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Leptomeningeal metastases - is anyone else living with this?

2 Feb 2023 16:50

Husband has secondary cancer to the brain. Prognosis late last year was 'a few months at best'. He, the consul said didn't expect him to live six weeks! But he's still alive ( thankfully), but I'm scared. 
He's moody and aggressive at times, is losing weight although he eats quite well.

Is this normal? Is any else living with this?

any guidance gratefully received xx

Leptomeningeal metastases - is anyone else living with this?

3 Feb 2023 14:47 in response to Cindylou

Hello Cindylou

I'm sorry to hear about your husband's diagnosis. Undoubtedly this has been a difficult few months for you both and it's understandable that you may be experiencing a range of emotions as you care for your husband. 

Mood and personality changes can happen when someone has secondary brain cancer and I know that we have had members post here on the forum in the past who have experienced similar symptoms with their loved ones. 

What support do you have around you Cindylou? Are the palliative care team or district nursing team checking in to see how you're both doing or actively involved in your husband's care? If they are then do reach out to them to talk through your concerns about the changes that you're seeing and what this may mean for his prognosis. 

If they're not actively involved and you think that you're reaching the stage where you would like to talk about getting some support then reach out to your husband's GP or the Consultant's secretary and ask for some advice or a referral. 

Here at Cancer Research UK we have a team of nurses that you can call to chat things through with if you think it may help. They're available Monday to Friday 9 am to 5 pm on 0808 800 4040 and I'm sure they will be happy to offer any support and guidance that they can. 

It's easy to feel like you're alone when you're caring for a loved one. Please do lean on family or friends if you have support available around you. Keep posting here on the forum - we're always her to listen and we'll do our best to support you through this difficult time. 

Sending my best wishes, 
Cancer Chat moderator 

Leptomeningeal metastases - is anyone else living with this?

3 Feb 2023 15:19 in response to Cindylou
Hello Yes Macmillan nurse has been calling. Because he’s managing well he doesn’t like much interference from outside care. He’s a very proud man tbh. I’m scared as I’m counting the months, scared incase times going to run out soon.

Leptomeningeal metastases - is anyone else living with this?

3 Feb 2023 15:36 in response to Cindylou

Helo Cindylou

It's good to hear that you have some support in place and that up until now your husband has been coping well.

However that doesn't mean that you have to struggle on alone. If you need additional support to help with things then do chat with the Macmillan nurse. They will be used to helping with situations where the patient may be reluctant to accept outside help but the primary carer needs a little more support. The role of the Macmillan nurse is to support you as well as your husband. 

Don't forget that you can also ring our nurses for support or just to talk through how you're feeling at any point. 

Best wishes, 
Cancer Chat moderator