.

It was when you mention an operation to embilise that bells started to ring.

I dunno what with bells ringing and fairies perhaps I am still overdosing.

Anyway, before my spinal op I also had an op to embilise the met on my spine. I then caught meningitis and spent four months unconscious in hospital but that is irrelevant. I too am being bounced between hospitals. Surgeons for the spine and my oncology guy. In my case just the two in yours it seems more. Anything to do with cancer trust the Christie. One of the best in the country. Get one for surgery and one for Oncology.

Now a lot of this depends on how strong your mum is and able to stand surgery.

A biopsy will give you definite information on what is the primary source of the cancer.

Lets assume it is kidney then surgical removal is usually the best option once your mum is strong enough. After that then various forms of chemotherapy are available (also sometimes before. My choice would be Opdivo BUT it is usually a second line treatment) and in this case you are lucky. In the last few years there have been massive improvement in the range and effectiveness of kidney treatment drugs.

The radio therapy on your Mums back is to try to control the growth of the met. ( metastatic lesion) The tattoo are so they hit the same spot every time.

However I am told there is a certain town where if you “Flash your tats you get free drinks” More of that later.

I wouldn’t eat anything in hospital until my daughter brought in picnics which we shared. My wife joined in and when possible we had our evening meal together . A little bit of normality restored.

Your Mum is unlikely  to be able to travel in October so make the claim on the insurance company now. These things always happen  at the best of times. NOT.

I would say I am comfortably off but I get £87.50 per week in attendance allowance once she gets out of hospital. Also I have a blue badge.My local Prospect lady arranged all that all I did was sign a form.

I am nearly nine years into dealing with this ...... but the sun still feels good on my face and I am lucky to have the love of a bad woman.

Take it one day at a time.

PS You have had some good advice from some of the other posters too.

I wish you and your Mum well.

Titus

May the sun shine on your face and the road rise up to meet you

Gillianh85
Posted by

Update!!!!

Well it's been abit crazy of late.... MY MUM IS HOME! 

We had biopsy yesterday so fingers crossed for some good news.. she returned home on Tuesday 

buttercup01
Posted by

Glad to hear your mum's home. That must b such a relief for u, after all the traipsing back n forth to various hospitals in the north west. Fingers crossed as u say  re biopsy results. When will u hear?

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

Ah that's lovely news for you. Will keep fingers crossed for the biopsy result too.

Jo
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Gillianh85
Posted by

Update!!!!

So where do I start... the biopsy was my last update that was a success we found the primary... it is the Kidney the issue that it caused to move to the spine and wrap around the cord meant my mum would never walk again (we could of dealt with that) however we were given hope we were told that hopefully knowing the primary meant treatment could be given in tablet form at home. I work in pharmacy so I had a rough idea what it would or could of been.

Fast forward.... Wednesday 28th August

Christie hospital 

Unfortunately the cancer is aggressive stage 4 with no treatment available to her now it's far too far advanced for anything to work. Cancer is kidney cancer but it's all over her spine possible the ovaries and uterus but it is definately in blood and bones to. We have been given a time scale which isn't very long I'm broken I really am. We have and mum doesn't have any savings she has been awarded pip but we don't know about universal credit yet we have no money for funeral I don't know how much these things cost.

I'm scared I'm holding on to nothing and my mum is my world.

Something the Christie doctor did say is that my mum's doctor treatment she has received has been shocking and we should seek legal advice. Speaks volumes doesn't it.

Thanks everyone 

buttercup01
Posted by

Hello again gillianh85, I'm so sorry to hear the result of your mum's biopsy. It is unusual for kidney cancer to b aggressive.

Don't go worrying about funeral costs. There's something called a bereavement grant. Ask your local CAB or better still ring the helpline on 0808 808 0000, 8am to 8pm n ask them.

Ask the helpline re your legal position too, especially given what the Christie doctor said

..Big hugs n love xx 

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

Ah Gillian I am so so sorry to hear your news. Spend all your energies on your Mum living at the moment and in the moment. Try to enjoy the time you have together. Lots of love, laughter , tears, leave nothing unsaid. It will give you great comfort in the future. 

Make part of her legacy your complaint so other families don’t have your experience. But there is no rush for that. 

Thinking if you. 

Jo
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