Partner has stage 4 kidney cancer

[sparkellie]

Hi. I'm completely at a loss right now and hoping just writing everything down will help, so sorry if this is long!
My partner went to the doctors about 5/6 weeks ago with lower back pain, they thought it was kidney stones, and ordered a ct scan. The scan showed enlarged lymph nodes, and he had blood tests and was referred to haematology, and for a chest x-ray. At 6am the morning after his blood tests he had a phone call from out of hours asking how he felt, and telling him to go to hospital if things got worse. He was due to go to the doctors for more blood tests for his haematology appointment 2 weeks ago on Mon, but didn't feel well enough, so rearranged for the next day when i wasn't at work so i could go with him. On the Tues he was too breathless to get to the doctors and struggling to breathe so I called an ambulance. Long story short he was diagnosed with a huge blood clot on the lung and admitted and put on blood thinners. In hospital they were working on the assumption that he had lymphoma and he saw the haematologist who told us how treatable lymphoma is etc etc. He had a biopsy last Tues which showed that he actually has kidney cancer, which has spread to his lymph nodes. He also had a ct scan which showed lesions on his lungs. Due to this his care has been transferred over to the renal specialist, who said basically its terminal and palliative care only. He started a chemo tablet yesterday, the lowest dose, to try and stop any further spread, but nobody has even told us where exactly its spread to or what to expect. It doesn't help that he doesn't want to know too much, and I don't know if he's really taking it all in. Everything has happened so quickly.
I have 2 kids (14 with asd and 11) and they know about the blood clot and the biopsy, but nothing else. I know I need to tell them what's happening, but need some support with the best way to do that, I don't want to fuck it up. I'm going to ask for a referral to macmillan to try and get some help with that, but have no idea how long he has left. The consultant wouldn't say anything other than see how he reacts to chemo and that he is weak, and when he asked if he would get out of hospital would only say 'that's the aim'. I know they can't give any absolutes but I feel like I'm floundering around with no idea what to expect.
Any advice from anyone who has been in a similar situation would be gratefully received. Thanks if you managed to read this all!!

I am so sorry, such a shock for you all.

You cannot control the medical side of what happens and when etc, but if you can get a grip on finances, you may feel stronger.

If you are not married have you made wills, would it be beneficial to marry now?

Do you have access to the bank account.

With regard to the children I would tell them he is ill, taking medicine etc and as the illness progresses when you feel they are ready let them know it is terminal.
How awful for you all 💐

I'm so sorry to hear about your DH but speaking from my experiences of dealing breast cancer I would suggest that you ask for a letter from any consultants that you are seeing to follow up all appointments with details of what has been discussed. This way you have all the details to refer back to and are not struggling to remember details.
Ask about local Hospice care because they are the experts here and see what they have to offer. While undergoing treatment for Breast cancer I was able to have complementary treatments, join in gentle activities such as Tai Chi, meet up once a month with other BC women, access someone to talk to. They are also there for people such as yourself and family who are reeling from such news. When your husband comes home - they can help with care at home and offer support throughout treatment. Chemo is rubbish and can make you feel worse but it is treatment to get rid of cancer or provide palliative care to carry on being a loving Dad to your children. MacMillan can help here too. Push for the help because you need support now for you and your children - you won't mess this up - you are their mother. Sending you hugs and a handhold.

I'm so sorry, this is devastating 😢 Push for the support in telling your children, look after yourself xxx

So sorry for you. I have recently been through similar with DM.

1. Contact Macmillan directly for support. There is probably a hub in your hospital. They will help you tell the children. They will also be able to get you the Macmillan grant which is £350. Not much but it pays for stuff you will need.

1. PiP or Attendance allowance- Macmillan/CAB will help you apply for these. Macmillan actually did the application for me so DM and I didn't do anything else beyond have a phone call

1. Your DP may not want to talk about details of his illness etc and my DM was the same. But if you can gently discuss the future (funeral wishes, hopes for the children etc) then it will help you.

I'm thinking of you

Thank you.
No, we don't have wills, I'm always saying I need one, mainly to put in writing what should happen with the kids if anything happened to me. We have a joint account as well as our own separate accounts, so access to money isn't an issue at the moment, though may become more of an issue if I am off work for too long.
The kids aren't his, sorry, i should have said that, but they adore him, we have been together about 7 years or so, so while we aren't married, he is very much a step dad to them, and takes my son fishing during holidays etc. That is my plan for now, until I have spoken to macmillan, I feel completely out of my depth on how to tell them. But I'm scared to leave it too long, not knowing how long he has. I know they will need time to process the whole thing.

Also ask about hospice care- it isn't just for people when they are actively dying; my DM spent 3 weeks in one for symptom control then went home for a short while eith carers etc. Hospice allows you and your kids to spend quality time with DP without having to be carers

Thank you for that advice, I will see what hospice care is available in our area, and what advice they might be able to give me. I think because he is still in hospital and seeing whoever comes round it's hard to keep track of everything. He has seen someone every day, but I'm not always there at the time, and as I said he doesn't want to know much ☹️

Sorry, me again. Speak yo your GP. Mine was very quick to sign me off work due to DM being in hospice/palliative care. It took the stress away as I was just in dick pay and didn't need to worry

Ask to be put in touch with the palliative care team at the hospital. They are the ones that can refer him to the hospice and they will keep on it until he gets the care he needs

Thank you. I did speak to macmillan briefly on Mon about a referral, but they had him down as a haematology appointment, and nothing about his admission etc. I'm going to speak to a nurse on his ward today and ask them to do a referral for him for the kidney cancer.
I'm trying to be gentle with him, but again, with no time scale, feel like I need to push him harder to get the practical things sorted that only he can do (like the will and leaving something for the kids whether it's a letter or pictures, just something).

@Meem321 thank you. I will definitely get in touch with some hospices and see what they can do. It's just tricky with him not wanting to talk about it.
I'm going to try and get hold of a GP this week (I actually had this week booked as holiday anyway, so haven't had to worry too much about work thus far), and see if I can get signed off for a month, and then take it from there. At least that will get me through the school holidays.
He is seeing the palliative care nurses as they are dealing with his pain relief, so I will try and speak with them.
Thank you again.

My DM has kidney cancer with bone mets.

Immunotherapy seems to be very much the treatment of choice for this type of cancer. Has that been mentioned?

Do not be afraid to ask and push for answers. Be a nuisance if need be.

Also, hearing words like terminal and palliative is terrifying. I try to think of it as incurable, but treatable in a way that can extend life for many years yet.

Google "Macmillan Kidney cancer chat" and there's a forum that has lots of people experiences with lots of info on the most up to date treatments.

@sparkellie Sorry to hear this.

You need a lot more info from the doctors.
You can ask what grade the cancer cells are (between 1 and 4) because that shows how aggressive it is.

Also ask where it has spread. If it's only to his lungs at the moment, they can sometimes remove small tumours. I understand it's also in his lymph nodes.

You also need to ask what treatment he is on.
It's not likely to be chemo. That doesn't work for KC. It's likely to be a targeted drug and that can be combined with immunotherapy (as an infusion.) Ask why this is not being offered.

There is also a difference between 'terminal' and 'treatable'.
There may be no cure, but the right treatment could give him years.
'Palliative' often means no cure, but it doesn't mean he will die soon.

I know it's hard but you need to ask these questions- or he does.

The UK Kidney Cancer website is helpful and there is a Facebook group for it where you can ask other people questions and get support.

Check out the Ruth Strauss Foundation. It specialises in helping children who have a parent with cancer.

Just to give you hope, there are people on the Facebook site with Stage 4 and they have been alive for years after their diagnosis. But you need more information from the doctors. I'd push for this first, rather than looking at hospices. Hopefully that will be a long way down the road.

Info on all the benefits you could get now diagnosis is terminal. At the least your DH will qualify for a blue badge, free prescriptions and possibly much morehttps://www.mariecurie.org.uk/help/support/benefits-entitlements/benefits-social-care-system/what-benefits-can-i-claim#:~:text=You%20can%20apply%20under%20the,Attendance%20Allowance

Immunotherapy - ask about that.
Second McMillan - they were very good when I needed them
PIP and Blue Badge - can be done quickly (ish)
Wills are very important especially if unmarried

So very sorry OP

No one has said anything about immunotherapy. Possibly because of how advanced his cancer is and how widely its spread?
I will attempt to ask about it as an option though.

The Macmillan grant is means tested. You need to have less than 8k in savings per household and less than £440 a week per household income.

I agree, but trying to get anything out of the consultant is a nightmare, and a large source of my frustration. When i asked where it had spread to all he would say was 'its distant'. I am hoping macmillan will be able to help as I believe they would have access to his notes. Failing that I'll ask for a copy of them.
The chemo tablets he is on are, I believe, to try and stop any further spread, rather than treat what's already there. As I understand it kidney cancer doesn't generally respond to chemo well, but possibly for the lymph nodes?
I am trying to ask the questions but just can't get a straight answer 😕
Thanks, I will try the website. I don't have Facebook.

Thank you. I will definitely do that!

Thank you, that's really encouraging to hear.

Thank you. I will try and look into this over the weekend when the kids are at their dad's.

Immunotherapy is definitely something I will look into, it seems to have come up as a suggestion a lot here, so hopefully will be an option.
I spoke to the palliative care nurse today who is going to do a referral to macmillan tomorrow, so hopefully that will help get the ball rolling too.
I will also attempt to get him to have a discussion about wills!
Thank you.