Hi , my husband has been diagnosed with secondary cancerous tumor to his neck and brain lesions. He had a fit on Monday and is on various anti seizure drugs, as well as steroids to try to hold the fits at bay until his radiotherapy starts. I'm terrified of leaving him for a second now and his behaviour is changing. Any help or advice for me?
Hello EJMeObe29
My name is Adele and I’m one of the Cancer Information Nurses on the Macmillan Support Line. Welcome to our online community and thanks for posting your question.
I am sorry to hear about your husband and can understand completely why you are concerned about leaving him.
If you have noticed any new, changing or worsening symptoms it is important that you seek urgent medical advice. In the first instance this may be his treatment team at your local hospital. However, if you are unable to get through to them, or do not have their contact details, do ring NHS 111 for immediate assessment and support.
Having a secondary cancer in the brain can cause many symptoms, including seizures and changes to personality or behaviour. The aim of the steroids is to reduce the inflammation and relieve some of the symptoms he is experiencing, whilst the anti-seizure drugs will reduce the likelihood of him having another seizure.
Sometimes the medications need to be adjusted or changed, so it is important that you tell them if he is still experiencing seizures, or if you have any other concerns, so that they can adjust his treatment if necessary.
When he has the radiotherapy the treatment team will also keep a close eye on him and monitor any side effects he experiences. I would suggest that you have a low threshold for telling them of anything you have noticed, so that they can ensure he has the care and support he needs at this time.
It is understandable that you are worried about everything that is happening. It can help to discuss your fears with his treatment team. It can also be helpful to know more about how to look after someone who is having a seizure. There is information about what to do if someone has a seizure here and Epilepsy Action have a video explaining the principles that you may find helpful.
Sometimes people start to need more care and support at this time. Some people can find they need help with everyday activities, or they may need aids to maintain their safety around the home. People can also have personal alarms, where they can alert people if they need assistance, which can give you reassurance if you are not with him. It may be helpful to ring the adult social care team at your local council and ask for a care needs assessment, to determine if there is some help that they can provide at this time to make it easier for you both.
When people have a lot of symptoms and care needs it is sometimes appropriate for them to be referred to the palliative care team to have their symptoms reviewed and to ensure they get the support they need. If your husband does not already have access to this team, I would suggest that you have a conversation with either the GP or his specialist nurse to discuss if this would be appropriate at this time. The palliative care team can also offer emotional support, which often extends to family members.
Caring for someone with cancer can have wide ranging impacts and it is also important that you have the support you need at this time. It can help to talk through how you how you are feeling and the effect everything is having on your everyday life. Carers can access a Carer’s Assessment, from the local Adult Social Care Team. This is specifically looking at your needs and the support you need at this time. Organisations like Carer’s UK and the Carer’s Trust have useful resources and can sign post you to local support services.
You may also find it helpful to talk to someone who has had similar experiences to you. Our online community have forums for different cancer types and experiences. These include a carer’s only forum, which you may like to explore.
This is a lot of information and sometimes it can be helpful to talk this through in more detail. If this is something you think would help, then please don’t hesitate to get in touch via our support line on 0808 808 0000. We are available 7 days a week, 8am-8pm.
I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.
Best wishes,
Adele
Cancer Information Nurse Specialist
You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm), send us an email or contact us through webchat.
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